JulietBlue
Peer Supporter
Hi everyone,
I am new on my journey to discovering TMS. A little over a week ago, I was searching the net for possible treatments for the completely debilitating chronic pain hell I have been trapped in for over 9 years now. I've been hesitating to post my story on here because there would be so much to tell going back so many years that I honestly didn't know where to begin or end and I didn't want to post a novel on here thinking people might be scared away from reading. But, I have been through A LOT; that's just the truth of it. And I'm going to be leaving out things just for the sake of cutting down the length of this but I'm going mention what I think may be important and some of the many questions I have now. Please bear with me.
Currently, I'm 39 yrs old and I started reading "The Great Pain Deception" just in the last week and learned about Dr. Sarno and his work. I definitely see myself in the classic descriptions of TMS. I've been aware for many years now that my nervous system is very "keyed up". I've had a lot of physical and emotional trauma in my life, anxiety and depression and a mix of a bunch of different things which makes things a little more confusing for me in trying to figure this out now. But I'm almost 100% positive that I have and have always had TMS but what makes my case maybe a complicated one, is that I also believe that I did have a structural abnormality that I was diagnosed almost 6 years ago now, and one that I also believe I had to have surgery to correct.
Pain ruined my life. Period. I lost every single thing you can possibly lose, my career, home, almost every single friendship, relationship, even most of my small family gave up on me long ago. I've been useless to myself and everyone else for years. I even almost lost my mind and it's been a very lonely, frightening journey with very little support. A few short weeks ago, I was still praying for my life to end and trying to figure out how it would be possible for me to go through with doing so by the end of the year. I want to say I might have some small glimmer of hope now but to be honest with myself and whoever may be reading this, part of me is struggling to hold onto that hope. I think I'm feeling more confusion than ever, just trying to figure all of this out.
A huge part of me thought when I started reading Steve's book that yes, this does sound a lot like me. But..but..but.. I'm sure many of you know how that goes in the beginning. I've been making myself move again more, cleaning things that haven't been cleaned and sorted in ages. Began journaling again and meditation, a little walking and a small amount of more physical activity each day. Been trying to ease into that but mainly because I think all of this is good for me anyway. I decided to just try distracting my mind from the stabbing, aching, shooting pains I have mostly in my head and face but other places as well, like namely my whole left shoulder, neck, back of the head area going into my head and face, and behind my eyes.
A few weeks ago, I couldn't read a book at all because the pain in my face and especially eyes and head alone were so distracting and debilitating. I couldn't/ didn't want to talk, eat/chew, go anywhere, do anything, including taking care of myself and my personal space. I was having to rely on one family member I live with to help me do everything and It's been my worst nightmare and even this one person doesn't seem to understand at all what I've been going really through. I've always been very independent my whole life and I really don't want to have to depend on anyone anymore. It's been years, but I had to surrender all of that when I had surgery almost 6 years ago. I recently decided that the pain medication I had been using for the last 4 or 5 years to dull everything, was actually making all of my pain/headaches even worse. So I decided to just quit. My doc only gave me the option of going on another opioid type drug to get off the one I was on. I decided I didn't want to do that. I wanted to "feel" what my pain levels and headaches were like without them. I just want to feel anything but physical pain and mental and emotional numbness, period. Plus, I was sick and tired of being the most miserable, inactive, zombified person you could ever imagine and all of my pain in my body, was just getting worse as time went on. I haven't been anything close to myself in years. Frankly, I'm trying to figure out who "myself" even is off of all these drugs. I'm still struggling with brain fog in relation to quitting the drugs and some thyroid issues I'm currently having as well due to a steroid medication I was put on a few months ago that I believe caused me to have adrenal insufficiency; more on that later. So please be patient with me if you choose to read this. Hopefully, I don't repeat myself too much and I apologize in advance if I do. If anyone does decide to read this, I can only say I'm very grateful to you for doing so and would consider any kind of response or feedback nothing short of a blessing. I need some kind of direction. I was once a very bright, intelligent person once and I just hope and pray that she comes back someday soon, somehow. But I just don't know if that's possible at this point or if too much damage has already been done. I just want to be a healthy person in every way so very badly that I'm willing to try or do anything else I haven't or maybe, someone out there has been through something similar to me. Although, I can't find one just yet.
I found TMS last week while still in the midst of acute opioid withdrawals. My general pain levels did seem to improve when I quit the pills almost 3 weeks ago ( Other then some increased widespread muscle pains at first) and then even more so for a few days last week after I started reading Steve's book and watching and listening to some of Dr Sarno videos online but since then, I've regressed some again and still not sure if it’s due to my lingering doubts or because I may still completely wrong about all of this. I really feel like my cognitive functioning is still pretty poor these days and reading and being able to absorb what I'm reading and to remember what I'm reading has been quite a challenge lately; In fact , Steve's book is the first book I've been able to attempt to read in the longest time due to the severe pain I was in and where it's been located. Couldn’t even look at a tv much either. I never identified as being addicted to these medications, but I was very well dependent on them off and on, mostly on, for everyday for at least the last 5+ years. So here's my history as it relates to physical pain. But looking back now, I can see how emotional trauma was always present in my life and at some of these points, had become just too much for me without realizing it at the time, but again, for the sake of length and where my doubts mostly lay, I'll try to focus more on what physically happened to me.
I started to suffer from occasional stomach issues when I was only around 5 years old. Looking back, I think a big part of this was some kind of undiagnosed general and social anxiety disorder. I was sick with my stomach often, sometimes to the point of vomiting. I used to get this sick feeling a lot when I knew I had to leave the house, to go to school or camp or anything else. I didn't want to be separated from my Mother who would abuse me one day, but be loving and nurturing the next. She took a lot of her rage out on me, which would make me angry, and If I showed any anger towards her, her anger would only escalate. So I did learn to hold a lot of these feelings inside. I’ve always been pretty laid back for the most part but also have also been a chronic worrier. My Father has always been a very anxious, worrying type who basically put the fear of everything into my sister and I. It was also around this age when my older sibling told me one night that I was grinding my teeth in my sleep. I remember this clearly because I had no idea what she was talking about and had to have her explain it. I would go on to do this almost every night that I slept, even now.
A couple years later is when I first remember getting occasional headaches. Just this awful pain in my head that would keep me from being the active kid I was. I remember getting them most in the summertime, when the weather would be really hot or humid but I'm sure I got them during other seasons of the year as well. Or if I was running or playing too much, I sometimes would get a headache too.
In my early to mid teens, my stomach issues seemed to calm down a bit but I was still getting some here and there. I loved acting, did a lot of theatre and dance growing up and I know I would get that nervous feeling sometimes before doing a play or dance performance. Not every time though. But it was around this age, maybe 15 or 16 where I started noticing some muscle pain and tension in my neck and shoulders. It wasn't constant, but it was bothersome at times. I'd be sitting in a class and I would get very uncomfortable trying to shift around in my seat and relax my shoulders as much as possible. Carrying a backpack sometimes seemed to make it worse. I started getting worsening headaches, that eventually turned into occasional migraines. This always seemed to be related to the neck and shoulder pain, or stem from it after it would get to be too much. The pain would go right into my head and face. Would tell primary doc about these pain and headaches and of course probably due to my age, I was basically told it's just something that I probably inherited. No explanation for the neck and shoulder pain that was very real to me.
