Anyone with complex regional pain syndrome?
CovidCorvid · 21/06/2021 18:16
My physio is certain I have it and after reading up about it I'm a text book case.
Had an ankle injury a few years ago followed by surgery in March. Pain in my ankle has been chronic for years but dramatically worse since the surgery.
I can't bare anything touching it. Scream if the duvet rests on it at the wrong angle, can't sit cross legged as I can't stand the outside of the ankle touching the floor, can't wear ankle boots, can't touch my ankle with my fingers unless I have a sock over my hand. Non stop burning, throbbing sensation in my lower leg, worse in my ankle.
Google gives some depressing results with talk of years of worsening pain.
CMOTDibbler · 23/06/2021 10:57
Yes, I have CRPS. Is your physio working with you to treat it? Because the only way forward is retraining your brain to not interpret the signals as pain, and it takes hard work to do that. And that involves touching the hypersensitive area as much as possible, focussing on how the good bits feel and keeping that in your mind as you move to the affected bit, using different textures, and getting as much blood flow as possible by exercising. Swimming is great as you get the integrated sensory input too.
I was lucky that my physio recognised it straight after my (major) injury and was able to start the treatment, but its never gone. But with a lot of work it has never spread and is vastly better than at its worst.
I won't lie, the physio was torture, but understanding that it is your brain caught in a bad feedback loop and that the pain isn't about anything structural, or that you can make worse by provoking it - rather that the more you don't touch it the more the looping is increased helped me a lot. Acupuncture has also helped me
CovidCorvid · 23/06/2021 13:40
Yes physio is treating it and working on sensory stuff, he also did some acupuncture this week. I will have to try swimming or even just pool walking. I haven't been in the pool for months because the water moving over my ankle feels horrible and then the next day my ankle feels worse. But at least I know now if I persevere it might improve. Physio said it may get worse short term before it gets better. You're right I need to get out of the mindset of any pain might make it worse as that does make me avoid doing stuff. I'm sorry you have it too, it's horrible.
CMOTDibbler · 23/06/2021 14:23
Its great the physio has started, and as I'm sure they've told you, the more you do the sensory stuff the better. I have the mindset now of the less I like the feeling of something, the more I have to do it.
I have structural pain and disability as well, but CRPS is a crap condition, and tbh I don't think the online support groups are very helpful
OneNightTimeMenaceStrikesBack · 05/08/2021 20:14
i have it, sadly its in my whole body now. It started with a broken left wrist then spread up up left arm and into my shoulder and neck, after that it mirrored into my right arm and shoulder and then spread down my back and into my legs. every day is agony but i get by the best i can :)
Becca1305 · 06/08/2022 20:02
Hi sorry to jump on rhis really late my daughter is nearly 18 and we have been fighting to get a diagnosis of CRPS for nearly 10 years now and we are still fighting. She has had scans, xrays, physio counntless medication.
We are hoping to be referred to Bath on Monday (we live in kent) but im at a loss and trying to find info or just other parents that are fighting the same fight.
Thanks for reading
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