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.
Written by
Andy-1978
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Hi Andy-1978 I have complex regional pain syndrome I've had it for 6 years and because it was so bad that I have had my left arm and my foot amputated I got crps thought carpool tunnel syndrome so when they operated on my hands my nerves were to damage and that's how I got it. I think u should get u gp to refer u to a pain specialist they can help u with controlling u pain, with my foot I had a car crash and I damaged my nerves in the foot.
Hi Yogibe. I'm always humbled by the fact that there are other people out there who have suffered longer and may not be in as good shape (figuratively speaking).
I've never heard of CRPS leading to amputation so I looked it up. have you found any benefits since the amputation? considering nerves are considered to be a link.
I'm obviously new to the condition and over the past 10 months since the initial flare up my main concern has been muscle wastage.
to fight muscle waste I've got myself one of those muscle toners. (only used a few days and hurts like hell, I figure that it my help)
I know I am being considered for the pain clinic but there is a huge waiting list right now.
Yes I have a lot of muscle wastage in my shoulder and my leg, before I had my arm amputated from my elbow to my hand the burning pain was so bad that if anything touch my arm or hand I would scream and cry at the same time so in the end I went back to the pain specialist and I said to him if he did not get surgeon to amputate then I would do it myself, I still have crps in my stump but it's not to bad at the moment the same as my right arm it's as bad as my left arm. When u get u appointment for the pain specialist get them to put u on a pain management course they will help u try to manage u pain if there is a huge waiting list if I was u I would keep on asking how much longer and get u gp to get onto them u mite be lucky and get someone that does not turn up for there appointment. Andy be carful using that machine some times it can do more harm than good
All the best my friend
Peter
I too have crps, I have had it since 2000.
I had my leg amputated 2 years ago which brings its own problems, but at least I dont inadvertantly bang/ bump/or otherwise aggravate my offending limb. I am not saying this is the answer for everyone but it has helped me .
Please try to get a pain clinic appointment they can be a big help
Wow, fvee and yogibe, your both extremely brave to have voluntarily amputated your limbs. Mine is in both legs, and at present I can get about be it extremely slowly (I mean I'm slower then mother Teresa when she was alive (bless her soul)). when it first hit the scorching pain was so severe I would have prayed to have had them removed just to reduce the pain. but now I get a much reduced burning pain. Sometimes I cannot wear trousers as even the fabric is painful. stupid really, I've a 4.5 year old who loves to poke me in the legs for fun I swear. lol
yogibe, I'll be careful with the muscle toner. My legs are extra sensitive today which I can only say could be the toner.
Is anyone on or has anyone been given those Morphine patches. ???
I've an elderly neighbour over the road who had two both knee replacements causing nerve damage. he swears by the patches and wondered if I/we should be asking for them
regards
Andy
I am a bit confused first you say the diagnosis was Complex Systematic Pain Syndrome CSPS then later you say CRPS at what stage did the condition change
I was initially diagnosed with CSPS, and then CRPS a few months later. The second Rheumy deals more with CRPS and Soft tissue disorders
One of the things that isn't right is that CRPS does not show up in blood tests. Also insomnia is part of CRPS yet you say about extreme need to sleep. Loss in ability to speak is another thing that is not listed in CRPS symptoms. I am really not sure that you have CRPS
in my first post I was trying to sum up the issues over a ten month period. If I was to document the entire timescale as best as I could the page would certainly get confusing. This is why my GP suspected that I had seronegative LUPUS early on. I was showing signs of Lupus but without a positive ANA test (hence the seronegative). With a prominent history of Osteo and Arthritis in the family my money was on something along those lines. I even had a malar style type rash on my face, covering both cheeks and my nose.
Right at the start I had scorching muscle burning in both legs, swelling in joints etc etc. Yes at the beginning there was a need to sleep a lot, the fatigue was so extreme I couldn't even walk up the stairs without needing to pass out. I was immediately put on a Vitamin D boost to help with the fatigue, and to reduce the inflammation. My GP did not want to put me on anything other then painkillers until I was diagnosed as other medications can distort results.
As things started to calm down, around 2nd /3rd month I was left with the pain in both my legs, fatigue and a much more milder form of brain fog. The need to sleep also subsided. It was at this point that insomnia started to come on and has been that way ever since.
The first Rhuemy diagnosed me with CSPS in April this year. due to the previous test results and commenting that CSPS has elements of both Lupus and fibromyalgia and will be treated as such. I then started on the Citalopram in order to boost my Serotonin levels. which has helped a little.
I saw the second Rhuemy at the end of July who confirmed CRPS. He reviewed the files in its entirety and certain test results every interesting those which would usually be associated with an Autoimmune and wondered if there is something in addition going on, but appeared to had settled. Its something to keep an eye on, but I do have CRPS.
Hope this helps with the confusion.
