Originally Posted by Gymjunkie

Dear All
I am newbie on this site and have now done a little bit of posting on the site.

I was diagnosed with CRPS Type 1 in January 2008 year after a complete achilles rupture & repair surgery done last August/September. I have most of the typical symptoms that you are all familiar with. I have the "cold" type of CRPS where my affected leg is cold and mostly I have a deep, cold, aching somatic form of neuropathic pain rather than the burning pain that many folk have. I am starting to get burning pain and hot sensations more of the time these days - I've no idea whether it is my pain changing or not. I have to use crutches all of the time with the exception of sometimes in the house.

My leg was immobilised for 10 weeks after the surgery - in a series of casts and then a walking boot. Looking back I now realise that the kind of pain I had and the discolouration when I stood up were not normal. I didn't know any different having never had an injury like this one or any invasive surgery. I couldn't understand why the painkillers weren't working and why the pain was so bad weeks and weeks after the surgery - everyone just kept telling me "its a really painful injury".

I started my physio in mid-november and had no movement at all below my knee. I could barely wiggle four of my toes. I struggled to make any progress week after week and the pain was terrible. I couldn't make the transition from the boot into shoes nor could I get rid of the crutches. There were times the pain was so bad that I was physically sick. This went on until January and eventually after much backwards and forwards between the physio, the orthopaedic surgeon, my GP and the pain nurse, I saw a pain specialist and CRPS Type 1 was diagnosed at the end of January. I had a lumbar sympathetic block in February which wasn't terribly helpful so it was decided not to do any more. I have tried various meds and have settled on a set that make a reasonable difference to the pain and to the temperature and colour of my leg. Its bearable most of the time is the best I can say.

I started to get spasms and tremors in my affected leg in mid-March which spread over about 2 months to my whole body. The movement problems have continued to get worse - affecting more and more of my body, becoming more intense and more frequent. I have constant muscle spasms everywhere, sudden jerking, tremors, spastic posturing, weakness, dystonia, scissoring, slow twisting of my limbs and body plus I have stretch reflexes. I have mostly got flexor spasming but I get extensor spasms when I lie down. I find it virtually impossible to walk even with crutches because I can't make my legs move - they are rigid and I can only slowly drag them along with huge effort. I experience periods of paralysis where I can't move or stand up although I can feel my legs. I often can't make voluntary movements but my body is constantly moving in an involuntary way. Cold makes my muscles rigid and any touch on my legs (especially unexpected) makes them jerk and spasm uncontrollably. It is also worse if I am upset, worried or nervous. It continues to get worse virtually by the week.

I am going through various neurological tests to see if there can be another neurological explanation but I have been told by a couple of docs that CRPS can't cause such widespread movement disorders beyond the affected limb. My reading of the medical literature would suggest otherwise - I can accept that it might be very rare but it does seem possible.

I guess I have been lucky that as a bit of a gym junkie, I kept going through the whole time my leg was in plaster. After that I started swimming when the physio and ortho told me it was OK. It was absolute agony (which they couldn't understand until I got the CRPS diagnosis). I think they thought I was just feeble! I tried to walk and do the achilles rehab exercises in spite of the fact that I was in absolute agony and couldn't seem to progress. I think that sticking at these things because I was utterly terrified that people would think I wasn't trying hard enough probably prevented me getting a lot of the problems that are caused by not using a CRPS affected limb. I also kept working at getting a shoe and sock on so that probably helped to prevent the extreme hypersensitivity and allodynia reaching such a level that I couldn't bear anything to touch my skin.

I have kept up going to the gym all the way through even when I suffered from the inevitable bout of depression that followed the "high" of getting my diagnosis. It has helped pull me through in so many ways and I go 5 - 9 times a week. I swim (totally unable to use my legs since they are completely paralysed when I get in the water), sit on the bike (no resistance and very slow or the spasms become impossible) and do upper body weights. It keeps me sane(ish).

I have ordered a proper and very snazzy "active user" wheelchair and it should be arriving next week. Unlike some others here, I am really excited about taking the step of becoming a wheelchair user. It will give me a level of freedom and mobility that I've not had for a year. I have been utterly dependant on others and I need to reclaim some life. I have no prospect of any rehab or improvement while I have the movement problems so its a case of either embrace the assistive devices or go nowhere.

That's my story so far.