CTS & plantar fasciitis
|2 November 2010
|Originally Romain published his story on his university webspace. However it was deleted some time ago. He kindly gave me the permission to republish his comprehensive and truly amazing story.
I am not a doctor, and I don't know what you have. I can't say if you have Tension Myositis Syndrome (which is what I had) but if you do, most likely you will recognize yourself in my story and then it will be obvious.
In a nutshell
I had carpal tunnel syndrome for about 6 months in spring and summer 2006, combined with plantar fascitis (a foot condition) for about 4 months. I was crippled to the point that I could not work on my computer without speech recognition, even to move the mouse, and could barely stand long enough to take a shower. I consulted every kind of doctors, in vain.
Then one day I stumbled upon information regarding Tension Myositis Syndrome (TMS), a psychosomatic disorder, and recognized myself instantly in the description. Armed with that knowledge, I was mostly cured in a matter of days, and completely in a matter of weeks.
(1) Psychological health matters, and can severely affect your physical health.
(2) The hardest part is getting the right diagnosis. Apparently many people diagnosed with carpal tunnel syndrome really have TMS, which is easily treatable in most cases.
Why writing about it?
Few people know about this, and carpal tunnel syndrome affects a growing number of people, in large part, it seems, because they are misdiagnosed. The dominant view is that of a structural problem, tendons too weak or overused. My story gives an example of how and why this diagnosis is made, while giving many proofs that it is wrong.
I have lived a nightmare for 6 months and I am eager to help save others from this. If you suffer from RSI, carpal tunnel, plantar fascitis, back pain, etc., I encourage you to explore the ressources I point to at the end, and give a sincere shot at the recommendations they give. You risk nothing, and it costs nothing. Actually, one reason you probably have never heard about it is that nobody has tried to sell it to you. Think about that.
What is TMS?
Dr. John Sarno coined the term Tension Myositis Syndrome to refer to a series of pain syndromes that he was convinced were psychologically induced. Among them are back pain and carpal tunnel syndrome. He wrote a series of books on the subject. I read The Mindbody Prescription (price: ), which was interesting, though I was already mostly cured by then, just by reading stories like mine on the web. In short, his theory is that stress constricts the blood vessels, so that continuous stress can deprive muscles of oxygen. The pain it causes creates or reinforces a fear of hurting the body part involved, which reinforces the pain, creating a vicious cycle. He also thinks that the pain plays a role in diverting your thoughts from what really bothers you. The pain may affect just about any part of your body, but will stay more easily in a place where you will believe that the pain is the sign of real damage. This makes TMS effectively transmissible: the more you have heard about carpal tunnel syndrome, its effects, its prevalence, the more likely you are to get it.
To be clear: although the cause of the pain is psychological, the pain is very real, and can go from mild to unbearable. Also it is clear that repetitive strain injuries do exist, but they require a much greater trauma than mere typing, and represent a small minority of people with carpal tunnel syndrome.
What's the cure?
First you have to accept the diagnosis. Your conviction that there really is something physically wrong with your arm (or other body part) makes you fearful to hurt it and causes the pain. If you're not sure, at least give it a sincere shot, try to convince yourself as much as possible for a few days. Sometimes a few hours will be enough to see results and finish to convince you. I give more advice towards the end of my story, and a few pointers at the end contain much more information.
My view on this is that you should treat your condition as you would treat a phobia, by voluntarily deciding to experience the cause of the fear but in a controlled environment where you can decide of the pace and intensity of the experience, trying to make it as positive as possible, then slowly increasing the difficulty from session to session to build confidence.
If you don't like psychology
Some people in "hard" sciences have a strong preference against psychological explanations. Some simply confuse Psychology, a respected field of science, with the self-help and esoterism sections of their local bookstore, which is about as far from Psychology as Astrology is from Astronomy. A few are overachievers who see their own psychology as a weakness whose existence they do not wish to aknowledge. I understand that the idea of a psychosomatic disorder sounds a little odd or magical to some, but there is no magic required, the brain has many ways to influence the body. As I say in the story, I have experienced feeling sharp pain, wishing it away, and seeing it go away, and this many times. That's a pretty convincing experiment to me.
