New here... trying to fully embrace TMS for my complicated story

Hi everyone! I was introduced to TMS a few months ago from a friend and have been reading Dr. Sarno’s books (among others), watching videos/listening to podcasts on TMS, and lurking on this forum. I have a pretty complicated story (as I am sure is common) that I wanted to share and get some input and support on. I am sure I have TMS, but I have so many “problems” my doubt remains on if they are ALL TMS. I know it is important to try and rid that doubt and fully accept the diagnosis. I hope you can help me get there. I warn you, this is long, but I would really really appreciate some feedback on my story. Unlike many other forums, this one seems so hopeful and positive so I hope I can gather some of your wisdom for my situation… well… my life! Because this is my life! Thank you!

I was a healthy active person for the first 42 years of my life. The last 10 of them I ran daily, did half marathons and marathons. I had no pain issues and only 2 health problems (stress incontinence from childbirth and osteoarthritis in my 3rd metatarsal on my left foot from some unknown injury in my 20s). These were both holding me back in my running and I decided to have surgery for both at the start of 2024. I had the surgeries back to back, with only 25 days in between. I did NOT COPE WELL with these surgeries. I was obsessed and fearful if they both “worked” to fix both of my issues so I could get back to running because a Boston Marathon Qualifier was in sight. Both surgeries required time off of running and walking, and these were my ONLY coping skills for my very stressful life.

2 months into my recovery from the foot surgery, I was back to walking a few miles a day again. One day I was walking my dog and I suddenly could not place my left foot down on the ground. Like my foot didn’t work. I was terrified and convinced that I had injured myself in PT and with the little bit of running I had tried. I had severe pain in my left calf and ankle. (The surgery was on my toe, but it was like my ankle did not work, it kept rolling to the side).

Soon ensured the worst month of my life where I was essentially immobile. I couldn’t even walk to my mailbox. I walked around the house like a toddler holding on to furniture. I sat on the couch for weeks just panicking, ruminating, and just trying to get through each minute until I had my next doctor’s appointment. My doctors were clueless. I saw multiple providers (my podiatrist, PT, my PCP, Sports Med, 2 neurologists) had tons of tests and was finally diagnosed with a focal dystonia or “Runner’s Dystonia” which if you Google is a horrific diagnosis as there is rarely a full recovery and limited treatment options. At this point I said could live without running but I could not live without walking. I saw my life as being “a mom on the couch” and being unable to do anything ever again. I begged and prayed to whatever powers that be to just be able to walk again to just be able to carry out basic tasks of life.

Other than the Dystonia, which was enough of a terrible diagnosis in itself as I felt that it ruined my life, through the period of time from the first surgery in January 2024 to March 2025, I have had many new physical symptoms of “chronic” problems which I never had previously in my life, or if they existing were at an incredibly low level where there was no impact on me.

In order of diagnosis (or being told that I was suspected to have this diagnosis or would soon): Overactive Bladder, Raynaud’s, Dystonia, Chronic Regional Pain Syndrome, Chronic Idiopathic Pruritis (itching), Tinnitus, Vertigo (told I am could be developing Meniere’s Disease), Severe Environmental Allergies (enough to warrant allergy shots and daily medications), Migraines, and Chronic Idiopathic Urticaria (hives, enough to warrant a monthly monoclonal antibody like Xolair). Of course through all of this I have developed severe anxiety and had panic attacks for the first time. And of course majorly depressed as I’ve felt that I am going to be a disabled person for the rest of my life and all of these problem are only going to get worse.

