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trying to determine whether or not chronic and mysterious RSI problems are TMS?

Discussion in 'General Discussion Subforum' started by mysteriousmonkey29, Mar 29, 2018.

  1. mysteriousmonkey29

    mysteriousmonkey29 New Member

    Hello, I have had chronic and mysterious repetitive stress injuries for more than four years from computer usage and similar fine motor activity. The primary injury is in my hands. I have seen many doctors for the problem, and they have ruled out a large range of physical disorders, but they don’t know what is wrong with me. I recently heard about TMS, and have been reading various TMS resources for the past couple of days. It seems like I have some of the warning signs, but not others, so I am uncertain whether or not I have this condition.

    I am fair-skinned, 6’2”, 165 pounds, 23 years old, and in otherwise good health. The onset of my pain was gradual, and largely began at my first internship, during which I was using the computer in a poor ergonomic setup for about 25 hours a week (in addition to moderate amounts of texting, piano, video games, etc.) I began to experience quickly worsening pain in the backs of both hands. I attempted to continue work for a month or two with ergonomic improvements, which helped some, but it was too little too late. I quit the internship early, and rested my hands for six weeks before resuming school.

    Since then, I have been unable to use the computer with my hands for any significant amount of time without exponentially increasing pain. I managed to get through college by using speech recognition software and a variety of hands-free computer mice, such as a foot mouse, head mouse, chest mouse, eye mouse, etc. I have incurred a series of cascading (and notably similar) repetitive stress injuries in other parts of my body from these adaptations—knee pain from the foot mouse, neck pain from the head mouse, and even throat pain from talking too much.

    Symptom summary:

    My hand pain is generally delayed from the activity that causes the irritation. Pain/irritation seems to cumulatively build up from repetitive, fine-motor hand usage, and then takes long periods of rest to dissipate.

    Stages of pain:

    1. When my hands first get irritated, the veins in the back of my hand pop out and my hands feel like they are swollen with blood. This is uncomfortable, but I wouldn’t call it painful.

    2. If I continue using them beyond this point, soon they begin to throb painfully. The precise location of this throbbing pain moves around from day to day, sometimes faster than that, but generally remains in the area in the backs of my hands, between the wrists and knuckles. Usually, it is concentrated in lines that are about an inch long. These lines are often, but not always on top of sections of veins that are popping out especially. Additionally, I sometimes get a burning pain across specific tendons (the particular one(s) depending on the specific aggravating motion).

    3. If I continue the activity further, eventually my hands become sore to the touch, sometimes even bruising. Sometimes the bruises/sore spots occur in the backs of my hands, where the initial pain is. Other times, these spots occur in different locations—for example, recently, I have been getting sore spots in my forearms from hand overuse. If I continue use at this point, the same spot(s) become more intensely sore. If instead I rest my hands for long enough, the spot(s) dissipate. When they come back from future overuse, they are usually in different locations within the same general area.

    Aggravating activities:

    -worst: using a touchpad or a touchscreen device

    -next worst: other computer activities like using a mouse and keyboard

    -next worst: other fine motor activities, like writing with a pencil

    I injured my knee is in a similar manner from overusing a foot mouse about a year after my initial hand injury. My knee pain is similar, but not exactly the same. I have not noticed stage 1 pain with my knees, but stages 2 and 3 are pretty much exactly the same. At first I get throbbing pain in shifting locations, then I get sore spots in shifting locations. Aggravating activities (decreasing magnitude): foot mouseing, biking, driving.

    Next worse is my throat. I initially injured it talking to someone all day so that they could use the computer for me. Just like my knees, I have not noticed stage 1 increased blood flow, but I get stage 2 throbbing pain, and stage 3 sore spots. These spots, when present, hurt when I swallow, as well as when I touch them. It’s pretty much just talking that bothers my throat, depending heavily on the volume and duration.

    Finally, I have had more minor repetitive stress pain in my shoulders, neck, and back. Fortunately, I never let any of these get as bad as the previous three.

    With all of these injuries, there is an unmistakable pattern: as the injury gets worse, different activities begin to bother the affected body part, and old activities that already bother it do so at an increased rate. To make matters worse, once beyond a certain level of irritation, the underlying problem never seems to go away.