A couple of years later at 18, still a pretty steady progression with the severity and frequency of these pains and migraines/headaches. But just tried to live around them as best as I could. About a week after my High School graduation, I got into my first major car accident. This is in 1996 when there were no seat belt laws and automatic belts and airbags were in newer model cars, but I was driving a late 80's model that had none of that, and regretfully, I wasn't wearing my seat belt. I would from that day on though without exception. My head hit and shattered the windshield. I had abrasions in my forehead and eyes just missing my iris and pupils. Was diagnosed with whiplash and concussion. So after that and for a while, I had even more pain in my neck and shoulders and now constant headaches for a month or two after and still the occasional migraines that seemed to still be connected to the neck and shoulder pain. Started seeing my first neurologists after the accident and I began to get a little frustrated that they didn't seem to be listening to me either when I told them that this really all started BEFORE the accident, but I was well aware that it didn't help things either. Again, tried to go on hoping that things would somehow get better but I had this feeling that they would just continue to progress and I was right.
At around 20/21, I started getting this horrific pain in my stomach and esophagus. It seemed to come out of nowhere one day. I got really, really sick with this. Lost around 25 -30 lbs in just under two months. Was referred to gastroenterologist who ran all the tests including an endoscope to look inside my stomach. Was ultimately diagnosed with ulcer and a severe case of GERD. Started antacid medication that I'm still on to this day. Again, was told this condition was probably inherited from one or both of my parents. My older sibling was diagnosed with the same thing. and again, all during this, still getting neck/shoulder pain and headaches/migraines seem to occur more often. It seemed like each passing year was getting more and more pain and headaches. As an aside, I remember the year leading up to this, one thing that happened that caused me great fear and worry. My Father had a mild heart attack and had to have a quadruple bypass. I remember I cried and worried A LOT. I can’t remember exactly but I think this all happened right around this time. Again, thinking in TMS terms here for this. He had the surgery, and ended up ok. But I would continue to worry about him for quite a while after.
When I was 23, had another major car accident. This time I was hit from behind from a very intoxicated driver while going full speed on a major highway during a late night rainstorm. Car spun around several times before coming to a stop almost tipping over, thankfully didn't. That same car had lost control as well and slammed into my drivers side door about a second after my car came to a complete stop. I remember my neck being jerked first from getting it from behind then spinning, then sit from the side. in almost all directions. Again, diagnosed with whiplash and severe muscle spasm. Was wearing seatbelts thankfully so no concussion. Just even more tightness and pain in my neck and shoulders.
Same age 23, was also going through some major upheavals in life after the accident. Had my first long term relationship end, I had been living on my own independently with this person and after the break up, was forced to move back home with my parents. Away from most of my friends. This was all very difficult for me at the time and started suffering from major anxiety and depression. The anxiety caused a whole bunch of physical symptoms, one being that my stomach issues began to get worse again. Started taking anti anxiety medication for the first time in my life and it actually seemed to help. But it didn't have any effect on the neck/shoulder and headaches/migraines. Those continued progressing steadily.
A few years after that, I was diagnosed with high blood pressure. I was told again that this was probably due to the fact that both of my parents had suffered from the same condition and that it was simply genetic. Started trying a few different medications to control it but it was still on the high side at most doctors visits. Was finally put on a medication that seemed to help and still taking that medication today as well. Around this same age 26, I suddenly one day noticed that I couldn't really bend my right knee. It just wouldn't allow me to bend all the way down and started to hurt, a lot. Right in my knee cap. Like a hammering feeling. Started doing the orthopedic and PT rounds when it would not go away on it's own at all. Tried PT two separate times in around a year’s time trying to avoid having a scope done. An MRI showed I had Chondromalacia Patella and the scope showed further damage to the cartilage behind my knee cap where pieces were starting to break off and float around. Had first scope, and pain and swelling remained and only seemed to get worse a year following the surgery and still doing physical therapy. Went to the next state over to see second orthopedic surgeon who treated famous athletes from one of the major sports teams. He's known for only doing surgeries when absolutely necessary. Or so I was told. ( I should mention here now that in the State where I grew up and lived, we're notorious for having a sub par and limited medical system in just about every field. So many people including myself travel to the next state over if possible if they want to get anywhere with their conditions.) He told me my kneecap was shifted, not sitting in it's proper groove and this was causing the damage and irritation. Suggested 2nd scope to get it back on track so to speak. Had it done. Was told that it was just how I developed and years dance study growing up had probably just advanced things to that point. All made sense at the time, had 2nd procedure done. For the most part, I healed and it did improve. But the knee would always continue to give me problems. Still suffering from occasional but more frequent neck/shoulder pain and migraines during this time. Started taking my first migraine attack medications that it seemed like I was needing more and more to depend on to get over them for a while, until the next.
Around age 30, that pain and those migraines, were still becoming more and more frequent. This was now happening on more days than not. I was working full time, sitting behind a desk at a computer which is btw something I hated and never wanted to do but had to support myself somehow if I wanted to be independent. I had given up on my dreams that I had had since childhood years before that for multiple reasons that I felt were beyond my control. I mention this because I do think that if I do in fact have TMS, then yes it might apply to that but also, having to sit like that all day using my arms so much only seemed to intensify my already problematic neck and shoulder pain. Some days I would be really, really uncomfortable and the inevitable migraine would come. I think it's around this time that I also started to notice that this pain and headaches/migraines, would be much more prominent on the left side.
Within two years, the pain had progressed rapidly and it was now a chronic, 24 hour condition. Everyday or every other day I had this horrible left sided pain that was now spreading down my arm and into my hand making it numb. The pain was also crawling up the side of my neck and head, into my jaws and eyes and it was becoming more and more difficult for me to move my head. Then one day, I noticed this pain and tightness right around my left collarbone. If I moved my head a certain way, it felt like the muscles underneath would catch and then uncatch. I was quickly becoming disabled by this pain but it was yet to become even worse. I was frantically going from one specialist to another. Neuros, Orthopedists, Chiros, I thought it has to be either my shoulder or my neck, something has to be causing this now debilitating pain that was very very rapidly destroying my entire life. I saw an Orthopedic surgeon who did an MRI of my left shoulder and told me I had very severe tendonitis and bursitis in that rotator cuff and a small tear and that I would need to have a scope done to correct this. Being that I was now completely desperate for answers and relief, I thought maybe this has what has been causing all of this all along. Had the scope done and knew right away that there had to be something else. I was still having this constant, stupefying pain all in my head and face, neck, shoulder and arm. The entire upper left side of my body. I was now housebound for the most part. I went back to work a couple months after the surgery to give myself time to see if maybe it would help. No change at all.
I was now waking up every, single morning with a full blown left sided migraine attack. The tightness around my collarbone was now a constant, poking type pain. It felt like a bone was trying to come through my chest and side of my neck. I felt this thing every minute of the day and night. I would go to work and be sick and in excruciating pain just trying to complete full days without having to leave to go to the ER with level 10 plus pain. My left arm constantly hurt and typing and sitting or even standing sure as hell didn’t help it. I was in bad condition and rapidly worsening and I knew it. My boss even let me try to work from home because she could see how much I was struggling and I couldn't even do that. Light and sounds just made my head throb all the more day and night, I was always sick and nothing would ease any of the pain or discomfort. I'd have to run to the bathroom constantly to be sick or I would go to my car during my lunch break just to lay down. I started having to call out of work more and more because I couldn't drive in this condition much less get up out of bed to get ready for work or anything else. It became so I could barely even take care of myself and I was on my own, alone.
I was now going to the ER quite often, shaking, crying, writhing almost screaming in pain. I remember during some of these attacks that I would be thinking of the scene from the movie "Alien" where the little baby alien pops out of that poor dudes chest. My blood pressure would be DANGEROUSLY high, almost unheard of I was told and I was already taking medication for that. It felt like my collarbone or something was trying to poke it's way out and the ER staff and the doctors I was seeing, would have no answers for me which was one of the most frustrating and scary things I have ever experienced. No one knew why I was getting this constant pain and chronic daily migraines.
