Short (well, sort of) story of pain

M

Manjuno

Peer Supporter
Hello, fellow TMS-busters,

let me start by saying I'm a fresh TMS neofite but a long-time TMS sufferer. I've just recently discovered the concept and I'm in the process of getting to understand my condition. I'd like to introduce my story as concisely as possible so let me get to it without further ado.

- 14 years ago I moved to a capital city in order to start my first real job and it proved extremely stressful. At first it caused anxiety and panic attacks but gradually proceeded to bring about skin problems, some slight gastric issues, cardiovascular symptoms and, worst of all, pain in the entire back, changing location on a daily and even hourly basis; antideprressants, psychotherapists etc. were unable to help me in a ny significant way.

- 13 years ago I returned to my hometown and began to regenerate. The stress quickly subsided and all other psychosomatic issues followed except for the back pain - it persisted no matter what, despite my engaging in sports, doing yoga, going to dancing classes, meditating, physiotherapy, taking different medications, working with a number of psychotherapists etc. Also, na cause for the pain was found.

- 7 years ago the pain suddenly vanished one day, just like that, without any tangible cause. One day it was there, the next one - it was gone. I got my life back after six years of constant suffering. I can only think of the following events that preceded this:
1) I had moved in with my girlfriend; we decided to live together in a new apartament, thus solidifying our relationship;
2) I'd visited a chiropractor;
3) I'd began training regularly with a personal trainer.

- 3 years ago out of the blue pain in my pelvic region set in (shooting, burning pain around the coccyx, in the buttocks, lower back, hips and the left testicle). And it began anew: countless visits to doctors and doing medical tests. No causes have been found other than the coccyx being slighlty out of alignment, so coccycodynia diagnosis was finally suggested but it wasn't very consistent with the usual symptoms of the condition and later some specialists expressed their doubts about the diagnosis. Fortunately, at this point the pains came and went - I had good weeks and bad weeks but at times the pains subsided for even a month, which was a blessing.

- 1.5 year ago, after 20 hours of an exhausting mountain-hiking challenge, a very minor car incident, and a particularly stressful weekend that followed, my left shoulder began to hurt. I visited 6 or 7 physiotherapists and they are all clueless - there's nothing structurally wrong that would explain this level of pain. The shoulder theoretically shouldn't hurt, especially for such a long time. Around this time my pelvis pain became constant and, lo and behold, my back pain suddenly returned after 5 years of absence.

- Today I suffer from:
o pelvic pain, which intensifies after defecating and sometimes wakes me up at night. I have trouble laying on my back and sitting but the pain disappears when I'm focusing on something really hard, sometimes when I'm having fun or whenever a situation arises that's more important than the pain (like my girlfriend being take to a hospital etc.);

o shoulder pain radiating to my arm and neck; I have problems running, walking or standing still for more than 20 minutes at a time as the pain becomes hard to bear (which is somewhat devastating as I was always a walking/running/hiking guy);

o my back pain, which kicks in whenever the other two let go a little;

o I often feel nauseus and have discomfort in my colon, especially after passing stool; I'm also slightly constipated most of the time;

o it seems like every minor injury I have ever had is back with a vengeance: my knee, my wrist, a toe and a finger I stubbed a long time ago; at times it feels like my entire body hurts;

o for some reason, I also have a yellow tongue discoloration.

Naturally, I'm a perfectionist with strong morals, who always tries to do good and repressess his needs and anger (and I feel really, really angry), so as you can see, I fit the profle. I'm also constantly stressed. The last time I remember my body being completely relaxed, was about 15 years ago. This is consistent with the neurological examination - my naurologists and physiotherapists always tell me my body reactions to a stimulus are too strong.

At this point the doctors, having exhausted all other options, suggest that I take a medication route once more and try different antidepressants to find the one that manages to calm my body down. Obviously, I'm hesitant as my past experiences with such medications are terrible because of the side effects hiting me very hard.

I'm aboard the TMS train for about two weeks now. I've read on of dr Sarno's books, went through some parts of the forum and have been thinking a lot about my emotions plus doing exercises like writing down all the things that contribute to my anger. I've been feeling a little bit better (by about 10-20%) but yesterday I bought a new chair and after about 30 minutes of sitting in it I got a very strong pain attack which made me stress out again. It's probably the worst feeling when you think something is improving and then get hit with something like this. Now I'm not sure if the initial improvement was due to the method working for me as intended or just an effect of a change in my mindset and shifting my attention from my body to other things.

