Can't believe I'm a SUCCESS story - Feet pain 15 years 90% gone!!

WantToBelieve · Aug 2, 2018

Hi there...I had Ed and I would recommend him. If you can ever get in touch with Alan, he is INCREDIBLE!!!

WantToBelieve · Aug 2, 2018

As a continued update...since I posted this I remain nearly pain-free. I'm 100% pain-free probably 90% of the time. I still can't believe this is possible. I struggle for over 15 years of my life and I'm only 40! Nearly half my life was spent in pain and now, I'm pain-free most of the time. I never ever in my wildest dreams thought I'd get to this place. I just didn't think it was something I'd even strive for. If anyone is in Chicago, Dr John Stracks is who worked I primarily worked with and he is outstanding. Look him up. Even if you aren't local, he has frequent success story panels and question/answer type sessions that you can phone in to.

Click#7 · Aug 3, 2018

WantToBelieve said: ↑

As a continued update...since I posted this I remain nearly pain-free. I'm 100% pain-free probably 90% of the time. I still can't believe this is possible. I struggle for over 15 years of my life and I'm only 40! Nearly half my life was spent in pain and now, I'm pain-free most of the time. I never ever in my wildest dreams thought I'd get to this place. I just didn't think it was something I'd even strive for. If anyone is in Chicago, Dr John Stracks is who worked I primarily worked with and he is outstanding. Look him up. Even if you aren't local, he has frequent success story panels and question/answer type sessions that you can phone in to.
Click to expand...

Do you still feel anything in your feet like walking on bone without the pain ? Just curious....

WantToBelieve · Aug 4, 2018

Click#7 said: ↑

Do you still feel anything in your feet like walking on bone without the pain ? Just curious....
Click to expand...

I do not feel that sensation when I’m pain-free. The times when the pain does creep in, yes, that is how it feels. I can’t even comprehend how this sensation and the pain has stopped. It’s just remarkable what the brain can do!

Imgonnawin · Mar 12, 2020

WantToBelieve said: ↑

I don't even know where to begin...since my pain started so long ago back in 2001! I recently spoke on a TMS success stories panel for my doctor and will paste my talk below. It's LONG. Like VERY long. Like War and Peace long. I was supposed to talk for about 30 minutes. I hope you find it beneficial. If you'd prefer to skip over my medical history (I really wanted to paint the picture of how dire my situation had become), then scroll to the bottom to learn how TMS ultimately helped me to be 90% pain-free!!! I'm happy to answer any/all questions.

Hello, my name is Jodie and my pain is in both of my feet. The pain feels like I’m walking on bone on concrete. Like there isn’t enough padding in my foot. This is my first time speaking on this panel, but I’ve attended many talks over the past nearly 3 years. What always stood out to me when I listened to the speakers was the intense level of pain they had all been in, all the medical solutions they had tried with little to no success and ultimately how their pain was nearly gone after working on it from a mind-body standpoint. For me, it was very compelling and went a long way in helping me believe in TMS. I hope you don’t mind me reading this, but my story spans 16 years and is just too much info for me to recall from memory. Bear with me as I walk you through my journey and all the medical solutions I tried. My goal in sharing all of this with you is to help each of you to see, no matter where you are at with your pain, no matter how long you have been in pain, or how much pain you have been, there is still hope for you and you can start to feel better.

My feet pain started in 2001 when I was training for a marathon. I was 25 years old and in great shape. It started as heel pain in both feet. It was irritating but generally I carried on with life. Every doctor thought it was plantar fasciitis, even though my symptoms didn’t really line up. I began NSAIDS, stretching, night splints, massage therapy, orthotics and cortisone shots all with no relief.

I was a pharmaceutical sales rep at the time and it was getting hard to be on my feet all day long.

I should also mention that my pain was very perplexing to doctors bc it only hurts when I stand. When I sit down the pain is instantly gone. This is not how feet pain typically presents so the doctors were stumped.

I ended up leaving my job as a pharmaceutical rep to start my own personal training business and I started competing in fitness competitions. Probably not the best move for someone with feet pain, but I really was determined not to let the pain stop me. I had new orthotics made and they seemed to make the pain worse.

At this point, I had been in pain for 5 years and going to doctors was like a part-time job. Each new doctor had new ideas and each one felt very confident they knew what was wrong and how to fix it. I constantly was getting my hopes up and then crushed when my pain didn’t improve. It was an emotional roller-coaster for me. I really put my faith in each new doctor and their ideas and then was so disappointed when they could not help me.

I had xrays, MRIs and was prescribed different medications but nothing was found and nothing seemed to help. The pain was getting worse and now it was no longer just in my heels but the entire bottom of feet hurt.

I ended up getting referred to an orthopedic surgeon who surprise, surprise rec’d surgery. He wanted to put an implant in my ankle that would prevent my arch from collapsing. I got a 2nd opinion and that doctor did not agree and wanted me to have a complete blood work up to rule out lupus and arthritis. Again, all those tests come back fine. They couldn’t find anything wrong. This was the most frustrating part for me. The not knowing. I almost hoped they’d tell me I had lupus or arthritis so I could have a diagnosis and stop searching for the cause of the pain.

In 2008, I was linked up with a chiropractor who was certain my issue were due to muscular imbalances and improperly made orthotics. He treated me for nearly two years and we worked on everything from feet, calves, hips, glutes and hamstrings with no improvements. The whole process was exhausting but I refused to give up and continued looking for a cure.

So, I moved on to another doctor and tried heel cups, compression socks and injections with no success. I was referred for another EMG and nerve conduction where, They stick needles in your muscles to determine your muscles response to nerve stimulation. Since I had this test before I now knew what to expect. I remember being so nervous, that I sweat right through that white paper on the doctors table. Of course the findings were normal and the doctor said he was certain I did not have Tarsal Tunnel Syndrome.

The pain was getting worse. The time I had on my feet before the pain set in was down to only minutes. Training clients was getting harder and I’d be in excrutiating pain during the sessions, but no one knew it. I’d put on a smile, push the pain down and stand on the sides of my feet or tip toes to get through the sessions. I realized I had less pain in high heels so I started to wear heeled boots with my gym attire to train my clients! I looked ridiculous, but I would have done anything to have more time on my feet before the pain set in. My quality of life was completed affected at this point. My husband would drop me off at the door everywhere we went. Our world travels had to be adjusted from hiking Machu Picchu to beach trips were I could do more sitting. I would be anxious for parties because I knew there wouldn’t be many places or opportunities to sit. My husband would also be anxious. He knew how much pain I would be in and that I wouldn’t say anything to the person I was talking to. I would just suffer through it, but cry the minute we got into the car. I started to forget what it would even be like not to have pain when I stood up.

In 2010, 9 years after the onset of the pain, I had additional MRIs performed and the doctors finally found something. On the right foot, they stated there was a 9mm ganglion cyst and that it was likely pressing on a nerve and causing tarsal tunnel syndrome and they wanted to do surgery to remove it. I was beyond thrilled to have a tangible thing to go after. However, I got a 2nd and 3rd opinion and no one could come to an agreement on the diagnosis or solution. One doctor pointed out that my feet pain is equal in both feet, but the cyst is only on the right foot. What would be the cause of the pain in the left foot? I didn’t know what to do. I wanted so bad to fix the pain, but it just didn’t’ feel right to do the surgery. It’s such a scary feeling when you have become your own doctor and are left to make these decisions on your own.

I figured if I was going to have surgery for tarsal tunnel syndrome, I should go to the best. I searched the internet high and low and read everything I could on TTS. I was reading Podiatry Today which is a journal for podiatrists. I wanted to see who was doing the research and who was most cutting edge and current in the field. A name of a doctor kept coming up again and again. He seemed well-known, respected, and an expert in this field. I hunted down his email address and sent him a desperate email begging him to reply and to help me. I was blown away when he emailed me the next day!

He asked me to send him all my records and then we set up a time to have a conference call since he was located in Arizona. After listening to me describe my symptoms and reading through the mountain of medical history, he did feel that I likely had tarsal tunnel syndrome and wanted me to fly down for an exam. I left the call filled with optimism and hope. This doctor was so confident in being able to help me. He explained how he works on nothing but the toughest cases and how he prides himself in helping patients that have tried everything and are at the end of their rope. It felt so good for a doctor to really listen to me. To take the time of out of his schedule to talk to me for over an hour (free of charge, I might add!). He was or originally from Chicago and was a Cubs fan and we just really hit it off. I felt like he had been my friend for years and I just knew he would be able to help me.

In October of 2010, we flew down to Arizona. The dr, let’s call him Dr X, spent a good 4 hours with me. Dr X did a bunch of tests, and in the end, felt the results of the tests definitely indicated that I had damage to some of my nerves. That combined with my verbal description of my symptoms and my history led him to suggest surgery. He recommended I have a subtalar joint implant. This meant he was going to place a small device into a space near the bottom of my ankle bone to prevent the pronation (or rolling in) of my foot. He believed this was causing pressure on a nerve leading to my pain. The surgery would require me to be off my feet for 4 weeks. His plan was to do it in the left foot first and if successful, repeat the procedure in the right foot after I recovered.

Dr X could sell ice to an Eskimo. My husband and I were confident in this findings, his abilities and his plan. We decided to move forward with the procedure.

I flew home and didn’t miss a beat. A few days after the procedure, I was on a knee scooter and back at the gym training my clients. After the 4 weeks non-weight bearing I took my first steps with the implant and very quickly realized the pain was still there. I was devastated! Now I had to rehab my foot and leg from the surgery and I still had the pain. Dr X said to give it some time. I went to 4 weeks of physical therapy, but the pain was definitely still there. I was discouraged, but was not going to give up.

6 weeks after the original procedure I flew back down to see Dr X. He repeated some of the tests and said he some improvement which led him to believe that the implant did work, but he felt I also needed to have a tarsal tunnel release procedure to further relief the nerve. Again, he is very very convincing and we agree to the procedure.

When the surgery is over, Dr X comments that I have veins in my feet that are consistent with what he would see in a 6 foot man. He feels it was definitely an issue of over-crowding of the nerve and that the release procedure should provide relief. I’m excited and anxious. I can’t wait to start to feel the pain melt away in my left foot.

Of course that was not the case, in fact, my pain seemed to have increased because the implant is causing me to walk on the outside portion of my foot and I’m starting to have cramping and loss of sensation in the area under my last two toes.

I’m at a loss and not sure where to go from here. Dr X still believes there is an entrapment of the nerve going on but feels it must be entrapment higher up in my leg.

Back to the drawing board…more doctors, more diagnosis, more tests. More time on the internet. I’m sure everyone in this room has spent countless hours on the internet trying to find their own cure. I was on chat rooms and forums and blogs. I was reading and reading and reading well into the night. I was to the point where I would come across a post on a forum that sounded just like me. I was excited to have found someone that could relate to my pain, only to learn the post had been written by me years ago!

Next, I was tested for popliteal artery entrampment syndrome, chronic compartment syndrome and a whole host of other syndromes. Each and every doctor continues to be confident in their diagnosis but each test comes back negative.

And then in June of 2011, I make the biggest mistake of all. I let Dr X and another surgeon operate on the nerve further up my leg. Desperation causes us to make some not so smart choices. But again, Dr X is very convincing and I simply was out of ideas.

The surgery was the beginning of the end of for me. I woke up to the doctor telling me he was 100% certain this fixed the problem. My husband was stunned that he would make such a statement but they said what they saw when inside my leg, proved there was indeed a blockage. They said they knew they had successfully fixed it. I cried with tears of joy! All this was going to finally be worth it and would have my life back. I would finally be able to walk and stand without pain. I could grocery shop and cook dinner and take walks again. I could go to parties and not worry about having to find a chair. This was going to be life changing.