In part to help them make their own judgement, I've used two fonts to distinguish facts and comments. Facts describe the story as it unfolded from the perspective I had at the time. Comments give the interpretation I now have.
The story: Onset
At the end of January, 2006, I worked for more than three days without any sleep to meet the submission deadline of a conference. My arms started to ache at the wrist and forearm, and towards the end it hurt really bad. I knew I may be seeing the beginning of carpal tunnel syndrome, but I thought I would rest for a while after this. It started with my right arm, then affected the left towards the end. The last few hours towards the deadline were very stressful, frustrating and painful. I had to stop using my fingers. Instead I would hold my hands above the keyboard and lower my arm until a finger touched the key. I managed to submit my paper, but the pain remained the following days.
I had everything wrong, here. My symptoms were started by the intense stress, and the lack of sleep rendered me powerless at fending it off. I could litterally feel waves of stress (I guess that's adrenaline) flowing through my body. By trying to protect my arms, I further brought attention to them and concentrated the stress towards them. This is an important point: the efforts you make in trying to protect your arms actually worsen the symptoms.
That episode was also the start of a longer term problem, because of conditioning. Conditioning is "learning", but at a deeper level than when you learn a lesson. For instance when you are hungry you salivate at the sight of food, and even if you know that the food is not for you, so that salivating is unnecessary, you cannot control it. Conversely, if you had been fed by feeding tube all your life and I told you that you should salivate for food, it would be very hard to do. This is another important point: understanding that your arms are not really in danger is necessary, but not sufficient to de-condition you and suppress the reaction. To learn or un-learn this type of reaction, you must experience the association (more on this later).
When I typed, I was fearful it would hurt, and my body was preparing itself for the pain to come when I would touch the keyboard. That fear would make it hurt indeed. The pain immediately brought the confirmation of my worst fear: that I had carpal tunnel syndrome and was at risk of being unable to pursue my career. I had heard several horror stories on the subject, which enhanced the effect. Typing --> pain. Typing --> pain. Try again... same thing. That's all you need to be conditioned.
The conventional doctor
A few days after this, my wrist and forearm were much better, but still hurt sometimes. Very concerned by carpal tunnel syndrome, I went to see a doctor at the Tang center (University Health Services) in Berkeley. She asked me a few questions and diagnosed mild carpal tunnel syndrome. She gave me some ergonomics information and prescribed a medication (Aleve) for the pain. I didn't like the idea of the painkiller, because pain is a healthy warning sign. I reasoned that I'd rather feel the pain than unknowingly hurt myself even more, so I didn't take it. She also asked me to cut down my computer time by 50%.
I was devastated: I work all day on my computer, and it was unlikely that I could continue as a researcher if I cut my work in half. On the other hand if I didn't comply I faced the prospect of having to quit altogether. Was my condition really that serious? She said that my pain was not so much about the allnighters I had pulled before the deadline. My tendons, she said, had been damaged by years of computer work in unergonomic positions, and my latest effort was merely the last straw that broke the camel's back. In other words it would take a long time to fully heal, even if the symptoms subsided.
If you've read enough Sherlock Holmes, one element should have struck you as incoherent in this story. If really the damage had been caused by the cumulative trauma of thousands of projects and deadlines throughout my life, how come both arms reached their danger zone at exactly the same time, especially considering that I use my right arm more? Can damage be somehow transmitted on the other side? It doesn't make sense at all. This struck me as really odd, but for lack of a better explanation I had to consider it a coincidence. Only when I finally heard of TMS was it given a sensible explanation. As Dr. Sarno point out in his book, how come the generation that typed 12 hours a day on clunky typewriters never experienced carpal tunnel syndrome? It must be because typing is not in fact what causes the symptoms.
Back at home, I tried the various advice she had given me. I tried the hot-water / cold-water alternation, which caused me excruciating pain for several days. I tried cold only, which hurt but not as bad. I tried stretching, taking breaks, I bought wrist braces, nothing worked. For the next several months, the pain had ups and downs, never disappearing completely, and in fact slowly increasing. I found myself forced to limit my computer use, and to pay constant attention to my arms for fear of hurting them.
