CRPS spasms and pins and needles

Hi I have complex regional pain syndrome on my right hand/arm/shoulder. I was wondering if anyone with the same condition gets spasm attacks followed by pins and needles. I have suffered the spasms for many years and got pins and needles occasionally but.... the pins and needles seem to be lasting for much longer recently is this normal? Usually if I got pins and needles in my foot I'd take my sock off and put it on a cold floor but I cant do that with my hand because cold makes my pain through the roof and I have very limited movement so I cant wiggle the fingers to try and get rid.

[ClumberSpaniel]

Hi Leanne! I’m Nick. Interesting to read you have CPRS in your arm/hand. I have it in my foot, and I sympathise with you, it’s f***ing painful!!! I can’t walk properly & have to use crutches, and sleeping is awful to none existent .

Did your CPRS develop after a different injury by chance?! The reason I ask is that I had a prolapsed disc in my spine which caused one thigh to go numb (which it still is as the disc is resting against the nerve on that side, but not impinging the nerve so even a private hospital have said it doesn’t warrant an operation), the other leg has changed from the whole thing being completely numb for a couple of days, to gradually regaining the feeling southwards like a sand timer sinking, but the feeling in my big toe & the next one never came back. This was replaced after roughly a week by a terrible pain in my calf, so I thought I had broken my fibula for a few days, then the horrendous burning in my foot started. It’s like my foot is coated in acid & someone is holding a blow torch under it. The pins & needles don’t feel normal, they are way more painful than that.

Do any of those symptoms sound familiar to you? And are you taking any medication that works?

Best regards,

Nick

[Hidden in reply to ClumberSpaniel]

Hi Nick, sorry for the very late reply I have been washed out with this illness. My CRPS didn't start with an injury. It just came out of nowhere. Its soul destroying. When I was pregnant with my son his father put me through hell they think with all the trauma has caused it but I don't know.

I am sorry to hear you are suffering this horrible disease also.

I get burning 24/7 its like someone has replaced my blood with lighter fluid and set it a light. I get severe spasms and pins and needles. I have had spasms and pins and needles in the past but nothing like this it feels so different like more intense and takes ages for both to calm again.

They have me on nortripyline, tapentadol the slow release and I also get fast release for when I flare up but they make me so ill.

I sweat constantly with pain its highly embarrassing.

I have a new pain specialist to see on Friday so I am hoping a fresh set of eyes and maybe someone with some sort of knowledge on this disease will be able to help more as the pain specialist I have now told me for 15yrs this was all in my head.

We as crps sufferers are suppose to get physio to keep our limbs moving but I have been repeatedly refused and been going private for many many years. No-one believed me until my hand started going deformed.

They told me if I had been diagnosed at the start then there could have been a good chance to reverse this but because I was neglected for 15yrs i am now told to get on with it. No support no help just chucked all this medication that makes me feel like shit, the meds I am on do take the edge off the pain but they make me really sick, zombie'd.

I am sorry I have no positives for you 😔 this disease really is a hard one as it is so very poorly understood even by the highest of professionals.

Wishing you all the best 💞

Leanne

[ClumberSpaniel in reply to Hidden]

Hi Leanne,

Sorry to read that your child’s father put you through hell during your pregnancy! What a heartless & despicable way tl great a pregnant lady!

The national Complex Regional Pain Centre clinic is at the RUH in Bath. There’s everything from learning tips to adapting, hydrotherapy, physiotherapy (one on one) and occupational therapist (also one to one).

There’s also a very salient topic of learning about pain, painkillers & what we can do about them. I.E Amitriptyline is stronger than Noritriptyline, Gabapentin/Pregabalin leave you wasted to start with, but don’t do anything for the pain. Duloxetine is also rubbish (but good for picking up moods). Eventually you will hopefully be offered the same as me: Buprenorphine patches which stay on for a week, and Oramorph for the breakthrough pain.

Best of luck 👍

[isricci111]

Hi! My diagnosis was Trigeminal Neuralgia but I know lots of people with CRPS (who are now pain free). I put together a guide with everything I did. Hang in there!!! I'm now pain free and have been for months.

docs.google.com/document/d/...

[Hidden in reply to isricci111]

Hi isricci111, Thank-you so much for this link I will read through this today. Now my hands are working. Sorry for the very late reply I haven't been the best the last 6weeks. Pain free would be amazing its been 18/19 long long years. Best wishes

Leanne