Then one day, it happened. I woke up and I could no longer turn my head at all to the left side. It would get stuck as soon as I would start to turn it, like something was in the way. I knew something hard was doing this. The same "hard thing" that felt like it was trying to poke out of my body. I thought I was going crazy and at that point felt like it was a sure possibility that this was going to drive me there. Speaking of driving, I had to completely give that up, and I couldn't work anymore. That was it. I couldn’t even move. If I didn’t have a doctor’s appointment and I wasn’t in the ER, all I could do was lay on my bed, either on my back, or on my right side and try not to cry, because crying would only make the migraines and facial pain even worse. Trying to move when the whole upper left side of my body didn’t or couldn’t was more excruciating than I can even put into words. And the head and facial pain besides, again, no words.
Starting seeing specialists in the next state over because I was getting nowhere where I lived. I didn't know it at the time but I had an appointment with one of the most well known Thoracic Outlet surgeons in the country. He looked at my tests, showed him right there how my neck movement was completely impinged on the left side. Finally, I found someone who seemed to understand what I was telling him. I had a migraine right then and there that day in his office. He told me I had something called Neurogenic Thoracic Outlet Syndrome, and in fact, in all of his years of doing surgery for it, I was one of the most severe cases he had ever seen. He told me I had this congenital anomaly where I was born with this set of first ribs that only a certain percentage of the population are born with (Lucky me!), and an even smaller percentage that are born with them, ever get these kinds of problems from it. It was rare but it does happen. What I was feeling was indeed bone impingement when I tried to turn my head. ( 1st rib and clavicle, I believe) There were nerve bundles and blood vessels between these bones that run up through my neck to my head and down my arm to my hand. That was the reason for the severe pain and migraines I was getting on the entire left side. He told me that there was danger of blood clotting with this as well along with nerve damage. ( This surgeon is also known to be very, very conservative and told me as much himself. Will only do surgery in the most severe cases. Otherwise, other things are tried to avoid it like physical therapy and botox injections.) He recommended we do the surgery as soon as possible to avoid any further complications. We scheduled the surgery for the next week.
I was 33 years old when I had this 1st rib resection and scalene muscle ( attached to rib and neck) removal surgery. I checked into the hospital alone that day and remain there alone for 5 days. I have a very small family; my parents by this time were having their own severe health problems and were unable to travel an hour away to the hospital where I was. I was single, childless and dating was the last thing I was able to focus on during the few years leading up to this. ( still the case) By this time I had lost almost all of my "friends" who didn't know what I was really going through and were moving on with their own lives., So most gave up on me after a while. I was scared to death but thought, this is the only shot I have at getting my life back. I have to do it. The surgery took around 5 hours and I ended up spending 5 days in the hospital afterwards for recovery with a drain attached to my chest. The pain was horrific. I really can't say if it was worse or not, prior to. I guess worse in a different way. There are two ways to remove the 1st rib, one is through an incision slightly above the collarbone. The other, is underneath the armpit. Mine was done above the collarbone. I remember waking up from the surgery and the raw nerve pain immediately hit me like a ton of bricks but the first thing I did, was to move my head to see if I could turn it to the left, I could. I was at least happy about that. I had asked him before the surgery what could have caused this happen? How did that bone just get in the way like that? He basically told me that it could have been a couple of things, one being that when you’re born with these extra ribs, as you grow the space in the thoracic outlet can get smaller and smaller and you start getting sometimes gradually. Or, a previous car accident could have been the cause when my neck moved a certain way and this bone that's attached could be slightly "jolted" out of place. I could see how it could have been either or a combination of both of these things in my case. But to this day I still don't know for sure, probably never will. Now, to further complicate things, I wonder if there’s even a small possibility that if maybe years of muscle spasm from tension and the resulting oxygen dep might have had anything to do with this at all? Could that have pulled that bone even a little out of place? Doesn’t seem likely given the bone impingement and not being able to turn but I guess it might be possible. I had been holding in quite a lot, esp “tension” almost my whole life. And personally, in the couple of years leading up to this, I was going through all the worse things in life there is to deal with. Death of a loved one, Loss of my first home, another ended long term relationship, etc. Could it all just be a big coincidence?
The surgeon told me that recovery would be long and could be difficult for me given the severity of how badly the nerves had been compressed for so long before the surgery. Now I had even more angry nerve pain from the surgery itself. He gave me a home physical therapy program to follow for one year. He told me that most physical therapists don't know how to handle the aftercare for this type of surgery and would most likely only hurt me more then help me. So, for this reason he has most of his patients do home therapy. Showed me the exercises would have to do for a year. Also told me that it could take up to two years for my nerves to calm down. I knew I was in for another long road ahead but I was also optimistic that I would heal normally and that the neck/chest/head/facial pain would eventually fade away.
Some of the post surgery nerve pain did eventually fade away after a couple of years. But those were very long years of isolation and physical and emotional pain. I was still having pain and weakness in my shoulder, severe tightness and pain all around my neck into my head and face. And sometimes severe arm pain. Was still having this constant, head -rocking headache day and night that never went away, and was still having to take migraine medications for attacks at least a couple of times a week. I’m just recently am not getting as many migraines, but sometimes the spasms in and around my head, neck and shoulder cause me to get one (but this has even gotten somewhat better on some days just in the last week ). And to make matters worse, I began to feel like on follow up visits, my surgeon was beginning to write me off. Which was hard for me to believe but it sure seemed that way. I would tell him that sure, my range of motion in my neck was better but that I still had a constant headache since around 2010 and now even as I type this. Especially on my left side and I still get stabbing pain in my left eye mostly but pain and blurriness behind both. When I stand up, or walk around, my left shoulder feels like it’s pulling down and away from my body and I have a tendency to try to pull this shoulder up when I’m upright or walking around. It also now looks dropped or droopier Than my right side. My trapezius muscle on the left side is also way bigger and more developed than on my right. My posture is still off.
Going back to the surgeon and follow up appointments; He passed me off after a while to pain management specialists who did nothing but injections that did not work, he said removing the bone and the scalene muscle, he created plenty of room in my left Thoracic Outlet so there would be no further compression but that I would someday need to have my right side removed but it could wait until I started to have symptoms. I've been to physical therapists, chiropractors,etc where I live who had never seen anything like my case before and would take xrays and MRIS of my neck because of the pain I was getting there had been steadily getting worse in and of itself besides the shoulder and head pain. They told me I also have scoliosis of the neck, and I do. Lost the curve in it completely. My left shoulder would be weaker ever since the surgery even today. Infact, typing this much has always been a problem for me, but lately, I'm trying to build up strength on that side and try to ignore the discomfort I've been feeling for years. I do notice this shoulder pain on the affected side does spasm and bother me even more when I’m stressed out or upset, this in still goes in my neck, face and esp eye on the left side. Doing it now in fact, as I recall and worry about all of this. But can also happen if I try to use my left arm “too much” again, trying to ignore this as best as I can lately and sometimes notice a reduction in it.
A pain management doc that I only recently stopped seeing put me on heavy painkillers a year and a half after the surgery because I still couldn't function at all, not even to make it to my various doctors appointments. I gradually became even more depressed and withdrawn from the world. A virtual recluse by my mid 30's. In the last few years ( And I think this is where TMS may still come into play but not sure) I've had many other physical ptoblems. Saw every possible specialist and tried every kind of treatment you could imagine. My teeth grinding has been a lot worse the last several years. I hated wearing a mouthguard to sleep and started doing so sporadically. On two of these occasions I fractured two teeth. Dentists have told me that my facial pain and headaches could be from the teeth grinding itself perhaps further aggravating the spasm and pain on my “weak” side. I also get some jaw popping or cracking occasionally on the opposite side and popping in that same ear pretty often. Have been told by dentists that my jaws seem ok, that the problem is “muscular” and just wear a mouth guard. However, that doesn’t stop the grinding, just somewhat protects my teeth.
