Complex regional pain syndrome

[HairyMaclary]

Has anyone got any experience of Complex regional pain syndrome?

My son, age 17, had a major operation in December and now appears to be suffering from complex regional pain syndrome. We are being referred to a pain specialist who we should be seeing within the next two weeks but what is online about this syndrome is not positive and I’m wondering if anyone has any further information that I could look at.

Just bumping…

Final bump for the evening crowd. Has anyone got any experience of this? Especially in an older teenager.

I have it myself, I'm in my forties though. I really feel for him. Obviously I can't help with the specifics of your son's case, but for me, pain management therapy really massively helped (and I thought it would be a total waste of time).

I wish there was some practical advice I could give, but I think everyone with CRPS is so different because of the original cause, their age, and where the pain is. All I can say is that it really can improve through proper pain management which will be a mixture of therapy, appropriate careful exercise and potentially medication although I am no longer on medication.

Also - visit this link. It's excellent, has some reassuring messaging, is quite teenager friendly I think, and has lots of resources. www.flippinpain.co.uk/formula/

Get him to use his arm despite the pain the worst thing you can do is immobilise it.

Thank you but it’s his feet which makes it much harder. He can barely walk a few steps. The operation was meant to help an underlying mobility issue but the pain means he’s much worse and in a wheelchair almost full time now.

A friend has it. At her worst she was in a really bad way - regular collapses, walking with a stick (in her 30s), etc. she discovered tapping therapy which helped enormously. Also a long ago hidden trauma was exposed and once that was out in the open she got better. She's now doing brilliantly to the extent that she runs marathons!

@ClaireandTed thank you, what medication were you on? We have been told it’s likely be be a nerve specific pain killer and potentially anti depressants. (His mental health is taken a nose dive).

I’m pleased to hear you’ve had some improvements.

A friend daughter has this and had a two week inpatient stay at a hospital in bath that offered rehabilitation and exercises to help retrain the brain into rerouting the pain messages to the brain.
The daughter still has it, but her quality of life is much improved.
Also look at Low Dose Naltrexone as a potential treatment.

www.ldnresearchtrust.org.

Duloxetine is one drug that works well for both pain and is an anti-depressant.

The pain is real and debilitating but he needs to move his feet/walk etc. Please push push for a specialist referral and in patient treatment. The longer it continues the harder recovery will be.

Neurological pain is considered the most painful.

I was on Gabapentin, it made me put on weight and to be honest didn't seem to help much.

For me, the knowledge that pain didn't necessarily mean I was making the original injury worse, helped my mindset so much. Plus the therapy helped me cope with the anxiety and depression caused by the pain which then alleviated the pain. It's a vicious cycle.

Things are so much better now. My pain is in my shoulder and arm, for ages I couldn't even use a fork or put socks on but now I can lift heavy bags. I see an osteopath regularly who really helps.

Totally agree with the need to try to use his feet. I was able to start re-using my arm carefully once I was more confident that the pain didn't mean I was making the injury worse. Pacing is important - keep a diary of activity levels and how your son felt afterwards then try to find a balance where he doesn't over do it but doesn't do nothing.

I have CRPS (for nearly 12 years now), and as others have said the more he uses, touches, and tries to be as normal as possible with his feet, the better things will be. Bath have a residential CRPS treatment programme which is very effective, but you really have to engage with it - the more that you remember that the pain is a damaged feedback loop and so that is what needs treating, not a source of pain to be treated with painkillers (though they can help initially to get through doing the physio).
Swimming is a great activity as it integrates the sensation and improves blood flow

I have CRPS and had a spinal cord stimulator. It has helped a bit but the pain flare ups are so severe and nothing helps. I’ve been told that there is no medication to help these severe pain symptoms (burning, stabbing). I’m taking pregabalin regularly at a high dose but I can’t believe there’s nothing to help the flare ups. I’ve also now been told that I’ve likely got Trigeminal Neuralgia which is a horrific prospect. I remember my grandmother had it and really suffered. It’s all so debilitating and affects my ability to care for my disabled children. My thoughts are with you all who suffer from CRPS. 💐