Dear community, I've been recently diagnosed with CRPS in both my legs and want to pick everyone's brains.
It all began with a gentlemen's cancer which was successful treated with surgery and chemotherapy in 2014. following chemo life was strange with extended fatigue, brain fog and the occasional aches n pains, nothing too major until November 2015 (10 months ago) when I had my first major unknown flare. One of the main issues was the intense scorching burning feeling in my legs as well as pain in both arms and hands. together with sickness, dizziness and the extreme need to sleep. Also what came with it was the loss in ability to speak and remember activities of the day, let alone a recent phone conversation.
My GP immediately knew something was wrong, as well as my oncologists. My bloods showed interesting results, sadly ruling out most common causes but highlighting inflammation and signs of an autoimmune disease. The suspicion quickly became seronegative SLE.
I waited for months for an NHS appointment and in the end went private to see a specialist Rhuematologist. Around six months into the new condition, I saw the private specialist who connected the link to the Chemotherapy as an extremely rare side effect which he has seen several times throughout his professional career. He diagnosed me with something called ..."Complex Systematic Pain Syndrome" which has similar elements of SLE, fibromyalgia, and CFS and ultimately I went onto a course of Citalopram 40mg to boost my serotonin levels.
The Citalopram has helped to control many of the symptoms, but has done little with the pain, weakness and loss of muscle mass in both my legs.
Early July this year I saw a physiotherapist who diagnosed weak leg muscles and has given me exercises to help improve. 2 out of three I can do with pain, the 3rd she is out of this world of her box no where am I able to do steps but I try daily.
Also in July, my original appointment with the NHS Rheumy came through. So I went along to get a second opinion and some further information on this "Complex Systematic Pain Syndrome"
My NHS appointment took over 7 months to come through, the Rheumy was fantastic and with a run in with the admin/appointments team at this particular hospital I know they are to blame for the delay as well as my files being incomplete. The Rheumy was not impressed and said that I should have been seen much sooner and apologised confirming stiff words with his team will follow our meeting.
Anyway he confirmed CRPS in both my legs, he cannot say if I will see any improvements, recommends to comply with the Physio and to rest as much as I can not to push myself. He also proposed a trial to reduce Citalopram levels and see if I am able to reduce, come off or if I am dependant due to the condition. I must say I am not looking forward to that but at least we will know.
OK some gaps to fill in.
I've read several times that its likely to get worst over time. I find this debilitating but I am a little mobile, I've learnt to walk with stiff legs and to also block pain which is extremely exhausting but at least I can hobble up the shops and stumble around town at a very slow pace.
Right now I am trying to work on my muscle weekness in hope that this could release some of the pain and stiffness. Recently purchased a muscle tone machine. Which really hurts but I am hoping the end benefit will be successful.
has anyone had any experience of this and does it work or should I stop. I am only in day 2 of my little trial.