Can anybody help with the below question. - LUPUS UK

LUPUS UK

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Can anybody help with the below question.

Loopy-loo profile image
11 Replies

.

Does anybody with Lupus suffer with this problem.Consultants thought it might be secondary Raynauds,but this has be discounted.Have had conduction test but the nerves seemed to be okay.I start methotrexate today so I am hoping this will help.I suffer frm Lupus,Fibromyalgia and Rheumatoid Arthritus. Hoping someone can give advise.

Maureen.

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Loopy-loo
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11 Replies
Loopy-loo profile image
Loopy-loo

I meant to say throbbing and burning fingertips which is so painful I am unable to sleep at the moment. I have had these symptoms for nearly 2 years ( along with everything else that this illness throws at you)Thanks ,Maureen.

I have had this intermittently - but not constantly, and never on all fingers, only some of them - usually thumbs and index fingers (also sometimes toes). Must be really horrid to have it all the time.

Grim. Well done for raising it with Doctors - I've never mentioned it, I never want to make a fuss when they are so busy and I always think they'll think I'm making it up.

To Loopy-loo:

Good that your nerve conduction test results were within normal range.

Another unexplained SLE phenomenon.

Possibles:

Peripheral Neuropathy (likely R/O with good nerve conduction test results)

Carpal Tunnel Syndrome (likely R/O with good nerve conduction test results)

Diabetes.

Lack of B12 or B6.

Overdose of B6.

Kidney involvement / Uremia.

Hypo-thyroid.

To MaggieS:

THE DOCTORS ARE THERE FOR YOU! Help them help you. Full disclosure is imperative for best quality of care. If you perceive it as real then it is real. Please do not doubt yourself.

Loopy-loo profile image
Loopy-loo

Thank`s Nouska, for replying.I do have 6weekly b12 injections as I also suffer from Crohns disease. I will look up Hypo-Thyroid.although at the moment I feel completely shattered and thought that would make me feel full of energy ! Kidney involvement would I think show up on my blood tests that I have regularly due to taking sulfasalazine. I will also check b6 involvmen t Maureen

Loopy-loo profile image
Loopy-loo

Thanks Maggies.It is interesting that you also have suffered this problem.It does also affect my toes sometimes,although not as bad as my finger`s. I am hoping that the Methetrexate is going to help,if not I dont know where to go from here. Maureen

Take it one day at a time Loopy-loo. Unfortunately for some patients it is trial and error until the best treatment/tolerance/solution is found. The Methetrexate might just be the ticket. I hope it is.

Take care.

Barnclown profile image
Barnclown

Loopy loo boy do I feel for you. I hope the methotrexate helps, and that you & your drs get to the bottom of this soon

Maybe my experience could in some way be useful to you:

I have been trying to understand similar symptoms in my hands & feet for several years, getting worse with perimenopause/ menopause (but have had throbbing numbness, nerve firing, chilblains, raynauds type symptoms etc ever since I can remember). I've tried all sorts to manage this over the years inc anti inflammation diet & supplements. I think with a bit of success but still things got worse, maybe at slower rate than if I hadn't made such an effort...but drs all seemed only vaguely interested in helping

Last year freezing/ burning awful flares 24/7 things got so bad I had a wild time to keep feet & hands cool or warm (sticking all 4 out of bedding etc etc. and blood pooling & tissue bleeds also increased in all 4

In spring 2011 A rheumy started looking at raynauds & erythromelalgia (the raynauds & scleroderma assoc gives good info on both). He tried me on nifedipine which made ALL my symptoms in every aspect of my SLE MUCH worse. Then we discovered actually I'd had SLE diagnosed as an infant & teen. So whatever my feet & hands thing is, it's related to/involved with my SLE

So far the plaquenil my new rheumy put a year ago me on has helped a little bit with these hands/feet symptoms, but they continue to be a big prob. My nerve conduction tests are normal, but I understand these only cover major nerves. I'm now being looked at by the ortho dpt at my rheumy's hosp, but I suspect the vascular dep will be my next port of call. Meanwhile, although i'd not wish this on anyone, it helps A LOT to know I am not alone: there are others on this forum who have shared thoughts on what these sort of hands/feet probs could be about....and as Nouska points out: there are significant possible reasons for symptoms like ours and trial/error are inevitably how we find oir way through this....

So, I wish you all the best and I hope to hear more about how you get on

Loopy-loo profile image
Loopy-loo

Hi Barnclown,

Thanks for the info. Perhaps we can help each other on this problem. I am seeing the doctor tomorrow, so I will mention to him that perhaps a vascular consultant should be my next port of call. I will be in touch in as soon as I see how I tolerate Methatrexate,

Thanks, .Keep well. Maureen.

Barnclown profile image
Barnclown in reply to Loopy-loo

hope your dr appt goes well. yes, could be really good to keep in touch on this and maybe be able to help each other out as we go along. i'm v happy to do personal messages if you feel like it. am about to google methatrexate - will also check my erythromelalgia info to see if it there is anything about it being helpful. my impression is that all sorts of Rx is tried and success seems very individual - not that i am by any means sure how significant erythromelalgia is in my 'mix'. i'm basically not totally convinced by any of the theories given so far re my feet/hands stuff: my feeling is that my stuff is a relatively complex combination of issues (probably here/now is not the time to go into all of that!). and isn't complication something we all get used to?! take care and good luck

Thaddeus profile image
Thaddeus

Hello Loopy loo

I have suffered with a burning or numb feeling in my thumbs and forefingers for long periods over the years, this was caused by the nerves being pinched in my wrists and elbows. At its worst I lost all feeling in my right hand, which was a problem as I restore old cars, At one point I looked down to see blood dripping off the hand onto the floor - no idea what I had sliced it on!!!

The answer was to see a good physio who did some manipulation on my neck, and showed me some nerve stretching exercises. ( no really) The problem is now kept at bay.

Loopy-loo profile image
Loopy-loo in reply to Thaddeus

Thanks for that Thaddeus. I will keep your answer in mind. I am waiting for an appointment with a vascular consultant and will see how that goes.Have also started methatrexate so will see if that helps at all. maureen

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