Now, I would like to ask you for a suggestion for my next course of actions. Should I:
- read more books from Sarno (or other authors?),
- read the one book I have again (The Mind Body Prescription),
- start the Pain Recovery Program from the forum,
- find Sarno's videos/recordings,
- keep reading the forum, all the success stories etc.,
- begin a psychotherapy with all the new TMS insight I got (I've found a psychotherapist who's supposedly very good with pyshosomatic problems),
- take up sports again and be active despite the pain setting in;
- visit an osteopath (I've managed to find a very good one and was looking forward to the visit but then I read that this could be an incorrect approach as again, I'm focusing on the body; also, someone with TMS said they actually felt worse after the visit, so now I'm actually scared),
- go for the relaxation route: some relaxing massages etc.
- take up yoga again,
- get to know myself better (I'm thinking of taking the test for autism as I suspect I'm on the spectrum),
- find a TMS therapist (I don't know if there's even one in my conutry; perhaps they can be contacted online?).

Fun fact: I've just counted the points above and sighed with relief as there are 12 of them. I would not settle for 11 or 13 as that would be against my compulsive/perfectionist nature.

I'm still kind of lost in all this so thank you for your patience reading this and for your concern. I'd love to read your take on my story. Let's keep on keeping on together.
 
Manjuno said:
Now I'm not sure if the initial improvement was due to the method working for me as intended or just an effect of a change in my mindset and shifting my attention from my body to other things.
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Welcome to the Forum!

A change in your mindset and shifting your attention from your body to other things is "the method". I suggest continuing to read books on TMS while picking a program and committing to it everyday until it's completed, and reading Success Stories, listening to TMS podcasts. Just don't overdo it and turn it into an obsession. Choose the ones that appeal to you. Part of TMS recovery is learning about yourself and determining what works best for you. It's a journey of self-discovery. Enjoy!
 
Manjuno said:
begin a psychotherapy with all the new TMS insight I got (I've found a psychotherapist who's supposedly very good with pyshosomatic problems),
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Hi @Manjuno and welcome.

Reading your story, I see that you've been prescribed psychotropic medications in the past and that they are still being recommended to you by some of your current practitioners. This leads me to think that you might have TMS to an extent that will be very difficult to manage on your own, so it's great that you have what sounds like a really good referral to a psychotherapist who can work with you on your many mindbody issues. My sense is that you might be somewhat obsessive, and that you risk freezing with indecision in the face of too many possibilities - which in itself is a symptom of TMS created by your brain. A skilled psychotherapist can really help you to stop, focus, and work on breaking down emotional barriers to recovery. There are a lot of people here who would give a lot to be connected to a skilled mindbody psychotherapist!

That being said, going into therapy with more understanding can only be beneficial, and @Ellen has given you great advice about where and how to focus your attention.

Good luck on your new journey!
 
@Manjuno, something you said really reminded me of my own TMS journey. I hope sharing this will be of help.

Six years ago, I had something fall on my big toe. It bruised it severely and made it swell. I began to stress about it. I got x-rays, and it wasn't broken. So, I started to worry about compartment syndrome. It was unlikely and it didn't happen, but I was obsessed with it. I limped at the time as well because it hurt and to protect it. That ended up healing fine, but the limping started to give me pain in my back (I have had a history of back pain). I also started to get some swelling in my knee and I could see the capillaries more prominently. So far, all of this can be traced to the initial injury followed by bad mechanics (limping, guarding).

Due to my health anxiety, I went to an osteopath-now concerned about the back pain and swollen knee. I had seen a different one before and didn't realize there were different styles. This one used high-velocity manipulations. It was a big mistake. He stretched me out to the point of pain multiple times, especially in my left groin area, against my protestations of pain and concern. I should have simply said, no and stop. This began a nightmare of symptoms. Nerve pains in my pubic area, pelvic sensations of a ball in my (v-word, sorry I can't say it here), urinary urgency and burning (with no UTI) and more. I saw my old osteopath and my chiropractor afterwards and both were convinced that my pain and other sensory reactions had more to do with the fact that I was scared while the osteopath was working on me. It's true. From the moment he started to cause me pain, I was afraid that he was doing serious permanent damage.