In retrospect, none of these things were necessary. In fact, they contributed to making me focus on my arms constantly. Some of the advice on leaflets the doctor gave me were: "Hold it gently! Hold your mouse as gently as possible", "Pay attention! Listen to your body. Ignoring the pain can lead to chronic injury". These are completely counterproductive as they make you more fearful. Many exercises such as stretching help a little, not because of the stretch itself but because they are relaxing, and help improve circulation a little. I did find a mention of stress in one of the leaflets: "Seek emotional support for feelings of anxiety, frustration, or depression that may accompany RSIs", but the phrasing implies that they are an effect rather than a cause and the rest of the leaflet is very clear that the cause of the pain is overuse of muscles and tendons. Besides, none of the doctors ever mentioned anxiety.
The physical therapist
In april, it was clear that my condition was not improving, if not deteriorating. I made an appointment with a physical therapist, Dr. Mel Terry at the Tang center, first in a group session and then for a personnal evaluation. He explained that carpal tunnel syndrome is really a compression of the nerve, which goes from the upper back to the hand through the shoulder, which is why sometimes the pain goes all the way to the back. The main problem was my posture: I was crouched, with the neck leaning forward, requiring a constant effort from my back. This in turn compressed the nerve. He showed me how to sit properly and gave me a large foam roller with some exercises to learn the correct postures.
That made some sense. I remembered having some discomfort in my back from time to time, even before all this. I also had hurt my neck a bit five years earlier while diving at the pool, and it now tended to get stuck and free itself with a little snap. Maybe something was a little out of place and I was not helping with my poor posture. I liked the foam roller, which seemed to help a little, at least at the beginning. At first I found that keeping the right posture was really hard, I had to make a lot of efforts and quickly became very sore in the back. I stopped trying as hard, but never found a good way. Now that I was aware of it I could see that indeed the back had a part in the process. I could feel my back hurt whenever my arms did, and it seemed to deteriorate, often hurting more than my arms themselves. It seemed to confirm Dr. Terry's diagnosis and signal the progression of my condition.
This is a typical case of symptom transmission. My back was fine before I went to see Dr. Terry, but his assurances that the back was involved made me pay more attention to it, and initiate a behavior of protection, of fear of hurting myself by using my back. Meanwhile the stress that was the real cause of my symptoms was stronger than ever and very happy to attack another body part by constricting my blood vessels there too (and whatever else stress might do). My quals exam was coming soon, my girlfriend Audrey and I had a hard time sleeping thanks to noisy neighbors, our wedding was coming too, along with a trip to Las Vegas to celebrate, then right after that our annual trip to France to see our family, just before I would leave for Seattle for a summer internship, all a few days apart, so I had a lot on my plate. Wait, aren't a wedding and recreational trips happy events? Sure, but they added to the pressure. In The Mindbody Prescription (price:
Dr. Sarno explains that happy events are just as likely as unhappy events to trigger pain syndromes. In fact, I love my work and it all started because I was afraid of losing it, not because I was unhappy to do it.
Plantar fascitis on our wedding day
In may, the day before our wedding, I started feeling a little pain in the right Achilles tendon. I went to pick up Audrey and we both went to the hairdresser. The pain kept increasing but I downplayed it because I did not want to worry her. I was starting to worry however. I started limping to reduce the tension, I tried all kinds of funny walks but nothing worked. Once at home my pain had become severe and I couldn't walk. I scratched my head for what could have happened, and remembered that I had tripped and slightly twisted my ankle that morning. It had not hurt at all, nor during the day, but what else could it be? Audrey was clearly annoyed that I had not been more careful on a day like this, but she took it well and we decided that I would simply use crutches. I was aware that the timing was very suspicious, and readily admitted that. Did I have doubts about the wedding? As deep as my soul-searching could go the answer was no, and even if I had, how could that affect my foot? However unlikely, it had to be another strange coincidence.
I have twisted my ankle many times much more than this and never had a problem. It had nothing to do with twisting my ankle and all to do with the wedding. Once you understand the real cause, it is perfectly clear that this was not a coincidence. What exactly happened? My baseline level of stress was pretty high, and when my foot started hurting, I panicked thinking that it was really not a good time. I concentrated hard to protect it, my stress went through the roof, cutting all blood to the tendon I was focusing on and starting a much sharper pain. The initial small pain was nothing, the kind of thing you feel a hundred times a day in different places and forget immediately.