BOTH my knees started to hurt A LOT during the year I was recovering from the TOS surgery and have gotten worse, particularly my right one which is the one I had the two surgeries on years ago. I was most recently diagnosed with Hoffa's syndrome in that knee and that seemed to start suddenly and separately from the arthritic type pain I was already getting in it. They said this syndrome could happen from a bang or something hitting the knee. The only thing I can remember happening a few months ago was that I went to change a light bulb and had to step up and off a chair to do so and when I stepped down, horrible pain shot through my knee and I felt like I was going to pass out for a second but sure this pain started even before that. It’s just when I noticed how bad it had gotten. I was supposed to start physical therapy for this knee and my posture and tmj problems again with a new therapist the last couple of weeks and I have yet to go to my first appt. My last orthopedist appt with for my knee a few months ago, they prescribed me oral steroids to try to get some of the pain and swelling down. They never told me or warned me about the risks of these medications and I got pretty sick both while I was on them and most especially when the two week taper ended. It felt like I was going through severe withdrawals of some sort. I had very severe abdominal pain for a few weeks, chronic fatigue that would have me just laying on my bed for those same few weeks. New and severe muscle pain in my groin on both sides, I had no appetite and that has been slowly improving the last few months, and horrible, severe brain fog that felt like I had a wool cap on my brain. I’m still experiencing that one now although it’s not as bad as it was at first, it’s still daily and very worrisome. Coupled now with what is probably brain fog and cognitive problems from long term opioid withdrawal, I think. I realize that I probably am experiencing some secondary adrenal insufficiency from these steroids. I feel like they really messed with my Cortisol levels. The worst part is I told the Orthopedist about this and that I wish I had never tried them, and they basically said there was nothing they could do about it now since I already finished the taper. I’ve been calling around for over a month in my state to try to see either an endocrinologist or a naturopath who could do the proper testing and perhaps help me with this. So far I have called a long list of those two types of specialists locally and the ones I called or they no longer practice here, or they are not currently accepting any patients or I have wait times for new appts 3 or 4 months long.. So like with other things, I’ve been trying to be patient and looked up so info about how to start treating myself for this to encourage my adrenal system to balance itself back out, with diet, getting enough sleep, etc. But this new problem has been very bothersome and slow going to correct itself as well. Like I said, the medical system locally is pretty limited and not very good. I’m starting to look at going into that other state to see one but some endos don’t even seem to believe it exists and some treat it by putting you on more medication to balance it out, possibly for life. I don’t drive and getting transportation is often a challenge for me as are my current finances so I can’t afford to travel to another state to see another physician of any kind just for them to tell me they can’t help me. I hesitate to travel to see a TMS doc for this same reason, even though I’m thinking I should try anyway.
I really do want to figure ALL of this out and recover completely if it’s possible. So far in the last week or two, I identify a lot with the description of TMS in relation to my other problems. Maybe even the post surgery stuff I am experiencing with my shoulder and neck but not sure. I’m very confused at this point. ( Obviously). I have been thinking a lot about going back to the surgeon who did my rib resection and asking him questions about my postural imbalance and continued pain and weakness on that side. I haven't done so the last few years because I felt like he just kind of did a cut and run and I don't want him to talk me into having the right side 1st rib out because I honestly don't think I could go through all of that again and I don't really get any pain on that side, yet. However, if this is what is causing the imbalance, one rib on one side, not the other. Then I may have to if I want to ever look or feel normal again. I can't even find any answers to this on any of the TOS forums I've scanned. Plus, I can't be sure that that’s not what is causing my continued neck and head pain although, it has improved somewhat lately. But I'm still left with constant pain in my face, head, neck and mainly left shoulder on one level or another. So far, enough to keep me pretty much where I’ve been the last 6 years.
Despite everything I'm still trying to apply TMS principles to all of my pain conditions or what I know of it so far. I do believe the brain has a huge role in all this and I’m trying to be conscious with regard to reconditioning my brain and doing practices to calm down my nervous system. I was also diagnosed with fibro a few years ago but I never felt like that was accurate. Yeah, my muscles have been tight and achey throughout my body and I know I hold a lot of tension in them, especially my upper body but mainly because I couldn't really be active at all with what is going on in my upper body and head every single day. I'm trying to push a little more physical activity the last week or two as well but so far my knee is still popping and cracking and hurting and difficult to bend. I’m trying to do more exercising at home to start moving more despite how my head and shoulder/neck feels, but my knee will only move so much and it hurts enough that it slows me way down when I’m trying to get on the floor or do any kind of lower body exercises. Again, still not sure if I should give PT a shot for that and my posture/shoulder problems but I’m really on the fence about that.. Yeah, I know, I’m a mess. It’s true. ( Also hard on myself a lot.)
So, in my case I think I MAY or MAYNOT have a perfect storm of TMS and structural. Like I said at the beginning of this very long story, I focused on most of my physical problems but I've had a lot of horrible, traumatic things happen to me along the way as well and I know I have a long history of repression. I just can't really see how those things could have caused the mechanical problems with the TOS that happened but not ruling that out. But for the anxiety, stomach issues, HBP, TMJ and maybe even my knee issue, I could see how it could be TMS. I also wonder if TMJ is considered a TMS issue, how I can stop this one thing when I only seem to do it in my sleep. I continue to cause damage to my teeth because of this, even with a mouthguard. I’m slowly undoing all the dental work I had when I was younger to make my teeth so nice. And again, not working yet so I do worry how I’m going to pay to undo all the damage I’ve already done with that. I had an appt scheduled with a TMJ/headache specialist in the next state but I had to cancel it when my transportation fell through. Then starting reading about TMS.
I feel like I’m still too young to be living like this and having all of these different medical issues. I’m angry with the physicians who caused some of these things or just have been so apathetic to what I’ve been through and still dealing with. I don’t want to live like this anymore, I really don’t.. Even with postural difficulties, asymmetry, should my body still be healed by now? Why am I still getting constant headaches? Facial pain? I’ve also had my eyes checked although not recently but was told they are ok. I’ve tried to rule things out as I’ve gone a long as well. I know TMS books say not to continue seeing a chiropractor but I’ve been working with one for a year now and doing home traction to try to get the curve back in my neck. My neck pain itself has improved somewhat compared to what it was but I can’t figure out why I’m still getting headaches and pain. Had CT scans as well. This is going back before I was diagnosed with TOS however just to rule out brain tumors and such with the chronic migraines. But all of that came up ok thankfully, when I had them done and I was no doubt in even worse shape then than I am now..
I guess I’m so lost right now that I’m hoping for any kind of feedback on any of this jumbled mess if it makes sense to anyone at all. I feel like I have more to say and more questions to ask but I think if I want anyone at all to read this, I better stop here. Does this sound like I have this perfect storm that I mentioned earlier? All I can find online so far that Dr Sarno said about TOS, and no I haven’t gotten to read his books yet but the only thing I found so far was that he said that it’s rare to have the bilateral rib anomaly and rare that it cause TOS to the point where surgery is needed. Or something like that. Does it even matter now? So what can I/should I do now about all of these physical and mental issues that have kept me from having any kind quality of life? I just would do anything for some of that back. I have so much to rebuild and I feel like I need to start feeling better in order to do that.
Again, if you read this whole thing and especially if you chose to respond; either way I thank you from the bottom of my heart. I know it couldn’t have been easy to read this till the end. I’m just throwing this out there in hopes that at least one person can get through it and give me any kind of response, direction or feedback. I also tend to be on the sensitive side ( just read about HSPs in SteveO’s book) I ask that if you do decide to respond to this, please be kind. And again, thank you for taking the time to read this and respond if you so chose. Really, thank you.