I saw doctors and had imaging to see what the damage was. Then I went to pelvic PT. The first one asked me about my marriage. It was bad to be sure, but that was all she would focus on. After 4-5 appointments, she shifted from kind and understanding to outright rude and said - your pelvic pain won't go away until you leave your husband! (He left me a year later, thankfully). So, I went to a second pelvic PT. She did work with me because I do have a bladder prolapse from having had three children, but she believed most of what I was feeling was like leftovers of the initial incident at the osteopath's that my mind and nervous system were keeping going long after they should have subsided. This went on for months with no substantial improvement.

As you said in your post - "...the pain disappears when I'm focusing on something really hard, sometimes when I'm having fun or whenever a situation arises that's more important than the pain (like my girlfriend being take to a hospital etc.);" Then, my adult nephew suddenly had a serious allergic reaction to a medication and it landed him in the hospital. His mother (my sister) was an 8-hour drive away. My daughter and I met him at the hospital and stayed with him overnight and then spent the next week with him and my sister (who drove into town). He had also been living in a not-so-nice place with bedbugs and a bad landlord, so we worked together on finding him a better place to live while she was here. I canceled an appointment with the pelvic PT while all of this was going on. By the time my sister left town a week or so later, I didn't make a new appointment and I was done with PT. I didn’t need it anymore. The symptoms were gone or almost gone. I don’t remember the exact timeline as to when it was completely gone, but it was then or shortly after. It is a familiar place for my body to choose to try to go back there sometimes, but as the years have passed, each time it's a little less and doesn't last as long because I know what it is.

I wish that I could harness this because I know this is exactly the kind of thing that has worked in other TMS circumstances for me, but it has not worked for me to try to create the circumstances. They have had to come from outside of me. If I try to create a situation that is more important or pressing, my mind and body don't fall for it.

I also wanted to suggest that if you suspect that you are on the autism spectrum, I would pursue that. I have a grown son who lives with me. After being on his own for three years, his health collapsed. He presents like someone with chronic fatigue syndrome (CFIDS). I believe that he has a lot of psychosomatic things going on, but he will not consider it. I have sometimes wondered is he has undiagnosed Asperger’s, but when I have carefully suggested it, he rejects that, too. I wish he wouldn’t refuse to look into it because I think it could help to know. I think as far as autism spectrum goes, it could go a long way toward helping you move forward with how to approach your situation just having that answered.
 
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Thank you for all your insight and sharing your stories! I feel like I'm in a company of really experienced people who understand my issues better than any doctor I have ever spoken to.

It's distressing that my symptoms indicate a severe case of TMS but, paradoxically, that makes me even more determined.

I don't know yet how skilled the psychotherapist is but a family member, who must have visited a dozen of specialists on psychosomatic issues, recommended her as definitely the best of them. I don't think she's into psychoanalisis though. I'm seeing her this Tuesday.

I also keep wondering what was it those years ago that healed my chronic back pain in a matter of days - I feel like this is a key to getting better. Right now I'm in not a great place when it comes to personal matters so I guess that contributes to my problems. Moreover, I just got another minor health issue and I'm doing everything in my power to not obsess about it.

So, Day 1:
- I've took up the programs by Alan Gordon.
- I've decided to take the Autism test - I'm going to try and schedule it next week.
- I've returned to running. After defecating, when the strongest pains hit, instead of lying down and moaning, I put on a sweatsuit and went for a 5 km run. It actually felt good despite the shoulder pain that emerged in the middle of the training.
- I'm reading the success stories on the forum.
- I'm focusing more on getting things done instead of planning to do so.
- The pain does seem to go down a bit. Let's see if I can get a good night's sleep today (I usually have trouble sleeping at night on "defecation day").

If I may, I'd like to update my story daily in this thread. I think I need this to better feel the progress of my efforts.
 
Indeed, @Manjuno - please feel free to use the forum structure in whatever way works for you! Continuing to use this thread is definitely a good option.
 
Days 2-3

Today I had my first session with the new psychotherapist and she needed about 60 seconds to tell I'm on the spectrum. This pretty much closes the psychoanalitical route for me as this is apparently not the right type of therapy for autistic people. Fortunately she seems to have a plan that doesn't contradict the TMS approach in any way.