    For example, since initially injuring my hands, I have rested them almost completely from aggravating activities for months at a time. One summer I lifeguarded rather than doing an engineering internship. My hands didn’t hurt by the end of the summer. But I re-irritated them the very first day of school just unpacking my stuff. The pattern is consistent: the pain subsides after adequate rest but comes right back as soon as I return to aggravating activity.

    Notably, if I respond with adequate rest early enough in the course of a particular injury, then rest does seem to improve the underlying problem (as was the case with my shoulders and neck). Unfortunately, the point beyond which healing does not seem to occur is very low, and I am way past it with my hands, knees, and throat.

    Experience with doctors:

    I have seen four physical therapists, many primary care doctors, two rheumatologists, two sports medicine doctors, one hand surgeon, two hand specialists, two neurologists, one geneticist, and one psychiatrist. No diagnosis has been made. According to various specialists, I don’t have tendonitis, carpal tunnel syndrome, Marfan Syndrome or Ehlers-Danlos syndrome, rheumatoid arthritis, or psoriatic arthritis, or any kind of similar chronic chemical inflammatory condition.

    Oh, and physical therapy (stretches, exercises, massages, and heat application) definitely didn’t help. It may have actually made things worse.

    Things that do help (besides rest):

    I have concluded, through self-experimentation, that anti-inflammatories, such as ibuprofen, Celebrex, and methylprednisolone increase the amount of aggravating activity I can sustainably do. Unfortunately, the effect is not very pronounced, so I cannot simply load up on ibuprofen and use the computer pain free. In fact, even the steroids only allow me to sustainably use the computer for only about an hour per day. This seems to suggest that I have some kind of positive feedback loop of inflammation, although this is in turn contradicted by the fact that I have had many blood inflammation tests and they have all come back negative.

    I recently switched to a vegan diet, as outlined in the following book: https://nutritionfacts.org/book/ (HOW NOT TO DIE, an instant New York Times Best Seller | NutritionFacts.org) Surprisingly, this seems to help almost as much as steroids did (I can now sustainably use the computer with my hands for about an hour a day). This seems to reinforce the inflammation feedback loop theory, because supposedly the diet is highly anti-inflammatory.

    Ice makes my hands feel like they are completely healed (it eliminates stages 1 and 2), for like 10 seconds. Then the pain comes rushing back with the blood flow.

    Other medical conditions/potentially underlying physical causes:

    -My whole life, I have had trouble sleeping—trouble getting to sleep, although I have mostly mitigated this with good sleep hygiene in the past year, and frequent wake ups (~3-6 times/night)

    -Poor circulation. My extremities get cold easily, and that they take a long time to warm back up without external heating.

    -Scoliosis—I have had persistent upper-back pain from sitting and other types of immobility since I stopped wearing a scoliosis brace 23 hours/day at about age 16. Worst curve (and the one nearest the pain) is about 25°

    -Recently discovered food intolerances (through an elimination diet) to milk, onions, and a few other foods. I previously ate these foods regularly, and had correspondingly regular diarrhea. I stopped eating them a few months ago, which eliminated my diarrhea, but had no other noticeable effects

    Personality/psychological problems:

    If I was any fictional character, I would be Spock from Star Trek. I am extremely analytical, logical, and driven. However, just like Spock is half human, I am not 100% this way—I have a sense of humor, and sometimes can just let things go.

    I pretty much never get angry, but I am easily annoyed, and easily frustrated. I’m definitely a perfectionist, and go to great lengths to behave morally correctly. I also definitely have a tendency to repress my emotions, although ironically, I’m often trying to repress this tendency.

    I have some OCD/anxious tendencies, such as frequent nose blowing and urination, and the inability to turn my mind “off”. This last part is why I have so much trouble going to sleep.

    Other symptoms that could possibly fall under the TMS umbrella:

    back pain associated with scoliosis, dust allergies that randomly onset sometime during high school, and plantar fasciitis that I have gotten under control with orthotic shoe inserts

    So now I’m trying to figure out whether I have TMS or one of its equivalents. I have compiled a list of arguments for and against, but would be curious to hear what other people think.


    ~4/8 personality traits (http://www.tmswiki.org/ppd/TMS_Personality_Traits (TMS Personality Traits)): perfectionism, goodism, stoic, ½ legalist, ½ anxiety

    I have seen many doctors that said there was nothing physically wrong with me (with reference to the RSI issues), and have had many tests, 99% of which have come out totally normal (and the 1% that came out abnormal don’t seem adequate to explain my symptoms)

    23 years old, and am in otherwise good health

    Writing with a pencil and paper is significantly less aggravating than using the computer, even though they are similarly fine motor and repetitive. They are not the exact same motion though, so it is possible that this is not an “exception”.