To speak to the CRPS, I was told I have this as it can develop after surgery. However, never felt I fit that picture as I did not meet the full criteria and my pain was never centered in that area. My pain can be anywhere in my body, but primarily is involved in anything that is related to walking or running and if got worse, it would STOP me from being able to walk again. All of my toes, both ankles, both knees, both hips, sometimes back. One diagnosis that IS correct is PTSD which is the only one I have not officially received but given my career I am able to diagnosis myself. My core fear is losing my ability to walk again (due to injury, due to dystonia) and not being able to care for my family and myself. So if I have just the littlest of a pain, a twinge, or something cracks, or doesn’t feel good, I go IMMEDIATELY into panic mode and spend 99% of the day focused on that body part which of course amplifies the pain. I’ve had about a dozen what I call “fake injuries” over the past year or so and I’ve had probably about 10 X-rays and 4 different MRIs. I’ve been convinced I’ve had stress fractures, torn ligaments, severe tendinitises, but none of them showed anything to warrant any treatment.

The proof kept saying there is nothing wrong with you. But I could not understand how pain so severe could not have a physical cause, but there wasn't. The pain would magically go away once it was confirmed I was ok.

I also started to, quite frankly, call bullsh*t after my last few diagnosis such as the severe allergies, Menieres, and Migraines. Like the pain, they all come and go, they get worse when I’m told I have a problem, they go away when I’m told I am fine or I pay no mind to them.

I am a medical provider myself and so it is hard to not be the “good patient” and trust the medical field and their diagnosis and treatments. But I’ve had so much trauma where I was abandoned and fired by medical providers after I developed Dystonia and labeled as having CRPS. Basically no one wanted to have anything to do with me and I was seen as a basket case… well because I was! (Wouldn’t you be?) I had already had months of feeling that no one would help me and no one could help me. I now understand I've been living fight or flight for years now, but this completely send me off the edge.

So I’m scared in going it alone, but I know that is what I need to do. I know that this work is work I have to do on my own. I know that this is the true way to heal. My career (psychiatry) fortunately has led it to be very easy to accept Dr. Sarno's teachings and I always have been a fan of Freud. Early on when I was being worked up for my Dystonia diagnosis I kept half joking to my friends "This is Conversation Disorder!" I might have been outdated, but I wasn't wrong.

Dystonia is not mentioned as a TMS diagnosis but there is so much overlap in your nervous system being over-activated leading to the dystonic movements it has to be TMS or at least related to TMS. I have always believed for my Dystonia that my brain was strong enough to give me those symptoms, it is strong enough to stop them. I have the proof of it too. I went from needing to use a mobility scooter in April of 2024 to being able to run a 5k 6 months later. But it is not consistent and I have flares or fears of injuries that put me back into not being able to walk or run.

So why do I post now? I had an appt with my Physiatrist yesterday and told him I have TMS (which of course he did not know of) and that despite pains here, there, and everywhere, that it is a mindbody issue. I did not ask for any more imaging or any work up or potential treatments. We don’t have any scheduled follow up. I’m scared. What did I do? My left knee when I left that appointment was like “WHAT!!! YOU DIDN’T MENTION ME?” and let me have it all yesterday and is still letting me have it today.

I can accept many of my diagnosis are TMS, because I’ve seen them come and go. I fit the "personality" and lifestyle of a TMSer 100%.

What doubt lingers is the “what if” this part of my body (currently my left knee) IS actually injured? I have had a Dystonia flare up 2 weeks ago (interestingly enough the flare up came on during a walk with someone else where I was having a very stressful conversation). This one has made my left leg stiff like a peg leg. But I approached it as TMS so I did not stop my activity and slowly and gently still tried to walk some and carry on my normal life... which helped I'm coming out of it. BUT left knee was not moving as it should and got stresses on it that it shouldn’t have had. My mind is fully of the horror stories from other Runner's Dystonia friends of mine who develop "compensation injuries" so I just keep waiting for my time.

It cracks and pops, which I don’t know if TMS can do. I know I’ve had other body parts do this (everything cracks and pops) but what if this is the ONE TIME I have something really wrong with me? And yes, the left knee is just the focus of the day. (Fueled by further panic we are going on a 3 week vacation with tons of walking in a month and I'm afraid I won't be okay). I always have the question what is X pain is the ONE TIME it's not TMS? How do you know?

