Does anyone have experience with managing severe pain in their fingers due to vasculitis and Reynaud's phenomenon? My partner has recently been diagnosed with vasculitis which has caused ulceration in his finger tips and with it severe pain. He uses oxynorm, paracetamol and lyrica to control the pain but often even all of these together still don't work. Any kind of exercise (even just getting up in the morning) triggers a pain attack.
Has anyone any similar experiences and how do you manage them?
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rdavis
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Hi, hopefully someone wil come along with specific details about managing the pain your partner is experiencing. In the meantime, this document on the V-UK website has lots of good information about dealing with chronic pain generally. vasculitis.org.uk/living-wi...
Thanks a million Patricia Ann - it has been hard to find some good information. I'll definitely follow up with the weblink.
Ruth
Strangely I have Reynaud's-like appearance on my fingers but believed caused by my vasculitis which in turn may have damaged my back. The traditional treatments and aids such as wearing gloves, vigorous exercise (yeah right) and minimising stress and practicing relaxation techniques (I use mindfulness meditation daily) don't seem to work for me as far as the apparent symptoms are concerned and I'm currently on 100 mg of Gabapentin twice daily but it's not helping. A more traditional drug is Nifedipine but I've no experience of it. Healthy wishes.
Hi Martin_Thomas - thanks so much for replying to me. My partner can't wear the gloves as his finger tips are ulcerated and incredibly painful so he can't actually bear to put his fingers into the gloves - he can't even get his hand past the cuff of the glove.
Exercise (seriously not vigourous) aggravates the pain hugely - I think it is because it increases the demand for blood circulation and therefore, emphasises the absence of it in his fingers. I'm interested in him trying yoga but he hasn't done so yet and we've tried acupuncture but it's not obvious that it helped at all (apparently use of the steriods interferes with its effects).
He uses hot water bottles and hand warmers (like the climbers use).
He's also on Lyrica (I think that this is gabapentin) but I'd have to check the level and I've not come across Nifedipine so far. I'll look it up.
Have you ever discussed a sympathetomy with your doctors? This is a possible treatment route but I'm not sure how successful it is and it's irreversible so it's a big step to take if we were to consider it.
I'm sorry to hear of the awful suffering your partner is experiencing. I didn't mean to suggest gloves would be the answer (few people I know have any success anyway) and Lyrcia is indeed Gabapentin. I suspect this may be secondary Reynaud's which is driven by an underlying cause (low-level vasculitis?) and it's this which needs investigating/treating.
Mindfulness meditation (preferably taught via an 8 week course - often free) helped me, not in eliminating the symptoms or pain but it has certainly benefited me in dealing with it.
Personally, any surgical procedure would be way down the list and it's important to be aware that surgical activities cause inflammatory processes and can in fact drive the disease (a phenomenon noted by some clinicians at Addenbrookes).
What type of vasculitis has your partner been diagnosed with if you don't mind me asking?
Yes, it's all a bit of a dose. My partner has been diagnosed with a mixture of EGPA and PAN - He has markers of EGPA (eosinophils) but not all of the physical symptoms and seems to have more of the physical symptoms of PAN (much of the damage done has been to his peripheral vascular system and nerves). Thankfully, though it was caught relatively quickly and he has no core organ damage that we are aware of.
I think his vasculitis is not yet fully under control (he was diagnosed in May/June this year) and I think that the symptoms have flared a bit during the step down procedure to reduce the steroids and the change over from the Cyclophosphomide treatment.
I keep thinking patience and it will eventually start to come right but occasionally (and particularly when the pain is really bad), it's hard to stay on an even keel.
your point about the surgical procedure is well made and I will certainly keep this in mind. Also the coping techniques - my partner wouldn't be used to using these in the past but is now quite open to trying them.
Thank you again for the time you have taken to respond - it's very much appreciated.
It's nice to know that there is a forum to discuss with this complicated disease. To be honest, I have found that you end up dealing with many different specialists and it's very difficult to get them considering the overall picture together.
Anyhow - onwards and upwards and hopefully, time will eventually help us get this under some control. I live in hope
Ruth
Hi Ruth
Thanks for the insight into your partner's AAV which is clearly yet another case with a very enigmatic nature.
From conversations with David Jayne at Addenbrookes and others, there are a significant number of 'us' who typically have limited disease (e.g. no kidney involvement) and don't present with particularly severe symptoms at the outset (they seem severe to us I hasten to add!). 40% of patients with limited AAV don't even test ANCA positive which clearly doesn't help either. The suggestion is that people who are treated aggressively (almost kill or cure) get into remission relatively easily and stay that way but the rest of 'us' do okay for a while than fall out of remission with episodes which are immeasurable yet clearly affecting us. The truth is, no-one really has the answers but there are some decent 'best guessers' out there and sometimes you have to go and seek them out as it's a certainty that no-one else will.
It's my view that this grumbling disease is the chronic condition which is most difficult to treat, especially as it doesn't often respond to previously successful drug regimes. In my own particular case, I suspect I may have developed antibodies to Rituximab (about 1% do in patients who use the drug for other auto immune conditions but why or what to do about it is pretty much a mystery) but I still think it's a drug that should be a front-line Gold Standard treatment instead of cyclophosphamide. Without it, I undoubtedly wouldn't be here.
I'm sorry if the above isn't very helpful in a practical sense but I do suggest staying open minded to the bigger picture and the alternatives, based on the experience of like-minded others. Doctor very often doesn't 'know best' and for me, taking responsibility for myself and my condition is the most positive I can do but it sure is hard, especially alone.
Staying positive and having hope aren't easy to maintain and I've come to the conclusion that some days, it's okay to slip and be less strong. I think you're both doing amazingly well and please don't forget to concentrate on how well you have coped and how much you have achieved. Well done!
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