    I noticed in the mindbody prescription book, it mentioned that tinnitus is an equivalent to TMS. I definitely don’t think I have tinnitus. But very infrequently in my life, maybe once a year on average, I will hear a high-pitched ringing sound in one of my ears for a few seconds for no apparent reason. And it happened just yesterday, two days after reading the book and trying some of the techniques. Could just be a complete coincidence, but I thought I’d mention it.

    Scored a 5/10 on this diagnostic quiz: http://www.rsi.deas.harvard.edu/mb_diagnostic.html (Harvard RSI Action --> The Mind/Body Approach --> A Diagnostic Quiz), which is exactly in the middle. (answers: 0,2,0,1,1,1)


    type of pain (especially the sore spots) sounds very different than the oxygen deprivation kind of pain described in the mindbody prescription, but the chronicity of pain sounds very similar to Alan Gordon’s neural pathway theory

    Pain doesn’t seem correlated to stress levels, although I suppose it’s possible that I’m just perpetually stressed/anxious from the pressure I put on myself

    Pain is thoroughly and (almost) always predictably correlated to usage

    PS: the book mentioned that 98% of patients have muscle tenderness in at least one of three spots on their body—top of shoulders, part of the butt, and I can’t remember the third one. This seems worthwhile to try, but I haven’t been able to figure out exactly where I should be pressing.

    Apologies for the long post, but I just didn’t want to miss anything. What does everyone think?
  2. MWsunin12

    MWsunin12 Beloved Grand Eagle

    I would say that internships are stressful. People are watching you, judging your performance, and you are under pressure to apply your education.
    Since this was the beginning of your issues, and doctors haven't been able to find any cause, then it is all most likely TMS.
    One of the obstacles to healing is trying to get logical and figure it all out. That's the brain screaming to the brain "I have something seriously wrong and painful with my body. do research, figure it out!" And then the brain sends signals to the body and decides that it must be true.
    So, you have deepened the Nuero-pathways that say "I'm in pain when I use a computer." You have conditioned yourself to accept that it will be painful, and it comes through for you.

    I don't know if. you've read "the Great Pain Deception" by Steven Ozanich, but it seems like it would be most helpful to you.

    Also, do what you can to set the "logic" and the "reasoning" aside. Sit down. Breathe. Ask yourself: "Am I truly willing to believe that my symptoms are 100% psychological?"
    If not, what is your option? Another doctor? A lifetime of pain pills? Giving up your school or work?
    If you are willing to accept that, as Sarno determined, RSI is TMS, then take your attention off of scanning your body for pain and put it into scanning your heart for how you feel..
    Write down how you feel. No one has to see it. Start there. Why is your brain distracting you with pain? What is really bothering you? What do you still feel anger or rage or sadness or pressure about? Even if you can't identify it right now, start with telling yourself: "I can ignore these symptoms because it is only my brain trying to protect me from my feelings. I accept that."

    best wishes to you. Many, many people have been healed by total acceptance that you have nothing to fear physically. Look at what you're feeling.
    Lizzy and Ellen like this.
  3. mysteriousmonkey29

    mysteriousmonkey29 New Member

    Great, thanks! I will definitely check the book out, and try what you've suggested.
  4. mysteriousmonkey29

    mysteriousmonkey29 New Member

    Anyone else want to weigh in? I am generally starting to believe that I have it, but having a hard time in particular believing the sore spots I described as "stage 3" pain are caused by TMS. Has anyone heard of anyone else experiencing similar symptoms that then turned out to be TMS?
  5. iwire

    iwire Peer Supporter

    What I have come to understand through reading, this forum and seeing my tms doctor is that mind body symptoms are as unique as each individual with mind/body syndrome/tms.....and that our brains are very good at creating symptoms that uniquely create fear and/or distraction for us. And it seems the brain can truly create or perpetuate unlimited kinds of sensations. I have found a lot of help in the Unlearn Your Pain program because it is very process oriented and it helped me move from analyzing my symptoms to exploring what I am being distracted from..... Are you in a location where you could be evaluated by a tms doctor? I found this incredibly helpful.
    Best Wishes......
    Ellen likes this.
  6. plum

    plum Beloved Grand Eagle

    The gentleman who founded this forum overcame RSI so I would suggest exploring the wealth of posts and videos he's created.

