Hi all.Advice on CRPS pleeease.: I have been... - Pain Concern

Pain Concern

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Hi all.Advice on CRPS pleeease.

littleeffie profile image

I have been advised to join this community from a fellow Lupus member.

I have Ehlers Danlos hypermobilty, SLE Lupus, Rheumatoid Arthritis, fibromyalgia, sjogrens, Raynaud's ,prolonged QT and survived thyroid cancer.My two youngest children still at home and also have Ehlers Danlos, ADHD, aspergers,Raynaud's, epilepsy and my husband has osteoarthritis. I have always kept a positive attitude and kept us all seeing the funny side of life and dealt with the pain,fatigue and associated interesting ? effects of the above but now have been diagnosed with CRPS or rsd or hand and shoulder syndrome all of which are apparently the same thing and the relentlessness of it is dragging me to a new level I can't seem to get my head round.Any advice on what does and doesn't work would be big time appreciated.

Many thanks in advance Effie 8)

11 Replies

Hi have u been to see a pain specialist they can answer any think on crps and also give u the right meds for it also get u GP to send u to phisyo if they get it early some times they can treat i

littleeffie profile image
littleeffie in reply to

Hi and thanks for reply.I have been referred to a different pain specialist as last one I was seeing for my other illnesses didn't feel he knew enough about CRPS.One problem is I have adverse drug reactions to a few.Allergic to penicillin,ibuorofen and amitryptilene (spelling may not be correct),had psychotic,interesting but dangerous ,reaction to prednisolone and as recently messaged someone found myself studying first the kitchen floor,then bathroom floor then repeatedly studying the threads in the living room rug as lyrica/gabapentin makes me fall flat on my face roughly every twenty minutes .Unfortunately when I first damaged my shoulder in a fall it was classed OK.Then after rheumy appt.was told possible rotator cuff injury and sent for physio who saw me once ,over rotated my shoulder ,despite my warnings of hypermobilty, and I felt it go.Slumped in chair feint and retching she pops out to talk "friend", comes back in and says its just my fibromyalgia ,puts me in a wheelchair and rolls me out to my husband saying discharged from physiotherapists dept.Back to gp who arranges MRI and xrays.Xrays fine and told MRI is normal which came as a shock. Four weeks later back to gp asking for amputation and she looks at MRI results and said " oh there is a second page to the results lets take a look" Oh goody do lets!Apparently the second page showed tendon damage and slap tear with freying bicep. Nice.Sent to orthopaedics who looked at the now inch and a half of muscle wastage, purple blue mottling and sweating, cold hand,arm and shoulder and told me that I have stage 3? CRPS which is probably partly irreversable?.Sends me back to physio(should have mentioned the previous physio left the department three days after my nightmare appointment) who has now referred me to a specialist physio while awaiting pain consultant which they expect to try nerve blocks? or cord stimulator? From initial fall it is now over a year .

Any info on treatments would be great

Thanks Effie

in reply to littleeffie

Hi effie who told u that u had stage 3 crps because there is no stage 3 there is only 2 stages.

Stage 1 is when fall or twist u hand knee or u foot things like that.

Stage 2 is when u have nerve damage I have stage 2 have in my right arm and my right foot I had my left arm amputated because it was so bad u will find that most pain specialist will say no to amputations there are other specialists who just deal with crps

Before I had my arm amputated I tried spinal cord stimulator it did not work for me I also tried other things but in the end my arm was amputated I still have the crps in my stump but also I can still feel that I have my hand and the pain I get from that is some times worse than the crps. So please before u think off having u arm amputated talk to u pain specialist and see what he or she can do for u.

Best wishes Peter

littleeffie profile image
littleeffie in reply to

Hi Peter

It was the orthopaedics and physio that said stage 3.I even saw it written on the physio referral but obviously from your experience that's wrong.Mind you nothing would surprise me and that is why I am trying to get as much information as possible from the real experts like yourself who really know what it's like to experience it and what does and doesn't work.I am so sorry to hear you have it in more than one limb and haven't gained relief from amputation or stimulator.I asked if it can spread but was told a definite No but started having similar deep fat fryer feeling and spasms in other (right)hand but advised overuse compensation for left arm will cause that.? Does anything give you even a little help?