I am new on my journey to discovering TMS. A little over a week ago, I was searching the net for possible treatments for the completely debilitating chronic pain hell I have been trapped in for over 9 years now. I've been hesitating to post my story on here because there would be so much to tell going back so many years that I honestly didn't know where to begin or end and I didn't want to post a novel on here thinking people might be scared away from reading. But, I have been through A LOT; that's just the truth of it. And I'm going to be leaving out things just for the sake of cutting down the length of this but I'm going mention what I think may be important and some of the many questions I have now. Please bear with me.
Currently, I'm 39 yrs old and I started reading "The Great Pain Deception" just in the last week and learned about Dr. Sarno and his work. I definitely see myself in the classic descriptions of TMS. I've been aware for many years now that my nervous system is very "keyed up". I've had a lot of physical and emotional trauma in my life, anxiety and depression and a mix of a bunch of different things which makes things a little more confusing for me in trying to figure this out now. But I'm almost 100% positive that I have and have always had TMS but what makes my case maybe a complicated one, is that I also believe that I did have a structural abnormality that I was diagnosed almost 6 years ago now, and one that I also believe I had to have surgery to correct.
Pain ruined my life. Period. I lost every single thing you can possibly lose, my career, home, almost every single friendship, relationship, even most of my small family gave up on me long ago. I've been useless to myself and everyone else for years. I even almost lost my mind and it's been a very lonely, frightening journey with very little support. A few short weeks ago, I was still praying for my life to end and trying to figure out how it would be possible for me to go through with doing so by the end of the year. I want to say I might have some small glimmer of hope now but to be honest with myself and whoever may be reading this, part of me is struggling to hold onto that hope. I think I'm feeling more confusion than ever, just trying to figure all of this out.
A huge part of me thought when I started reading Steve's book that yes, this does sound a lot like me. But..but..but.. I'm sure many of you know how that goes in the beginning. I've been making myself move again more, cleaning things that haven't been cleaned and sorted in ages. Began journaling again and meditation, a little walking and a small amount of more physical activity each day. Been trying to ease into that but mainly because I think all of this is good for me anyway. I decided to just try distracting my mind from the stabbing, aching, shooting pains I have mostly in my head and face but other places as well, like namely my whole left shoulder, neck, back of the head area going into my head and face, and behind my eyes.
A few weeks ago, I couldn't read a book at all because the pain in my face and especially eyes and head alone were so distracting and debilitating. I couldn't/ didn't want to talk, eat/chew, go anywhere, do anything, including taking care of myself and my personal space. I was having to rely on one family member I live with to help me do everything and It's been my worst nightmare and even this one person doesn't seem to understand at all what I've been going really through. I've always been very independent my whole life and I really don't want to have to depend on anyone anymore. It's been years, but I had to surrender all of that when I had surgery almost 6 years ago. I recently decided that the pain medication I had been using for the last 4 or 5 years to dull everything, was actually making all of my pain/headaches even worse. So I decided to just quit. My doc only gave me the option of going on another opioid type drug to get off the one I was on. I decided I didn't want to do that. I wanted to "feel" what my pain levels and headaches were like without them. I just want to feel anything but physical pain and mental and emotional numbness, period. Plus, I was sick and tired of being the most miserable, inactive, zombified person you could ever imagine and all of my pain in my body, was just getting worse as time went on. I haven't been anything close to myself in years. Frankly, I'm trying to figure out who "myself" even is off of all these drugs. I'm still struggling with brain fog in relation to quitting the drugs and some thyroid issues I'm currently having as well due to a steroid medication I was put on a few months ago that I believe caused me to have adrenal insufficiency; more on that later. So please be patient with me if you choose to read this. Hopefully, I don't repeat myself too much and I apologize in advance if I do. If anyone does decide to read this, I can only say I'm very grateful to you for doing so and would consider any kind of response or feedback nothing short of a blessing. I need some kind of direction. I was once a very bright, intelligent person once and I just hope and pray that she comes back someday soon, somehow. But I just don't know if that's possible at this point or if too much damage has already been done. I just want to be a healthy person in every way so very badly that I'm willing to try or do anything else I haven't or maybe, someone out there has been through something similar to me. Although, I can't find one just yet.
I found TMS last week while still in the midst of acute opioid withdrawals. My general pain levels did seem to improve when I quit the pills almost 3 weeks ago ( Other then some increased widespread muscle pains at first) and then even more so for a few days last week after I started reading Steve's book and watching and listening to some of Dr Sarno videos online but since then, I've regressed some again and still not sure if it’s due to my lingering doubts or because I may still completely wrong about all of this. I really feel like my cognitive functioning is still pretty poor these days and reading and being able to absorb what I'm reading and to remember what I'm reading has been quite a challenge lately; In fact , Steve's book is the first book I've been able to attempt to read in the longest time due to the severe pain I was in and where it's been located. Couldn’t even look at a tv much either. I never identified as being addicted to these medications, but I was very well dependent on them off and on, mostly on, for everyday for at least the last 5+ years. So here's my history as it relates to physical pain. But looking back now, I can see how emotional trauma was always present in my life and at some of these points, had become just too much for me without realizing it at the time, but again, for the sake of length and where my doubts mostly lay, I'll try to focus more on what physically happened to me.
I started to suffer from occasional stomach issues when I was only around 5 years old. Looking back, I think a big part of this was some kind of undiagnosed general and social anxiety disorder. I was sick with my stomach often, sometimes to the point of vomiting. I used to get this sick feeling a lot when I knew I had to leave the house, to go to school or camp or anything else. I didn't want to be separated from my Mother who would abuse me one day, but be loving and nurturing the next. She took a lot of her rage out on me, which would make me angry, and If I showed any anger towards her, her anger would only escalate. So I did learn to hold a lot of these feelings inside. I’ve always been pretty laid back for the most part but also have also been a chronic worrier. My Father has always been a very anxious, worrying type who basically put the fear of everything into my sister and I. It was also around this age when my older sibling told me one night that I was grinding my teeth in my sleep. I remember this clearly because I had no idea what she was talking about and had to have her explain it. I would go on to do this almost every night that I slept, even now.
A couple years later is when I first remember getting occasional headaches. Just this awful pain in my head that would keep me from being the active kid I was. I remember getting them most in the summertime, when the weather would be really hot or humid but I'm sure I got them during other seasons of the year as well. Or if I was running or playing too much, I sometimes would get a headache too.
In my early to mid teens, my stomach issues seemed to calm down a bit but I was still getting some here and there. I loved acting, did a lot of theatre and dance growing up and I know I would get that nervous feeling sometimes before doing a play or dance performance. Not every time though. But it was around this age, maybe 15 or 16 where I started noticing some muscle pain and tension in my neck and shoulders. It wasn't constant, but it was bothersome at times. I'd be sitting in a class and I would get very uncomfortable trying to shift around in my seat and relax my shoulders as much as possible. Carrying a backpack sometimes seemed to make it worse. I started getting worsening headaches, that eventually turned into occasional migraines. This always seemed to be related to the neck and shoulder pain, or stem from it after it would get to be too much. The pain would go right into my head and face. Would tell primary doc about these pain and headaches and of course probably due to my age, I was basically told it's just something that I probably inherited. No explanation for the neck and shoulder pain that was very real to me.
