Complex regional pain syndrome

[ClumsyCow]

Does anybody know anything about this? I dont want to google as i did a little yesterday and scared myself with the doom and gloom stories

Not sure how to link to my previous thread, but had carpal tunnel surgery 2 weeks ago and still in agony. Saw consultant yesterday who thinks i have developed this just fucking great in addition to my other many ailments

Still feeling upset and in pain, would be grateful for anyones experiences

Here, let me put the link for you www.mumsnet.com/Talk/general_health/3005630-Swollen-fingers-and-pain-after-carpal-tunnel-surgery-whats-normal

I have been following your previous thread, because I am due to have the surgery very soon.

What did the consultant say exactly? Did he refer you to someone? A neurologist? Are there test you can do to confirm the diagnosis?

thanks for the link, its difficult with left hand and on a tablet!

consultant recognised it straight away (even though unusual) when i described the pains and the appearance of hand, still swollen, mottled, dry skin. even my nails have stopped growing on that hand, though that was odd. . said it is good it is recognised early as early intervention means we should be able to get on top of it, i hope so. he is writing to GP with some drug recommendations and i had a call very early yesterday morning to arrange to see a hand therapist which is booked for Tuesday.

so trying not to google too much and to not dwell on it, doing my squeezing exercises every hour and taking painkillers still!

trust me to get something quite rare, stoopid body

Well, this is a tad terrifying, it is spreading up my arm, eeeeeek

Have a google about mirror therapy and CRPS. Could be helpful.

My friend had this and got some relief with tapping therapy.

Good job it has been spotted early and they are acting quickly. Some regions deal with this much better (i.e. more promptly) than others. The idea is to intervene and get things sorted before the aberrant pain pathways become fixed and create long-term problems.

Hope you make progress soon.

Before I had my carpal tunnel release, I was told that high dose vitamin C can be helpful. Not sure if it'll work at this point but it's worth a look into vit C and CRPS.

Sorry to hear you have this awful condition. My ED has had it since she was 12, and is now 20. Hers happened after twisting her ankle in hockey. She then hurt her other ankle so has it in both heels and cannot put any weight on them. She also has it in her hands and her ribs.
I would suggest you do as much desensitisation as you can. My dd tried but it hurt too much, and now a slight breeze is agony.
Sadly, @KingIrving there is no test for CRPS. They can do mri's and nerve function tests to see if thats causing the problem, but there is not one test to diagnose it. It would def make things easier if there wa, esp as so many medical professionals still don't think it exists, well, only in peoples heads
It might be to early, but if you get refered to Bath then do go. They are really helpful and got my dd from crawling to taking a few steps. She still relies on a wheelchair for anything outside of the house, and inside she has to hold to sofas etc to get about.
As Sunny says, high dose vit c can help stop it spreading if you injure yourself. I hope you manage to get on top of itvery soon.

thanks everyone for replies, some interesting info there. I am having moments of feeling very down, worrying about the future, I am worried about it spreading, its hard enough losing the use of my dominant hand, LITTLEMISS, sorry to hear about your ED, that must be very v difficult for you both, and heres me feeling feeling very sorry for myself! I keep resolving to just be positive but sometimes it is hard! I am going to have a glass of wine tonight and try to be "normal". I will miss a dose of painkillers if I can, wont take wine and pills!

painkiller-wise, I just have OTC co-codamol, rang GP to see about something stronger, but they wouldnt prescribe as there is no documentation through regarding CRPS, just just have to wait for that and I need to make an appointment.

Re: vitamin C, coincidentally, I was taking a 200mg daily supplement for a couple of weeks before the op, I will carry on with it, or maybe I should look into a higher dose? something to consider.

Hoping I can get something positive out of my appointment on Tuesday!

I don't think the vitamin c dose i am taking is very high, at 200mg

I have just sent DH to shop get some 1000mg tablets.

She & I did a LOT of crying at the beginning, but with the help at Bath that doesn't happen much now. Maybe when shes had a bad flare.
You need to get your gp to prescribe you painkillers. Anti depressants help by toning down the pain a bit, and help you sleep. My dd is on paracetamol, tramadol and was on melatonin sleeping pills (but the gp won't prescribe them as her consultant did. Not sure why this is an issue).
Keep on at your gp, and get them to refer you to your local hospital pain clinic. We are doing that now as she has fallen through the loop due to moving away to uni etc. This is mainly as she will have her PIP reassessment next year and she needs some up to date medical documents.
Hope this helps; having a positive frame of mind will help. Also, look up spoon theory. A good way of explaining to others and to help you pace yourself. Message me if you need any other advice.