Please Advise - Stuck in the Symptom Imperative and Worsening of Symptoms

Sorry about the jumbled mess of my posting. I have been thinking about posting for a month or so but haven't gotten around to organizing my thoughts so here it is.

Quick history of my TMS:

You can see the full story in my first posting.

2014 – Had 3 concussions but then started getting head tingling and lip tingling that I thought was from the concussions but I now discovered to be TMS

2016 – left work 1 day and had foot tingling; had all the MRIs and said it was from back. Did therapy and nothing changed. Occasionally had numbness tingling in saddle area and thought it was more serious (now think that was from the power of suggestion when they warned me about dangers). Later that year had nerve tests and diagnosed with polyneuropathy. I continued to have the head tingling. Also started having occasional migraines and gastro problems for the entire summer. The gastro problems were blamed on hiatal hernia at first but then the doctor suggested anxiety and they disappeared the next day.

2017 – both head and numb/tingling feet continued. Eventually go rid of the feet with PT. The therapist said it was from my back and that the symptoms should move up to there. Right before it got better I had all kinds of tingling/buzzing in my butt and lower back. It then went away, but came back when I did an exercise for the back. I then “connected it to the back” and started having hip and butt pains too.

2018 – head tingling almost completed vanished once I decided to just ignore it. My leg and hip, butt pain continued to bother and I visited many doctors who had no answers. I also started having worse reactions with certain physical movements like lifting things. Eventually when reaching really far to clean a large soaking tub, my feet intensified and I started having back pains in the middle of the back, just under the shoulder blades. I also started having some popping. A couple weeks later I lifted some items and my feet got super painful and intense with electric shocks. I started having nerve pains in my butt and all over my back as well. I went to a doctor and immediately he suggested surgery which scared me. At this point I really became fearful and started avoiding all kinds of movement. I even had caudal cortisone shot. At this time the head tingling I had the previous year returned. I went to a neurologist and had a nerve test and he said pinched nerve. Eventually I went to 2 other doctors. One gave me back exercises to do but later and after doing a nerve test thought they didn’t think it was my back and said he thought it was anxiety. On the day of the nerve test my ankles swelled to the size of tennis balls. Another doctor also confirmed he thought there was nothing wrong with my back. Right around this time I discovered the concept of TMS. It still took me awhile to accept it. I started back into things by trying to shoot hoops and shovel snow. After shoveling snow my back hurt the next morning but was okay the second morning. That second day I went to shoot hoops and after I had crazy cold tingles all over my feet, legs, back, face, and arms. I began to get worried and tried the old back exercises and I got a bad reaction of tingling up my calves. After that certain movements would cause tingling in my calves which then lasted for months. I also started waking up with pain in my lower back. The waking up with back pain has been weird because I sometimes go a couple weeks with and then a couple weeks without. I even stayed up all night and had no pain, but if I fall asleep for even an hour I wake up with pain. Right before the back pain from the bed I was getting worried because my mattress was really old and I was afraid it didn’t offer enough support. Before this I had never woken up with back pain.

So where I am now. I have since lifted the things that originally made everything worse. I have started playing basketball again for the first time in five years. I started biking again too. I have had pains move all over my body including my neck, my arms, and my chest; however, the feet persist. I had two bad instances: once with my hip and once with my knee where I could barely walk. I went to doctors and they said no injury and about a week later both disappeared. Lately I have had a return of terrible back pains in the middle of my back, which I haven’t had in months. I also get incredible buzzing (like a phone) in my lower back and butt sometimes. I don’t believe my back is injured and try to laugh it off or forget about it. I still wake up with occasional back pain. I also have had intense increase in symptoms and thought perhaps an extinction burst but they have never left. Even in the last couple days I have had pain move all around my back, and butt. However, as much as I ignore it, it seems to only get worse. Sometimes it frustrates me because it makes it harder for me when I have my kid and I don’t feel like I am the parent I could be if I didn’t have this.


