Hey Kathy,

Yes, Im currently taking glucosamine and magnesium as suplements and have been since summer however not noticed muches difference to be honest. Would there be any other vitamin/herb/supplement anyone would suggest for the pain? Should i be taking vitamin b or wouldnt it make a difference if im taking lyrica?

Regarding the muscle, does crps keep making it more wasted as times passes or would it be possible to slowly build it up even with pain and crps? And cant symptoms improve in time with the right movement and medication or do they keep getting worse? im still a little confused as to what is happening at the moment as i just want to keep fighting in pain and get back to basic life activity (walking,office work, driving etc) even though i will still have pain. Would this be possible as it surley did seem so when i was really improving before germany???

Nigel,
Wasting comes from the inability to move. If you can stand movement things should improve. Be careful with OTC and prescription meds. check with your pharmacist. There are some issues with adverse effects.

Of course it is possible to build up the muscles and get the function back despite the pain and the RSD...it's just VERY VERY difficult unless you can get your pain to a manageable level. I believe the key is to just keep moving.

Earlier this year my RSD got so bad that I could not stand or walk at all...was stuck in a wheel chair and had to get myself around the house by crawling or scooting. It was awful. But I was lucky and my doctor ordered at home physical therapy and I got a wonderful therapist. We started with small stuff...as small as just sitting in a chair and doing toe and heel raises. From there it was about slowly adding in new things and increasing the difficulty. This therapist was really great at pushing me just enough each time she came and adding something new or increasing the amount I did something just enough so that I kept improving without having many setbacks. But the key is to do these things EVERY day and to incorporate them in a way that you balance the resting with the movement/exercises. 6 months later I am now walking with a walker and able to get around a little bit more.

But you really need to keep looking for something to help get the pain under control. Mine is not well controlled right now...but my doctor was able to get me a portable TENS unit and that helps with my pain enough to allow me to do the exercises. Without it I think I would still be struggling to even stand at all. So even just finding something that can help your pain level even a little can make a big difference in what you are able to accompish with physical therapy and exercise.

Nigel,
I am glad to hear at least you are taking glucosamine. Hang in there buddy. I know it can be so hopeless at times but think of one thing you can do each week that you could not do the week before. Last year after my fall in icu I could not even lift my head off my pillow and after eight months of complete body atrophy and just about sitting up on a sofa for almost an hour...I had had enough!! Between dizziness and pain I just kept fighting. I decided I was to young to be like this and of course work comp said they didn't want me to have PT because it may make me worse (yeah like that could happen lol). So, I put myself on my own pT routine because I have had PT three separate times and can probably be a physical therapist by now haha. I do exercise between midnight and 1 am. Crazy I know but it is the best time of day for me to do it in...and when I have less pain. I started only doing two revolutions on my exercise bike and have built up to 8 mins at 50 mph (but cut back to 6 mins because I kept getting leg pain the next morning). I then rest and start doing leg exercises while lying on my bed. It has not been easy but I do some type of exercise every single day no matter how tired I am. I have found I am now able to increase my walking and have started using one cane only!! I still do need wheelchair for longer distances but even that is getting better. I see a huge improvement in my endurance. Start out small and do the same thing for a week or until you think you can comfortably move on. If your knee won't work then work on upper thigh and ankles and arms and then once the upper thigh is stronger then just maybe your knee will become stronger. Stay positve and focused and you will succeed. As far a medicines I have not found anything in my six years that even takes half of the pain away. In the last year I noticed when I take any form of medicine (even a vitamin) my burning pain increases so I took it from God that I should get off as many meds as possible. I am down to barely nothing and will never go back on fentanyl or any opioids. I do have burning pain but I am trying to learn to control it by trying to remain stressful (hard I know but I try), I pray alot, laugh alot, and surround myself with positive people...I hate negativity. People say stupid things to me but I try not to let them get in my space or upset me. I just walk away and think they are idiots for saying the things they say. haha. Don't expect miracles in two weeks. It takes a long time but try your best each day and you will succeed. My goal is to ditch the last cane by this summer and I am fighting each day to get stronger to do so. RSD has gotten so much from my life and I refuse to let it take anymore of what little is left!!! Best of luck to you.
kathy d

Just finished from an appointment with a local pain specialist/anesthesist. After examining me and going through my history, she believes that there is an underlying problem besides the crps. She said that there is a change that’s its my popliteal nerve that is damaged/entrapped in my muscle. I have done every single nerve test and not of them resulted in any nerve damage however she saif that it will not show up. Could this be true? She is insisting a do pulsed radiofrequency asap in the exact point of pain (in the muscle/tendon that connects behind my lower knee). She want to interrupt/release the pain signals.

Im really not keen on this as it sounds really invasive for me as i can hardly touch the area and im also worried that it can make things much worse as they have been in the past! She has dealt with 100 of cases hear and is known to be the best pain expert on the island.

Im really fed up with so many different diagnosis and although she knows the crps is there, there is definelty an underlying problem triggering it. I though it was my tendon but now im not sure anymore!! There must be a way of confirming what is this triggering problem!?

Does anyone have any info on pulsed radiofrequency? Has it worked for crps?

Thanks,

Nigel

Hi Nigel, Sorry to hear the infusions didn't knock this thing out of the park. I vaguely have heard of pulsed radio frequency. I believe I've heard of it on this site and it may not be pleasant at all, if I recall, but I could be very wrong about that recall. I have heard of cases where a person was diagnosed with RSD, had it for years, showed all the signs of RSD and had several EMGs with no positive nerve entrapment. This one person was a member of this site. Her last post was sometime ago. It turned out she had trapped nerves in her feet and with surgery they were released. All her RSD symptoms vanished. I'm not advising invasive surgery but that entrapment can mimic RSD. Just be very carfull