Muscle cramps

[kingsnorth43]

I have lupus sjogrens and PBC. I have been getting pins needles and bad muscle spasms and twitching. I was really worried l may have MS lve been to see a neurologist and had MRIs and no signs of MS thankfully. Ive had lupus and sjogrens for around 14 years and these symptoms are new to me. Rheumy tested me for fibro and said l didnt have it. Blood tests for lupus dont show any activity. The muscles in my legs are still stiff and my feet burn and throb of a night. Any ideas please?

[Hidden]

Well I have this problem too - only mine started 7 years ago and now the burning pain is mainly twitching, tingling and numbness. Mine is so far assumed to be small fibre neuropathy (SFN) relating to my Sjögren’s. I don’t have Lupus. This link might help.

hopkinssjogrens.org/disease...

[Bakbre]

Hi there

As Twitchtoes has already said this sounds like Small Fibre Neuropathy. I too suffer from the same kind of burning, tingling, pins & needles etc in my legs and also like you my feet burn and throb but when I asked my consultant what she thought it could be she said probably some kind of nerve pain, but as I had already been tested by the doctor in the Neurothapy Department and nothing had been found, there was nothing she could prescribe which would work but "I could try taking Vitamin B Complex which might help". That was all I got last time around from her but I have another appointment in September & I am going to discuss it with her again and this time I will not take no for an answer! Luckily I have quite a good GP and he prescribed me some Pregabalin 100mg capsules and they have at least taken some of the painful symptoms away, not all but enough that I can cope. Maybe you could ask your GP? If not, like me take it up with your Consultant and don't give in!

I have Undifferentiated Connective Tissue Disease and Rheumatoid Arthritis. I had my first Rituximab infusions in December and it seems to have worked with all my other symptoms (touch wood!) and I feel well for the first time in a long time. But this problem has now got much worse and it is really getting me down. That and the fact that the burning/tingling sensations in my legs are really painful.

For the time being go see your GP and ask for help. I hope you feel better soon. Let me know how you get on.

Trish

[GERY]

Hi. I too have had muscle for years just in my left thigh it also twitches & sometimes really jumps. This only occurs in at night in bed it wakes me up so I just put muscle pain cream on which helps - perhaps you could try cream. I hope you get the help you need

[kingsnorth43]

Thanks for your replies. I will carry on taking gabapentin which gp prescribed it does help a bit but it makes my skin feel like its crawling. The muscle pain and cramps are pretty bad. I have been lucky as far as lupus and sjogrens are concerned l have still managed the gym 3 times a week but this new set of symptoms has floored me at 67 l should be enjoying my retirement and my grandchildren but this time the pain is beating me.

[Bakbre in reply to kingsnorth43]

So sorry you are feeling low and in pain. I am 67 also and should, like you be enjoying my retirement but sometimes it does get too much. I was lucky having been diagnosed with UCTD in 2004 I went into remission more or less straight away and apart from a few muscle pains I was great for 11 years. So when 3 years ago I was also diagnosed with RA & everything started hurting and I was in a great deal of pain. It has taken 2 years for me to feel better. I was given many different tablets, too numerous to mention which didn't work and then I was given Rituximab which has worked, in fact I have felt so much better in the last 6 months. But then I got SFN which is driving me mad. Like you I was prescribed Gabapentin but I couldn't stomach them so was then given Pregabalin. They take the edge off and althought they don't take it away, they do help. Maybe you could try them.

I do hope you feel better soon and start enjoying life again, as we all should be entitled to do. Keep fighting!

Trish