Thank you for reading. I appreciate you!

 

Hi,

Welcome aboard! This forum is fantastic for giving hope. A great book written by a person here who healed from CRPS is Defying the Verdict, by Tamara Gurin, @TG957 She and another forum member, @miffybunny both healed from CRPS, and now they are TMS coaches.

Tamara also has a blog on healing from CRPS here.
I hope these help. They have helped me. I have CRPS symptoms, but I’ve never been diagnosed.

How did you go from a mobility scooter to running in 6 months? That’s fantastic! Maybe you can do that again.

The place you need to start is Sarno. Read his books. You might like The Divided Mind best. It’s his last book and goes extensively into non-back related TMS, also known as TMS equivalents. Dystonia is a TMS equivalent.

The crux of the cure is bravery and self discovery.

 

You will have doubts. That is part of the TMS process. You do have a lot of the common TMS symptoms. Your next step is to start the SEP program that is free here on the site if you haven't already. It's free and it helps you start to look at your self through education and journaling.

Welcome-and this is a great place to ask questions and to be encouraged!

 

Thank you for your kind words! Yes I have read Tamara's book and it was life changing.

I have read the Divided Mind, Healing Back Pain, and currently am on the MindBody Prescription. I was introduced to TMS with Dan Buglio's Pain Free You. The reading has helped me so much. I would say just learning about TMS decreased my pain about 50% but there is a lot of work to be done still and I can still have very bad days. When other things flare up like my itching, I am way more relaxed about it and say to my body, I hear you, but we are okay.

How did I go from a mobility scooter to running? Well, literally one step at a time. Before I was diagnosed with Dystonia, I saw a sports MD who told me I was not injured and get out of the calf boot my podiatrist put in me when she had no idea what was going on, and he told me to WALK. It took me about 5 days to believe him that I could and nothing was wrong. (An aside, I had had an MRI but 36 hours after I got it, the health system I got it at had a Cyber Attack and it hadn't been read yet and no one could get at it, so that compounded my complete panic and trauma).

When I decided to try I tried to walk 2 times around my cul de sac still using soft ankle brace he gave me to stop the radical muscle contractions and it was harder than any marathon I ever did. I called it quits for the day. The next day I tried to walk again a little bit longer. And then I called it quits for the day. And each day I repeated trying a little longer and I got stronger. I eventually made it up to 1 mile, 2 miles, 5k, 4 miles. I have done Botox treatments, but I also have had months without any Botox where I've been able to walk and run again with mild symptoms. In fact I started the running after the Botox had worn off. The Dystonia will be the hardest to crack for sure, and the hardest to not rely on medical treatment as I have a young child and a dog and need to function enough in daily life to care for them. My goal is of course is to heal myself from within and not do medical interventions for it in the future. So again, one step at a time.

 

Thank you!

Yes I have checked out the SEP and I plan on starting as well. I have got my blank journal ready to go!

I saw Day 1 was an introduction post among others activities and journaling. I felt yesterday telling my doctor that I have TMS and "walking away" (maybe not totally there yet) was my Week Zero.

Such wonderful resources and programs on the site... I'm so grateful!

 

Great advice given above. I am a runner (multiple BQs) and I have beaten a number of TMS symptoms after discovering Sarno. Feel free to look up my threads on this, one dealing with my Hip Surgery and another with some chronic Knee Pain.

Ironically, I am currently also dealing with some dystonia symptoms now that I haven't yet resolved so I immediately noticed your username for this post.

You have some work ahead of you, but absolutely what you describe sounds like TMS. Read Sarno. Make Evidence Sheets. Read this forum. Listen to Podcasts. Get educated.

 

First of all, CONGRATULATIONS on your amazing achievement !!! Secondly, setbacks are normal; they are part of non-linear recovery. You need to prepare yourself to have them, otherwise, they will discourage you and push you back into the same TMS thinking that prevents you from succeeding. TMS can produce any symptoms that your desperate brain can come up with, cracks and pops being some of them. The weirder are your symptoms, the more likely they are TMS. Doubts are even more normal part of the process than setbacks, they happen to everybody.