Our wedding day was somewhat complicated by this, but I found myself able to walk comfortably enough to not require crutches at the crucial moment and for the pictures. Fortunately it was a very simple wedding, just us and our two witnesses, so I didn't have to dance or anything like that. After that we had more time and went to take some pictures in the Golden Gate park. I seemed to improve a little.
The following day we flew to Las Vegas. If it had been a real injury, it would probably not have been a very good idea, but we had booked everything and wanted to go, even if it meant missing some things. My pain had ups and downs during the weekend. Amazingly I was even able to jog for a while at some point, but it came back and I thought I had gone too fast (even though I had not felt anything during the jog).
All these ups and downs were only related to how I felt, not what I did with my foot. I was able to walk at the wedding because after a lot of running around and worrying, everything was finally ready, we could just relax and enjoy. If someone had stolen my wallet in Las Vegas and I had chased them by reflex, I am sure now that I would not have felt a thing.
Snap back to reality, oh there goes gravity, the week after our wedding was my quals exam. I worked hard on my presentation. Unfortunately when you have carpal tunnel syndrome, a Powerpoint presentation is about the most painful thing to do. I had been good with not using my arms too much, but it seemed like I was using up all my reserves, and that either of two things would happen: I would give up or my arms would catch fire. I pressed on because I reasoned that if I gave up now I would have to do it all over again in September and face the same problem.
The day before the exam I found an hour to go see a chiropractor in San Francisco, Gregg Carb, who practices Active Release Therapy. I had heard it was effective for sports injuries and I had read that it might be effective for carpal tunnel syndrome. It didn't help me at all, quite the contrary. It hurt quite a bit during the session, which consists in pressing and pulling on the tendons, but the worst part was that they made me fill a two-page questionnaire in fine print. At night before the exam I was unable to make a move, and would not have been able to finish my presentation if not for my friend Guillaume's help, who came at my home to be my hands.
The sharpest increase in pain always happened not long before the deadline, as if I was using up my reserves and had just barely enough (or not enough) to finish what I had set to do. In fact what was happening was that the stress was increasing as the deadline loomed, and the increase in pain reflected just that.
Plantar fascitis diagnosis
Meanwhile my foot still hurt, and in fact the other foot started to hurt too. I thought I might have overused it to compensate for the first one. I also could not use the crutches anymore because they triggered flare ups of carpal tunnel syndrome, so I was quite handicapped. I went back to the Tang center and was seen by a nurse, Barbara Bodle, and a man whose name I don't remember, who both diagnosed achillis tendonitis and recommended rest. Normally a tendonitis recovers quickly but maybe I had insisted on using my feet too much. They also pointed me to Berkeley Sports, a nearby shop.
I went there, and when I described my symptoms the guy instantly knew what it was because he had had it before: I had plantar fascitis, which affects the underside of the foot, but can reach up the tendon and up to the calf. How many miles do you run per day? I don't run, really. That's strange, it usually affects runners, but maybe you walk too much with your heavy backpack. He gave me some special inserts, and they immediately seemed to help. It was not perfect, but it was better so perhaps I had finally found what I had.
I accepted the diagnosis because I had no other explanation, but really it doesn't make any sense. We were back to the long term overuse theory. It seemed to explain why I had similar symptoms on the other foot despite not having twisted it, but it meant yet another strange coincidence where my feet would have decided to fail not only at the same time after years of hard work, but a few months apart from the onset of my carpal tunnel syndrome. And if it had nothing to do with twisting my ankle, why did it start the day before our wedding?
Over the next few days the improvements did not continue. The tendon was slightly better, but soon I could feel it under my foot at the attach points of the tendon. In the weeks that followed, the pain kept shifting between the tendon and the sole of the foot. I was amazed that the Berkeley Sports guy was so quickly confirmed in his diagnosis, but at least it was now clear that he was right.