But by the next morning, I realized I had lost feeling in my leg from the knee down through the foot. The entire front of my leg was numb. It turns out they had nicked a sensory nerve. Nerves heal themselves at a pace of 1mm a year so I was told the feeling would likely come back, but it would take a very long time. I know knew with certainty what nerve pain felt like. Burning, tingling, numbness. I couldn’t wear anything over my leg or ankle. Pants had to be rolled up and socks were out of the question. I was taking crazy high amounts of gabapentin to try to help with the nerve pain and applying topical pain medications. My leg was a mess.

In Sept 2011, Dr X is baffled as to why the pain was still present. He suggested I fly to San Francisco to see a few specialists who can perform a specialized MRI on the nerves and possibly do a few nerve blocks. The special MRI finds nothing wrong with the right foot but a whole list of issues on the foot/leg that has been operated on. I’m so angry. Clearly all of these issues are a result of the surgery and none of it has to do with getting to the bottom of my original pain. I feel light years away from a solution and the waters are muddied with these additional symptoms. I’m in so much pain from the nerve issues now. Crying over the pain is now part of my day, but somehow I keep training clients and going on with life.

In Oct 2011, I can’t believe I’m saying this, but we fly back to see Dr X in Arizona. Even after everything that has happened I still feel like he is working hard to find a fix for me. He says we can try something called Radiofrequency Ablation. With RFA an electrical current produced by a radio wave is used to heat up a small area of nerve tissue, therby decreasing pain signals from that specific area. We decide to try it as it seems pretty non-invasive. At first, I think I can notice some improvement in the pain, but within days I realize the pain is still the same. My disappointment, anger and frustration continue.

7 months after the nerve surgery in my leg, things take another turn for the worst. We go on vacation to Mexico and my feet start to turn bright red and feel like they are on fire. Its very scary to see my feet turn so bright red. Putting them in cold water or in front of the AC takes the redness away, but the redness keeps returning on and off during the week in Mexico. When I return, Dr X suggests seeing a pain management specialist to discuss the possibility of Chronic Regional Pain Syndrome. When I google this, I’m devastated. The syndrome sounds awful and I’m so scared about the possibility of living like this forever. I’m angry at myself for going through with the last surgery and I’m angry at the doctors for nicking that nerve. Mentally, I’m losing hope and my whole world is revolving around diagnosing, managing and resolving this pain.

I get in to see a Pain management doctor at Rush and after his exam he believes I have a mild case of Chronic regional pain syndrome. He can’t do any sympathetic nerve blocks because I’m 4 months pregnant at this time.

I feel like time is running out to figure this out. In only a few months, I will have a new baby. I’m becoming more and more anxious about how I will care for the baby with this pain. I’m so sad for all the things I will not be able to do. I’m picturing missing out on stroller walks and trips to the park. I’m feeling bad for what my baby will not be able to experience because of me. I’m scared of the unknown of it all. I’m wondering what I did wrong for God to allow this to happen to me. I’m jealous of my friends and family and how their lives are just moving forward, seemingly worry and stress-free.

Right up to the month the baby is born, I’m still searching for answers, having my third nerve conduction test, an arterial Doppler and an attempt at a weight-bearing MRI. Nothing is found.

My feet are turning red each night and are burning so bad that I’m crying from the pain. I have fans blasting on my feet each night. No one can tell me why I’m having this response in both of my feet (even the one that didn’t have surgery). During my internet searches, I come across a rare condition called Eyrthromelalgia and it sounds exactly like what I’m experiencing. I send all the information to a couple of my doctors and they all agree, it does sound like I have what they call EM.

Erythromelalgia is a rare and devastating disorder that typically affects the skin of the feet or hands, or both, and causes visible redness, intense heat and burning pain. The cause of EM is unknown but in many cases it can be caused by an underlying nerve issues. In my case, the botched surgery was likely what kicked it off. Temperatures of over 70 degrees or even mild activity, including walking can cause the symptoms of redness and burning pain to appear. There is no known cure for EM and each person is different in the types of medication combinations that may help the symptoms.

I felt as if my life as I knew it was over. I now had feet pain that hurt the moment I stood up, complications from nerve surgery and a very painful lifelong condition that I would need to try to manage. Even though I have the most supportive husband in the world, I felt alone. My friends and family no longer knew what to do or say. I found many of their comments to be insensitive or completely aloof to my situation. I remember when my sister literally asked me if I wanted to take a walk. I stared at her at a loss for words. People simply could not grasp what was going on with me. Since I really had no visible symptoms, I think people would just forget what I was experiencing. There were a lot of tears shed and a lot of fear around the pain and the future.

In Sept 2012, I had our baby girl. I’d love to say that was a great experience, a happy time, in the midst of all this pain, but it wasn’t. Our daughter had breathing issues and was taken to the NICU. For those of you who have experienced that, you know just how stressful having your new baby hooked up to machines is. I was a mess, both physically, mentally and emotionally. During the 9 days we spent in the NICU, my blood pressure started to rise. The doctors were unsure what was happening and wanted to put me on a bunch of different medications that would dilate my arteries in order to bring my blood pressure down. Thankfully, I had sold blood pressure medication in the past, and I knew further dilating the arteries could cause irreversible damage to my Erythromelalgia condition. Disagreeing with doctors and refusing to take the medications they want to prescribe you is a difficult position to be in. I was so exhausted and stressed. My body really felt like it was shutting down. I could not stand at all to even make it down to the NICU. I was now forced to be in a wheelchair.

Thankfully, our daughter was released after 9 days, healthy as can be, but my situation was becoming worse. Once home my blood pressure was bouncing all over the place. Alarmingly high at night and so low in the mornings that I passed out a few times. After a week of being home and the doctors at Northwestern not sure how to help me with my complicated case (they had admitted to never having treated a patient with EM before), we decided to make an emergency trip to Mayo clinic in Minnesota, where there was an expert in EM.

This was probably the saddest and scariest time in my life. I had to leave my two week old baby with my in-laws. I was being robbed of those sweet little newborn baby days, but I was in no shape to take care of a baby. My husband put me in the back seat of our car and I remember being in crazy amounts of pain. I was experiencing stabbing pains, shocks of pain, tingling sensations all over my body. I had electrical shocks of pain in my feet and they were on fire. I remember telling my husband that I had a dream that God was telling me that I have to be okay with the fact that I might not make it. It really felt like my body was just shutting down.

You can’t just show up to Mayo clinic and expect to be seen. Every difficult case in the world wants to be admitted there. We thought we would try to get in the back door so to speak, by going to the ER and hopefully being admitted. It turns out, lots and lots of people try this technique. We waited for hours before being seen in the ER. The doctor was not sympathetic to my situation and said I was in stable condition and that my blood pressure was not elevated enough to be an emergency. We begged him to refer us to a doctor at Mayo but he refused. He said he simply could not let everyone who came into the ER have a referral. I asked him what he would do if I was his daughter. I told him we were out of ideas and had a two week old baby at home. I told him no one in Chicago could help me and that we had to see the EM specialist at Mayo. He left the ER without saying anything. We were crying and packing up our things to leave when his nurse came back in the room. She said in 20 years of working with him she had never seen him give a referral, but he gave us one. It was truly an answer to prayers!!!

I spent 5 days at Mayo clinic having every test under the sun. I could talk about this for 2 hours but I won’t. I could not get into the EM expert but saw his associate. She agreed, it appeared I did have EM and gave me some topical creams and a new medication to help with the pain. She told me there really is no cure for EM and that patients have to adjust their lifestyles to manage the pain. I knew that from what I had read online but hearing the definitive words from the doctor just put me over the edge. I was crying and sobbing in her office.

The cardiologist I worked with Mayo was great. He said I had post-parteum hypertension and it would likely go away in a few months. He said my elevated blood pressure is not going to kill me overnight (and that we can just start on mild diuretics and medications that will not interfere with my EM. His calm demeanor and simple plan brought my anxiety down. He sent me to a therapist as part of my work up and she determined all of these events – the feet pain, the EM, my daughter being in the NICU, the elevated blood pressure is the perfect storm of events for me. She said that by nature I’m a ‘fixer’ a ‘doer’. I see a problem, I look for a solution and I fix it. She said the fact that all these things were happening to me and I can’t control them or find a solution for them, had put me in a constant state of fight or flight. She explained how this was wreaking havoc on my body. She suggested I take a small dose of anti-anxiety medication.

Once I’m back from Mayo, I have resorted to a combination of crawling around my house and a wheelchair or knee scooter for outings. It is extremely hard for me to take care of my daughter so we have to hire someone to come in and help me. I hate having someone in my house all day. I hate the loss of freedom and I hate depending on this stranger to help me with my daughter, but I really have no choice at this point.

12 years after my feet pain first started, I decide there is nothing left to do but learn to manage all of this pain. I’m admitted into a 40 hour a week, month long pain management program at the Rehabilitation Institute of Chicago. In the program, I’m surrounded by people with amputations, fibromyalgia, chronic regional pain syndrome, and people who have survived serious car accidents. It’s hard for me to believe I’m here with this group of people. How could feet pain have turned into this? The 4 week program does little to help with my physical pain, but it helps me tremendously in the mental and emotional arena. Every session I go to with the therapist, ends in tears. I have lot of sadness, frustration, anger, and fear around all of this. In the program, with the help of relaxation classes and bio-feedback, I’m able to bring my blood pressure back down to within in normal limits without any medication.

The pain program finishes up in Feb of 2013 and by April the Erythromelalgia is GONE! 100% gone. I was told less than 1% of people ever see the condition cured, but it was gone. I was doing nothing to treat it somehow and it was just gone. We were certain it was an answer to prayers. You’d think after that, After I prayed and prayed for it to be gone, that I would be content. But I wanted more. I wanted the original feet pain fixed. I still wanted my life back. Don’t get me wrong, I have no words for how happy I was that the EM was gone. I don’t want to gloss over this or minimize it. We were beyond thrilled. I was grateful every single night my feet did not flare up. But, somehow, that wasn’t enough. And maybe it should have been, but I still wanted to be pain-free.

I went back on the doctor trail looking for more solutions to my feet pain. I won’t bore you with all the details of the additional tests, theories and solutions that I tried during this time. Suffice it to say, it was a long list. This went for another exhausting year and a half and in October of 2014, I stumbled upon Dr. Stracks and TMS. I had previously learned about Dr. Sarno and his work and I dismissed it as bunch of wishy-washy nonsense. But now, I was literally at the end of my rope. I had not one thing left to try. I was desperate and had nothing to lose. The day after contacting Dr. Stracks, I found myself attending my first discussion panel in this very room.

I had briefly read about TMS (tension myositis syndrome) or MBS (mind-body syndrome) before attending and the stories seemed so far-fetched to me. The idea that my brain was keeping me in a state of pain due to unexpressed emotions just didn’t compute for me. My pain is real, I thought. My pain is severe and not being caused by some undealt with feelings. But after listening to the speakers on the panel, I was hopeful and I set up an appt with Dr Stracks. He reviewed my medical history and asked lots of questions about my past, my personality traits, how I cope with emotions, what was happening in my life when the pain began. After a long discussion, he did think my pain could be related to TMS. The big indicator being that in 13 years, not one doctor had ever found anything wrong with me. Not one test had ever found anything. What is the likelihood that someone with my level of pain would have no physical signs of the pain? I held out that doctors just hadn’t found the cause yet. Or that they had missed something along the way or that there were not tests developed yet to detect what was causing my pain.

To say I was skeptical of TMS and this working for me was an understatement. Every doctor I had ever seen was always extremely confident in their diagnosis of my pain and their proposed solution. Multiple doctors had told me they were certain they could fix my pain. (For the record, Dr. Stracks did not claim that). But I had nothing else to try so I figured why not give this a shot. I attended Dr. Stracks’ class and worked thru Dr. Schubiner’s book – Unlearn Your Pain which was an eye-opening experience.