I already told this story about 5 times on this forum, but I feel pressed to repeat it. As I was preparing for a very challenging backpacking trip in the mountains, I started getting neuropathic pain in my foot, right where I have a bunion. If I had to walk more than 1 hour, it was killing me. As a very experienced TMSer, I started treating it as TMS, but it refused to go away, so I concluded that something was really wrong with me. $500 of chiropractic treatments and many hours of exercises later, I was getting on the trail, with the pain still there. On day 1, I could barely walk, but I kept walking simply because I told myself that I had to. By day 3, the pain was gone, and I finished a 170-mile hike without it.

Keep running because you have to! Keep going on vacations because you have to! Keep living your life because you have to!

 

Thank you! Evidence sheets I haven't heard of yet and will check out! If they are what I think they are, they will be very helpful for the part of my mind that can still be rational and scientific!

Congratulations on your BQs! I hate to say it but I think the marathon ship has sailed for me, but of course at this point my priority is a healthy and happy life, and not just one that is obsessed about running.

I am very curious about your dystonia symptoms, if you are willing to share or have already spoken about it on other threads?

 

Thank you! Yes I try to keep telling myself in any recovery from anything (injury, depression, substance use, surgery) there are always better days and worser days and it's never in a straight steady upward line. I have been thinking some about the "Extinction Burst" or "Symptom Imperative" phenomenon as this seems to be a well ingrained pattern in me as I look back over my past year or so. I will make huge improvements with my running, and then I will have a flare up with my dystonia or major pain somewhere... convincing myself I've "overdone it" or that I've injured myself with the activity of running. Sometimes it can be an onset of another thing, like I had a great 5k run on a treadmill which is the hardest thing for me to do and I got a huge flare up of hives that night. I am trying to notice/calmly acknowledge these symptoms, not panic, and look more into okay WHAT brain/body are you trying to tell me now?

Thank you for sharing... I had not seen that story yet about your backpacking trip. A huge trauma for me is that I was diagnosed with Dystonia a few days before we were set to go to Disney World. I had told people for weeks I'd be there on a mobility scooter, and everyone laughed like you are silly you'll be fine, you just have some minor injury you'll be healed by then. I kept telling people there was something majorly wrong with me and no one listened. I did not get better and I did end up needing to use a mobility scooter there which was a huge blow after I had just ran the marathon there a year before. So every time I have a trip coming up, especially to Disney (which is my trip next month) I relive this trauma and pre trip anxiety and I know there will be a flare of symptoms, especially the pain. This is also the same timeline as last year.... just over a month out I had the severe onset of symptoms. I'm expecting it to be a rocky month, but I am hopeful I will have the same experience that once I am there I will be okay!

 

I had forgotten that I had also started a thread on Parkinsons, this is where I go into some of my recent dystonia issues.

https://www.tmswiki.org/forum/threads/parkinsons.27400/ (Parkinson's)

 

Hi Runner -- Since I'm big on looking for clues, I think the area to explore is around that Boston Marathon qualifying race.
Maybe there was some thoughts inside that were scared of that and determined to prevent you from being able to participate.
First it was to go get 2 surgeries. And then the after effects.
Sometimes healing from surgeries or illness create cytokines and for whatever reason TMS brains often don't react well to them.
Once they get us down temporarily, we end up staying down even though by that point it's our brains causing the problems.

Do you "journal" or rather "write shit down?"

I think you might have a lot of good stuff inside to get out.
The way you anthropomorphized your knee in your post is on the right track. Maybe you need to have a good talking to your body parts. Or to listen to what they have to say.

In the current situation, that vacation is probably a bogey monster. I'm not sure why but for a lot of us our little selves inside seem to be scared of vacations!

Wishing you good luck as you wade through this process.

