Chronic Regional Pain Syndrome

[Saffy1999]

I got diagnosed with this after a crush injury to my right hand in 2017. They initially thought it was 'compartment syndrome' so I was admitted as an emergency case and spent nearly 3 weeks in the Hospital having numerous tests; x ray, CT Scan, MRI, Nerve Conduction Studies, Physio ... but still the pain continued ... the swelling went down, but my hand remained (and still remains) feeling as though it is going to burst like a sausage in a pan

Does anyone else have this? It is supposedly rare and I am just looking for support groups really.

Am managing to keep my hand moving but sometimes I wake and it is in a claw and sometimes it shakes to much I would be the perfect accessory to a cocktail machine.

[Wibbli]

I used to work at the Mineral Hospital in Bath (RNHRD) and CRPS was my domain! It's amazing how little is known about CRPS - even nurses I work with now have often times never heard of it. Please contact the RNHRD (Upper Borough Walls, Bath). They are experts in CRPS and they can offer therapy / advice.

[Wibbli]

I should say, a lot of times, it had to be funded by your council but it is definitely worth a shot. I worked there circa 2011, when there was a rumour of a merger between RNHRD and ?Bath / Bristol hospital. We would offer intensive therapies (massaging the effected limb / psychotherapy / physio etc). There does run a risk that the CRPS can actually spread to other limbs, and often times a patient would want an amputation of the affected limb, but then of course they are susceptible to phantom pains which, in some instances, is just as bad as the CRPS itself.

[Wibbli]

Sorry for multiple messages, but look up Prof. Candy McCabe - she is an angel and knows everything there is to know about CRPS. If you google her, you will find her number etc. Good luck!

[ItsRainingPens]

A friend had this years ago and overcame it with calcium injections and aggressive physiotherapy - not in the UK though. I'm not sure what you'd be entitled to on the NHS

[CMOTDibbler]

@Saffy1999 I have CRPS, following life changing injury to my hand and arm 12 years ago. Are you getting/ have had physio input?
In case you haven't been told, CRPS is a brain issue where the normal signals are being interpreted as pain, so everything you can do to tell your brain that things are OK, the better - lots of touching it and then your good side, swimming (the whole body sensation is very good, plus it encourages blood flow), mirror box work (you need a physio for this), and matched movement

[Yorkshiredolls]

www.burningnightscrps.org

have you heard of or considered spinal cord stimulation? It is a more invasive option than injections and doesn’t always work but can have dramatic effects on the pain aspect of CRPS. Many GPs don’t know what it entails/consider it. Referral is by GP to Specialist pain centre, there are several in the UK

[rose69]

My partner has it A pain management course is good as can review your meds, help with psychological support as well as possible possible spinal cord stimulator.

[Uninterestedfamily]

I had it in my hand/arm following a fractured wrist. I am now OK after a very intensive physio and Occupational Therapy programme for 9 months, seeing them 3x a week. I found the OTs much more effective and better informed than the physios, so try to get referred to them as well.

Do not do hot/cold water treatment, studies have shown this can make it worse, but physios seem to love it.

I know it's so painful but do the exercises as much as possible. It's key to recovery and even if you don't get remission, it's better to have a painful mobile limb than a painful immobile one.

Work on desensitisation. Again, painful, but it really does help. Rub your hand on a soft towel, play with a bowl of uncooked rice, touch different textures.