A couple of years later at 18, still a pretty steady progression with the severity and frequency of these pains and migraines/headaches. But just tried to live around them as best as I could. About a week after my High School graduation, I got into my first major car accident. This is in 1996 when there were no seat belt laws and automatic belts and airbags were in newer model cars, but I was driving a late 80's model that had none of that, and regretfully, I wasn't wearing my seat belt. I would from that day on though without exception. My head hit and shattered the windshield. I had abrasions in my forehead and eyes just missing my iris and pupils. Was diagnosed with whiplash and concussion. So after that and for a while, I had even more pain in my neck and shoulders and now constant headaches for a month or two after and still the occasional migraines that seemed to still be connected to the neck and shoulder pain. Started seeing my first neurologists after the accident and I began to get a little frustrated that they didn't seem to be listening to me either when I told them that this really all started BEFORE the accident, but I was well aware that it didn't help things either. Again, tried to go on hoping that things would somehow get better but I had this feeling that they would just continue to progress and I was right.
At around 20/21, I started getting this horrific pain in my stomach and esophagus. It seemed to come out of nowhere one day. I got really, really sick with this. Lost around 25 -30 lbs in just under two months. Was referred to gastroenterologist who ran all the tests including an endoscope to look inside my stomach. Was ultimately diagnosed with ulcer and a severe case of GERD. Started antacid medication that I'm still on to this day. Again, was told this condition was probably inherited from one or both of my parents. My older sibling was diagnosed with the same thing. and again, all during this, still getting neck/shoulder pain and headaches/migraines seem to occur more often. It seemed like each passing year was getting more and more pain and headaches. As an aside, I remember the year leading up to this, one thing that happened that caused me great fear and worry. My Father had a mild heart attack and had to have a quadruple bypass. I remember I cried and worried A LOT. I can’t remember exactly but I think this all happened right around this time. Again, thinking in TMS terms here for this. He had the surgery, and ended up ok. But I would continue to worry about him for quite a while after.
When I was 23, had another major car accident. This time I was hit from behind from a very intoxicated driver while going full speed on a major highway during a late night rainstorm. Car spun around several times before coming to a stop almost tipping over, thankfully didn't. That same car had lost control as well and slammed into my drivers side door about a second after my car came to a complete stop. I remember my neck being jerked first from getting it from behind then spinning, then sit from the side. in almost all directions. Again, diagnosed with whiplash and severe muscle spasm. Was wearing seatbelts thankfully so no concussion. Just even more tightness and pain in my neck and shoulders.
Same age 23, was also going through some major upheavals in life after the accident. Had my first long term relationship end, I had been living on my own independently with this person and after the break up, was forced to move back home with my parents. Away from most of my friends. This was all very difficult for me at the time and started suffering from major anxiety and depression. The anxiety caused a whole bunch of physical symptoms, one being that my stomach issues began to get worse again. Started taking anti anxiety medication for the first time in my life and it actually seemed to help. But it didn't have any effect on the neck/shoulder and headaches/migraines. Those continued progressing steadily.
A few years after that, I was diagnosed with high blood pressure. I was told again that this was probably due to the fact that both of my parents had suffered from the same condition and that it was simply genetic. Started trying a few different medications to control it but it was still on the high side at most doctors visits. Was finally put on a medication that seemed to help and still taking that medication today as well. Around this same age 26, I suddenly one day noticed that I couldn't really bend my right knee. It just wouldn't allow me to bend all the way down and started to hurt, a lot. Right in my knee cap. Like a hammering feeling. Started doing the orthopedic and PT rounds when it would not go away on it's own at all. Tried PT two separate times in around a year’s time trying to avoid having a scope done. An MRI showed I had Chondromalacia Patella and the scope showed further damage to the cartilage behind my knee cap where pieces were starting to break off and float around. Had first scope, and pain and swelling remained and only seemed to get worse a year following the surgery and still doing physical therapy. Went to the next state over to see second orthopedic surgeon who treated famous athletes from one of the major sports teams. He's known for only doing surgeries when absolutely necessary. Or so I was told. ( I should mention here now that in the State where I grew up and lived, we're notorious for having a sub par and limited medical system in just about every field. So many people including myself travel to the next state over if possible if they want to get anywhere with their conditions.) He told me my kneecap was shifted, not sitting in it's proper groove and this was causing the damage and irritation. Suggested 2nd scope to get it back on track so to speak. Had it done. Was told that it was just how I developed and years dance study growing up had probably just advanced things to that point. All made sense at the time, had 2nd procedure done. For the most part, I healed and it did improve. But the knee would always continue to give me problems. Still suffering from occasional but more frequent neck/shoulder pain and migraines during this time. Started taking my first migraine attack medications that it seemed like I was needing more and more to depend on to get over them for a while, until the next.
Around age 30, that pain and those migraines, were still becoming more and more frequent. This was now happening on more days than not. I was working full time, sitting behind a desk at a computer which is btw something I hated and never wanted to do but had to support myself somehow if I wanted to be independent. I had given up on my dreams that I had had since childhood years before that for multiple reasons that I felt were beyond my control. I mention this because I do think that if I do in fact have TMS, then yes it might apply to that but also, having to sit like that all day using my arms so much only seemed to intensify my already problematic neck and shoulder pain. Some days I would be really, really uncomfortable and the inevitable migraine would come. I think it's around this time that I also started to notice that this pain and headaches/migraines, would be much more prominent on the left side.
Within two years, the pain had progressed rapidly and it was now a chronic, 24 hour condition. Everyday or every other day I had this horrible left sided pain that was now spreading down my arm and into my hand making it numb. The pain was also crawling up the side of my neck and head, into my jaws and eyes and it was becoming more and more difficult for me to move my head. Then one day, I noticed this pain and tightness right around my left collarbone. If I moved my head a certain way, it felt like the muscles underneath would catch and then uncatch. I was quickly becoming disabled by this pain but it was yet to become even worse. I was frantically going from one specialist to another. Neuros, Orthopedists, Chiros, I thought it has to be either my shoulder or my neck, something has to be causing this now debilitating pain that was very very rapidly destroying my entire life. I saw an Orthopedic surgeon who did an MRI of my left shoulder and told me I had very severe tendonitis and bursitis in that rotator cuff and a small tear and that I would need to have a scope done to correct this. Being that I was now completely desperate for answers and relief, I thought maybe this has what has been causing all of this all along. Had the scope done and knew right away that there had to be something else. I was still having this constant, stupefying pain all in my head and face, neck, shoulder and arm. The entire upper left side of my body. I was now housebound for the most part. I went back to work a couple months after the surgery to give myself time to see if maybe it would help. No change at all.
I was now waking up every, single morning with a full blown left sided migraine attack. The tightness around my collarbone was now a constant, poking type pain. It felt like a bone was trying to come through my chest and side of my neck. I felt this thing every minute of the day and night. I would go to work and be sick and in excruciating pain just trying to complete full days without having to leave to go to the ER with level 10 plus pain. My left arm constantly hurt and typing and sitting or even standing sure as hell didn’t help it. I was in bad condition and rapidly worsening and I knew it. My boss even let me try to work from home because she could see how much I was struggling and I couldn't even do that. Light and sounds just made my head throb all the more day and night, I was always sick and nothing would ease any of the pain or discomfort. I'd have to run to the bathroom constantly to be sick or I would go to my car during my lunch break just to lay down. I started having to call out of work more and more because I couldn't drive in this condition much less get up out of bed to get ready for work or anything else. It became so I could barely even take care of myself and I was on my own, alone.
I was now going to the ER quite often, shaking, crying, writhing almost screaming in pain. I remember during some of these attacks that I would be thinking of the scene from the movie "Alien" where the little baby alien pops out of that poor dudes chest. My blood pressure would be DANGEROUSLY high, almost unheard of I was told and I was already taking medication for that. It felt like my collarbone or something was trying to poke it's way out and the ER staff and the doctors I was seeing, would have no answers for me which was one of the most frustrating and scary things I have ever experienced. No one knew why I was getting this constant pain and chronic daily migraines.
