Dear [Concerned Relative],


Thank you for your prayers and your offer to get in touch with doctors that you know. Of course you can ask them about my hands.

I have indeed used as much as possible of the available NHS care.
- diagnoses and advice from doctors
- a test to check for early arthritis (it came back negative)
- physical/occupational therapy and ergonomics advice
- an ongoing prescription for a powerful painkiller (amitriptyline) which appears to have a helpful calming effect on the nerves as well as a pain-killing effect.

The persistent aspect of RSI pain, at least in my case and as best as I understand it, is caused by this sequence:
a) The damage to the nerves/tendons/tendon_sheaths causes pain signals to be sent back up the nerves to the spinal cord or the brain.
b) The body responds by increasing blood flow to the affected area, which causes inflammation.
c) In some places within the arm/wrist (specifically the carpal tunnel in the wrist and the cubital tunnel in the elbow), the nerves, tendons, and blood vessels all pass together through a tunnel of bone and ligament. There is very little extra space within these tunnels. Any inflammation causes increased pressure on the nerves, increasing in turn the strength of the pain signals sent back up to the spinal cord or the brain. This is a positive feedback loop, which can persist for hours or days, eventually dying down very slowly.

Amitriptyline, again as far as I understand it, generates a lot of "everything is ok" signals that drown out the pain signals and arrest/reduce the feedback loop. The practical effect is that if an RSI feedback loop starts due to some activity, I take amitriptyline, which blocks out the pain and reduces the duration of the feedback loop, and stop the activity (instead I read, watch videos, go for a walk, and do chores/work which involve moderate, non-repetitive, non-fine-motor-control use of the hands). If this occurs in the evening, taking amitriptyline also allows me to go to sleep (it is very difficult to go to sleep while in pain).

I would very much like to know anything that your doctors might have to say.

However, I doubt that they will be able to give any advice that will drastically change my situation. I have carefully studied several books and websites written by RSI specialists and long-term sufferers. Most of them agree on several things:
- Stop the activity causing the problem as much as you can (in my case, this was typing, but it can also be caused by any other work that requires the repetitive use of the fine motor control of the hand).
- Recovery, if it is even possible, can take a very long time (months if not years).
- Recovery does not always mean full recovery. I probably will not return to complete, carefree use of my hands.
- Initial damage to the nerves does not cause much pain, if any. By the time the damage to the nerves becomes noticeable / hard to ignore, it is often moderate to severe. This is not the same as muscle damage, where the severity of the pain is usually an accurate reflection of the severity of the injury.
- There is no quick fix or treatment. Instead, there are many small adjustments/treatments (posture, equipment, job changes, habit changes), which each have a small but significant effect.
- Surgery should be used only as a last resort where the sufferer is in constant pain and/or the nerve is at risk of death or permanent damage due to compression. Even when it is used successfully, substantial changes to posture/equipment/work/habits still need to be made in order to avoid the chance of a recurrence.

However, there are several positive aspects of my situation:
- I have implemented much of the advice I have read or received and as a result my condition has improved.
- My day-to-day condition is moderate, rather than crippling. I can usually do a small amount of typing, if I am careful, and on some days I can do a larger amount. I can do normal household tasks without pain. Some other people are not so lucky. In extreme cases, they cannot dress themselves or turn a doorknob without experiencing pain.
- Some areas of programming do not actually require much typing (instead, they require a lot of reading and thinking and planning). They do require more text output then I can currently produce, but not too much more, which means that there is a possible future in which I can become employable again.
-- My condition was not actually caused by programming, although many years of typing made me more susceptible. My condition was caused by a combination of stress, poor posture, lots of transcription, advising new transcribers (many emails), and programming constantly over a six-week period.
- I have installed better workplace equipment that improves my posture. Various chairs, a keyboard tray with negative tilt, a keyboard with very short keys (they don't rise very far above the keyboard surface), and a monitor stand with two identical monitors placed one above the other (so that I can switch between sitting and standing). The position of my keyboard tray is adjustable, so that I can type and use a mouse while standing. Throughout the day, I do stretches and nerve glides (I find this to be substantially easier in a standing position). I no longer use a laptop screen if I can help it (this causes bad neck and shoulder posture). Instead, I use an external monitor connected to the laptop.
- I have heavily modified and expanded a proprietary dictation system. It allows me to do a lot of work on a computer. It is obviously not a replacement for hands. It is slower, much slower. I cannot do it all day and I have to care for my voice, much like a singer or a lecturer. However, it is reasonably usable and effective. I dictated 95% of this email.
- I plan to construct a better dictation system based on non-proprietary, open-source code. My current system has various problems that I cannot fix because I cannot change the proprietary code. A more efficient, more accurate, more reliable dictation system should allow me to increase my text output to the point where I am employable again.

In summary, I hope for a good recovery, but I do not count on it, and I work on systems that allow me to work without using my hands. I write all this to reassure you that I am not simply waiting in frustration for recovery before I do anything worthwhile.

Any advice or suggestions from anyone you know would be gratefully received. It is quite possible that I have missed something or not completely understood something.


StJohn


PS. This is probably a rather longer response than you were expecting, but I decided to write it all out properly and thoroughly, so that I could put it on my website, and in future be able to send a link to it to anyone who asks about how they can help. This approach allows me to minimise the amount of text that I need to create.