 

Thank you Jan. I did think twice about using that name, but I decided to use it because it is my YouTube channel's handle as well as my Instagram handle. Back in September I created a YouTube Channel because the personal stories and hope were seriously lacking for those who had been diagnosed with Runner's Dystonia and later created an Instagram when I realized this is where most of the people in our small group congregate and communicate. For both I wanted to make it as obvious as possible what my channel and account are about. I understand that having a name identifying with a disorder is not exactly recovery-positive. But, I decided though to keep it as I hope that maybe I can drag some people in the Runner's Dystonia community to see the light, and I want to make sure that it's clear I'm the same person. If it is truly offensive or not in the spirit of the forum or triggering, I will change it, but at this point to me I don't feel like it's a barrier to my recovery.

And my Avatar is of a stuffed animal donkey that I got when I was 4 years old and still have, my most cherished childhood posession. Thank you.

 

Thank you for your response! I'll take all the detective work I can get. Very interesting about Boston. Something that was a bigger thing though which I think you are spot on for your thinking was I was set to do the Goofy Challenge at Walt Disney World in January of 2024. For those who don't know, the Goofy Challenge is running a half marathon and then a marathon on back to back days. (Many people have heard of the Dopey Challenge which is a 5k, 10k, half, and full over 4 days, so Goofy takes the hard part of that.) Disney races are notoriously very difficult to get into, and somehow I got in 17 minutes after it went live which was shocking. I couldn't believe my luck. Then, literally a few days I actually had gained an entry to it I was running and had foot pain. The next day I went for my run again, and could barely get home. I stopped running and made an appt with a podiatrist where I was diagnosed with "severe" arthritis. I was still going to try to do it (I had 8 months to train and some of the interventions we did helped) but it was like the rest of 2023 I kept having issue after issue that stopped me from training. The training as you can imagine is do a run one day, say 8 miles, and double it the next, to be 16 miles, to emulate the race conditions. I did have a ton of anxiety about this. I ended up raking my left pinky toe under the laundry room door which I was convinced I broke I was in so much pain. I couldn't even put on shoes for days. I ended up getting pneumonia fro 6 weeks. I ran the half marathon at Detroit which was on a whim and supposed to be "easy" and got gastrointestinal very ill and almost quit and ended up in the medical tent and almost had to go to the hospital. Because of my stress incontinence I would never go well hydrated into a race because it was so bad. After I slept and could barely eat for days, I woke up and told my husband, I am going to drop out of the Goofy Challenge and I'm going to go have these 2 surgeries instead so I can rid myself of both of these problems so I can actually run marathons without needing to change incontinence pads and without pain. I figured it I wasn't having an arthritis late up and if I'm not in the bathroom 3x during a race to change pads I can shave those 5 minutes off to qualify to Boston.

Wow typing this all out, I wonder was my body already showing me all of the ways it didn't want me to continue to push my limits with my marathon running. Sometimes I think my Dystonia came up because my body was literally saying the only way we can make you take care of me and slow down is if I make it so you literally can't put your foot down. Thank you for finding that clue.

I will look into the cytokines and think about is my body still think I'm not recovered from the surgeries yet. Or can't get out of that pattern. I told a family member who had surgery a month ago who had a difficult recovery that even though you were asleep during the surgery, your body was not asleep. You may not remember it, but your body does. I think I really terrified my body by going under general anesthesia 2x in 25 days and with the physical changes the surgeries made.

I have not started to journal yet, I would like to finish the last Sarno book first. My YouTube channel thus far has been a good therapy for me as I say all the things on it I don't hold back, it's been quite therapeutic. I will journal, I know it's super important, but I am also pacing myself as do not to approach this recovery in the way I approach most things in my life as it needs to be by the book, or perfect, or I SHOULD do this or HAVE to do that. Ever since this all happened, I can only do so much in a day, and just "one extra thing" like a trip to the grocery store will wipe me out. I will get there.

 

Ok, let's break this down.
I think you nailed it with the Disney race. 100%.