Thanks again replies are really appreciated


hello effie: glad you're here. you're managing an awful lot of seriously heavy duty issues. am v much feeling for you....well done keeping your funny bone in good shape: this is the main thing that keeps me going through my health saga!

over the years, there have been some good discussions about CRPS here...especially recently. am hoping others managing CRPS will give you helpful replies. recently here there were some especially illuminating discussions re the diff between various types/names of CRPS (RSD or whatever) ...my abiding impression is that the whole field of CRPS is in a kind of flux, with some Pain Consultants & Rheumatologists and even Orthopedic Surgeons trying to get a prominent place in the system's community as CRPS/RSD "specialists" or "experts".

e.g. initially it was my osteopath who suggested i had CRPS, while rheumatology was diagnosing simultaneous raynauds & erythromelalgia. then, thanks to my Pain Consultant telling my GP to refer me to rheumatology, what turned out to be my infant onset lupus was finally diagnosed by rheumatology & systemic treatment begun.

this systemic lupus treatment helped so much generally, that my Pain Consultant decided to try steroid injections in the forefoot where my long standing (min 8 years) so-called CRPS had been so disabling and excrutiatingly painful (i was dreaming about amputation at that point). when my Pain Consultant's injections only helped "so much" and perfectly competent local consultants in various disciplines had washed their hands of me (inc the chief of ortho surgery at the top international hospital i attend told me there was nothing they could do (he was only interested in giving me an MRI which ID'ed one part of the complex causing my so-called CRPS: mortons neruomas & burstitis & osteoporosis), my Pain Consultant referred me to a prof ortho surgeon on the other side of the country who figured out the FINAL piece in the complex of probs causing my so-called CRPS: infant onset lupus & sjogrens& ehlers danlos induced tendon tightening....and he started me on the arduous rehab (ongoing) that has given me back my mobility with substantial reduction in pain levels. only THEN did rheumatology tell me there is a consultant in their dept who specialises in CRPS.....so now i know i can see him too at the hospital I regularly attend for lupus etc & immunology...but i hesitate, because I'm managing my CRPS better now... & if i've learned one thing in the course of these years trying to sort out my so-called CRPS, it's that there is LOADS of disagreement amongst the experts who are no doubt trying to reach common ground on this subject...but are a long way off doing so (seems to me, anyway: and i'm no expert, haha)

will be following this discussion with interest...and first i'll be glad to read your reply to yogibe's question: are you under a Pain Consultant now? is that who has diagnosed CRPS? etc

wishing you all the vvvvv best

PS am probably older (62), but, like you, I have very complex chronic multisystem conditions diagnosed & in treatment...this has definitely made managing & minimising my several acute chronic pain issues much more complicated...but not impossible: after decades of constant severe spine pain, this has now virtually settled down thanks to concentrated help over many years from my hero Pain a Consultant, and more recently my hero rheumatologist's systemic lupus meds. So now I really really believe there is light at the end of those tunnels...keep your chin up😘

ADHD can be from a lack of sleep. Lack of sleep can interfere with muscular control which can lay the cause for the development of CRPS.

What does work and what does not work is impossible to answer. You have to observe and experiment for yourself. Many disease labels can have the same symptoms but have multiple causes.

Training in muscle condition and posture will help reduce the pain and discomfort. It is not a cure. You have to study your own body, nobody can do that for you. Techniques to develop the skill to explore your own body are meditation and mindfulness.

The book:


gives some very good instruction on posture, meditation and mindfulness. This is a free download which can be googled for.

Training Alexander Technique from Alexander teachers will give you an awareness of the influence of posture on pain and discomfort.

Hope this helps.

Hi and thanks for reply.

Having had to live positively with Ehlers Danlos hypermobilty since a child I agree and fully understand the need for postural awareness and the techniques for relaxation.These have helped with every extra illness added but the effects of CRPS/rsd are unrelenting.

I shall see what next appt brings and get fully clued up on what is on offer.

Not sure with reference to ADHD as this is one of the things my two youngest struggle with .


Sorry did not pay enough attention I missed the word children in your article.

Meditation and mindfulness will help with the CRPS/rsd as it will help you study it and develop the skills to tackle some of the issues. Read the book and you may see what i mean.

Meditation and mindfulness is not about relaxation. In fact relaxation can cause posture and muscle problems. The muscles become relaxed on the outside and the muscles becomes very tense on the inside as the muscular system tries to compensate for lack of strength. This is done at the spinal reflex level.

Pressure on nerve roots can cause the problem you have. And by reducing the pressure on the nerve roots the problem could diminish. This is chiropractor territory. Evidence of pressure on nerve roots caused by muscular activity will not always show up on an MRI scan or xray.

Worth looking at balance with respect to gravity. Get the balance right and the muscular activity changes. This can be exhausting as old habits need to be dropped and new ones developed.

Any questions and I will try to answer them as best I can.

Hi and thanks for reply

Due to previous adverse reactions can't be prescribed anti epileptics or antidepressants and already have morphine which doesn't touch this recent pain..

Looks like wait and see for new consultants ideas.

I'm close to being given IViG for various reasons. Now I understand it can be used to treat CRPS. here is a link:


At least gives you more knowledge before your consultation re CRPS treatment

Wishing you every possible ounce of good luck


Interesting link!

Do hope you get it and it really helps you .

Trying to make a concise list that contains as much information as possible before appointment.

Many thanks for ongoing support


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