Questions:

• Why did my symptoms go so haywire in 2018 when they were steady for years?

• Usually the days after I have the best mental days I have the worst mental days filled with doubt and the worry that I won’t ever get past this. Is that normal?

• If I have gone through the symptom imperative, why has everything increased and returned to places it hasn’t been in months?

• Now certain movements that were fine trigger the back pain. I know it can’t be anything structural so why does this happen?

• Is being aware of the pain bad? Sometimes I find it hard to ignore but I try not to think any more than just being aware that it is there

• What else do I need to be doing or is there something I am not doing?

• I have tried counseling therapy and reached out to Steve O and done some consults. Sometimes I think I might be taking in too much or making things more complicated with all the psych stuff. Is there a simple concept I should be focused on?

• One thing I know that is making me angry is how all this pain is making things difficult. Is anger about TMS something that perpetuates it? Sarno says to talk to it with disdain so I am a little confused.

• I have done a bunch of psychologically digging (even gone to therapy) but I wonder if looking into things too much keeps the focus on TMS and wondering if I should step back my efforts there.

• I try to do exercises and running but my legs don’t work properly and the more I try the more I get weird nerve pain and tightness. Should I still try?

• Do things usually get a lot worse as you discover TMS and try working through things? I feel like my symptoms weren’t nearly as bad at the beginning of things getting a lot worse.

• Dr. Segal is near where I live. Would it be a good idea to visit her?

 

I hope this helps!



Questions:

• Why did my symptoms go so haywire in 2018 when they were steady for years? Your symptoms ramped up in 2018 because your fear was building alongside vague reassurances from Doctors. Then when surgery was suggested this really confirmed your fears of perceived declining health and the increasing number of tests threw your confidence for a loop. All of this was feeding into the preoccupation with the fear of the symptoms and the resulting fight of flight was activated.

• Usually the days after I have the best mental days I have the worst mental days filled with doubt and the worry that I won’t ever get past this. Is that normal? When you are less preoccupied with symptoms, the anxiety ramps up. This happens to a lot of TMS'ers going through the process. It is all coming from the same thing though, your mind is creating distraction from what it believes is dangerous to you.

• If I have gone through the symptom imperative, why has everything increased and returned to places it hasn’t been in months? This is an old trained neural pathway, conditioning or a 'trigger' - you said you were trying some of the old exercises you used to do.

• Now certain movements that were fine trigger the back pain. I know it can’t be anything structural so why does this happen? You are in a triggered state again and your mind will look for ways to draw you back into the preoccupation with symptoms.

• Is being aware of the pain bad? Sometimes I find it hard to ignore but I try not to think any more than just being aware that it is there Of course you will be aware of the pain, that is normal. The trick is to be with it in a calm way and to reassure yourself that you are safe and the symptoms are caused by your mind not something anatomical.

• What else do I need to be doing or is there something I am not doing? Have you done the free programs on here?

• I have tried counseling therapy and reached out to Steve O and done some consults. Sometimes I think I might be taking in too much or making things more complicated with all the psych stuff. Is there a simple concept I should be focused on? Keep looking at the evidence for the psychological cause to strengthen your belief in the TMS diagnosis, then relax and it will all fade away. Know that cultivating indifference to the symptoms will result in resolution of them.

• One thing I know that is making me angry is how all this pain is making things difficult. Is anger about TMS something that perpetuates it? Sarno says to talk to it with disdain so I am a little confused. This is also preoccupation with the pain.

• I have done a bunch of psychologically digging (even gone to therapy) but I wonder if looking into things too much keeps the focus on TMS and wondering if I should step back my efforts there. Creating balance and harmony within yourself and your life is a good place to focus on. Not the symptoms. Just know that the symptoms are caused by your mind.

• I try to do exercises and running but my legs don’t work properly and the more I try the more I get weird nerve pain and tightness. Should I still try? Make sure you are doing exercise for general good health and nothing to do with trying to get rid of symptoms. It is also great to exercise just because you enjoy it. It is okay to pace yourself back to being physical.

