| T O P I C R E V I E W |
| BrianR |
Posted - 03/25/2012 : 12:58:44
I thought I'd share my story about my RSI diagnosis, how it changed my life, and my (not yet complete) recovery. I'm not sure if anyone can relate, but I figured it wouldn't hurt to share. :) I've had neck/shoulder/back/arm/wrist pain for a few years, mostly on the right side (not everywhere at once, the pain tends to move around).
It is my hope that others suffering can gain something by reading this.
I'm writing this in notepad and then copying over so I apologize if the formatting doesn't come out quite right.
-A little bit about me:
I'm a 27 year old graduate student, working on a PhD in applied math. I do both theoretical and computational (programming) research. I also teach/grade during the academic year. For awhile I didn't have too many hobbies outside of math. My main form of recreation for a good portion of my life was video games... until the pain put quite a damper on that. I also really enjoyed walking (walking 8 miles in a day was not uncommon for me, I loved walking everywhere) and a few other recreational activities, and they became significantly more difficult to do, much less enjoy, as my pain got worse. Once I attempted to cut these activities out completely, I quickly became depressed. I spent lots of time just sitting around doing nothing, feeling like my life was incredibly empty. I saw lots of doctors, physical therapy, etc. as I will describe shortly, none of which seemed to offer any real solutions. For most of my life, I considered myself a pretty happy person, so this was a drastic change for me.
-A history of my pain (this is long, feel free to skip if you only want the summary):
It used to be that the pain was so small that it didn't bother me, and it would only occur after long mouse sessions, and would go away after a short time. I played a lot of a computer game called Starcraft, which demands a lot of both the keyboard and mouse. I also did a fair amount of typing, some for programming and some because I was addicted to e-mail, but this almost never caused my any problems; it seemed to be mainly the mouse, but I didn't make that connection at the time. Over time, it gradually got worse and stayed for longer periods of time, and I started feeling pain during other activities.
About 2 years ago I tried playing basketball for the first time in awhile and just catching/dribbling the ball hurt my right shoulder so much that I could barely play, and the pain remained for over a day. At this point I realized that there was likely a serious problem, (I had played 9 months earlier with zero problems) and I went in to see a doctor for the first time. The assessment was that it was my shoulder causing the problems, and they referred me to physical therapy, where I went for a few sessions.
At physical therapy they gave me a number of exercises to improve my posture (which was horrible) and a number of suggestions about computer ergonomics. It used to be that I would reach really far (and up, I had a high desk and a low chair) to use the mouse, and it seemed likely to me that was the cause of a lot of my problems.
A few weeks into this, I went to a beach and got dehydrated and had what the doctors think was a heat stroke. This got really severe and I could barely walk, I had to be hooked up to an IV, and my mother had to fly from her home in Louisiana to my NYC apartment to take care of me for two weeks. I was pretty much confined to a bed during this period with my mom taking care of me the entire time. As if by some miracle, my shoulder pain went away entirely. I attributed this to just needing a break from using the computer so much, and I didn't see any reason to continue physical therapy (which never really solved any of my pain issues, although my posture did dramatically improve as a result).
This was around July of 2010. I was actually brave enough to purchase a sequel to the game that I fell in love with in my youth (Starcraft II), but I wound up not playing it very much. I had oral qualifying exams in October, and at this point those became my number one priority.
I almost never used the computer during this time, and pretty much studied for my oral exams full time+. The pain on my right side didn't come back, but I did start to get pain on the left side of my back (where I had never had problems before).
Eventually my orals came and went, and my advisor gave me a 3 week break before I could start on a research project. During this time I started playing computer games again, and it didn't take long for my pain to come back on the right side (and vanish from the left). It was more severe in my wrist/fingers this time.
I went in to a doctor again and they again referred me to physical therapy, as well as suggesting I stop by a specialist in Sports Medicine. The specialist had me get x-rays, which showed minor inflammation in my wrist. He diagnosed it as RSI and gave me a wrist splint to wear while on the computer. Meanwhile, my advisor gave me a new project that had a large programming component. My pain started to get more severe and persist for even longer periods of time, keeping me up at night and still being present the next day.
I went to a family reunion for Thanksgiving and resolved that for that week I would not use a computer at all. After all, this seemed to fix the problem before! I also told my parents for the first time about my pain, which caused quite a bit of concern from them. My pain, however, got worse over the break, despite the lack of computer use, which was puzzling to me at the time. When I told my physical therapist about this she thought I must have been sleeping on an uncomfortable bed during this trip, which may have aggravated my shoulder... I accepted this explanation since my dad had also mentioned that his bed was uncomfortable (but honestly, I thought it was really comfy).
I also told a bunch of people in the math department during this time about my pain. I was curious since many of them were also on computers for a large part of the day (although perhaps not as long as me), and from what I could see many of them also had bad posture. Most of them did not have any pain, although one did report pain extremely similar to mine.
At some point (I forget when exactly) I told my advisor about this and she told me she used to have the exact same pain (!). She told me it eventually went away on its own and she never learned the real reason why, although she suspected it was for ergonomic reasons.