Yet he was not! He had transmitted this new symptom to me by his certainty that this was what I had. I should have been more than amazed, I should have been suspicious. If you read other TMS stories, you will see how common this phenomenon is.
I was really worried at this point, and the future to which I had devoted so much energy seemed very compromised. I did the trip to France and a few other things, struggling with my feet, and did not touch a computer for two weeks, yet when I tried working again my carpal tunnel syndrome quickly came back. I was essentially unable to work. Fortunately, my friend Simon had just got a trial version of Dragon Naturally Speaking, a speech recognition software, and he gave it to me. That made a very big difference. I spoke softly and drank a lot so I wouldn't get RSI of the throat which I had heard some people get. Writing scientific papers full of equations was a struggle and I was barely half as efficient as when I was valid, but at least I could work, and from where I was it seemed like the only hope. I thought I would probably have to use it my whole life.
I was aware of the many strange coincidences surrounding my condition. I read more about plantar fascitis and it didn't look good. In fact the descriptions resembled the ones for carpal tunnel, with some people going through years of unsuccessful surgeries and other treatments. Both were poorly understood forms of inflammation, vaguely associated to overuse. If I got both at about the same time and they look so much alike, they must be related. I do a lot of statistics and I knew the facts screemed for a relationship, but I could not think of one. I looked for things like arthritis, or degenerative diseases, but they did not seem to fit.
Thankfully, I did not find one that fit. If I had, it is likely that I would have "caught" all the remaining symptoms, with the pain taking over my entire body.
The foot doctor
I spent the summer in Seattle working as an intern for Microsoft. I explained my problem and they got me Dragon Naturally Speaking and an office by myself so I wouldn't bother anyone by talking. The whole summer, I was completely reliant on speech recognition. Once in a while I would try typing a little but would be quickly punished. I could also walk around the building, but my movements were very limited. Fortunately I discovered that biking was ok, so I could commute.
I went to see a foot doctor, Jennifer Saam, who diagnosed tendonitis, prescribed some medication and gave me a splint to wear at night. I asked her about my observation that the pain seemed to move around, but she didn't know what to make of it. "I swear, doctor, it feels like there's a constant amount of pain that needs to be there, no matter where it is" (I said it as a joke but in fact that was perfectly correct). After examining me she told me that I was bow-legged, which I knew, and that this was the cause of my problems. In fact someone like me should probably avoid running altogether. I had already heard that a few years before when I had hurt my knee, but I had healed, forgotten the advice and continued to run without problem before my plantar fascitis. If two doctors said it, maybe there was some truth to it. The splint did help a little. At least I felt more fresh in the morning, but it wouldn't last very long. In fact I would usually quickly forget which foot had had the splint for the night. Also after a few weeks it seemed not to work that much anymore. By the time she had predicted I would heal, there was little improvement if at all.
Like all the previous remedies, it works a little while I'm hopeful that this is the cure I had been looking for, and stops working after it becomes clear that it won't be the magic bullet I had hoped. Notice also the pattern among the doctors. Conventional: "let me give you a medication", physical therapist: "it's all about posture", sports vendor: "it's your shoes", chiropractor: "you need massage sessions", foot doctor: "your foot is not properly aligned". They mean well, but you should keep in mind when you see doctors that they don't know everything, even those who try to make you believe so. In particular, very few doctors are trained in psychology or have any experience with psychosomatic disorders. It is also often tempting for them, once they have identified something that seems related, such as being bow-legged, to quickly declare the case solved without questioning it. They also rarely get (or seek) feedback. They never hear back from you and assume their diagnosis was right. After I recovered, I called Dr. Saam to tell her what had happened, so that she would recognize TMS next time, but she did not believe me, and did not ask any question to know more. I was quite disappointed.
Tension Myositis Syndrome
On Aug 20th, 2006, I made the discovery that would change my life. Pretty much by accident I stumbled upon a story just like this one on the web. I recognized myself more and more as I kept reading, followed the trail and found other websites with stories, advice and discussion. I knew it had to be right, it explained too much to be wrong, yet the hardest part for me was to accept that stress, which I viewed as just a mild annoyance, could be so powerful as to fuel so much pain. And how could it be directional, and affect only the body part(s) I was focusing on? I still don't know, but it's the only explanation and it is much less extravagant than all my previous hypotheses.