In the book, I was asked to take a look at my childhood and personality traits. It was no secret to me that I had to deal with a good bit of stuff growing up. I had parents that had me when they were 17 years old. There was a lot of drinking and partying along with a lot of yelling and fighting. Often times it was a scary environment to grow up in. But that was no secret to me. I didn’t feel like I was repressing any emotions in this area. I journaled extensively around the fear I had growing up and the relationship I had with my dad, but I didn’t feel like I was having any ephiphanies. I looked at my personality traits and many of those seemed common in people with MBS. I was able to check the boxes for perfectionism, having high expectations of myself, wanting to be liked, being conscientious, being hard on myself, being overly responsible (and for me since a very young age), often worrying, having difficulty making decisions, following rules strictly, and having difficulty letting go. It seemed obvious my personality type fit the profile!

I understood that in order for my pain to go away, I needed to believe in this being the cause of my pain at a gut level. Intellectually I completely was on board with TMS, but I knew I still wasn’t certain it was the cause of my pain. I still knew that part of me believed my pain had a physical cause. I was finding it easier to believe that repressed emotions could cause headaches or stomach pains, but I was having a hard time believing it would choose to cause feet pain and only when I’m standing. I had heard many success stories, but it was hard to find any information around TMS and feet pain. Dr. Stracks put in me in touch with one of if his former patients that had also had feet pain. I spoke on the phone with this patient at great length and this was very helpful in convincing me that feet pain could also be a mind-body syndrome.

I made a conscious decision to stop thinking of my feet pain as something to figure out from a medical stand point. I realized through journaling, that although my past was not something I had been suppressing, it certainly had not been easy and I had been minimizing the impact it likely had on me. Dr. Stracks and I talked about what had been happening in my life around the time my feet pain started. Nothing lined up perfectly, but my parents did get divorced in 2000 and my pain started in 2001. I had a lot of stress in my life right before that time. I had just finished college and had nowhere to live, no money to my name, no job lined up and my relationship with my dad had completely fallen apart. It still didn’t feel like these things were the catalysts to my pain. Dr. Stracks and I discussed the possibility that the pain may have started from a physical cause, maybe it was plantar fasciitis initially. But once the physical pain healed my brain didn’t get the memo. It kept sending pain signals down to my feet. And then the viscious cycle began. The pain perpetuated the worry and fear of the pain and the worry and fear perpetuated the pain. Overtime it became a learned pain. My body and brain expected that every time I stood, I would experience pain. I became fearful of how long it would be before that pain would set in. Without knowing it, I was constantly monitoring and gauging when/how the pain set in. Then the worry and fear thoughts would come…what if I can’t sit down, what if the pain gets worse, what if I can’t get through the grocery store and I have to sit down in the aisle, what if I get stuck talking to someone and I can’t get away to sit down, what if, what if, what if. If nothing else, it was clear I had a lot of fear and anxiety around the pain.

So, if you guys are anything like me, you are listening to me speak and you are thinking to yourselves ‘tell me exactly what you did to get better.’ I remember sitting there taking copious notes of exactly what the speakers did to improve. I wanted so desperately to be in their shoes. I was willing to do whatever they said. Unfortunately, I learned no two people heal in the same way. What worked for many of the speakers simply did not seem to work for me. My improvements were gradual. Very gradual. I didn’t have any huge successes from any one thing. I just kept moving forward. Things that really seemed to help me were the following:

- Decreasing the fear around the pain. This was a big one. When I noticed my brain going down the path of worry, I had to put a stop to those types of thoughts. Sometimes I had to do it hundreds of times a day. Each time a fear or worry thought came into my mind, I had to stop it dead in its tracks.

- The book the Great Pain Deception by Steve Ozanich – it’s a lengthy read but I appreciated just how dire his situation had become and how he was able to overcome it with mind-body techniques. I highlighted so much of the book and have gone back to the book again and again. It just really spoke to me and I could see myself on many of the pages.

- The forum tmswiki.org – This is a wonderful website where you can ask all your TMS related questions and get answers from others who have gone through it. There are success stories and an area to ask TMS therapists questions as well. This site was hugely helpful to me.

- Skyping with a TMS therapist – through the TMSwiki site I was put in touch with a therapist in California that specializes in counseling patients with TMS. The therapist was able to give me practical ways to work on TMS in small, manageable chunks. One thing we discussed was counting how many times I think about the pain on a daily basis and using positive self-talk or a each time these thoughts creeped into my head. Well, I ended up losing track of all the times I thought about my feet and the pain. I told him I didn’t know how to think of the pain less, but overtime, very slowly, I learned to decrease and now, nearly stop these types of thoughts.

- Another big one was putting into practice a concept called ‘outcome independence’ – I remember being on the tmswiki forum and the moderator was commenting on how to take the pain’s power away you need to overcome your preoccupation with it. Outcome independence means your definition of success is independent of a specific outcome. He said think how outcome dependent you tend to be with your pain. So your feet hurt when you take a walk. Every time you take a walk, you monitor it. You say, "Okay, today the pain started after a block. Yesterday it started after a block and a half." "Today it was a 3 out of 10 when I returned home. Last week it was a 7 out of 10 after the same distance."

When you have a good walk, you feel happy, optimistic, feeling like you're on the right track. When you have a bad walk, you feel down, defeated, bad about yourself and your prospect of ever getting rid of the pain.

He said This attitude, this outcome dependence is feeding the pain cycle. It's reinforcing its very purpose.

Change your definition of success. Work on it. Success is no longer measured by whether or not you have a good walk. Success is measured by how little you care.

At the beginning of your walk, tell yourself, "It doesn't matter how much it hurts afterward. What matters is how little I let it affect me; how I refuse to let my mood, my self-perception, my feelings about the future be determined by how much pain I'm in afterward." This was probably the BIGGEST change in thinking for me and I probably saw the greatest results from this.

- Next, Taking a break from working on it – after a year of working on my pain from a TMS stand point, we were moving from Chicago to the suburbs. I decided to stop skyping with my therapist for awhile bc things were so chaotic with the move. He was adamant about not stopping our sessions during a stressful time like a move. But guess what, on moving day I walked roughly 22,000 steps according to my husband’s fitbit and my pain was maybe at a level 2! I was blown away! Up until this point, I had been seeing some small improvements, but this was impossible to dispute! I was beating it and there was no denying it.

- And that brings me to acknowledging the small wins. I was always waiting for the big improvements that I had heard and read about, but that is not how things worked for me. I think it was in the Unlearn your pain book, it asks if you can ever recall a situation where the pain would typically be present, but it wasn’t. For example, I typically always have feet pain when standing in place for more than few minutes. And as time passes, the pain gets worse. But one time when I was at a party, after having worked on TMS for about a year, I realized I had been standing in place for nearly an hour with very minimal pain. My natural reaction would be to rationalize this away or dismiss it as a coincidence, but I had to start recognizing small wins as evidence that it was working! And the more evidence I could find, the greater my belief in TMS and that this process could actually work for me.

- Next I had to recognize that success is not linear – this was and still is a frustrating concept to deal with. Many times along the way I would have some good days, followed by some days of setbacks. The most important thing I did during those times was to try not to get hung up on the setbacks. I had to talk to myself and tell myself it’s just the TMS holding on for dear life. That it doesn’t want to be extinguished and it’s trying anything to stick around. It’s definitely disappointing when this happens. But it will happen and you have to push through it and stay on course. Go back to reading the books, get on the forum, go back to the basics of what worked for you in the beginning.

So, where am I at now…I’m holding strong at about 90% healed. I don’t know if I’ll ever be 100% and I don’t actively try to achieve that. Being at 90% healed, I’m able to live my life mostly the way I want to. I still experience pain when doing a long day of standing and walking. And this is frustrating for me, but I try to take it in stride and be patient. But this past fall I put myself to the ultimate test and we took our 4 year old to Disney World. We always said if we did Disney I would just have to be in a wheelchair and even with as well as I was doing, we agreed we wouldn’t be upset if I ended up needing one. Well, we did three 10-12 hour days at Disney without a wheelchair. I wasn’t pain-free, but I did it and it was a far cry from me crawling around my house on my hands and knees back in 2012. The crazy thing is, and this will prove how determined TMS is, when I got back from Disney, it was like my brain tried to re-wire the memory. I started telling my husband that the trip hadn’t been that successful and that I had been in pain. I was disappointed that I had to use a small trail stool to sit while in some of the lines. My husband thought I was crazy. He couldn’t believe I was forgetting how well I had done just a week earlier. TMS is down-right evil that way. But my setbacks are much less frequent now and I can’t believe I’m saying this, but some days go by where I don’t think about my feet at all!
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So great to see your success story!! May I ask if you beat the erythromelalgia too?

WantToBelieve · Mar 12, 2020

Imgonnawin said: ↑

So great to see your success story!! May I ask if you beat the erythromelalgia too?
Click to expand...

I did beat the Erythromelalgia too!!! Been free of it without one episode for 6 years now!!

Innybeany · Nov 22, 2023

WantToBelieve said: ↑

I don't even know where to begin...since my pain started so long ago back in 2001! I recently spoke on a TMS success stories panel for my doctor and will paste my talk below. It's LONG. Like VERY long. Like War and Peace long. I was supposed to talk for about 30 minutes. I hope you find it beneficial. If you'd prefer to skip over my medical history (I really wanted to paint the picture of how dire my situation had become), then scroll to the bottom to learn how TMS ultimately helped me to be 90% pain-free!!! I'm happy to answer any/all questions.

Hello, my name is Jodie and my pain is in both of my feet. The pain feels like I’m walking on bone on concrete. Like there isn’t enough padding in my foot. This is my first time speaking on this panel, but I’ve attended many talks over the past nearly 3 years. What always stood out to me when I listened to the speakers was the intense level of pain they had all been in, all the medical solutions they had tried with little to no success and ultimately how their pain was nearly gone after working on it from a mind-body standpoint. For me, it was very compelling and went a long way in helping me believe in TMS. I hope you don’t mind me reading this, but my story spans 16 years and is just too much info for me to recall from memory. Bear with me as I walk you through my journey and all the medical solutions I tried. My goal in sharing all of this with you is to help each of you to see, no matter where you are at with your pain, no matter how long you have been in pain, or how much pain you have been, there is still hope for you and you can start to feel better.

My feet pain started in 2001 when I was training for a marathon. I was 25 years old and in great shape. It started as heel pain in both feet. It was irritating but generally I carried on with life. Every doctor thought it was plantar fasciitis, even though my symptoms didn’t really line up. I began NSAIDS, stretching, night splints, massage therapy, orthotics and cortisone shots all with no relief.

I was a pharmaceutical sales rep at the time and it was getting hard to be on my feet all day long.

I should also mention that my pain was very perplexing to doctors bc it only hurts when I stand. When I sit down the pain is instantly gone. This is not how feet pain typically presents so the doctors were stumped.

I ended up leaving my job as a pharmaceutical rep to start my own personal training business and I started competing in fitness competitions. Probably not the best move for someone with feet pain, but I really was determined not to let the pain stop me. I had new orthotics made and they seemed to make the pain worse.

At this point, I had been in pain for 5 years and going to doctors was like a part-time job. Each new doctor had new ideas and each one felt very confident they knew what was wrong and how to fix it. I constantly was getting my hopes up and then crushed when my pain didn’t improve. It was an emotional roller-coaster for me. I really put my faith in each new doctor and their ideas and then was so disappointed when they could not help me.

I had xrays, MRIs and was prescribed different medications but nothing was found and nothing seemed to help. The pain was getting worse and now it was no longer just in my heels but the entire bottom of feet hurt.

I ended up getting referred to an orthopedic surgeon who surprise, surprise rec’d surgery. He wanted to put an implant in my ankle that would prevent my arch from collapsing. I got a 2nd opinion and that doctor did not agree and wanted me to have a complete blood work up to rule out lupus and arthritis. Again, all those tests come back fine. They couldn’t find anything wrong. This was the most frustrating part for me. The not knowing. I almost hoped they’d tell me I had lupus or arthritis so I could have a diagnosis and stop searching for the cause of the pain.