My condition continued to get worse. I was even getting pain just walking to/from school (only a 2 mile walk), which was a complete mystery to me. I came up with some of the most ridiculous explanations for it ("maybe it's the angle I have my hands in my pockets"). I occasionally tried playing games, but the pain would quickly become unbearable, killing any motivation that I might have had. I wore a wrist splint while playing which just made things more uncomfortable to me due to the restricted movement.
Over my winter break I went and saw a massage therapist, who told me that she had never seen someone who had a neck feel as tense as mine. She took out a lot of muscle knots in my back and I felt real relief for the first time in quite awhile... but the pain returned after a couple of days.
At one point I went on a vacation with some of my friends to my hometown. I decided to stay away from a computer for this week. However, I did a lot of driving (they had a lot of places they wanted to see and I had to drive quite a bit more than I had anticipated). After a couple of days I started feeling pain in my hands whenever I had them on the wheel for more than 10- 20 minutes.
I purchased a new chair, custom built to be ergonomically designed just for me. I spent over $1600 (!) on this chair... only for it not to help at all. I had all but lost hope. This was in March of 2011.
I later went and saw a back specialist who had/has an exceptional reputation. He had me get MRIs in my cervical spine and my right shoulder. The MRIs themselves, while supposed to be painless, were extremely taxing on me, presumably because I was nervous and tense the entire time. In the end, the only thing they showed was a tear in my right shoulder, but he told me that it was incredibly minor and wasn't in one of the places that I had identified as painful, and that it was extremely unlikely that it was the problem. Nevertheless, I started feeling pain there a few days later! He suggested that I quit physical therapy as soon as I felt comfortable doing so (I think he was skeptical that it was doing anything for me) and gave me a number of books that I could reference. At some point (I had met with him a few times) he identified the source of my pain as my neck. I started feeling pain there a month later or so.
-So in short...
The summary of the above, and I guess my main point in writing all of that: I was in pain nearly *all the time* in *different places* and for seemingly different reasons, some of which were *simply unexplainable*. It didn't seem to matter what I did: I always thought about whether it was going to hurt me (and usually it did) and worried about it constantly. It literally consumed my entire thought process. It was very rare for something to cause me to not think about it at all. Still, some things didn't make sense. Why did it move around? Why would my right arm be in such pain one day and then the left part of my back the next?
-Recovery
I looked up one of the books recommended to me on Amazon and began reading the reviews. I saw a couple of references to one of Sarno's books and ordered it as well as a few others. This was my first exposure to TMS, and it offered a radically different viewpoint than what I had been told thus far. At first, I dismissed it as ridiculous, but the more I thought about it, the more I said to myself, "This really does sound like me." For the first time I gave serious thought to the idea that maybe the pain wasn't caused by physical means after all.
I think the part that resonated the most was a part where I started thinking about if I would be "happy" if I had no pain at all. I had convinced myself during all of this that the *only* reason I was sad/depressed was because I was in pain all the time. I had the attitude that "If I had no pain then my life would be perfect." I started to ask myself if this was really true and I realized that the answer was no; there were a lot of things that I was unhappy about in my life.
For a few brief time periods, I actually did feel complete relief, even when doing things that I had previously identified as culprits, though it never stayed away forever. The pain still comes to this day (it's been 10 months since I decided that maybe there was something to this book), but it often feels more manageable, and I try to not let it deter me. I started playing video games again, started playing basketball again, and all in all tried to take my life back. My posture has gone back to being really crappy but I no longer think that's the cause of my pain in any case.
I've always been a bit of a perfectionist and I think that this has caught up to me. If I sit down and try to think about things where I either screwed up in the past or someone was critical of me I often find myself getting really angry; this is only something that happens when I'm by myself. I think this is more of a factor than the serious traumatic events that other TMS victims seem to have suffered from.
Interestingly enough, I've noticed a very high correlation of pain and stress/lack of sleep. If I try to relax when I know I have work I need to do, it kicks in. The fact that I recognize this doesn't seem to be of much help (yet) but it does keep me from panicking and has kept the pain from getting as bad as it used to.
Obviously I cannot make the claim that I've made a complete recovery (I very clearly haven't, so I don't think I should classify this as a success story), but I am definitely better than I was a year ago, and I've learned a lot about myself in the process.
When I first told some people about this theory last year -- and how there might be something to it -- the response I got was very mixed. Some people agreed there might be something to it, many adopted the "whatever works for you is what you should do" line of thinking, and others told me I was being completely irrational. I myself was not too confident about it either, and I think that came out in my explanations. As I became more confident, it showed, as more and more people gave their encouragement/support instead of just telling me that I'm crazy!
One nice thing about the world of today is how easy it is to acquire information, and I think that reading the success stories of others online went a long way.
-The take away
As I noted above, I think the thing that helped the most was realizing that my life wouldn't magically be the best if my pain was taken away. The idea that this pain is a distraction seems very real. Sometimes I still have my doubts about this, but for the most part I think this is the most plausible explanation.
Thanks for reading. I hope you got something out of it! |
| 1 L A T E S T R E P L I E S (Newest First) |
| Neo Veloci |
Posted - 03/26/2012 : 02:42:44
Hey BrianR,
Thanks for sharing your story. Mine is a lot like yours.
I got from your story that you seem to get stuck in anger, which I can definitely relate too.
Maybe my thread http://www.tmshelp.com/forum/topic.asp?TOPIC_ID=7291 can help you with this.
Good luck! |
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