Then one day, it happened. I woke up and I could no longer turn my head at all to the left side. It would get stuck as soon as I would start to turn it, like something was in the way. I knew something hard was doing this. The same "hard thing" that felt like it was trying to poke out of my body. I thought I was going crazy and at that point felt like it was a sure possibility that this was going to drive me there. Speaking of driving, I had to completely give that up, and I couldn't work anymore. That was it. I couldn’t even move. If I didn’t have a doctor’s appointment and I wasn’t in the ER, all I could do was lay on my bed, either on my back, or on my right side and try not to cry, because crying would only make the migraines and facial pain even worse. Trying to move when the whole upper left side of my body didn’t or couldn’t was more excruciating than I can even put into words. And the head and facial pain besides, again, no words.
Starting seeing specialists in the next state over because I was getting nowhere where I lived. I didn't know it at the time but I had an appointment with one of the most well known Thoracic Outlet surgeons in the country. He looked at my tests, showed him right there how my neck movement was completely impinged on the left side. Finally, I found someone who seemed to understand what I was telling him. I had a migraine right then and there that day in his office. He told me I had something called Neurogenic Thoracic Outlet Syndrome, and in fact, in all of his years of doing surgery for it, I was one of the most severe cases he had ever seen. He told me I had this congenital anomaly where I was born with this set of first ribs that only a certain percentage of the population are born with (Lucky me!), and an even smaller percentage that are born with them, ever get these kinds of problems from it. It was rare but it does happen. What I was feeling was indeed bone impingement when I tried to turn my head. ( 1st rib and clavicle, I believe) There were nerve bundles and blood vessels between these bones that run up through my neck to my head and down my arm to my hand. That was the reason for the severe pain and migraines I was getting on the entire left side. He told me that there was danger of blood clotting with this as well along with nerve damage. ( This surgeon is also known to be very, very conservative and told me as much himself. Will only do surgery in the most severe cases. Otherwise, other things are tried to avoid it like physical therapy and botox injections.) He recommended we do the surgery as soon as possible to avoid any further complications. We scheduled the surgery for the next week.
I was 33 years old when I had this 1st rib resection and scalene muscle ( attached to rib and neck) removal surgery. I checked into the hospital alone that day and remain there alone for 5 days. I have a very small family; my parents by this time were having their own severe health problems and were unable to travel an hour away to the hospital where I was. I was single, childless and dating was the last thing I was able to focus on during the few years leading up to this. ( still the case) By this time I had lost almost all of my "friends" who didn't know what I was really going through and were moving on with their own lives., So most gave up on me after a while. I was scared to death but thought, this is the only shot I have at getting my life back. I have to do it. The surgery took around 5 hours and I ended up spending 5 days in the hospital afterwards for recovery with a drain attached to my chest. The pain was horrific. I really can't say if it was worse or not, prior to. I guess worse in a different way. There are two ways to remove the 1st rib, one is through an incision slightly above the collarbone. The other, is underneath the armpit. Mine was done above the collarbone. I remember waking up from the surgery and the raw nerve pain immediately hit me like a ton of bricks but the first thing I did, was to move my head to see if I could turn it to the left, I could. I was at least happy about that. I had asked him before the surgery what could have caused this happen? How did that bone just get in the way like that? He basically told me that it could have been a couple of things, one being that when you’re born with these extra ribs, as you grow the space in the thoracic outlet can get smaller and smaller and you start getting sometimes gradually. Or, a previous car accident could have been the cause when my neck moved a certain way and this bone that's attached could be slightly "jolted" out of place. I could see how it could have been either or a combination of both of these things in my case. But to this day I still don't know for sure, probably never will. Now, to further complicate things, I wonder if there’s even a small possibility that if maybe years of muscle spasm from tension and the resulting oxygen dep might have had anything to do with this at all? Could that have pulled that bone even a little out of place? Doesn’t seem likely given the bone impingement and not being able to turn but I guess it might be possible. I had been holding in quite a lot, esp “tension” almost my whole life. And personally, in the couple of years leading up to this, I was going through all the worse things in life there is to deal with. Death of a loved one, Loss of my first home, another ended long term relationship, etc. Could it all just be a big coincidence?
The surgeon told me that recovery would be long and could be difficult for me given the severity of how badly the nerves had been compressed for so long before the surgery. Now I had even more angry nerve pain from the surgery itself. He gave me a home physical therapy program to follow for one year. He told me that most physical therapists don't know how to handle the aftercare for this type of surgery and would most likely only hurt me more then help me. So, for this reason he has most of his patients do home therapy. Showed me the exercises would have to do for a year. Also told me that it could take up to two years for my nerves to calm down. I knew I was in for another long road ahead but I was also optimistic that I would heal normally and that the neck/chest/head/facial pain would eventually fade away.
Some of the post surgery nerve pain did eventually fade away after a couple of years. But those were very long years of isolation and physical and emotional pain. I was still having pain and weakness in my shoulder, severe tightness and pain all around my neck into my head and face. And sometimes severe arm pain. Was still having this constant, head -rocking headache day and night that never went away, and was still having to take migraine medications for attacks at least a couple of times a week. I’m just recently am not getting as many migraines, but sometimes the spasms in and around my head, neck and shoulder cause me to get one (but this has even gotten somewhat better on some days just in the last week ). And to make matters worse, I began to feel like on follow up visits, my surgeon was beginning to write me off. Which was hard for me to believe but it sure seemed that way. I would tell him that sure, my range of motion in my neck was better but that I still had a constant headache since around 2010 and now even as I type this. Especially on my left side and I still get stabbing pain in my left eye mostly but pain and blurriness behind both. When I stand up, or walk around, my left shoulder feels like it’s pulling down and away from my body and I have a tendency to try to pull this shoulder up when I’m upright or walking around. It also now looks dropped or droopier Than my right side. My trapezius muscle on the left side is also way bigger and more developed than on my right. My posture is still off.
Going back to the surgeon and follow up appointments; He passed me off after a while to pain management specialists who did nothing but injections that did not work, he said removing the bone and the scalene muscle, he created plenty of room in my left Thoracic Outlet so there would be no further compression but that I would someday need to have my right side removed but it could wait until I started to have symptoms. I've been to physical therapists, chiropractors,etc where I live who had never seen anything like my case before and would take xrays and MRIS of my neck because of the pain I was getting there had been steadily getting worse in and of itself besides the shoulder and head pain. They told me I also have scoliosis of the neck, and I do. Lost the curve in it completely. My left shoulder would be weaker ever since the surgery even today. Infact, typing this much has always been a problem for me, but lately, I'm trying to build up strength on that side and try to ignore the discomfort I've been feeling for years. I do notice this shoulder pain on the affected side does spasm and bother me even more when I’m stressed out or upset, this in still goes in my neck, face and esp eye on the left side. Doing it now in fact, as I recall and worry about all of this. But can also happen if I try to use my left arm “too much” again, trying to ignore this as best as I can lately and sometimes notice a reduction in it.
A pain management doc that I only recently stopped seeing put me on heavy painkillers a year and a half after the surgery because I still couldn't function at all, not even to make it to my various doctors appointments. I gradually became even more depressed and withdrawn from the world. A virtual recluse by my mid 30's. In the last few years ( And I think this is where TMS may still come into play but not sure) I've had many other physical ptoblems. Saw every possible specialist and tried every kind of treatment you could imagine. My teeth grinding has been a lot worse the last several years. I hated wearing a mouthguard to sleep and started doing so sporadically. On two of these occasions I fractured two teeth. Dentists have told me that my facial pain and headaches could be from the teeth grinding itself perhaps further aggravating the spasm and pain on my “weak” side. I also get some jaw popping or cracking occasionally on the opposite side and popping in that same ear pretty often. Have been told by dentists that my jaws seem ok, that the problem is “muscular” and just wear a mouth guard. However, that doesn’t stop the grinding, just somewhat protects my teeth.
