Day 1 Unsure

[wintermute]

Day 1 Unsure

This will probably be a bit of an unstructured rant, but I don't want to waste the time I do manage to be at the keyboard perfecting the flow of the story so I will just type as thoughts enter my mind.

Almost 5 months of RSI like symptoms now. I stopped my work as a programmer, because I just can't type for long without the pain increasing. So far I've only tried physical therapy. They gave me massages and dry needling to release trigger points in my back, but so far it doesn't seem to help much as these painful spots return within a day. The dry needling even made it much worse. After going on a vacation 2 months ago the symptoms reduced a bit and I could even do some work, but now they're back and worse than ever. The doctor believes it's caused by posture. I have excessive curvature in my spine (http://en.wikipedia.org/wiki/Scheuermann's_disease), and it does seem plausible that this would cause problems in my upper back muscles.

Before I had these symptoms I was suffering from lower back pain for about 7 years. Though the back pain would vary in intensity, I was locked in my home for 2 years because I believed it to be impossible to work a job with it. Nothing significant showed on the CT scan though. Still, I believed this to be a physical problem, probably coming from my hyperkyphosis giving my lower back muscles too much work.

Then financial circumstances forced me to make money somehow so I decided to try to work as a freelance programmer from home. This went better than I expected. After a while I managed to find a steady gig at a former employer, and I could even work two 8 hour days a week at their office again. This was a huge victory for me, finally being able to make money again doing the thing I love. Then after 3 months my anxiety issues kicked in again, almost ruining everything. I controlled it using meds, and could continue the job. But now this RSI thing arrived, making work again impossible.

Even though it really feels like these things are happening to me, sometimes I wonder if I'm doing these things to myself to prevent me from being happy, or succesful or whatever. But why would anyone do that to themselves? I've been struggling with weird symptoms all my life, and these always seem to stop everything in my life. I feel like I cannot go on until working, studying, having fun, etc. until these symptoms are resolved. Sometimes they are physical, sometimes they are psychological, and sometimes it is a combination of both. Could TMS be involved? Some of the issues I've encountered were definitely caused by my mind. I've had terrible non-stop bladder pains and frequent urination for months, accompanied with an intense irrational fear of bladder or prostate cancer, until I finally dared to visit the doctor who told me it was probably just an hyperactive bladder. Enormous mental relief followed, and within 30 minutes my symptoms completely disappeared. Utter madness.

Still, even though I've witnessed the power of the mind on the body many times, I'm not convinced my arm, neck, shoulder and upper back pains are caused by my mind instead of my posture. Maybe I don't want to accept this because the task of resolving my psychological issues seems insurmountable. I've been in and out of therapy for most of my adult life, and not once did I feel it was going anywhere or helping in any way. Anxiety seems to be a core element of my personality, and after so many failed therapies I just gave up on the idea of ever feeling like a normal person. I've gotten used to being in fight-or-flight mode most of the time throughout the day. Nevertheless, I will follow this structured education program and see where it leads. The pain now prevents my from typing more (I'm surprised I could manage to type this amount of text), but that's okay since this rant has become wayyy too lengthy already anyway. Sorry about that!

 

[Birdie]

Hi Wintermute, I think I can understand very well what's going on inside you! On a very intellectual level I knew immediately that I have TMS when I first read about it. And on the other hand I also have some "structural abnormalities" (as many folks have in this place) which make it hard to believe fully in the TMS-theory. It really needs time to sink in and concerning my shoulder (my worst and newest symptom) it's still hard for me to believe in TMS because it's really painful and stiff and every single doc I saw told me I have to get physiotherapy to mobilize my "frozen shoulder" again. The worst: even my psychotherapist tells me to consider surgery !
What you describe sounds very familiar to me. My psychological and my somatic symptoms have always been so worse that it was literally impossible to live a normal life! I too have been in and out therapy since I am 16 years old (I am 35 years old now!) without getting any pain relief and the fearing and worrying about nearly everything is one of my core problems.
I developped severe foot problems when I went off home (literally wasn't able to stand on my own feet). During the writing of my doctoral thesis I developped RSI & piriformis syndrome. Well, writing a d. thesis without being able to type or to sit was impossible. Did not know about TMS and quit it. Very sad, no job at all. Piriformis went away after 2 years and a painful stiffness of my elbow and some months later of my shoulder kicked in when my beloved pet nearly died. All that accopanied by fatique and a sore throat and flu-like pains in arms and legs (I was told it's fibro and there's no cure).

