kayjay Posted July 27, 2013 Report Posted July 27, 2013 I have had pain and burning in my hands and feet. My family can feel that the skin is actually warm. I've always had very cold hands and feet.Anyone else struggle with this? It's getting worse Quote
louloutinks Posted July 27, 2013 Report Posted July 27, 2013 Is it erythermyalgia? My niece is being checked out for this and crest syndrome and she has discolouration with burning, heat and pain in her hands and feet. Quote
kayjay Posted July 27, 2013 Author Report Posted July 27, 2013 Thanks for responding Tinks! I'm not sure what it is. I've always had really cold hands and feet. Now I have episodic burning that is painful enough to wake me up. Quote
Agreeky Posted July 28, 2013 Report Posted July 28, 2013 I get the burning feeling but mine is due to neuropathy I think... Quote
Psalm 23 Posted July 28, 2013 Report Posted July 28, 2013 Yes. I have a problem with burning in my feet that started about a year ago and has steadily worsened and moved upward. The burning in my hands just started recently. I also have an increasing problem with discoloration in my feet and legs ( red/blue/purple mottling ) which seems to be related to a dependency position. I do have a diagnosis of raynauds and exposure to cold will cause my hands and feet to change color but this more recent problem is entirely different. I am wondering if this dependent discoloration is the result of a nitric oxide abnormality in the skin as Dr. Raj proposes as a possibility for some POTS patients. Do you have discoloration to your skin along with the burning pain ? I have been thinking the burning foot problem may be small fiber neuropathy but do not have that diagnosis confirmed. My Rheumatologist believes that to be the case. I have also wondered about erythermyalgia as a possibility but no one has mentioned that one. This is all very disconcerting. I don't believe I will get any answers to this until I can return to Mayo. My doctors here are really not very familiar with these sorts of problems. I'm sorry you are experiencing these problems as well. Janet Quote
kayjay Posted July 28, 2013 Author Report Posted July 28, 2013 Thank you Janet. I also had a reynaulds diagnosis. This is almost an opposite problem. I just went back to mayo Rochester on February and it wasn't an issue at the time. I'm not sure about the erythermyalgia because there is not swelling. I will have to look for color changes. Agreeky- it certainly could be neuropathy. Quote
E Soskis Posted July 28, 2013 Report Posted July 28, 2013 Unfortunately, I am quite familiar with burning hands and feet - the first symptoms of Raynaud's DZ began with my feet and lower legs turning a lovely shade of purple at odd and random times - then my fingers began to blanche white with a dead feeling which was/is exacerbated by cold weather - now, I have "bugs" crawling on my lower legs, feet, and hands pretty much all the time - if I get too tired, too hot, or do too much physical activity, my hands and feet feel like I am being stabbed with needles over and over - it is a hot, prickly feeling - sometimes, feels like they are on fire. I am told by my neurologist it is just the progression of the Raynaud's and not much can be done - he shrugs it off so, I try to also....pretty annoying......and painful...... Quote
Psalm 23 Posted July 29, 2013 Report Posted July 29, 2013 What have you all found for any kind of pain management ? I have found neurontin, lidoderm patches stuck on the bottoms of my feet and else where and elevating my feet seems to help which leads me to believe that my pain is most likely neuropathic. Burning hands and feet I guess can also be a fibro symptom and since 50% of fibro patients are thought to have SFN that comes back to a possible neuropathic basis for the pain. I suppose Raynauds could still be a possible culprit but I didnt realize that Raynauds could cause a type of pain that I would associate more with SFN. Although now that I think of it couldnt Raynauds cause SFN because of blood vessel spasms and restricted flow ? Besides the burning I have the tinging, stabbing, aching etc.as well. Yes. It is very annoying. Do any of you also have a fibro diagnosis ? How about abnormal qsart results ? Quote
kayjay Posted July 29, 2013 Author Report Posted July 29, 2013 I do have fibro- I no longer treat the pain with meds. I've been on lyrica and cymbalta. They both helped but I don't want to deal with additional side effects.The pain isn't unbearable to me, but it seems to me a changing/ increasing symptom. I guess I'll call mayo this week and see what they say. I had qsart test(s) done there but I didn't really care about the results at the time Thank you! Quote
kayjay Posted July 29, 2013 Author Report Posted July 29, 2013 Psalm- I also have had aching in my hands in particular. Before I was even diagnosed I told my mom that I thought I might have arthritis (I don't). I would wake up with my hands hurting and even dreamt that I was banging on the piano until I injured my hands. Quote
Freaked Posted July 29, 2013 Report Posted July 29, 2013 Kayjay, yeah I've had that problem. Like you, initially it was freezing bluish limbs or numb arms, but I've since had episodes where my hands or whole lower arm have been burning. Left side effected worse than right usually, and I've had left arm aches too. My radial nerve seems to be worst effected normally. Also noticed a mottled red and white appearance to my hands at times, like you'd get with chill-blanes (the sore itchy feeling when your exremities are warming up after being outside in the cold; not sure what other places call it). No theories to offer unfortunately, except it's probably either a circulation or neuropathy issue (obviously). Quote
Psalm 23 Posted July 29, 2013 Report Posted July 29, 2013 Kayjay, I'm sorry I realized you did have fibro listed as one of your diagnoses. I need to read more carefully next time. I have the hand aching as well but I do play the piano and that aggravates a lot of things but it's hard to completely give up on enjoyable activities. Calling Mayo sounds like a really good idea. The phone support they give is wonderful. Yes. Considering your new symptoms I would wonder about my qsart results. Mine showed impaired sweating in distal extremities which was one of the reasons I was leaning towards small fiber neuropathy as a possible diagnosis. Because of an insurance problem it will be a while before I can go back to Mayo. I would love to hear about what your doctor says about your burning hands/feet problem.E Soskis, thanks for sharing your Raynauds symptoms as it got me thinking about connections between Raynauds and SFN. I found an article I thought was interesting regarding just that. There seemed to be several other articles discussing that connection as well. I also realized that with an AAG diagnosis you would have an abnormal qsart.http://www.ncbi.nlm.nih.gov/pubmed/20035332 Janet Quote
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