BOTH my knees started to hurt A LOT during the year I was recovering from the TOS surgery and have gotten worse, particularly my right one which is the one I had the two surgeries on years ago. I was most recently diagnosed with Hoffa's syndrome in that knee and that seemed to start suddenly and separately from the arthritic type pain I was already getting in it. They said this syndrome could happen from a bang or something hitting the knee. The only thing I can remember happening a few months ago was that I went to change a light bulb and had to step up and off a chair to do so and when I stepped down, horrible pain shot through my knee and I felt like I was going to pass out for a second but sure this pain started even before that. It’s just when I noticed how bad it had gotten. I was supposed to start physical therapy for this knee and my posture and tmj problems again with a new therapist the last couple of weeks and I have yet to go to my first appt. My last orthopedist appt with for my knee a few months ago, they prescribed me oral steroids to try to get some of the pain and swelling down. They never told me or warned me about the risks of these medications and I got pretty sick both while I was on them and most especially when the two week taper ended. It felt like I was going through severe withdrawals of some sort. I had very severe abdominal pain for a few weeks, chronic fatigue that would have me just laying on my bed for those same few weeks. New and severe muscle pain in my groin on both sides, I had no appetite and that has been slowly improving the last few months, and horrible, severe brain fog that felt like I had a wool cap on my brain. I’m still experiencing that one now although it’s not as bad as it was at first, it’s still daily and very worrisome. Coupled now with what is probably brain fog and cognitive problems from long term opioid withdrawal, I think. I realize that I probably am experiencing some secondary adrenal insufficiency from these steroids. I feel like they really messed with my Cortisol levels. The worst part is I told the Orthopedist about this and that I wish I had never tried them, and they basically said there was nothing they could do about it now since I already finished the taper. I’ve been calling around for over a month in my state to try to see either an endocrinologist or a naturopath who could do the proper testing and perhaps help me with this. So far I have called a long list of those two types of specialists locally and the ones I called or they no longer practice here, or they are not currently accepting any patients or I have wait times for new appts 3 or 4 months long.. So like with other things, I’ve been trying to be patient and looked up so info about how to start treating myself for this to encourage my adrenal system to balance itself back out, with diet, getting enough sleep, etc. But this new problem has been very bothersome and slow going to correct itself as well. Like I said, the medical system locally is pretty limited and not very good. I’m starting to look at going into that other state to see one but some endos don’t even seem to believe it exists and some treat it by putting you on more medication to balance it out, possibly for life. I don’t drive and getting transportation is often a challenge for me as are my current finances so I can’t afford to travel to another state to see another physician of any kind just for them to tell me they can’t help me. I hesitate to travel to see a TMS doc for this same reason, even though I’m thinking I should try anyway.
I really do want to figure ALL of this out and recover completely if it’s possible. So far in the last week or two, I identify a lot with the description of TMS in relation to my other problems. Maybe even the post surgery stuff I am experiencing with my shoulder and neck but not sure. I’m very confused at this point. ( Obviously). I have been thinking a lot about going back to the surgeon who did my rib resection and asking him questions about my postural imbalance and continued pain and weakness on that side. I haven't done so the last few years because I felt like he just kind of did a cut and run and I don't want him to talk me into having the right side 1st rib out because I honestly don't think I could go through all of that again and I don't really get any pain on that side, yet. However, if this is what is causing the imbalance, one rib on one side, not the other. Then I may have to if I want to ever look or feel normal again. I can't even find any answers to this on any of the TOS forums I've scanned. Plus, I can't be sure that that’s not what is causing my continued neck and head pain although, it has improved somewhat lately. But I'm still left with constant pain in my face, head, neck and mainly left shoulder on one level or another. So far, enough to keep me pretty much where I’ve been the last 6 years.
Despite everything I'm still trying to apply TMS principles to all of my pain conditions or what I know of it so far. I do believe the brain has a huge role in all this and I’m trying to be conscious with regard to reconditioning my brain and doing practices to calm down my nervous system. I was also diagnosed with fibro a few years ago but I never felt like that was accurate. Yeah, my muscles have been tight and achey throughout my body and I know I hold a lot of tension in them, especially my upper body but mainly because I couldn't really be active at all with what is going on in my upper body and head every single day. I'm trying to push a little more physical activity the last week or two as well but so far my knee is still popping and cracking and hurting and difficult to bend. I’m trying to do more exercising at home to start moving more despite how my head and shoulder/neck feels, but my knee will only move so much and it hurts enough that it slows me way down when I’m trying to get on the floor or do any kind of lower body exercises. Again, still not sure if I should give PT a shot for that and my posture/shoulder problems but I’m really on the fence about that.. Yeah, I know, I’m a mess. It’s true. ( Also hard on myself a lot.)
So, in my case I think I MAY or MAYNOT have a perfect storm of TMS and structural. Like I said at the beginning of this very long story, I focused on most of my physical problems but I've had a lot of horrible, traumatic things happen to me along the way as well and I know I have a long history of repression. I just can't really see how those things could have caused the mechanical problems with the TOS that happened but not ruling that out. But for the anxiety, stomach issues, HBP, TMJ and maybe even my knee issue, I could see how it could be TMS. I also wonder if TMJ is considered a TMS issue, how I can stop this one thing when I only seem to do it in my sleep. I continue to cause damage to my teeth because of this, even with a mouthguard. I’m slowly undoing all the dental work I had when I was younger to make my teeth so nice. And again, not working yet so I do worry how I’m going to pay to undo all the damage I’ve already done with that. I had an appt scheduled with a TMJ/headache specialist in the next state but I had to cancel it when my transportation fell through. Then starting reading about TMS.
I feel like I’m still too young to be living like this and having all of these different medical issues. I’m angry with the physicians who caused some of these things or just have been so apathetic to what I’ve been through and still dealing with. I don’t want to live like this anymore, I really don’t.. Even with postural difficulties, asymmetry, should my body still be healed by now? Why am I still getting constant headaches? Facial pain? I’ve also had my eyes checked although not recently but was told they are ok. I’ve tried to rule things out as I’ve gone a long as well. I know TMS books say not to continue seeing a chiropractor but I’ve been working with one for a year now and doing home traction to try to get the curve back in my neck. My neck pain itself has improved somewhat compared to what it was but I can’t figure out why I’m still getting headaches and pain. Had CT scans as well. This is going back before I was diagnosed with TOS however just to rule out brain tumors and such with the chronic migraines. But all of that came up ok thankfully, when I had them done and I was no doubt in even worse shape then than I am now..
I guess I’m so lost right now that I’m hoping for any kind of feedback on any of this jumbled mess if it makes sense to anyone at all. I feel like I have more to say and more questions to ask but I think if I want anyone at all to read this, I better stop here. Does this sound like I have this perfect storm that I mentioned earlier? All I can find online so far that Dr Sarno said about TOS, and no I haven’t gotten to read his books yet but the only thing I found so far was that he said that it’s rare to have the bilateral rib anomaly and rare that it cause TOS to the point where surgery is needed. Or something like that. Does it even matter now? So what can I/should I do now about all of these physical and mental issues that have kept me from having any kind quality of life? I just would do anything for some of that back. I have so much to rebuild and I feel like I need to start feeling better in order to do that.
Again, if you read this whole thing and especially if you chose to respond; either way I thank you from the bottom of my heart. I know it couldn’t have been easy to read this till the end. I’m just throwing this out there in hopes that at least one person can get through it and give me any kind of response, direction or feedback. I also tend to be on the sensitive side ( just read about HSPs in SteveO’s book) I ask that if you do decide to respond to this, please be kind. And again, thank you for taking the time to read this and respond if you so chose. Really, thank you.
