Should I worry, because I am!!! Nerve pain!

[Mags88]

Hi everyone. I have vascular peripheral neuropathy. I lost the feeling in my left hand and leg last year. It started with carpal tunnel like symptoms and then excruciating pain in my leg one night. So this week the same carpal tunnel pain has started in my right hand. Iv been to see my GP and she has tried to get in contact with my neurologist but had no luck (great hu). My hand has been painful today were iv had to take a moment to compose myself. Iv just got into bed and both legs are pounding. If the pain gets bad what do I do? Do I take myself to a&e or try hold off until the morning and go to the GP or try to get in contact with my rheumatologist?

Thanks in advance xxx

[Wellsie]

Take yourself to A&E. They will be able to administer suitable pain relief, consult with Neurology, and order any NVC and EMG tests that Neuro might require in the result of these new symptoms.

I've been through similar, so don't hesitate....

[Mags88]

Thanks wellsie. I actually had a good night sleep thankfully and felt quiet good all day but iv had an extremely busy day at work and im completely done in. I ache all over and bad head so im going for an early night and dont think I will make it into work tomorrow. Everyone tells me to listen to my body so that's what im going to do. X

[Mags88]

Also very worried about a&e as we are so close to xmas and I spent the whole of last xmas in bed very poorly with a bad kidney infection. I have a 3 year old. I dont know what id do if they admitted me. X

[Wellsie]

Mags, vasculitis is not something to mess with, and if it becomes worse again, or you suffer any other symptoms and can't get in to see your GP, then going to A&E is the only option, BECAUSE you have a 3 year old to think of!

My PAN actually took out the ulnar nerve in my right arm in <24 hours, from fully functional to entirely numb with no motor movement and a full conduction block. 2.5 years later years, I have nerve issues in 8 of the 12 peripheral nerves. Remember it's hard to do anything with children when you lose the dexterity of your predominant hand, as I can remember only too well.

[Mags88]

Thanks wellsie. Oh I know this to well now! Believe me I find it hard just from loss of feeling and some movement in my left hand. Even doing my daughters buttons up I get frustrated. How can they stop it if im already on cyclophosphamide? When I had my last infusion I told my neurologist I had started getting niggling nerve pain on my right hand and wrist and he said "I know its hard but your on the strongest treatment for it" so basically grim and bear I suppose. Im going to attempt to contact my neurologist or rheumatologist today and see if there is anything further they can do. The gabapentin has helped with the pain BUT I feel that just masks the sypotoms when something could be going wrong again, if that makes sense x

[luggsey]

Agree with the comments above, my advice is to learn as much as possible about your condition and ask lots of questions. My Mum's consultant tells her to go right to a and e when she is unwell (out of the ordinary unwell) because there is too much delay going through the gp route. Just gone through this yesterday with an all day medical assessment visit to check out some problems.

[Littledot3]

I was diagnosed with Takayasu’s Artertis affecting my aorta and pulmonary arteries 6 months ago.

I started prednisolone and methotrexate and although things have improved, there is still new inflammation and so I’m starting on infliximab on Monday. Before treatment I suffered with cold hands but the last few months, I have been getting tingling and numbness in my hands and fingers most nights. It seems to be more when I’m in bed and lying down so thinking it must be to do with the TA and circulation? I also occasionally get numbness in my feet and toes. It passes after I shake my feet or hands about but has been worrying me since I have read on here about nerve damage. It is not pain as such, more tingling and numbness. Does anyone else suffer with this?

Thanks

[BronteM in reply to Littledot3]

Hi, I've also got TAK and had very similar problems until I started on rituximab. Cold hands and white fingers during the day and numb arms at night that only came back to life when I leant over the edge of the bed and shook them. It woke me several times a night. Cramps in the legs too - I'm refusing to take statins because they are bad enough already. I think it's because the arteries in our arms are blocked, rather than damaged nerves.

[sarcon2311 in reply to Littledot3]

hi im new to this ! but I have TAK and I always seem to have tingling in hands and arms especially. I ignore it a lot but maybe I should look into it. I am on a maintenance dose of steroid and azathioprine along with bp meds. Rheumatologist says v little. maybe to do with painkillers?

[BronteM in reply to sarcon2311]

Can honestly say that I haven't found any painkillers that work. The range we can use is pretty restricted anyway, but even when co-codamol was helping my back pain it made no difference to my arm pains. I've been told that the arm pain is caused by lack of oxygen to the muscles, so that makes sense. My BP medication has made the arm pain worse too...my GP explains it as a basic plumbing problem. Less blood pressure means less blood getting through the arteries, so a balance needs to be found. Can't win, can we!?

[Wellsie]

Mags; they can still increase your steroid dose if inflammation is the issue. And increase (or add) the dreaded methyl prednisolone to your cyclo infusion cycle, or even give you an emergency infusion in neurology if they need to.

Don't think you've reached the end of the line for treatment or pain relief either. I ended up on morphine patches (and I have a decent pain threshold), and they can also prescribe other drugs such as tramadol to provide breakthrough pain relief whilst more traditional methods such diclofenac, ibuprofen, amirtriptyline and gabapentin do their business.

Remember your GP won't know this, and it's unlikely A&E will. Of course every patient has treatments linked to their own condition and circumstance, but as I can empathise I thought I'd share the process I've been through personally so you know there are still place you can go to...

[Mags88]

Thanks everyone. My neurologist has been in contact with my GP today which is good. Prednisone back up to 60mg and I will see my neurologist on the 2nd jan but gp said if im still struggling after putting steriods up and with the pain meds then to see her again straight away. My GP was brilliant today, she said she has had a long conversation with neurologist and she is trying to do her best for me. It's not excruciating pain in my hands but it just really bothers me. X