    His name is @Forest
    Click on 'his story' as a jumping off point as you'll find plenty of information there.

    Lizzy and Ellen like this.
  7. mysteriousmonkey29

    mysteriousmonkey29 New Member

    plum and Lizzy like this.
  8. plum

    plum Beloved Grand Eagle

  9. mysteriousmonkey29

    mysteriousmonkey29 New Member

    Already feeling way better! I definitely had/have it. Haven't completely resumed all activities yet, but essentially back to living a normal life. Thanks again!
    cdub and plum like this.
  10. mysteriousmonkey29

    mysteriousmonkey29 New Member

    Hey, I just thought I would include more detail, in case anyone else with potential TMS is looking at this post in the future.

    Brief summary of above: I had chronic, debilitating pain in my hands for more than four years from using the computer, and other similar fine motor activities. I would get shifting throbbing pain in the backs of my hands, followed eventually by sore spots/bruises in my forearms (if I continued use). I also had similar problems in my knees and throat from compensating to avoid using my hands (foot mouse-->knee pain+sore spots/brusing, speech recognitio-->throat pain+sore spots). I was particularly concerned about the sore spots, because they seemed much less likely to me to be caused by my brain. I made this post to try to determine whether or not I had TMS. What eventually convinced me was watching the video of Forest (the creater of this wiki), describing RSI symptoms that sounded uncannily similar to mine.

    After deciding that I had TMS (I think this is important to emphasize), I tried many of the things suggested for recovery on this wiki. Primarily, I started daily emotion journaling about things that stress me out/make me unhappy, and slowly returned to normal activity while telling myself that the pain was fake, and not representative of real bodily damage. This worked incredibly well, and after about a week I was able to use the computer normally (with a mouse and keyboard) for several hours a day with virutally no pain. This is compared to the previous 10-15 minutes it used to take to give me exponentially increasing pain and sore spots. Another week and I went back to using my phone (which previously bothered my hands even faster than the computer), my e-reader without the very expensive page turner I bought, and using the computer closer to 8 hours a day. My pain is still 90% gone. It comes on occasionally, but when it does, I just pause, repeat a modified list of affirmations I made from the original wiki affirmations, and then continue my activity.

    1. I have CPS.
    2. The pain isn’t indicative of a physical problem.
    3. The pain is caused by stress, repressed emotions, and/or learned neural pathways.
    4. My [insert body part] is normal, but my brain is malfunctioning.
    5. I will not be concerned or intimidated by the pain
    6. I will (eventually) resume all physical activity.
    7. I will refrain from poking/prodding sore spots, testing painful body parts, and mentally scanning for pain, as hard as this may be.
    8. Exponentially increasing pain would be a problem, if the trend continued. But it won’t. Eventually it will just magically get better and disappear.

    I think #2 was the most important in my recovery. It allowed me to remember that using the computer when my hands hurt wasn't actually a bad idea, as had been previously ingrained in me.

    Notably, although my symptoms were previously very consistent, since undergoing this program, they've gone completely haywire. I still get increased blood flow to my hands when using them, but I only get the throbbing pain very occasionally now. I got the beginnings of two sore spots in my forearms this past week, but ignored them, and they went away before becoming significant (which is particularly crazy because I think it means my brain was fucking with my immune system). I also got pain in new areas of my arms that never hurt before, muscle twitching in my right arm, and pain in my throat just like my previous throat pain (which makes especially little sense because I've barely been talking these past weeks because I don't need to use speech recognition anymore). At one point, the tip of one of my fingers felt bruised (it hurt when I pressed on it). I was about to google it, but then I took a deep breath, and did nothing. 3 minutes later, it was gone. It was so weird that I told my roommate about it, and then 2 minutes later, it came back. It came and went for a day or two, but I just ignored it and continued to use the computer. It hasn't come back since.

    Anyway, my overall point for anyone else thinking they might have TMS is that the range of types of pain/discomfort that the brain can apparently arbitrarily create in the body is insane. So if you think you might have it, but are dissuaded by your specific type of symptoms (as I was), don't fear! The brain can apparently do things to your body I never would have expected in a thousand years.