I spent a day reading, and decided I would start with my feet because they hurt less. I concentrated for about half an hour, letting the idea sink in. I had worked for a time at the Pasteur institute in Paris on the reward system of the brain and the mechanisms of addiction, so I tried to apply some of what I knew. In particular, I knew that a repeated association can be stronger than a conscious decision, that it's not enough to "know" that something is good or bad to feel that way about it. So I made an extra effort to believe it, I made the decision that even if it hurt I would discard the information as a lie and convinced myself that a little walk, no matter how painful, could not damage my feet. I relaxed, tried to fear nothing. Then I stood up and walked, trying to walk as normally as possible. I started feeling a little something, but as I shifted my attention away from the pain, it went away. I walked for a few minutes, singing to myself "Believe" by Franka Potente, which I found very appropriate and gave me something to concentrate on: "I don't believe in trouble, I don't believe in pain, I don't believe there's nothing left but running here again, I don't believe in panic, I don't believe in fear, ...". And the pain went away. I could walk, just like that. I was ecstatic.
I did not try typing, one thing at a time, but I focused on relaxing and not believing my pain. Sure, the pain is real, the message is there, but you should not believe what it says. It says that there is grave danger, that one more inch will cause irreversible damage, but that's not true. At night I tried to relax. I still had pain, but less. The previous days it had taken me over three hours to fall asleep due to the pain in my arms and back, and that night it took me half an hour. The following day I fell asleep right away.
An example of the difference between knowing something, even for sure, and having internalized this knowledge is my surprise when the pain went away. I knew it had to be true, yet I was surprised, so I did learn something from experiencing it. Similarly, even after my experience with the feet, just approaching the keyboard was still enough to start symptoms. A part of me had been trained to associate keyboard and pain, and that was more powerful than my conscious knowledge of the truth.
I felt I could not recover from my carpal tunnel syndrome in one step as I had done for plantar fascitis, so I set to de-condition myself progressively. A couple times each day I would choose an amount of typing that I felt confident enough I could do without irreversible damage, then I would concentrate really hard on relaxing, letting blood flow through my arms and back, and I would do the amount I had set to do without thinking, discarding any pain information and concentrating on how little pain I felt, how bearable it was, how unfrightening. I knew some part of me could not be told this lesson, it had to be shown. The first few days, I typed just a small sentence, then a longer one, then a few. If I felt too much pain, I stopped, but not because I feared for my arms. I didn't want to insist and teach myself the wrong association. It was a delicate balance between discarding the pain entirely and still keeping a little eye on it to bail out in case it went really out of hand. If I failed, it just meant I was not yet ready, and I reverted to shorter passages.
I would say I was about 50% cured within a day, and 90% within a couple weeks. Several months after that, I oscillated between 95% and 100%. The mild relapses come at stressful times, such as exams or arguments, and now that I know what to look for the association is quite clear. My foot pain, dispite starting to disappear earlier, lingered the longest, maybe a month and a half. I would often feel a sharp pain out of the blue, start slowing down and limping a little, but then decide it had to be a trick, ignore it and walk normally, and observe the pain disappear. Some pains where quite sharp and convincing, but they went away too. On top of the strategies I've described, I also spent a lot of time thinking more deeply about the role of stress in my work. I can't say I've found great ways to improve, but just being aware of stress helps me manage it and take it into account rather than passively observe it happen.
What a difference a couple months can make. Mid-August I could not write a single word without horrible pain, and I thought I would be crippled for the rest of my life. Fast forward a few months and I've just written this long story, all with the keyboard, with just a little hint of back pain, simply due to the recollection of these painful memories. I no longer use speech recognition, I've reverted to working on my unergonomical laptop in the subway during my commute, I don't care much about my posture, I weight-lift, I run, I walk on my hands, you name it. So now do you really think my tendons have suffered long-term damage from years of overuse? Is my posture really pinching my nerve? Am I really unfit to run because I am bow-legged?
Rachel's website contains a lot of useful tips and links that I don't repeat here. You can download the recording of an infosession on the subject, which I found really useful. Thanks Rachel!