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Chronic Regional Pain Syndrome

(10 Posts)
moosemama Tue 16-Oct-12 18:05:54

Does anyone here have it or know anything about it?

I have just been told today that I have developed this following a foot injury.

moosemama Wed 17-Oct-12 13:49:24

bump?

moosemama Wed 17-Oct-12 13:50:03

Just realised I put the word chronic, instead of complex in my title - doh!

CMOTDibbler Wed 17-Oct-12 14:53:51

I've got it, and it sucks. What treatment are you having ? Early physio is your best bet on getting it to bog off or at least behave

moosemama Wed 17-Oct-12 15:07:44

Hello, thank you for replying. I was starting to think it was just me.

I have had to go private so far, as I was being bounced between GP and A&E while they looked for an injury that no longer exists. Last appointment GP referred me to NHS phyiso but told me it would be at best weeks and probably a couple of months until I'm seen.

I am 10 weeks post ankle sprain and currently in constant agony with my foot, ankle and now lower leg swelling and going burning hot or draining of blood, black toes and becoming freezing cold. My foot has clawed up and I can't walk on it at all.

I could have kissed the physio when she came to assess me, as she knew straight away what it was and I had googled, suspected, but knew from previous experience that no-one was likely to listen.

She has given me some very basic exercises to do with both feet. I am not to weight bear yet, as the muscle structure in my lower leg and foot have completely given up and I have hypermobile feet and low tone anyway, which has exacerbated this. She has told me to try and get back into my MBTs so that my foot can be both compressed and held in the right anatomical position and also so I can start trying to do a normal walking motion, but without weight-bearing.

She is going to get me started with mirrorbox exercises when we have worked on getting the foot to relax and take up a normal position.

I am currently on co-codamol, which doesn't touch it and have been given naproxen, but can't take it due to previous stomach problems.

Physio said if PT doesn't help I need to go to GP and discuss other medication. She mentioned Gabapentin and Amitryptaline (sp?).

Physio also works for the NHS treating CRPS and said it would have taken months to get diagnosed, let alone start proper treatment via normal NHS pathways.

At present she said she expects it to be at least 10 weeks of therapy initially to try and get me up and walking without crutches again.

I also have an undiagnosed neurological condition, for which I have had the last year ruling out MS. I have multiple white matter brain lesions, but lumbar puncture and evoked potentials in January came back negative for MS. On top of that I am hypermobile and fit the criteria for EDS hypermobility type, but have never pursued a diagnosis. Phsyio said she felt both conditions have contributed to predisposing me to CRPS.

Have to hobble to the school now. Will come back later.

Thanks again for replying.

CMOTDibbler Wed 17-Oct-12 15:16:47

Did she talk about desensitisation ? That is one of the most important things to train your brain back to 'feeling' things normally.

Agnesinroom25 Wed 17-Oct-12 15:18:56

My dp has it in his hand. He was diagnosed in July this year.
Can't really chat now as schol run time but will mark place and come back later.
CMOT is lovely to talk to about it btw.

Agnesinroom25 Wed 17-Oct-12 15:23:40

Have to say NHS have been amazing with him so far. Fast physio appt and his consultant is really nice. He is seeing someone tomorrow to discuss acupuncture and other ways to help.
Drugs he has taken are tramadol, acupain and lyrica. He has been on the lyrica since Friday and today said he feels normal and well, he could just be having a good day though.
It really is awful though I wish I could help him more.

CMOTDibbler Wed 17-Oct-12 15:43:28

Acupuncture was amazing for me Agnes - when nothing else helped, I got a lot of relief from it.

CRPS is awful, but it is manageable, and you have to approach it with that attitude, and be prepared to take more pain in the short term doing the physio and exercises diligently (at one point I was doing 4-5 hours of physio and desensitisation a day) to stop it getting entrenched.

moosemama Wed 17-Oct-12 17:04:59

Right, am back. Sorry, very distressed ds1 to deal with after school.

Yes, she is also a fully qualified acupuncturist and explained that she has used it successfully several times in the past, but that she works on the opposite limb to tune down and desensitise the affected one. She also explained that the mirrorbox work helps to retrain the brain and I have watched some online videos about it today as well.

Agnes, I wish I had your dh's doctors. I have an open note from the physio, but am not sure whether to go back to GP or wait for the NHS physio appointment and take it from there.

It must be awful having it your hand, as it must affect absolutely everything you do.

I was fine about it yesterday, up for the battle, prepared to go through pain in the short term while we get it under control etc, but today and in a lot of pain after yesterday's physio I got very down about it all, particularly when I was having to concentrate really hard to try and put my foot down normally instead of allowing it to claw. I have been wearing my MBTs all day today, but am still a long way from being able to lace up my left foot. I definitely think it's helped a bit though, as although it hurts, it feels more normal and after a whole day in them my foot feels more normal, despite the pain - if that makes sense. I'm wondering if that's something to do with my brain recognising the feeling of wearing my MBTs?

One of the doctors on one of the videos I watched today said you may need to do 1-2 hours of mirrorbox work a day for an extended period of time to see good results, which is a bit daunting.

At the moment I am just doing knee bends with my heels propped, bottle rolling, non-weight-bearing foot raises and some exercises involving moving my toes and inverting and everting my foot.

I have to say, the work she did yesterday was impressive. She did some trigger point stuff and manipulation on the sole of my foot (that really hurt) and after the 45 minute session my foot had relaxed a lot and looked more normal than it had in weeks. The clawing/cramping is pushing my midfoot bones out of alignment and they actually clicked back into place audibly while she was working on it.

I think I am very lucky to have happened across her, as she seems really knowledgeable and experienced with this particular condition, which is a complete fluke, as I when I called the practice initially I just wanted a second opinion on whether there was any ligament or tendon damage and what to do about it if there was.

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