• Do things usually get a lot worse as you discover TMS and try working through things? I feel like my symptoms weren’t nearly as bad at the beginning of things getting a lot worse. Yes this can happen.

• Dr. Segal is near where I live. Would it be a good idea to visit her? Listen to your gut. You will know what you need.

 

Wow, that is an awesome and very complete reply from @birdsetfree and I commend her for it!

I have to be honest: I was unable to read your lengthy description, which I skimmed very briefly, and then went right to the questions. Here's the thing: focusing SO much time and energy on such detailed descriptions of your symptoms and issues is, in fact, another way in which your brain is trying to keep you mired in fear, as @birdsetfree mentioned several times. The details are completely unimportant. The sooner you realize that, and start figuring out how to describe your situation in, oh, let's say ten words or less, the better! LOL.

I'm actually not really kidding about that. OK, maybe twenty-five words at the most.

I also wanted to ask you the same question that birdsetfree asked: Have you done either of the programs offered here? I always recommend starting with the SEP, especially if you are someone who is easily distracted. That's the free Structured Educational Program on the main tmswiki.org.

I am also loving two podcasts recently: One is The Cure For Chronic Pain by @Nicole J. Sachs LCSW , and the other is The Mind and Fitness Podcast by Eddie Lindenstein, aka @LindenSwole . You might particularly like Eddie's podcast since he's into fitness, and he explained this week that that's how he started out, but then he healed from his own TMS issues thanks to Dr. Sarno and started incorporating TMS and mindbody fitness into his programs.

Good luck.

 

Thank you birdsetfree for all the advice! I really appreciate you taking time to read it and answer all the questions.

I keep reassuring myself and trying to ignore but sometimes it just seems like it won't end. I get frustrated because some people just read Sarno's book and heal, but I have been aware of TMS now for months and no luck. Sometimes I feel like I'm just not doing something right.

JanAtheCPA,

Thanks for being honest about not reading. Believe it or not I cut it down to half. Just not sure if some things were helpful or not. Now I know what I should put.
It's funny that you ask about the programs. I have been aware of them and even asked for a journal for Christmas to work on them. HOWEVER, for some reason, I keep avoiding it and other things liking watching Nicole Sachs (I discovered her on youtube some time ago). I have been having lots of issues with procrastination and avoidance. I will have to check out the other podcast. Thanks for all the advice and the well wishes!

I have done a lot of thinking about all kinds of different psychological reasons for the anger and it seems like I haven't left any stones unturned. When I look back the first instance started after I was married and my wife became pregnant. I would say that is when my personality changed too. Before that I was the most carefree person. I remember even accidentally flipping on my bike and crash landing and just laughing about it without a worry of injury. But after the kid was born and a series of concussions, I became a huge worrier. Now I have terrible anxiety and I would say that sometimes my worries border on just paranoid. I'm frustrated because I feel like I can't be the father I want to be and ironically, I have become much like I feared. My father couldn't do active things with me like he could with my older brothers because of various things that happened during his aging. I always swore I would never be like that if I had a kid and now hear I am. I'm frustrated because I had some concussions and then all kinds of TMS symptoms that I thought were something else and they were holding me back almost my entire daughter's life. I know I have a lot of other stressors: I changed jobs from one that I loved to one that is very stressful, my marriage is now ending and I am dealing with all of that, as well as joint custody of my kid. I have also noticed that all my TMS has historically ramped up during breaks (Christmas, spring break, summer). However, it was always manageable and more an annoyance than anything. The weird part was that when it really got bad was right before a lot of stress was about to leave and I thought I would have way more time to spend with my family (I was a workaholic before).

 

Nicole Sachs recommends disposing of your journaling immediately. She prefers typing on her computer, and for security, she keeps a permanent text document that she erases and saves in blank form after her daily writing exercise. But she lives in a household with six other people, including teens... I just use paper and pen, and since I live alone, I'm fine just tearing it up and putting it in the recycling.