Everything suggests that I've reached a point in my life when both my body and my mind are trying to tell me that change is necessary. I'm not being good for myself, I don't care for myself and I keep ignoring my needs, accumulating anger in the process. This has been going on for many years and my mind-body seems to be getting close to its limits as the tension reaches a boiling point. One way or another, a change is approaching. The unsettling fact is I have no way of releasing that tension - I have no addictions, basically no friends to talk to, nothing to redirect the tumultous energy inside me.

These two days have been quite tense (also because of some difficult conversations at home; hopefully some resolution is in the works for those issues too) so the pain had something to feed on and it grew strong. I'm still wondering if I should give the osteopath a chance since I've scheduled a visit some time ago or just give it a rest to refrain from adding another factor to this equation. I'm thinking the latter at this point.

I'm remaining hopeful and somewhat excited for what is coming.
 
@Manjuno
I am very experienced with folks labeled with autism, or “tendencies”. I don’t think pain syndromes are that uncommon in this population, and I’ve thought it could be the cause of many outbursts in people who can’t express themselves. You’ve stated you get relief when concentrating - can you work with that? Use it as others would meditation. Find things that absorb you. Some ideas are doing very complicated puzzles, adult craft building kits.. a local man builds incredibly detailed and complicated things from Lego. He gets his pieces from thrift stores or from local “buy nothing” groups for free, you ban bake or cook complicated meals, plan and make a garden, or research your favorite topics.. whatever absorbs you. Many people on the autism spectrum find physical relief by fidgeting, which is worth a try with things like a cheap slinky, or a squeezy ball.
Do you want to connect with people? Is that an unmet need? Part of tms is inner conflict, so it’s worth thinking about any tendencies or compultions you do but get in the way of goals and desires.
 
Manjuno said:
I'm still wondering if I should give the osteopath a chance since I've scheduled a visit some time ago or just give it a rest to refrain from adding another factor to this equation. I'm thinking the latter at this point.
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My inclination would be to give yourself a break from additional input at this point and explore some of the ideas @Cactusflower suggests.

When you've had some time to absorb this recent information, perhaps you might look into finding some sort of mindbody practice and a skilled practitioner who could help you make that connection - the one between the mind and the body. I feel strongly that success in this work is greatly enhanced by body awareness and physical mindfulness. I think that the practice of somatic experiencing (huh, I'm not even sure I've got that phrase right) is in the same realm. Biofeedback (an old concept!) is certainly such a practice. In fact, perhaps training in biofeedback, if it still exists, would appeal to your brain, since it's a very rational and measurable practice. Haven't thought about it in years...
 
@Manjuno , I think that you are on the right track about leaving the osteopath out of the mix, especially since that will likely pull your focus back onto the physical. (Admittedly, I also had a very bad experience at an osteopath as I referenced in my above comment). As I said, I think you're on the right track already, as you learn what it means to be on the spectrum and how that affects you, as well as your own discovering of the anger you are experiencing. I know what you mean about about having no way to release the tension. My foundational emotional issues that express themselves through TMS are somewhat insoluble. Recently, I gave up the sugar dependency I always used to cope cold turkey because I finally feared where it was going to lead in terms of health and my dental situation. For a while I enjoyed the freedom of not being dependent on it, but it has been almost four months now, and I miss having it to cope with stress. The upside is that I've lost about twenty pounds since then, but I need a healthy outlet. I'm actually kind of excited for you that you seem to be on the cusp of moving in such a positive direction.
 
Thanks for all the ideas. I feel like I'm becoming more open to different solutions with each passing day.

So, days 4-5

I've been reading a lot of articles on TMS and more success stories. I'm thinking of buying "Pain Free for Life" by Scott Brady next as it caught my eye.
I'm trying hard not to obsess about things and activities hurting me. I'm now jogging every day even though I was afraid to do so for months due to what the doctors had told me. I also stopped my morning stretching/yoga routine now as it strongly puts my mind to the physical aspect. Today, I even used the toilet without my usual sitting/breathing techniques which are supposed to ease the process. Interestingly, the pain actually proved lighter when I returned to my past way of doing "number 2".
I can't say the overall pain went down significantly in these first days but at least I'm discovering I can do things normal way (or "my way") and it doesn't make the pain worse so that's good news and definitely a progress.
 
