Neuropathy - can anyone answer some Qs please?

[candycoatedwaterdrops]

I've had Rheumatoid Arthritis for 5 years. It's stubborn and aggressive and doesn't respond well to treatment.

Over the last 6 months or so, I've had increasingly uncomfortable symptoms in my feet and legs;

• Random patches of numbness in legs
• Random feelings that someone is pressing ice against my legs
• Numbness and tingling that starts in feet and shoots up into calves
• Persistently icy feet even though I am the hottest person ever
• Thigh/hip/back is the major one, scans have shown nothing and I can barely walk. It's tingly, numb, feels heavy like my thigh bone is made out of lead.

The latter has led my rheumatologist to believe I have some kind of neuropathy and suggested pregablin or gabapentin. Apparently it is not uncommon with RA and should settle when my RA does. That said, the last 6 months have been the best 6 months so far, so it does seem strange.

Is this normal to be diagnosed like this? Can I stop it getting worse? Might it really just 'go away'? Dr Google is making me feel more confused.

Sorry, I don't know about RA, but I had very similar symptoms, plus shooting pains, in my arms and hands due to trapped nerve in my neck (possible link to psoriatic arthritis). Was very bad for about six months, but much, much, much improved with physiotherapy to mobilise my neck joints. I was on gabapentin for a while: it was AMAZING while I was able to take it, like somebody had found the switch that stopped the pain, but then it made me hallucinate so, obviously, I had to stop it Amitriptiline was a pretty good compromise for me.

Have you seen a physiotherapist? Have they checked your lower back, or particularly your legs? I think sometimes stiffness in some joints (and therefore reduced mobility) leads to stiffness in others, and if you can keep your spine relatively mobile, you might be able to avoid some of this kind of horrible effect.

candy area you on an anti tnf?I think neuropathy can be a side effect? , but surely rheum would have known that???

Thanks for replies.

I was on an anti TNF from August 2013 to February 2014 (stopped due to GI side effects). I did know neuropathy is a side effect but rheum didn't comment on that, is it temporary? I'm due to start ant TNF no. 2 this week.

Sand I am seeing a physio, I will mention it again on Tuesday, we are currently working on a gym programme.

I have been googling and can see that neuropathy is meant to stop when you cease anti TNF but the previous one is out of my system and I'm due to start another one on Thurs. Now having second thoughts.

Candy did you get any answers??

I'm having a neuro physio assessment on Monday and depending on what she thinks, I may be referred elsewhere for investigations.

hope you get some answers or at least reassurance

Hi, I've not got RA, but Fibromyalgia - and also B12 deficiency, which causes some of the symptoms you describe, so it's maybe worth you getting tested?

I've been on Gabapentin & Pregabalin. Gabapentin was miraculous to start with, but gradually faded away. It has side effects ranging from dizziness to death, but I didn't get any. I swapped to Pregabalin and it has really helped, though the side effects have been quite harsh - I've put on a stone & swell up so much! It also seems to have affected my circulation - I fluctuate wildly between red flushes and going blue with cold, but at the moment the positives are still outweighing the negatives and I'll stick with it.

I really hope you get some answers and help to ease your symptoms - I've also found that fluoxetine/ Prozac helps with neurological problems. It seems to speed up my reflexes (though doctors just smile-and-nod when I say that!)