Here are lots of people who are in the same boat and over the time you will see that's the right place here and that doubt and fear are typical outgrowths of the whole TMS thing. Only knowing that one is not alone with this (before I knew about TMS I felt like an alien!) can be such a big relief!

Oh and by the way, Nicole Sachs wrote a book where she told her story with severe back pain due to an structural abnormality as the doctors said and she's painfree now despite her spine! Another great example would be SteveO and his great pain deception (also had some "structural" findings in his spine)! Perhaps reading this makes it easier to accept the TMS theory?

 

[itsallinurhead]

I can sympathize with so much of the stuff that you mentioned in your post. When you said "I wonder if I'm doing these things to myself to prevent me from being happy, or successful or whatever" that really is something I strongly identify with.

From what you wrote, I get the feeling you still need to accept the diagnosis. It sounds like you know deep down that this is true, but that part of you is still afraid to accept it. I went through, and am still going through, the exact same thing. In many ways it is a lot scarier to accept that you have psychological issues than it is to deal with physical pain. I think that I blamed myself for these problems, and was so scared because of a deep seated belief that I was somehow damaged, corrupted, unworthy of being happy, etc. A term I've heard used to describe this is holding toxic shame.

The more I learn about and study this stuff, the more I realize that the shame and repressed emotions that are lodged in my unconscious that are causing these problems aren't my fault. It's just something that happened to me that was caused by events I couldn't control, the personality I was born with, and the fact I was a child. It's weird because it's not generally understood that the psyche is in many ways a tangible object just like the body. Traumatic experiences become lodged, in an almost physical sense, in the psyche and can create problems until they are discovered, brought to consciousness, and addressed. The stigma of mental health problems in our culture creates denial and fear which leads to further repression.

I'm very hopeful though, because understanding the nature of these problems is the first and most important step in healing them.

 

[plum]

Wintermute,

I'm assuming you're a Gibson admirer, and if so we are free to play with realities. Time to cast doubt aside and live. Time to take the gun pointing at your head and level it at tms. No more fribbling. You can heal from this and you can shine.

 

[wintermute]

@Birdie: sounds like you've had to deal with some very debilitating problems. I'm sorry to hear you couldn't finish your thesis! Are you doing better now that you've learned about TMS? I've added the book of Nicole Sachs to my reading list. Reading how people specifically recovered from back pain should be inspiring.

@itsallinurhead: yeah, I still need to accept the diagnosis. It's just that... for my lower back I did go through the entire medical circus and I know for a fact there is not something sinister going on, but for my RSI I just did some physical therapy so far. I haven't even had an MRI yet. This makes the leap of faith I have to take seem bigger. Is it even wise to self diagnose at this point? I'm pretty sure there are no physicians that will diagnose TMS in this country though. At the same time I don't feel like visiting all kinds of structural specialists and going on some wild goose chase to find "the cause" again. Deep down I do know we're not going to find anything. It's also funny how my lower back pain seems almost non-existent now the RSI took over as the main problem.

@plum: Gibson admirer indeed . Although I still have doubts, since I discovered this wiki I also feel hope again, for the first time since many years.

Thanks for the encouragement everyone!

 

[Birdie]

Wintermute, yes it was and still is debiliating. I've made some progress and are still doing so, but very slowly. I think that's ok because I am suffering for so long and a "overnight-cure" would be quite unrealistic.