Days 6-10

A crisis hit me today. It's been simmering for a few days and finally it boiled over. Anxiety brought me to a verge of panic and all my ailments got radically worse. I felt like just lying down and crying (if only I could cry!) for most of the day. I couldn't do that though as I had a project to finish. It only got a little better after I interacted with my girlfriend when she got home (she's struggling with her own issues so she's unable to fully support me with my problems and I'm unable to help with heirs). It got significantly better after I forced myself to go grocery shopping - leaving the apartment usually helps for some reason. Now, while writing this, I feel the anxiety creeping in again. Tomorrow I'm meeting some friends and I'm panicking that I'll have to cancel it due to the state I'm in. Or I'll meet them but will have to endure the pain throughout.

I feel defeated now. For more than a week it was going good and whenever my body hit me with something, I was able to avoid focusing on it, which let me enjoy life more and be hopeful for what's coming. Today I've lost - the cumulative stregth of all my ailments complimented by the heavy grasp of anxiety prevented me from following any TMS rules and I ended up thinking about the pain all day long and abandoning some of my plans for today.

I'm not sure what to make of this. Could this be the infamous extinction burst? A test of will orchestrated by my brain and I've just failed it? Is it about the changes in my life that are happening right now? Or maybe it's just totally random?

It generally always works like this:
1. The pain increases.
2. I'm either focusing on it or focusing not to focus on it.
3. Both approaches make my lose energy.
4. With the energy deficit I'm beginning to fear that I won't be able to complete the things I had planned for the next days (my job performance will suffer, I will postpone taking care of things etc.)
5. This fear amplifies the pain.
6. The pain feeds anxiety.
7. It lasts until I'm exhausted or suffer a panic attack.
8. I'm regenerating and the pain subsides a bit.
9. When I feel a little better, everything starts anew.

How do I break this cycle? What do I do if there's a particularly difficult day that goes over my head and is just too much to deal with in terms of pain and anxiety? Also, a bonus question: is it counterproductive (in terms of TMS) to use some tranquilisers when I'm struggling particularly hard?
 
Manjuno said:
I'm not sure what to make of this. Could this be the infamous extinction burst? A test of will orchestrated by my brain and I've just failed it?
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Absolutely it is the infamous extinction burst! Hooray!!!!!!! This is great news, @Manjuno - seriously!

And NO YOU HAVE NOT FAILED THE TEST. Just by asking the question about extinction bursts, you are clearly still on track. Note to yourself however - the thought that you have "failed" indicates that perhaps you might want to add some self-compassion to your personal skillset. This is nothing more than your fearful TMS brain convincing you that you're a failure so you might as well give up sooner rather than later. This is what IT wants. It's not what is actually good for you.

Here's a good affirmation for you: Don't be fooled! :D

Days 6-10 are absolutely classic for this to happen. People have reported all of the following, often in combination:

- increased magnitude of symptoms
- recurrence of old symptoms thought long-gone
- brand-new symptoms - the weirder and more unique, the better
- new or increasing anxiety
- and even new or increasing depression

If you need to take a break from the program, you can certainly do so - although I would say (others may have differing opinions about this) that the equivalent time would well-spent in an activity that challenges you physically or emotionally, or perhaps in establishing a mindfulness practice such as meditation or mindful therapeutic breathing. Or, as I mentioned, engaging in self-compassion. There's also nothing to prevent you from doing a "Day" of the program every two days. In fact, that's preferable to rushing through and not getting the most out of it. Which I don't think you're doing since you are experiencing such an obvious case of the Symptom Imperative (the other term we use, which I prefer, for various reasons).

If you have a public library membership, look up Kristin Neff PhD, kind of the queen of self-compassion (although not the only one - Brene Brown is also awesome, and Sharon Salzburg is no slouch). Neff has a website, of course, but if your library does e- and audio books, chances are you can download something of hers almost immediately. Although, dang... my big city library has two of her books, both in audio or e-format, with multiple copies in the catalog - but all the versions and copies have hold times (shorter for the audio books). Times are hard, folks, but it's good to know people are accessing these resources!
 