P.S I really like your CRPS music awareness idea. Not so keen on the lyrics or the music choice. I think you need something a little more political and medical within it, but lets see the finished article. In answer to your question I would raise awareness and to top it I used to be in international technical recruitment consultant until the illness and have many contacts including parliamentary to aid in awareness.
Really didn't want anything political in it got the APPG for that. I have no idea how you would get the medical terminology into a song or what song you could use for it. It came down to being we needed something catchy where he words would stick in the brain and repeat, after a lot of searching came down to Johnny Cash's Burning Ring of Fire but I could not adapt thee lyrics to CRPS or Quo's Ain't Complaining and that phrase seems so appropriate for most CRPS sufferers
I see your point, i'll have a ponder maybe other songs could be explored complete of the top of my head.... Queens Who wants to burn forever. Or Micheal Jackson's scream - thats a good one actually
but I guess at the end of the day its the making and the finished article which counts and I am sure we will all be impressed
What ever song you come up with remember you have to get permission from the songwriters and then be prepared to pay the publishers a fee for a licence
Oh I know, I've got a friend who promotes record artists and has an impressive network of singers, bands and celebrities. He will be one of the guys I'd get in contact with when you get something off the ground. Celebs love endorsing charities and my friend loves to plug them
I've no idea how to start one, maybe some research is needed. but definitely some endorsement would help. Also businesses may also want to donate down the line under charitable giving. but certainly I get help with some areas - got nothing but time these days
We won't get anywhere with businesses 5 years 1800 + e-mails telling them didn't want their money just a little bit of time, put articles in their company newsletters and notice boards, contact their MP's less than ten answers, no one would help CEO of Amazon said only cancer
I know of several large companies who may well help, I've known them for well over a decade and have done good business with them but first things first I guess it needs to be a registered charity and right now were probably jumping the gun at the starting post.
Let me know when your music awareness is ready and I can then put a call into my friend within the music promotions sector.
To start you would form a not for profit organisation. Sort out people to run it and the aims, only when you have more than £5000 per annum can you register it as a charity
You mentioned a suspicion of sero neg SLE ? Did you get this confirmed and if so are you on meds for it?
I have SLE,Crps,RA,Sjogrens,Eds,Raynauds and fibro.Oh yep I've also had two lots of cancer surgery and chemo.
If you have SLE you need to be on at least a starter med like hydroxychloroquine otherwise your fatigue will be worse and you need physical and inner strength to deal with life and Crps.
As others have said do pain management do little exercises but do Not overdo it as this can exacerbate the condition and possibly cause it to spread.
Thank you Littleeffie you sound like the sort of person that I was hoping to find.
The general feeling is that it was my cancer that was the trigger for all this, more specifically the chemotherapy (high does carboplatin) everyone (GP's, Rheumy's and Oncology) believe this to be the case as a rare late side effect. Was this the same with you?
As replying to Kevscar above, I do not know if I have another condition that runs alongside. there is suspicion of this but where other symptoms have calmed down they may not show until the next flair up. As my Rheumy said they can only deal with what they can prove and what is happening at the time.
I understand that Seronegative Lupus is very difficult to diagnose. I had contacted St Thomas lupus centre in London who could run a strong of tests but only when the disease is active and hasn't gone dornment. needless to say the jury is still out on the Lupus possibility. On the bright side I'm regularly tested as part of the oncology follow up, which found/proved a couple of things in the early days, relating to autoimmune.
Interestingly you mentioned hydroxychloroquine I had mentioned that to the Rheumy and he felt it was best to treat CRPS with Citalopram or similar to see how I respond. He said that I could use and wouldn't have a problem with Hydroxychloroquine if there is little to no results and if the other symptoms returned.
Its a tricky situation isn't it, would I be correct in guessing your elements took a little while to diagnose as well.
Yes diagnosis has been an on going and time taking process as it has been an eyeopener to my GP who hasnt come across another patient with the same mix of conditions.
I suggested the hydroxychloroquine as although it does take a few months to really make an affect in symptoms it cannot only ,if you have an autoimmune illness,reduce the fatigue,stiffness and muscle pain it is also a very good diagnostic indicator.If you improve within 6 months of taking it and it helps you it shows rheumy that there is an autoimmune condition doing its thing within you whether visibly active or not as happened with me before my seroneg became very positive.
I had cancer surgery to my neck followed by radioactive treatment and chemo (i am on low dose tablet chemo for lupus swell now) then fell at hospital and injured my brachial plexus afterwards then crps followed but not before a physio damaged shoulder further (in dept for 3 weeks then left 2 days after injurying me further) so why and what caused the crps is debateable.The surgery,post op infection,3 weeks iv meds,chemo,fall,brachial plexus or physio.Could even be a mix of the above.I did contemplate amputation at the start but was advised against as it could spread due to surgery and the fact I do not heal well because of Eds.
It is a hard one to live with so treating any other conditions,problems or symptoms can only help .
I do hope you find a treatment plan that helps you
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Im trying to take each day as it comes, some are better then others which I am sure your aware off. 
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