In 2008, I was linked up with a chiropractor who was certain my issue were due to muscular imbalances and improperly made orthotics. He treated me for nearly two years and we worked on everything from feet, calves, hips, glutes and hamstrings with no improvements. The whole process was exhausting but I refused to give up and continued looking for a cure.

So, I moved on to another doctor and tried heel cups, compression socks and injections with no success. I was referred for another EMG and nerve conduction where, They stick needles in your muscles to determine your muscles response to nerve stimulation. Since I had this test before I now knew what to expect. I remember being so nervous, that I sweat right through that white paper on the doctors table. Of course the findings were normal and the doctor said he was certain I did not have Tarsal Tunnel Syndrome.

The pain was getting worse. The time I had on my feet before the pain set in was down to only minutes. Training clients was getting harder and I’d be in excrutiating pain during the sessions, but no one knew it. I’d put on a smile, push the pain down and stand on the sides of my feet or tip toes to get through the sessions. I realized I had less pain in high heels so I started to wear heeled boots with my gym attire to train my clients! I looked ridiculous, but I would have done anything to have more time on my feet before the pain set in. My quality of life was completed affected at this point. My husband would drop me off at the door everywhere we went. Our world travels had to be adjusted from hiking Machu Picchu to beach trips were I could do more sitting. I would be anxious for parties because I knew there wouldn’t be many places or opportunities to sit. My husband would also be anxious. He knew how much pain I would be in and that I wouldn’t say anything to the person I was talking to. I would just suffer through it, but cry the minute we got into the car. I started to forget what it would even be like not to have pain when I stood up.

In 2010, 9 years after the onset of the pain, I had additional MRIs performed and the doctors finally found something. On the right foot, they stated there was a 9mm ganglion cyst and that it was likely pressing on a nerve and causing tarsal tunnel syndrome and they wanted to do surgery to remove it. I was beyond thrilled to have a tangible thing to go after. However, I got a 2nd and 3rd opinion and no one could come to an agreement on the diagnosis or solution. One doctor pointed out that my feet pain is equal in both feet, but the cyst is only on the right foot. What would be the cause of the pain in the left foot? I didn’t know what to do. I wanted so bad to fix the pain, but it just didn’t’ feel right to do the surgery. It’s such a scary feeling when you have become your own doctor and are left to make these decisions on your own.

I figured if I was going to have surgery for tarsal tunnel syndrome, I should go to the best. I searched the internet high and low and read everything I could on TTS. I was reading Podiatry Today which is a journal for podiatrists. I wanted to see who was doing the research and who was most cutting edge and current in the field. A name of a doctor kept coming up again and again. He seemed well-known, respected, and an expert in this field. I hunted down his email address and sent him a desperate email begging him to reply and to help me. I was blown away when he emailed me the next day!

He asked me to send him all my records and then we set up a time to have a conference call since he was located in Arizona. After listening to me describe my symptoms and reading through the mountain of medical history, he did feel that I likely had tarsal tunnel syndrome and wanted me to fly down for an exam. I left the call filled with optimism and hope. This doctor was so confident in being able to help me. He explained how he works on nothing but the toughest cases and how he prides himself in helping patients that have tried everything and are at the end of their rope. It felt so good for a doctor to really listen to me. To take the time of out of his schedule to talk to me for over an hour (free of charge, I might add!). He was or originally from Chicago and was a Cubs fan and we just really hit it off. I felt like he had been my friend for years and I just knew he would be able to help me.

In October of 2010, we flew down to Arizona. The dr, let’s call him Dr X, spent a good 4 hours with me. Dr X did a bunch of tests, and in the end, felt the results of the tests definitely indicated that I had damage to some of my nerves. That combined with my verbal description of my symptoms and my history led him to suggest surgery. He recommended I have a subtalar joint implant. This meant he was going to place a small device into a space near the bottom of my ankle bone to prevent the pronation (or rolling in) of my foot. He believed this was causing pressure on a nerve leading to my pain. The surgery would require me to be off my feet for 4 weeks. His plan was to do it in the left foot first and if successful, repeat the procedure in the right foot after I recovered.

Dr X could sell ice to an Eskimo. My husband and I were confident in this findings, his abilities and his plan. We decided to move forward with the procedure.

I flew home and didn’t miss a beat. A few days after the procedure, I was on a knee scooter and back at the gym training my clients. After the 4 weeks non-weight bearing I took my first steps with the implant and very quickly realized the pain was still there. I was devastated! Now I had to rehab my foot and leg from the surgery and I still had the pain. Dr X said to give it some time. I went to 4 weeks of physical therapy, but the pain was definitely still there. I was discouraged, but was not going to give up.

6 weeks after the original procedure I flew back down to see Dr X. He repeated some of the tests and said he some improvement which led him to believe that the implant did work, but he felt I also needed to have a tarsal tunnel release procedure to further relief the nerve. Again, he is very very convincing and we agree to the procedure.

When the surgery is over, Dr X comments that I have veins in my feet that are consistent with what he would see in a 6 foot man. He feels it was definitely an issue of over-crowding of the nerve and that the release procedure should provide relief. I’m excited and anxious. I can’t wait to start to feel the pain melt away in my left foot.

Of course that was not the case, in fact, my pain seemed to have increased because the implant is causing me to walk on the outside portion of my foot and I’m starting to have cramping and loss of sensation in the area under my last two toes.

I’m at a loss and not sure where to go from here. Dr X still believes there is an entrapment of the nerve going on but feels it must be entrapment higher up in my leg.

Back to the drawing board…more doctors, more diagnosis, more tests. More time on the internet. I’m sure everyone in this room has spent countless hours on the internet trying to find their own cure. I was on chat rooms and forums and blogs. I was reading and reading and reading well into the night. I was to the point where I would come across a post on a forum that sounded just like me. I was excited to have found someone that could relate to my pain, only to learn the post had been written by me years ago!

Next, I was tested for popliteal artery entrampment syndrome, chronic compartment syndrome and a whole host of other syndromes. Each and every doctor continues to be confident in their diagnosis but each test comes back negative.

And then in June of 2011, I make the biggest mistake of all. I let Dr X and another surgeon operate on the nerve further up my leg. Desperation causes us to make some not so smart choices. But again, Dr X is very convincing and I simply was out of ideas.

The surgery was the beginning of the end of for me. I woke up to the doctor telling me he was 100% certain this fixed the problem. My husband was stunned that he would make such a statement but they said what they saw when inside my leg, proved there was indeed a blockage. They said they knew they had successfully fixed it. I cried with tears of joy! All this was going to finally be worth it and would have my life back. I would finally be able to walk and stand without pain. I could grocery shop and cook dinner and take walks again. I could go to parties and not worry about having to find a chair. This was going to be life changing.

But by the next morning, I realized I had lost feeling in my leg from the knee down through the foot. The entire front of my leg was numb. It turns out they had nicked a sensory nerve. Nerves heal themselves at a pace of 1mm a year so I was told the feeling would likely come back, but it would take a very long time. I know knew with certainty what nerve pain felt like. Burning, tingling, numbness. I couldn’t wear anything over my leg or ankle. Pants had to be rolled up and socks were out of the question. I was taking crazy high amounts of gabapentin to try to help with the nerve pain and applying topical pain medications. My leg was a mess.

In Sept 2011, Dr X is baffled as to why the pain was still present. He suggested I fly to San Francisco to see a few specialists who can perform a specialized MRI on the nerves and possibly do a few nerve blocks. The special MRI finds nothing wrong with the right foot but a whole list of issues on the foot/leg that has been operated on. I’m so angry. Clearly all of these issues are a result of the surgery and none of it has to do with getting to the bottom of my original pain. I feel light years away from a solution and the waters are muddied with these additional symptoms. I’m in so much pain from the nerve issues now. Crying over the pain is now part of my day, but somehow I keep training clients and going on with life.

In Oct 2011, I can’t believe I’m saying this, but we fly back to see Dr X in Arizona. Even after everything that has happened I still feel like he is working hard to find a fix for me. He says we can try something called Radiofrequency Ablation. With RFA an electrical current produced by a radio wave is used to heat up a small area of nerve tissue, therby decreasing pain signals from that specific area. We decide to try it as it seems pretty non-invasive. At first, I think I can notice some improvement in the pain, but within days I realize the pain is still the same. My disappointment, anger and frustration continue.

7 months after the nerve surgery in my leg, things take another turn for the worst. We go on vacation to Mexico and my feet start to turn bright red and feel like they are on fire. Its very scary to see my feet turn so bright red. Putting them in cold water or in front of the AC takes the redness away, but the redness keeps returning on and off during the week in Mexico. When I return, Dr X suggests seeing a pain management specialist to discuss the possibility of Chronic Regional Pain Syndrome. When I google this, I’m devastated. The syndrome sounds awful and I’m so scared about the possibility of living like this forever. I’m angry at myself for going through with the last surgery and I’m angry at the doctors for nicking that nerve. Mentally, I’m losing hope and my whole world is revolving around diagnosing, managing and resolving this pain.

I get in to see a Pain management doctor at Rush and after his exam he believes I have a mild case of Chronic regional pain syndrome. He can’t do any sympathetic nerve blocks because I’m 4 months pregnant at this time.

I feel like time is running out to figure this out. In only a few months, I will have a new baby. I’m becoming more and more anxious about how I will care for the baby with this pain. I’m so sad for all the things I will not be able to do. I’m picturing missing out on stroller walks and trips to the park. I’m feeling bad for what my baby will not be able to experience because of me. I’m scared of the unknown of it all. I’m wondering what I did wrong for God to allow this to happen to me. I’m jealous of my friends and family and how their lives are just moving forward, seemingly worry and stress-free.

Right up to the month the baby is born, I’m still searching for answers, having my third nerve conduction test, an arterial Doppler and an attempt at a weight-bearing MRI. Nothing is found.

My feet are turning red each night and are burning so bad that I’m crying from the pain. I have fans blasting on my feet each night. No one can tell me why I’m having this response in both of my feet (even the one that didn’t have surgery). During my internet searches, I come across a rare condition called Eyrthromelalgia and it sounds exactly like what I’m experiencing. I send all the information to a couple of my doctors and they all agree, it does sound like I have what they call EM.

Erythromelalgia is a rare and devastating disorder that typically affects the skin of the feet or hands, or both, and causes visible redness, intense heat and burning pain. The cause of EM is unknown but in many cases it can be caused by an underlying nerve issues. In my case, the botched surgery was likely what kicked it off. Temperatures of over 70 degrees or even mild activity, including walking can cause the symptoms of redness and burning pain to appear. There is no known cure for EM and each person is different in the types of medication combinations that may help the symptoms.

I felt as if my life as I knew it was over. I now had feet pain that hurt the moment I stood up, complications from nerve surgery and a very painful lifelong condition that I would need to try to manage. Even though I have the most supportive husband in the world, I felt alone. My friends and family no longer knew what to do or say. I found many of their comments to be insensitive or completely aloof to my situation. I remember when my sister literally asked me if I wanted to take a walk. I stared at her at a loss for words. People simply could not grasp what was going on with me. Since I really had no visible symptoms, I think people would just forget what I was experiencing. There were a lot of tears shed and a lot of fear around the pain and the future.

In Sept 2012, I had our baby girl. I’d love to say that was a great experience, a happy time, in the midst of all this pain, but it wasn’t. Our daughter had breathing issues and was taken to the NICU. For those of you who have experienced that, you know just how stressful having your new baby hooked up to machines is. I was a mess, both physically, mentally and emotionally. During the 9 days we spent in the NICU, my blood pressure started to rise. The doctors were unsure what was happening and wanted to put me on a bunch of different medications that would dilate my arteries in order to bring my blood pressure down. Thankfully, I had sold blood pressure medication in the past, and I knew further dilating the arteries could cause irreversible damage to my Erythromelalgia condition. Disagreeing with doctors and refusing to take the medications they want to prescribe you is a difficult position to be in. I was so exhausted and stressed. My body really felt like it was shutting down. I could not stand at all to even make it down to the NICU. I was now forced to be in a wheelchair.