Perhaps your brain is procrastinating due to unconscious fear that your writing will be seen by others. You can check that off the list of possible concerns.


Now, just start doing the SEP. One day at a time. One day per week if that's all you can handle. Just do it, though. It's free, each day is an easy bite, and the whole point is to expose you to different ideas, techniques, readings, videos, etc. It helps you figure out what resonates with you, because everyone is different, and there is no one way to do this work. You gotta start doing it, though. Not doing it means that your fearful brain is in charge, and you are letting it stay in charge.

It's time!

 

There is one thing I have to add to Jan’s and birdsetfree wise comments and it this - listen to the pain. Obviously just ignoring it makes it move somewhere else. Just like a child just wants to be heard or it will continue persisting, your pain wants to be heard. TMS = telling me something. Try this: mediate for ten minutes. In meditation, visualize your pain. What does it look like, how big, what color, etc...then, ask your pain what it wants. Believe it or not, it will answer, well, because the pain is coming from your sub-concious. When it tells you, listen and then whatever it is, tell your brain that you appreciate the protection and that you forgive it for not listening. Then say I love you and repeat, “Thank you for the warning, but I’m OK and not in an any danger.” Say this 10 times.

I did this with my therapist and it was extremely therapeutic. I’’ve been doing this for a week now and it helps a lot. The pain, aka, your brain, just wants to be heard. If it’s something that needs processing, this is the time to identify it, process it, then let it go. Nichole Sachs is a wonderful source for this. I’ve tried her technique, Sarnos, Schubiner’s, Ozanich, and more.

One more thing: Accept what is - right now - and embrace TMS, Don’t battle against it, work with it. After all, it’s your brain trying to do what it does best: protect your from uncomfortable feelings and emotions, or traumatic experiences that it fears will do more harm than the pain. You have to gently let it know it’s not needed anymore and that you don’t fear the pain or symptoms. Right now, this is my major issue with nausea and IBS symptoms. I did this with pain and it’s largely gone, but the symptom imperative is strong. Couple that with menopause, and my TMS is having a field day. However, I have the tools necessary now to deal with it, even though I get frustrated at times, thinking it will never end. (the fear talking)

Remember, your brain does this because it’s what it knows (conditioning) and once the new neural pathways have been laid, you can control how they are fed - by fear or by faith.

It’s up to you.

 

Holy crap! lol

I'm just laughing becuase I'm wordy as hell too, and your post reminded me of something I'd write. Anxiety personalities are always afraid of leaving out that ONE important detail that would solve the case.

I went from being basically single and running my own business and living with bros in my 30s... to being married, an instant father (whoops)... an infant, a step son a new house and a full time position all within about 3 years. (And a 2nd job) Guess which time period I had almost no symptoms?

I went through a divorce a few years after the above, as well... had joint custody.... and like you, the majority of my worst times seem to come during days off, or worse... times when I have extended days off. (Lack of structure creates uncertainty creates subconsious fear is my guess)

Just know you're not alone. Also, you have an anxiety disorder... like me. I've been dealing with mine for a long time and have made great progress. But while people here can get very angry about what I'm about to say... anxiety disorders MAY be in the TMS family, but I personally believe they are derived from specific things like stress and learned behaviors. So, I think it's very possible people like you and I have TMS... but also an anxiety disorder which needs to be addressed for what it is as well.
(If you keep engaging in anxiety behaviors, you'll continue to have anxiety symptoms.)

I do think they overlap, I'm just saying.... it's worth looking into the works of Claire Weekes, Jim Folk at AnxietyCentre, Paul David's blog... etc.

Not all of us in the stress disorder spectrum are a straight up "repressed rage sore back" Sarno case. For some of us it's messy, and may require recognizing all aspects.

Just my two cents, and I'm not totally cured by any stretch so take it for what it's worth.