On the other hand, I don't think you are interpreting it quite right. If I'm reading you correctly, you are saying that your body was telling you to slow down so you should listen to that. NOPE.
From a TMS perspective, the first part is right. Your body is telling you to slow down.
But hold your horses there ---- it's NOT your body telling you to slow down.
It's the little part of your brain that is scared and doesn't want you to succeed.
It's not the part of your brain that trains and takes care of your body.
The first part is scared for unrelated reasons.
The second part knows how to take care of your body when it is not misdirected by the first part.

So.....if we continue to look from a TMS angle.....we have to move from scared to ask where is the hidden ANGER?
Right now you are getting your fingers ready to type back to me, "I'm not angry! I'm a positive person. I don't get very angry."
That's what we all thought!
Only to find out that there is some dumb, leftover anger sitting inside of us.

When I say journal, I don't mean it in terms of journal journal. I mean it in terms of discovering this hidden anger and letting it come to the surface and away.
The workbooks will do it a different way but I had success with starting with a piece of paper and a pen and writing,
"What am I angry about?"
Well, shocking thing happened first time I did this. I started having all kinds of physical reactions just thinking about that question!
In 3 minutes I had to stop because I thought my heart was going to leap out of my chest.

I tried again the next day. This time I started with, "That was weird!" and then I just let it all flow out my pen and onto the paper.
The physical pain that I was dealing with for months and months evaporated.

As you've seen in Sarno's materials, for Sarno anger is the key emotion.

Find the anger and you stop the pain.

For some people just knowing that it comes from this the pain stops it without even finding it.

Anyway, pardon the long post. Some food for thought for you.

 

No I do mean my brain not body was trying to slow me down, sorry! Thank you for catching that and it always bears repeating and reinforcing.

I'm a super angry person. I can tell your 1000 things I'm angry about and that I hate in my life. I've always been full of "the hate" as my college friends would say and I am very critical of others and a quick to find that people are inept or stupid. Just being honest. The problem though is of course I am not expressing my anger and frustration at others. I don't actually get angry. I play nice and shove it down instead of speaking my mind. The only way it comes out is a solid b*tch session which I am very good at, but I do not rage at people or yell at people. When first reading Sarno I did see how I had the conscious anger, but not the unconscious anger. Now that I understand better how the inner child/id/narcissist/selfish part create that and that's the stuff that I need to get at.

I started journaling this weekend while I continue to read Sarno, read the forums, listen to the podcast, and talk to others about TMS. Been thinking a lot about things.

Very interestingly last night, I started to feel very rageful. Very very very angry. But not at anything in particular. There was no acute situation that had happened. I felt my skin getting hot. It was like how anxiety can come over me but it was anger. It was very uncomfortable, but very very interesting. That feeling has continued somewhat today.

 

I think you are getting to it. Seems like when you get close to the hidden stuff, your body feels it and tries to stop you from getting close.
And yes, for me it felt like anxiety washing over me too. Scared the crap out of me and I actually said out loud (while I was by myself), "I rather have the pain than this!" Talk about my unconscious coming right out my mouth!
Luckily I tried again the next day and my symptoms which were in the throat area cleared up.

 

Hi, your story really moved me because I saw myself in it in many ways, even though my experience has some differences. At first, they suspected I had cervical dystonia, which turned my life upside down quite a bit. For months, I let myself be influenced by the idea of having dystonia and the possibility of Botox injections — even in my mouth — which in the end turned out to be useless, because I didn’t actually have it, and fortunately I never went through with them.
Your experience perfectly reflects what I lived
A body that begins to “break down” after stressful events, intense fears, and surgeries experienced with anxiety.
A sequence of diagnoses that change, that lack solid foundations but arrive like labels (sometimes extremely heavy ones) on a dysregulated nervous system.
An enormous number of symptoms that come and go, shift, and change over time.
Pain and fear feeding into each other.
Thanks for your story