Thankfully, our daughter was released after 9 days, healthy as can be, but my situation was becoming worse. Once home my blood pressure was bouncing all over the place. Alarmingly high at night and so low in the mornings that I passed out a few times. After a week of being home and the doctors at Northwestern not sure how to help me with my complicated case (they had admitted to never having treated a patient with EM before), we decided to make an emergency trip to Mayo clinic in Minnesota, where there was an expert in EM.

This was probably the saddest and scariest time in my life. I had to leave my two week old baby with my in-laws. I was being robbed of those sweet little newborn baby days, but I was in no shape to take care of a baby. My husband put me in the back seat of our car and I remember being in crazy amounts of pain. I was experiencing stabbing pains, shocks of pain, tingling sensations all over my body. I had electrical shocks of pain in my feet and they were on fire. I remember telling my husband that I had a dream that God was telling me that I have to be okay with the fact that I might not make it. It really felt like my body was just shutting down.

You can’t just show up to Mayo clinic and expect to be seen. Every difficult case in the world wants to be admitted there. We thought we would try to get in the back door so to speak, by going to the ER and hopefully being admitted. It turns out, lots and lots of people try this technique. We waited for hours before being seen in the ER. The doctor was not sympathetic to my situation and said I was in stable condition and that my blood pressure was not elevated enough to be an emergency. We begged him to refer us to a doctor at Mayo but he refused. He said he simply could not let everyone who came into the ER have a referral. I asked him what he would do if I was his daughter. I told him we were out of ideas and had a two week old baby at home. I told him no one in Chicago could help me and that we had to see the EM specialist at Mayo. He left the ER without saying anything. We were crying and packing up our things to leave when his nurse came back in the room. She said in 20 years of working with him she had never seen him give a referral, but he gave us one. It was truly an answer to prayers!!!

I spent 5 days at Mayo clinic having every test under the sun. I could talk about this for 2 hours but I won’t. I could not get into the EM expert but saw his associate. She agreed, it appeared I did have EM and gave me some topical creams and a new medication to help with the pain. She told me there really is no cure for EM and that patients have to adjust their lifestyles to manage the pain. I knew that from what I had read online but hearing the definitive words from the doctor just put me over the edge. I was crying and sobbing in her office.

The cardiologist I worked with Mayo was great. He said I had post-parteum hypertension and it would likely go away in a few months. He said my elevated blood pressure is not going to kill me overnight (and that we can just start on mild diuretics and medications that will not interfere with my EM. His calm demeanor and simple plan brought my anxiety down. He sent me to a therapist as part of my work up and she determined all of these events – the feet pain, the EM, my daughter being in the NICU, the elevated blood pressure is the perfect storm of events for me. She said that by nature I’m a ‘fixer’ a ‘doer’. I see a problem, I look for a solution and I fix it. She said the fact that all these things were happening to me and I can’t control them or find a solution for them, had put me in a constant state of fight or flight. She explained how this was wreaking havoc on my body. She suggested I take a small dose of anti-anxiety medication.

Once I’m back from Mayo, I have resorted to a combination of crawling around my house and a wheelchair or knee scooter for outings. It is extremely hard for me to take care of my daughter so we have to hire someone to come in and help me. I hate having someone in my house all day. I hate the loss of freedom and I hate depending on this stranger to help me with my daughter, but I really have no choice at this point.

12 years after my feet pain first started, I decide there is nothing left to do but learn to manage all of this pain. I’m admitted into a 40 hour a week, month long pain management program at the Rehabilitation Institute of Chicago. In the program, I’m surrounded by people with amputations, fibromyalgia, chronic regional pain syndrome, and people who have survived serious car accidents. It’s hard for me to believe I’m here with this group of people. How could feet pain have turned into this? The 4 week program does little to help with my physical pain, but it helps me tremendously in the mental and emotional arena. Every session I go to with the therapist, ends in tears. I have lot of sadness, frustration, anger, and fear around all of this. In the program, with the help of relaxation classes and bio-feedback, I’m able to bring my blood pressure back down to within in normal limits without any medication.

The pain program finishes up in Feb of 2013 and by April the Erythromelalgia is GONE! 100% gone. I was told less than 1% of people ever see the condition cured, but it was gone. I was doing nothing to treat it somehow and it was just gone. We were certain it was an answer to prayers. You’d think after that, After I prayed and prayed for it to be gone, that I would be content. But I wanted more. I wanted the original feet pain fixed. I still wanted my life back. Don’t get me wrong, I have no words for how happy I was that the EM was gone. I don’t want to gloss over this or minimize it. We were beyond thrilled. I was grateful every single night my feet did not flare up. But, somehow, that wasn’t enough. And maybe it should have been, but I still wanted to be pain-free.

I went back on the doctor trail looking for more solutions to my feet pain. I won’t bore you with all the details of the additional tests, theories and solutions that I tried during this time. Suffice it to say, it was a long list. This went for another exhausting year and a half and in October of 2014, I stumbled upon Dr. Stracks and TMS. I had previously learned about Dr. Sarno and his work and I dismissed it as bunch of wishy-washy nonsense. But now, I was literally at the end of my rope. I had not one thing left to try. I was desperate and had nothing to lose. The day after contacting Dr. Stracks, I found myself attending my first discussion panel in this very room.

I had briefly read about TMS (tension myositis syndrome) or MBS (mind-body syndrome) before attending and the stories seemed so far-fetched to me. The idea that my brain was keeping me in a state of pain due to unexpressed emotions just didn’t compute for me. My pain is real, I thought. My pain is severe and not being caused by some undealt with feelings. But after listening to the speakers on the panel, I was hopeful and I set up an appt with Dr Stracks. He reviewed my medical history and asked lots of questions about my past, my personality traits, how I cope with emotions, what was happening in my life when the pain began. After a long discussion, he did think my pain could be related to TMS. The big indicator being that in 13 years, not one doctor had ever found anything wrong with me. Not one test had ever found anything. What is the likelihood that someone with my level of pain would have no physical signs of the pain? I held out that doctors just hadn’t found the cause yet. Or that they had missed something along the way or that there were not tests developed yet to detect what was causing my pain.

To say I was skeptical of TMS and this working for me was an understatement. Every doctor I had ever seen was always extremely confident in their diagnosis of my pain and their proposed solution. Multiple doctors had told me they were certain they could fix my pain. (For the record, Dr. Stracks did not claim that). But I had nothing else to try so I figured why not give this a shot. I attended Dr. Stracks’ class and worked thru Dr. Schubiner’s book – Unlearn Your Pain which was an eye-opening experience.

In the book, I was asked to take a look at my childhood and personality traits. It was no secret to me that I had to deal with a good bit of stuff growing up. I had parents that had me when they were 17 years old. There was a lot of drinking and partying along with a lot of yelling and fighting. Often times it was a scary environment to grow up in. But that was no secret to me. I didn’t feel like I was repressing any emotions in this area. I journaled extensively around the fear I had growing up and the relationship I had with my dad, but I didn’t feel like I was having any ephiphanies. I looked at my personality traits and many of those seemed common in people with MBS. I was able to check the boxes for perfectionism, having high expectations of myself, wanting to be liked, being conscientious, being hard on myself, being overly responsible (and for me since a very young age), often worrying, having difficulty making decisions, following rules strictly, and having difficulty letting go. It seemed obvious my personality type fit the profile!

I understood that in order for my pain to go away, I needed to believe in this being the cause of my pain at a gut level. Intellectually I completely was on board with TMS, but I knew I still wasn’t certain it was the cause of my pain. I still knew that part of me believed my pain had a physical cause. I was finding it easier to believe that repressed emotions could cause headaches or stomach pains, but I was having a hard time believing it would choose to cause feet pain and only when I’m standing. I had heard many success stories, but it was hard to find any information around TMS and feet pain. Dr. Stracks put in me in touch with one of if his former patients that had also had feet pain. I spoke on the phone with this patient at great length and this was very helpful in convincing me that feet pain could also be a mind-body syndrome.

I made a conscious decision to stop thinking of my feet pain as something to figure out from a medical stand point. I realized through journaling, that although my past was not something I had been suppressing, it certainly had not been easy and I had been minimizing the impact it likely had on me. Dr. Stracks and I talked about what had been happening in my life around the time my feet pain started. Nothing lined up perfectly, but my parents did get divorced in 2000 and my pain started in 2001. I had a lot of stress in my life right before that time. I had just finished college and had nowhere to live, no money to my name, no job lined up and my relationship with my dad had completely fallen apart. It still didn’t feel like these things were the catalysts to my pain. Dr. Stracks and I discussed the possibility that the pain may have started from a physical cause, maybe it was plantar fasciitis initially. But once the physical pain healed my brain didn’t get the memo. It kept sending pain signals down to my feet. And then the viscious cycle began. The pain perpetuated the worry and fear of the pain and the worry and fear perpetuated the pain. Overtime it became a learned pain. My body and brain expected that every time I stood, I would experience pain. I became fearful of how long it would be before that pain would set in. Without knowing it, I was constantly monitoring and gauging when/how the pain set in. Then the worry and fear thoughts would come…what if I can’t sit down, what if the pain gets worse, what if I can’t get through the grocery store and I have to sit down in the aisle, what if I get stuck talking to someone and I can’t get away to sit down, what if, what if, what if. If nothing else, it was clear I had a lot of fear and anxiety around the pain.

So, if you guys are anything like me, you are listening to me speak and you are thinking to yourselves ‘tell me exactly what you did to get better.’ I remember sitting there taking copious notes of exactly what the speakers did to improve. I wanted so desperately to be in their shoes. I was willing to do whatever they said. Unfortunately, I learned no two people heal in the same way. What worked for many of the speakers simply did not seem to work for me. My improvements were gradual. Very gradual. I didn’t have any huge successes from any one thing. I just kept moving forward. Things that really seemed to help me were the following:

- Decreasing the fear around the pain. This was a big one. When I noticed my brain going down the path of worry, I had to put a stop to those types of thoughts. Sometimes I had to do it hundreds of times a day. Each time a fear or worry thought came into my mind, I had to stop it dead in its tracks.

- The book the Great Pain Deception by Steve Ozanich – it’s a lengthy read but I appreciated just how dire his situation had become and how he was able to overcome it with mind-body techniques. I highlighted so much of the book and have gone back to the book again and again. It just really spoke to me and I could see myself on many of the pages.

- The forum tmswiki.org – This is a wonderful website where you can ask all your TMS related questions and get answers from others who have gone through it. There are success stories and an area to ask TMS therapists questions as well. This site was hugely helpful to me.

- Skyping with a TMS therapist – through the TMSwiki site I was put in touch with a therapist in California that specializes in counseling patients with TMS. The therapist was able to give me practical ways to work on TMS in small, manageable chunks. One thing we discussed was counting how many times I think about the pain on a daily basis and using positive self-talk or a each time these thoughts creeped into my head. Well, I ended up losing track of all the times I thought about my feet and the pain. I told him I didn’t know how to think of the pain less, but overtime, very slowly, I learned to decrease and now, nearly stop these types of thoughts.

- Another big one was putting into practice a concept called ‘outcome independence’ – I remember being on the tmswiki forum and the moderator was commenting on how to take the pain’s power away you need to overcome your preoccupation with it. Outcome independence means your definition of success is independent of a specific outcome. He said think how outcome dependent you tend to be with your pain. So your feet hurt when you take a walk. Every time you take a walk, you monitor it. You say, "Okay, today the pain started after a block. Yesterday it started after a block and a half." "Today it was a 3 out of 10 when I returned home. Last week it was a 7 out of 10 after the same distance."