    What I think ended up being most important in my recovery was:

    1) Reading enough about TMS to actually decide that I had it. You can't force yourself to believe something, as much as you might want to, so the only way is really to keep reading and thinking until you decide one way or another. Writing a list of pro/con arguments, and making this post helped. What ended up convincing me was reading about people with really similar symptoms who got better from the TMS method. And fortunately, these success stories are conveniently arranged by symptom on the wiki:
    2) Returning to activity, but not avoiding the pain. Just realizing that it was fake, and continuing my activity anyway undissuaded.

    http://www.tmswiki.org/ppd/Success_Stories_by_Symptoms_%26_Diagnoses (Success Stories by Symptoms & Diagnoses)

    Finally, I made a playlist to describe TMS to my friends. I don't know if anyone else will find it helpful, but here it is:

    https://www.youtube.com/playlist?list=PLwtCBIRu3ZC1csKJexuJNlip8RyjkGP_X (TMS - YouTube)

    Thanks so much to everyone who made my miraculous recovery possible! And best of luck to anyone with potential TMS. Now time to go resume my life.
    cdub and TG957 like this.
  11. cdub

    cdub Peer Supporter

    Very inspirational. I'm still struggling through my recovery and gave had a pretty bad flare up today. I went back to my normal job and symptoms have been steadily getting worse.

    Need to remind myself that it's TMS and I am safe. Need to be more on it with the journaling and doing the work.
  12. mysteriousmonkey29

    mysteriousmonkey29 New Member

    Glad to hear. I've actually been stressed lately and had a few flare-ups at work. Once you've concluded that you definitely have it, it's not about preventing the pain, it's just about not worrying about it and not letting it affect your activity. It tends to then go away for me sometime between a minute and a day, but even if it goes longer, it's not harmful. Notably, even though I now have so much overwhelming evidence that the pain is psychologically caused, I still find it hard to do this at times.

    Good luck!
    cdub likes this.
  13. cdub

    cdub Peer Supporter

    Yes today it was really bad again. :( Bad wrist and hand pain. And elbow pain.

    Trying to remind myself that it's TMS but it's so painful. Trying to take it easy as I can at work to not scare myself. Using some of my old crutches like foot pedal for clicks just to make it through.
  14. mysteriousmonkey29

    mysteriousmonkey29 New Member

    For me, the pain was never super intense, so I guess it's easier to ignore. That's gotta be tough. Just remember that it's not indicative of physical damage.
    cdub likes this.
  15. bsouth

    bsouth Newcomer

    How are you doing now? Are you still dealing with RSI pain?
  16. mysteriousmonkey29

    mysteriousmonkey29 New Member

    Almost 3 years later, my hands are completely cured, no issues there! I am able to work as an engineer, use the computer all day, no problem. I also got over back pain that I previously thought was not psychosomatic, associated with scoliosis, and knee pain from running. It's amazing.

    Are you struggling with something similar yourself? I'd be happy to help out in any way I can
    JanAtheCPA likes this.
  17. TG957

    TG957 Beloved Grand Eagle

    Congratulations! Another evidence that most of computer-related chronic pains are not RSI but rather TMS!
  18. mysteriousmonkey29

    mysteriousmonkey29 New Member

    Yeah, I'm convinced that a lot of people I know have it in various forms now, but haven't been able to convince anyone unfortunately. Glad it worked for me though.

    It's been long enough that I have almost forgotten what it's like to have non-functioning hands. I actually kind of miss the perspective it gave me, but oh well, this is just human nature I suppose.
    JanAtheCPA likes this.
  19. TG957

    TG957 Beloved Grand Eagle

    As someone who became nearly fully incapacitated in both hands and misdiagnosed with RSI, I fully sympathize. It has been 3 years since I am back to normal, but I still pause quite frequently to reflect on what an amazing gift it is to have a functional body and the knowledge of how to maintain it in shape.
    Balsa11 likes this.
  20. bsouth

    bsouth Newcomer

    Thanks for replying, it's really encouraging to hear it worked for you. I have been struggling with chronic RSI in both forearms and wrists for a bit over a year now from computer/mouse use and guitar playing. I am having a lot of trouble actually believing that this will help me. I get hope when I read recovery stories but quickly go back to feeling hopeless when I feel the pain. I guess I would like to know the best ways to overcome this doubt. I would like to see a TMS therapist like David Schecter to get a diagnosis but I am unsure if he is even meeting in person due to covid.

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