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Thanks. I'll look into that.

One symptom that I hadn't developed so far was fatigue but for the last few days I'm pretty much exhausted. I'd drink some coffee but that usually causes my bowel movement and after defecating the pain always hits hardest. And I really want to attend this meeting today (we've rescheduled it thrice already due to different circumstances) but I'm afraid I'm going to be in pain / depressed / exhausted the whole time.

I can quite clearly see that the pain and anxiety are the worst for a few hours after waking up (is it because of the cortizol level being highest in the morning?). I feel this is severely impacting my work as I usually work from 8 AM till about 3 PM. I find myself procrastinating a ton just to give my brain some distractions.
 
Just a quick update: The meeting, of course, went fine, with the pain retreating and becoming almost undetectable the whole time. As always, this made me feel that nothing's wrong with me and I kept telling myself that I won't succumb to anxiety and worrying about my health anymore. Then, the next day, the pain is back and I'm stressing out again as it always seems to hit me exactly the right way to make me feel uncomfortable and anxious. One day I feel (mentally and physically) completely fine and the next day - I feel like I'm basically a disabled person who's unable to live a normal life.

Is the fact that the pain can suddenly almost completely go away indicative of TMS or is it simply the nature of any pain - you don't feel it if you're focusing on some pleasurable activities? In other words: can this phenomenon happen with non-TMS pain? I suspect it's typical for psychosomatic issues but I guess I'm still looking for confirmation.
 
@Manjuno
Yeah, this is what I go through. I’m pretty sure it’s just the tms brain attempting to control the “scary” stuff you are otherwise ready to face. I do thinks like ask, “why are you scared of succeeding?” Or “why do you need these symptoms?” Usually followed by Answering myself, that I do not need these symptoms because I am perfectly fine, so why does my mind think I can not or should not feel successful? Because of old patterns I am done with because they are no longer useful. I have been then switching to thinking about being grateful for the success, for my day, for the symptoms return reminding how awesome I was, can be, will be! How I can succeed on many levels.
You are succeeding! The fact you had little pain during a stressful day is an amazing sign. Your mind has simply convinced itself you are more emotionally comfortable in pain rather than in happiness, confidence etc. It can be frustrating, and it’s ok to be mad at it for a minute. Then congratulate yourself! Remind yourself it’s also ok to feel good!
You interpretations of pain being “tms” pain or not are pretty irrelevant. If you look at the science of pain, it really is ALL in the mind. It is very common for people’s tms symptoms of any kind to reduce or even not be present in some situations.
Well done!
 
Days 11-15

I'm continuing the programs, reading a lot, journaling and catching my anxiety red-handed whenever it kicks in. My symptoms are going crazy now. I have about 10 different areas affected by pain and they switch constantly (earlier the pain used to linger in one place for a longer time before it moved to another body part). This feels both good and bad. The fact that the pain moves all the time makes it less tiring but also less predictable and thus keeps me on my toes.

The bad news is, my psychotherapist, who seems very promising and experienced with autistic people, due to personal issues won't be able to work with me until September. Maybe I'll use this time to take the autism test and get to know myself better. I don't really want another psychotherapist after how good of an impression she made during my first visit.

I've also noticed that I am closest to being relaxed when I'm all alone and don't have any responsibilities to take care of at the moment. I'm wondering if I'm actually built to live alone and have everything around me organized the way I want to have a sense of orderliness. On the other hand, I tried that in the past and it didn't seem to work that well... It just resulted in my distancing myself from the people and having an increasingly hard time interacting with them. But when I'm around people for X hours everyday, I get annoyed by them, even by my close ones. I still can't quite grasp what is my optimal environment, so to speak.
 
Oh, no, I'm sorry to hear that about the new therapist, @Manjuno, that's discouraging. I like your plan to fill the time with a constructive program of self-discovery, that's really awesome.

The increase in your symptoms still makes sense with doing the program - hang in there and be kind to yourself. I was a little abrupt with you just now on the ACEs thread, and I apologize! I'll probably edit that (there's my perfectionism) because I have to admit I forgot about your autism, so of course you want something like the ACEs quiz to be more analytical and precise - I get it.

I want to respond to your thoughts about your living situation because I can relate strongly to that, but I have to get going, so more later!
 
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