When you have a good walk, you feel happy, optimistic, feeling like you're on the right track. When you have a bad walk, you feel down, defeated, bad about yourself and your prospect of ever getting rid of the pain.

He said This attitude, this outcome dependence is feeding the pain cycle. It's reinforcing its very purpose.

Change your definition of success. Work on it. Success is no longer measured by whether or not you have a good walk. Success is measured by how little you care.

At the beginning of your walk, tell yourself, "It doesn't matter how much it hurts afterward. What matters is how little I let it affect me; how I refuse to let my mood, my self-perception, my feelings about the future be determined by how much pain I'm in afterward." This was probably the BIGGEST change in thinking for me and I probably saw the greatest results from this.

- Next, Taking a break from working on it – after a year of working on my pain from a TMS stand point, we were moving from Chicago to the suburbs. I decided to stop skyping with my therapist for awhile bc things were so chaotic with the move. He was adamant about not stopping our sessions during a stressful time like a move. But guess what, on moving day I walked roughly 22,000 steps according to my husband’s fitbit and my pain was maybe at a level 2! I was blown away! Up until this point, I had been seeing some small improvements, but this was impossible to dispute! I was beating it and there was no denying it.

- And that brings me to acknowledging the small wins. I was always waiting for the big improvements that I had heard and read about, but that is not how things worked for me. I think it was in the Unlearn your pain book, it asks if you can ever recall a situation where the pain would typically be present, but it wasn’t. For example, I typically always have feet pain when standing in place for more than few minutes. And as time passes, the pain gets worse. But one time when I was at a party, after having worked on TMS for about a year, I realized I had been standing in place for nearly an hour with very minimal pain. My natural reaction would be to rationalize this away or dismiss it as a coincidence, but I had to start recognizing small wins as evidence that it was working! And the more evidence I could find, the greater my belief in TMS and that this process could actually work for me.

- Next I had to recognize that success is not linear – this was and still is a frustrating concept to deal with. Many times along the way I would have some good days, followed by some days of setbacks. The most important thing I did during those times was to try not to get hung up on the setbacks. I had to talk to myself and tell myself it’s just the TMS holding on for dear life. That it doesn’t want to be extinguished and it’s trying anything to stick around. It’s definitely disappointing when this happens. But it will happen and you have to push through it and stay on course. Go back to reading the books, get on the forum, go back to the basics of what worked for you in the beginning.

So, where am I at now…I’m holding strong at about 90% healed. I don’t know if I’ll ever be 100% and I don’t actively try to achieve that. Being at 90% healed, I’m able to live my life mostly the way I want to. I still experience pain when doing a long day of standing and walking. And this is frustrating for me, but I try to take it in stride and be patient. But this past fall I put myself to the ultimate test and we took our 4 year old to Disney World. We always said if we did Disney I would just have to be in a wheelchair and even with as well as I was doing, we agreed we wouldn’t be upset if I ended up needing one. Well, we did three 10-12 hour days at Disney without a wheelchair. I wasn’t pain-free, but I did it and it was a far cry from me crawling around my house on my hands and knees back in 2012. The crazy thing is, and this will prove how determined TMS is, when I got back from Disney, it was like my brain tried to re-wire the memory. I started telling my husband that the trip hadn’t been that successful and that I had been in pain. I was disappointed that I had to use a small trail stool to sit while in some of the lines. My husband thought I was crazy. He couldn’t believe I was forgetting how well I had done just a week earlier. TMS is down-right evil that way. But my setbacks are much less frequent now and I can’t believe I’m saying this, but some days go by where I don’t think about my feet at all!
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Wonderful story in such detail.... thank you so much for sharing all that and you had it for so long!! So brave...
I had my foot pain from stubbing my small toe and having a small fracture. 2 months later my whole foot started playing up....convinced it's TMS as the pain changes around the foot and apart from the fracture have not physically hurt my foot. Your letter was so helpful and I really hope you are cured of it now.

WantToBelieve · Nov 22, 2023

Innybeany said: ↑

Wonderful story in such detail.... thank you so much for sharing all that and you had it for so long!! So brave...
I had my foot pain from stubbing my small toe and having a small fracture. 2 months later my whole foot started playing up....convinced it's TMS as the pain changes around the foot and apart from the fracture have not physically hurt my foot. Your letter was so helpful and I really hope you are cured of it now.
Click to expand...

I’m so sorry to hear you are in pain. Happy my story could help in any way! Im happy to answer any questions you may have. Stick with it. It can be a wow journey but it’s worth it. I’d say I’m 100% 90% of the time. I still face challenges on a long day of standing but it’s an outlier and I try hard not to let it get me down.

tag24 · Dec 17, 2023

WantToBelieve said: ↑

I don't even know where to begin...since my pain started so long ago back in 2001! I recently spoke on a TMS success stories panel for my doctor and will paste my talk below. It's LONG. Like VERY long. Like War and Peace long. I was supposed to talk for about 30 minutes. I hope you find it beneficial. If you'd prefer to skip over my medical history (I really wanted to paint the picture of how dire my situation had become), then scroll to the bottom to learn how TMS ultimately helped me to be 90% pain-free!!! I'm happy to answer any/all questions.

Hello, my name is Jodie and my pain is in both of my feet. The pain feels like I’m walking on bone on concrete. Like there isn’t enough padding in my foot. This is my first time speaking on this panel, but I’ve attended many talks over the past nearly 3 years. What always stood out to me when I listened to the speakers was the intense level of pain they had all been in, all the medical solutions they had tried with little to no success and ultimately how their pain was nearly gone after working on it from a mind-body standpoint. For me, it was very compelling and went a long way in helping me believe in TMS. I hope you don’t mind me reading this, but my story spans 16 years and is just too much info for me to recall from memory. Bear with me as I walk you through my journey and all the medical solutions I tried. My goal in sharing all of this with you is to help each of you to see, no matter where you are at with your pain, no matter how long you have been in pain, or how much pain you have been, there is still hope for you and you can start to feel better.

My feet pain started in 2001 when I was training for a marathon. I was 25 years old and in great shape. It started as heel pain in both feet. It was irritating but generally I carried on with life. Every doctor thought it was plantar fasciitis, even though my symptoms didn’t really line up. I began NSAIDS, stretching, night splints, massage therapy, orthotics and cortisone shots all with no relief.

I was a pharmaceutical sales rep at the time and it was getting hard to be on my feet all day long.

I should also mention that my pain was very perplexing to doctors bc it only hurts when I stand. When I sit down the pain is instantly gone. This is not how feet pain typically presents so the doctors were stumped.

I ended up leaving my job as a pharmaceutical rep to start my own personal training business and I started competing in fitness competitions. Probably not the best move for someone with feet pain, but I really was determined not to let the pain stop me. I had new orthotics made and they seemed to make the pain worse.

At this point, I had been in pain for 5 years and going to doctors was like a part-time job. Each new doctor had new ideas and each one felt very confident they knew what was wrong and how to fix it. I constantly was getting my hopes up and then crushed when my pain didn’t improve. It was an emotional roller-coaster for me. I really put my faith in each new doctor and their ideas and then was so disappointed when they could not help me.

I had xrays, MRIs and was prescribed different medications but nothing was found and nothing seemed to help. The pain was getting worse and now it was no longer just in my heels but the entire bottom of feet hurt.

I ended up getting referred to an orthopedic surgeon who surprise, surprise rec’d surgery. He wanted to put an implant in my ankle that would prevent my arch from collapsing. I got a 2nd opinion and that doctor did not agree and wanted me to have a complete blood work up to rule out lupus and arthritis. Again, all those tests come back fine. They couldn’t find anything wrong. This was the most frustrating part for me. The not knowing. I almost hoped they’d tell me I had lupus or arthritis so I could have a diagnosis and stop searching for the cause of the pain.

In 2008, I was linked up with a chiropractor who was certain my issue were due to muscular imbalances and improperly made orthotics. He treated me for nearly two years and we worked on everything from feet, calves, hips, glutes and hamstrings with no improvements. The whole process was exhausting but I refused to give up and continued looking for a cure.

So, I moved on to another doctor and tried heel cups, compression socks and injections with no success. I was referred for another EMG and nerve conduction where, They stick needles in your muscles to determine your muscles response to nerve stimulation. Since I had this test before I now knew what to expect. I remember being so nervous, that I sweat right through that white paper on the doctors table. Of course the findings were normal and the doctor said he was certain I did not have Tarsal Tunnel Syndrome.

The pain was getting worse. The time I had on my feet before the pain set in was down to only minutes. Training clients was getting harder and I’d be in excrutiating pain during the sessions, but no one knew it. I’d put on a smile, push the pain down and stand on the sides of my feet or tip toes to get through the sessions. I realized I had less pain in high heels so I started to wear heeled boots with my gym attire to train my clients! I looked ridiculous, but I would have done anything to have more time on my feet before the pain set in. My quality of life was completed affected at this point. My husband would drop me off at the door everywhere we went. Our world travels had to be adjusted from hiking Machu Picchu to beach trips were I could do more sitting. I would be anxious for parties because I knew there wouldn’t be many places or opportunities to sit. My husband would also be anxious. He knew how much pain I would be in and that I wouldn’t say anything to the person I was talking to. I would just suffer through it, but cry the minute we got into the car. I started to forget what it would even be like not to have pain when I stood up.

In 2010, 9 years after the onset of the pain, I had additional MRIs performed and the doctors finally found something. On the right foot, they stated there was a 9mm ganglion cyst and that it was likely pressing on a nerve and causing tarsal tunnel syndrome and they wanted to do surgery to remove it. I was beyond thrilled to have a tangible thing to go after. However, I got a 2nd and 3rd opinion and no one could come to an agreement on the diagnosis or solution. One doctor pointed out that my feet pain is equal in both feet, but the cyst is only on the right foot. What would be the cause of the pain in the left foot? I didn’t know what to do. I wanted so bad to fix the pain, but it just didn’t’ feel right to do the surgery. It’s such a scary feeling when you have become your own doctor and are left to make these decisions on your own.

I figured if I was going to have surgery for tarsal tunnel syndrome, I should go to the best. I searched the internet high and low and read everything I could on TTS. I was reading Podiatry Today which is a journal for podiatrists. I wanted to see who was doing the research and who was most cutting edge and current in the field. A name of a doctor kept coming up again and again. He seemed well-known, respected, and an expert in this field. I hunted down his email address and sent him a desperate email begging him to reply and to help me. I was blown away when he emailed me the next day!

He asked me to send him all my records and then we set up a time to have a conference call since he was located in Arizona. After listening to me describe my symptoms and reading through the mountain of medical history, he did feel that I likely had tarsal tunnel syndrome and wanted me to fly down for an exam. I left the call filled with optimism and hope. This doctor was so confident in being able to help me. He explained how he works on nothing but the toughest cases and how he prides himself in helping patients that have tried everything and are at the end of their rope. It felt so good for a doctor to really listen to me. To take the time of out of his schedule to talk to me for over an hour (free of charge, I might add!). He was or originally from Chicago and was a Cubs fan and we just really hit it off. I felt like he had been my friend for years and I just knew he would be able to help me.

In October of 2010, we flew down to Arizona. The dr, let’s call him Dr X, spent a good 4 hours with me. Dr X did a bunch of tests, and in the end, felt the results of the tests definitely indicated that I had damage to some of my nerves. That combined with my verbal description of my symptoms and my history led him to suggest surgery. He recommended I have a subtalar joint implant. This meant he was going to place a small device into a space near the bottom of my ankle bone to prevent the pronation (or rolling in) of my foot. He believed this was causing pressure on a nerve leading to my pain. The surgery would require me to be off my feet for 4 weeks. His plan was to do it in the left foot first and if successful, repeat the procedure in the right foot after I recovered.

Dr X could sell ice to an Eskimo. My husband and I were confident in this findings, his abilities and his plan. We decided to move forward with the procedure.

I flew home and didn’t miss a beat. A few days after the procedure, I was on a knee scooter and back at the gym training my clients. After the 4 weeks non-weight bearing I took my first steps with the implant and very quickly realized the pain was still there. I was devastated! Now I had to rehab my foot and leg from the surgery and I still had the pain. Dr X said to give it some time. I went to 4 weeks of physical therapy, but the pain was definitely still there. I was discouraged, but was not going to give up.

6 weeks after the original procedure I flew back down to see Dr X. He repeated some of the tests and said he some improvement which led him to believe that the implant did work, but he felt I also needed to have a tarsal tunnel release procedure to further relief the nerve. Again, he is very very convincing and we agree to the procedure.

When the surgery is over, Dr X comments that I have veins in my feet that are consistent with what he would see in a 6 foot man. He feels it was definitely an issue of over-crowding of the nerve and that the release procedure should provide relief. I’m excited and anxious. I can’t wait to start to feel the pain melt away in my left foot.

Of course that was not the case, in fact, my pain seemed to have increased because the implant is causing me to walk on the outside portion of my foot and I’m starting to have cramping and loss of sensation in the area under my last two toes.

I’m at a loss and not sure where to go from here. Dr X still believes there is an entrapment of the nerve going on but feels it must be entrapment higher up in my leg.

Back to the drawing board…more doctors, more diagnosis, more tests. More time on the internet. I’m sure everyone in this room has spent countless hours on the internet trying to find their own cure. I was on chat rooms and forums and blogs. I was reading and reading and reading well into the night. I was to the point where I would come across a post on a forum that sounded just like me. I was excited to have found someone that could relate to my pain, only to learn the post had been written by me years ago!

Next, I was tested for popliteal artery entrampment syndrome, chronic compartment syndrome and a whole host of other syndromes. Each and every doctor continues to be confident in their diagnosis but each test comes back negative.

And then in June of 2011, I make the biggest mistake of all. I let Dr X and another surgeon operate on the nerve further up my leg. Desperation causes us to make some not so smart choices. But again, Dr X is very convincing and I simply was out of ideas.

The surgery was the beginning of the end of for me. I woke up to the doctor telling me he was 100% certain this fixed the problem. My husband was stunned that he would make such a statement but they said what they saw when inside my leg, proved there was indeed a blockage. They said they knew they had successfully fixed it. I cried with tears of joy! All this was going to finally be worth it and would have my life back. I would finally be able to walk and stand without pain. I could grocery shop and cook dinner and take walks again. I could go to parties and not worry about having to find a chair. This was going to be life changing.

But by the next morning, I realized I had lost feeling in my leg from the knee down through the foot. The entire front of my leg was numb. It turns out they had nicked a sensory nerve. Nerves heal themselves at a pace of 1mm a year so I was told the feeling would likely come back, but it would take a very long time. I know knew with certainty what nerve pain felt like. Burning, tingling, numbness. I couldn’t wear anything over my leg or ankle. Pants had to be rolled up and socks were out of the question. I was taking crazy high amounts of gabapentin to try to help with the nerve pain and applying topical pain medications. My leg was a mess.

In Sept 2011, Dr X is baffled as to why the pain was still present. He suggested I fly to San Francisco to see a few specialists who can perform a specialized MRI on the nerves and possibly do a few nerve blocks. The special MRI finds nothing wrong with the right foot but a whole list of issues on the foot/leg that has been operated on. I’m so angry. Clearly all of these issues are a result of the surgery and none of it has to do with getting to the bottom of my original pain. I feel light years away from a solution and the waters are muddied with these additional symptoms. I’m in so much pain from the nerve issues now. Crying over the pain is now part of my day, but somehow I keep training clients and going on with life.

In Oct 2011, I can’t believe I’m saying this, but we fly back to see Dr X in Arizona. Even after everything that has happened I still feel like he is working hard to find a fix for me. He says we can try something called Radiofrequency Ablation. With RFA an electrical current produced by a radio wave is used to heat up a small area of nerve tissue, therby decreasing pain signals from that specific area. We decide to try it as it seems pretty non-invasive. At first, I think I can notice some improvement in the pain, but within days I realize the pain is still the same. My disappointment, anger and frustration continue.

7 months after the nerve surgery in my leg, things take another turn for the worst. We go on vacation to Mexico and my feet start to turn bright red and feel like they are on fire. Its very scary to see my feet turn so bright red. Putting them in cold water or in front of the AC takes the redness away, but the redness keeps returning on and off during the week in Mexico. When I return, Dr X suggests seeing a pain management specialist to discuss the possibility of Chronic Regional Pain Syndrome. When I google this, I’m devastated. The syndrome sounds awful and I’m so scared about the possibility of living like this forever. I’m angry at myself for going through with the last surgery and I’m angry at the doctors for nicking that nerve. Mentally, I’m losing hope and my whole world is revolving around diagnosing, managing and resolving this pain.

I get in to see a Pain management doctor at Rush and after his exam he believes I have a mild case of Chronic regional pain syndrome. He can’t do any sympathetic nerve blocks because I’m 4 months pregnant at this time.

I feel like time is running out to figure this out. In only a few months, I will have a new baby. I’m becoming more and more anxious about how I will care for the baby with this pain. I’m so sad for all the things I will not be able to do. I’m picturing missing out on stroller walks and trips to the park. I’m feeling bad for what my baby will not be able to experience because of me. I’m scared of the unknown of it all. I’m wondering what I did wrong for God to allow this to happen to me. I’m jealous of my friends and family and how their lives are just moving forward, seemingly worry and stress-free.

Right up to the month the baby is born, I’m still searching for answers, having my third nerve conduction test, an arterial Doppler and an attempt at a weight-bearing MRI. Nothing is found.

My feet are turning red each night and are burning so bad that I’m crying from the pain. I have fans blasting on my feet each night. No one can tell me why I’m having this response in both of my feet (even the one that didn’t have surgery). During my internet searches, I come across a rare condition called Eyrthromelalgia and it sounds exactly like what I’m experiencing. I send all the information to a couple of my doctors and they all agree, it does sound like I have what they call EM.

Erythromelalgia is a rare and devastating disorder that typically affects the skin of the feet or hands, or both, and causes visible redness, intense heat and burning pain. The cause of EM is unknown but in many cases it can be caused by an underlying nerve issues. In my case, the botched surgery was likely what kicked it off. Temperatures of over 70 degrees or even mild activity, including walking can cause the symptoms of redness and burning pain to appear. There is no known cure for EM and each person is different in the types of medication combinations that may help the symptoms.

I felt as if my life as I knew it was over. I now had feet pain that hurt the moment I stood up, complications from nerve surgery and a very painful lifelong condition that I would need to try to manage. Even though I have the most supportive husband in the world, I felt alone. My friends and family no longer knew what to do or say. I found many of their comments to be insensitive or completely aloof to my situation. I remember when my sister literally asked me if I wanted to take a walk. I stared at her at a loss for words. People simply could not grasp what was going on with me. Since I really had no visible symptoms, I think people would just forget what I was experiencing. There were a lot of tears shed and a lot of fear around the pain and the future.

In Sept 2012, I had our baby girl. I’d love to say that was a great experience, a happy time, in the midst of all this pain, but it wasn’t. Our daughter had breathing issues and was taken to the NICU. For those of you who have experienced that, you know just how stressful having your new baby hooked up to machines is. I was a mess, both physically, mentally and emotionally. During the 9 days we spent in the NICU, my blood pressure started to rise. The doctors were unsure what was happening and wanted to put me on a bunch of different medications that would dilate my arteries in order to bring my blood pressure down. Thankfully, I had sold blood pressure medication in the past, and I knew further dilating the arteries could cause irreversible damage to my Erythromelalgia condition. Disagreeing with doctors and refusing to take the medications they want to prescribe you is a difficult position to be in. I was so exhausted and stressed. My body really felt like it was shutting down. I could not stand at all to even make it down to the NICU. I was now forced to be in a wheelchair.

Thankfully, our daughter was released after 9 days, healthy as can be, but my situation was becoming worse. Once home my blood pressure was bouncing all over the place. Alarmingly high at night and so low in the mornings that I passed out a few times. After a week of being home and the doctors at Northwestern not sure how to help me with my complicated case (they had admitted to never having treated a patient with EM before), we decided to make an emergency trip to Mayo clinic in Minnesota, where there was an expert in EM.

This was probably the saddest and scariest time in my life. I had to leave my two week old baby with my in-laws. I was being robbed of those sweet little newborn baby days, but I was in no shape to take care of a baby. My husband put me in the back seat of our car and I remember being in crazy amounts of pain. I was experiencing stabbing pains, shocks of pain, tingling sensations all over my body. I had electrical shocks of pain in my feet and they were on fire. I remember telling my husband that I had a dream that God was telling me that I have to be okay with the fact that I might not make it. It really felt like my body was just shutting down.

You can’t just show up to Mayo clinic and expect to be seen. Every difficult case in the world wants to be admitted there. We thought we would try to get in the back door so to speak, by going to the ER and hopefully being admitted. It turns out, lots and lots of people try this technique. We waited for hours before being seen in the ER. The doctor was not sympathetic to my situation and said I was in stable condition and that my blood pressure was not elevated enough to be an emergency. We begged him to refer us to a doctor at Mayo but he refused. He said he simply could not let everyone who came into the ER have a referral. I asked him what he would do if I was his daughter. I told him we were out of ideas and had a two week old baby at home. I told him no one in Chicago could help me and that we had to see the EM specialist at Mayo. He left the ER without saying anything. We were crying and packing up our things to leave when his nurse came back in the room. She said in 20 years of working with him she had never seen him give a referral, but he gave us one. It was truly an answer to prayers!!!

I spent 5 days at Mayo clinic having every test under the sun. I could talk about this for 2 hours but I won’t. I could not get into the EM expert but saw his associate. She agreed, it appeared I did have EM and gave me some topical creams and a new medication to help with the pain. She told me there really is no cure for EM and that patients have to adjust their lifestyles to manage the pain. I knew that from what I had read online but hearing the definitive words from the doctor just put me over the edge. I was crying and sobbing in her office.

The cardiologist I worked with Mayo was great. He said I had post-parteum hypertension and it would likely go away in a few months. He said my elevated blood pressure is not going to kill me overnight (and that we can just start on mild diuretics and medications that will not interfere with my EM. His calm demeanor and simple plan brought my anxiety down. He sent me to a therapist as part of my work up and she determined all of these events – the feet pain, the EM, my daughter being in the NICU, the elevated blood pressure is the perfect storm of events for me. She said that by nature I’m a ‘fixer’ a ‘doer’. I see a problem, I look for a solution and I fix it. She said the fact that all these things were happening to me and I can’t control them or find a solution for them, had put me in a constant state of fight or flight. She explained how this was wreaking havoc on my body. She suggested I take a small dose of anti-anxiety medication.

Once I’m back from Mayo, I have resorted to a combination of crawling around my house and a wheelchair or knee scooter for outings. It is extremely hard for me to take care of my daughter so we have to hire someone to come in and help me. I hate having someone in my house all day. I hate the loss of freedom and I hate depending on this stranger to help me with my daughter, but I really have no choice at this point.

12 years after my feet pain first started, I decide there is nothing left to do but learn to manage all of this pain. I’m admitted into a 40 hour a week, month long pain management program at the Rehabilitation Institute of Chicago. In the program, I’m surrounded by people with amputations, fibromyalgia, chronic regional pain syndrome, and people who have survived serious car accidents. It’s hard for me to believe I’m here with this group of people. How could feet pain have turned into this? The 4 week program does little to help with my physical pain, but it helps me tremendously in the mental and emotional arena. Every session I go to with the therapist, ends in tears. I have lot of sadness, frustration, anger, and fear around all of this. In the program, with the help of relaxation classes and bio-feedback, I’m able to bring my blood pressure back down to within in normal limits without any medication.

The pain program finishes up in Feb of 2013 and by April the Erythromelalgia is GONE! 100% gone. I was told less than 1% of people ever see the condition cured, but it was gone. I was doing nothing to treat it somehow and it was just gone. We were certain it was an answer to prayers. You’d think after that, After I prayed and prayed for it to be gone, that I would be content. But I wanted more. I wanted the original feet pain fixed. I still wanted my life back. Don’t get me wrong, I have no words for how happy I was that the EM was gone. I don’t want to gloss over this or minimize it. We were beyond thrilled. I was grateful every single night my feet did not flare up. But, somehow, that wasn’t enough. And maybe it should have been, but I still wanted to be pain-free.

I went back on the doctor trail looking for more solutions to my feet pain. I won’t bore you with all the details of the additional tests, theories and solutions that I tried during this time. Suffice it to say, it was a long list. This went for another exhausting year and a half and in October of 2014, I stumbled upon Dr. Stracks and TMS. I had previously learned about Dr. Sarno and his work and I dismissed it as bunch of wishy-washy nonsense. But now, I was literally at the end of my rope. I had not one thing left to try. I was desperate and had nothing to lose. The day after contacting Dr. Stracks, I found myself attending my first discussion panel in this very room.

I had briefly read about TMS (tension myositis syndrome) or MBS (mind-body syndrome) before attending and the stories seemed so far-fetched to me. The idea that my brain was keeping me in a state of pain due to unexpressed emotions just didn’t compute for me. My pain is real, I thought. My pain is severe and not being caused by some undealt with feelings. But after listening to the speakers on the panel, I was hopeful and I set up an appt with Dr Stracks. He reviewed my medical history and asked lots of questions about my past, my personality traits, how I cope with emotions, what was happening in my life when the pain began. After a long discussion, he did think my pain could be related to TMS. The big indicator being that in 13 years, not one doctor had ever found anything wrong with me. Not one test had ever found anything. What is the likelihood that someone with my level of pain would have no physical signs of the pain? I held out that doctors just hadn’t found the cause yet. Or that they had missed something along the way or that there were not tests developed yet to detect what was causing my pain.

To say I was skeptical of TMS and this working for me was an understatement. Every doctor I had ever seen was always extremely confident in their diagnosis of my pain and their proposed solution. Multiple doctors had told me they were certain they could fix my pain. (For the record, Dr. Stracks did not claim that). But I had nothing else to try so I figured why not give this a shot. I attended Dr. Stracks’ class and worked thru Dr. Schubiner’s book – Unlearn Your Pain which was an eye-opening experience.

In the book, I was asked to take a look at my childhood and personality traits. It was no secret to me that I had to deal with a good bit of stuff growing up. I had parents that had me when they were 17 years old. There was a lot of drinking and partying along with a lot of yelling and fighting. Often times it was a scary environment to grow up in. But that was no secret to me. I didn’t feel like I was repressing any emotions in this area. I journaled extensively around the fear I had growing up and the relationship I had with my dad, but I didn’t feel like I was having any ephiphanies. I looked at my personality traits and many of those seemed common in people with MBS. I was able to check the boxes for perfectionism, having high expectations of myself, wanting to be liked, being conscientious, being hard on myself, being overly responsible (and for me since a very young age), often worrying, having difficulty making decisions, following rules strictly, and having difficulty letting go. It seemed obvious my personality type fit the profile!

I understood that in order for my pain to go away, I needed to believe in this being the cause of my pain at a gut level. Intellectually I completely was on board with TMS, but I knew I still wasn’t certain it was the cause of my pain. I still knew that part of me believed my pain had a physical cause. I was finding it easier to believe that repressed emotions could cause headaches or stomach pains, but I was having a hard time believing it would choose to cause feet pain and only when I’m standing. I had heard many success stories, but it was hard to find any information around TMS and feet pain. Dr. Stracks put in me in touch with one of if his former patients that had also had feet pain. I spoke on the phone with this patient at great length and this was very helpful in convincing me that feet pain could also be a mind-body syndrome.

I made a conscious decision to stop thinking of my feet pain as something to figure out from a medical stand point. I realized through journaling, that although my past was not something I had been suppressing, it certainly had not been easy and I had been minimizing the impact it likely had on me. Dr. Stracks and I talked about what had been happening in my life around the time my feet pain started. Nothing lined up perfectly, but my parents did get divorced in 2000 and my pain started in 2001. I had a lot of stress in my life right before that time. I had just finished college and had nowhere to live, no money to my name, no job lined up and my relationship with my dad had completely fallen apart. It still didn’t feel like these things were the catalysts to my pain. Dr. Stracks and I discussed the possibility that the pain may have started from a physical cause, maybe it was plantar fasciitis initially. But once the physical pain healed my brain didn’t get the memo. It kept sending pain signals down to my feet. And then the viscious cycle began. The pain perpetuated the worry and fear of the pain and the worry and fear perpetuated the pain. Overtime it became a learned pain. My body and brain expected that every time I stood, I would experience pain. I became fearful of how long it would be before that pain would set in. Without knowing it, I was constantly monitoring and gauging when/how the pain set in. Then the worry and fear thoughts would come…what if I can’t sit down, what if the pain gets worse, what if I can’t get through the grocery store and I have to sit down in the aisle, what if I get stuck talking to someone and I can’t get away to sit down, what if, what if, what if. If nothing else, it was clear I had a lot of fear and anxiety around the pain.

So, if you guys are anything like me, you are listening to me speak and you are thinking to yourselves ‘tell me exactly what you did to get better.’ I remember sitting there taking copious notes of exactly what the speakers did to improve. I wanted so desperately to be in their shoes. I was willing to do whatever they said. Unfortunately, I learned no two people heal in the same way. What worked for many of the speakers simply did not seem to work for me. My improvements were gradual. Very gradual. I didn’t have any huge successes from any one thing. I just kept moving forward. Things that really seemed to help me were the following:

- Decreasing the fear around the pain. This was a big one. When I noticed my brain going down the path of worry, I had to put a stop to those types of thoughts. Sometimes I had to do it hundreds of times a day. Each time a fear or worry thought came into my mind, I had to stop it dead in its tracks.

- The book the Great Pain Deception by Steve Ozanich – it’s a lengthy read but I appreciated just how dire his situation had become and how he was able to overcome it with mind-body techniques. I highlighted so much of the book and have gone back to the book again and again. It just really spoke to me and I could see myself on many of the pages.

- The forum tmswiki.org – This is a wonderful website where you can ask all your TMS related questions and get answers from others who have gone through it. There are success stories and an area to ask TMS therapists questions as well. This site was hugely helpful to me.

- Skyping with a TMS therapist – through the TMSwiki site I was put in touch with a therapist in California that specializes in counseling patients with TMS. The therapist was able to give me practical ways to work on TMS in small, manageable chunks. One thing we discussed was counting how many times I think about the pain on a daily basis and using positive self-talk or a each time these thoughts creeped into my head. Well, I ended up losing track of all the times I thought about my feet and the pain. I told him I didn’t know how to think of the pain less, but overtime, very slowly, I learned to decrease and now, nearly stop these types of thoughts.

- Another big one was putting into practice a concept called ‘outcome independence’ – I remember being on the tmswiki forum and the moderator was commenting on how to take the pain’s power away you need to overcome your preoccupation with it. Outcome independence means your definition of success is independent of a specific outcome. He said think how outcome dependent you tend to be with your pain. So your feet hurt when you take a walk. Every time you take a walk, you monitor it. You say, "Okay, today the pain started after a block. Yesterday it started after a block and a half." "Today it was a 3 out of 10 when I returned home. Last week it was a 7 out of 10 after the same distance."

When you have a good walk, you feel happy, optimistic, feeling like you're on the right track. When you have a bad walk, you feel down, defeated, bad about yourself and your prospect of ever getting rid of the pain.

He said This attitude, this outcome dependence is feeding the pain cycle. It's reinforcing its very purpose.

Change your definition of success. Work on it. Success is no longer measured by whether or not you have a good walk. Success is measured by how little you care.

At the beginning of your walk, tell yourself, "It doesn't matter how much it hurts afterward. What matters is how little I let it affect me; how I refuse to let my mood, my self-perception, my feelings about the future be determined by how much pain I'm in afterward." This was probably the BIGGEST change in thinking for me and I probably saw the greatest results from this.

- Next, Taking a break from working on it – after a year of working on my pain from a TMS stand point, we were moving from Chicago to the suburbs. I decided to stop skyping with my therapist for awhile bc things were so chaotic with the move. He was adamant about not stopping our sessions during a stressful time like a move. But guess what, on moving day I walked roughly 22,000 steps according to my husband’s fitbit and my pain was maybe at a level 2! I was blown away! Up until this point, I had been seeing some small improvements, but this was impossible to dispute! I was beating it and there was no denying it.

- And that brings me to acknowledging the small wins. I was always waiting for the big improvements that I had heard and read about, but that is not how things worked for me. I think it was in the Unlearn your pain book, it asks if you can ever recall a situation where the pain would typically be present, but it wasn’t. For example, I typically always have feet pain when standing in place for more than few minutes. And as time passes, the pain gets worse. But one time when I was at a party, after having worked on TMS for about a year, I realized I had been standing in place for nearly an hour with very minimal pain. My natural reaction would be to rationalize this away or dismiss it as a coincidence, but I had to start recognizing small wins as evidence that it was working! And the more evidence I could find, the greater my belief in TMS and that this process could actually work for me.

- Next I had to recognize that success is not linear – this was and still is a frustrating concept to deal with. Many times along the way I would have some good days, followed by some days of setbacks. The most important thing I did during those times was to try not to get hung up on the setbacks. I had to talk to myself and tell myself it’s just the TMS holding on for dear life. That it doesn’t want to be extinguished and it’s trying anything to stick around. It’s definitely disappointing when this happens. But it will happen and you have to push through it and stay on course. Go back to reading the books, get on the forum, go back to the basics of what worked for you in the beginning.

So, where am I at now…I’m holding strong at about 90% healed. I don’t know if I’ll ever be 100% and I don’t actively try to achieve that. Being at 90% healed, I’m able to live my life mostly the way I want to. I still experience pain when doing a long day of standing and walking. And this is frustrating for me, but I try to take it in stride and be patient. But this past fall I put myself to the ultimate test and we took our 4 year old to Disney World. We always said if we did Disney I would just have to be in a wheelchair and even with as well as I was doing, we agreed we wouldn’t be upset if I ended up needing one. Well, we did three 10-12 hour days at Disney without a wheelchair. I wasn’t pain-free, but I did it and it was a far cry from me crawling around my house on my hands and knees back in 2012. The crazy thing is, and this will prove how determined TMS is, when I got back from Disney, it was like my brain tried to re-wire the memory. I started telling my husband that the trip hadn’t been that successful and that I had been in pain. I was disappointed that I had to use a small trail stool to sit while in some of the lines. My husband thought I was crazy. He couldn’t believe I was forgetting how well I had done just a week earlier. TMS is down-right evil that way. But my setbacks are much less frequent now and I can’t believe I’m saying this, but some days go by where I don’t think about my feet at all!
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Hey Jodie - just saw your interview with Dr Stracks recently and remembered reading your story here. I'm dealing with something like EM myself and hoping to treat it via neuroplastic healing methods like those for TMS. I know your own EM resolved seemingly separately to any mindbody work (and at least back in 2017, you mentioned you had difficulty even believing it was TMS, which is where I'm at lol), but I still take your story as a point of hope that it can go away as quickly as it comes. Thank you for sharing, and I'm glad you're still doing well.

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Can't believe I'm a SUCCESS story - Feet pain 15 years 90% gone!!

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Can't believe I'm a SUCCESS story - Feet pain 15 years 90% gone!!

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