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LUPUS UK
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SLE, burning feet and hands

Good day all,

Does anyone have the same problem? My hand and feet are burning and I've noticed that at night I have a pins and needles in my feet, does anyone have a solution because its getting unbearable, and can the constipation be because of lupus???

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Hi. I have experienced burning hands and feet previously but not for a good while. Mainly get it in the summer or if I have had sun exposure.

I don't get constipation, I get the opposite!

Jo

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Thank you for the reply, maybe the constipation is due to the stress I'm having . I will make a point to see how my feet are in winter....Take care and God bless

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Hi Ashleye, if you take codeine based painkillers these could also cause the constipation x

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I have had "hot flushes" in my legs before, a heat moving around them. I've also had pain in my lymph nodes under my arms that can be like a shooting pain down my arm. I've also suffered from tensiloysus (I think that is right - a form of tendonitis) on both sides. Lupus is a strange thing to get used to. The symptoms are so varied. Some are daily and others have happened only once in the time I've had it. Oh and I get the opposite of constipation too. Oh joy! 😳

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Officially I have RA rather than Lupus but I've had burning hands and feet as you describe for several years now. In fact it is more widespread now and affects my entire legs and arms severely 24/7.

I've had many tests, many things ruled out from Diabetes and Pernicous Anaemia to MS. After recently spending a day having MRIs, nerve conduction tests and a lumbar puncture I'm none the wiser as to what's causing this.

My neurologist has only confirmed that this is a small fiber neuropathy (SFN) which he classes as mild - despite having told me he felt it was an advanced and progressive SFN a month earlier. I feel that the pusuit of what is happening to me has been a big red herring and am really tired of it all. I do hope you fare better but I advise you to push for tests etc to rule out the more common causes such as diabetes or B12 deficiency as soon as possible.

There is a good site for information and support called NeuroTalk and I go there often now to learn more about prognosis, treatment options etc. I hope you have more luck than I've had at getting to the bottom of yours. It may well be part of the connective tissue/ autoimmune process for you but best to get it checked out.

Re relief I'm told that Biofreeze, Epsom salts or magnesium oil, ointments and creams can all be effective. Also someone from thr Neurotalk site says she's found valerian root helps her to get through the nights. Don't try and cool things down using cold water though - this only makes things worse and damages the tiny nerves and skin.

Take care, Twitchy

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You've got some good replies which fit with my experience of symptoms similar to those you're describing (the burning & neuro symptoms) but not the constipation (I'm the opposite)

Have any of your drs talked to you about Raynauds (RP) & or erythromelalgia (EM)? Although there are many many conditions etc that seem to cause burning & pins and needles in hands & feet, RP is a relatively common cause, and EM is a more unusual cause. I have both conditions simultaneously (freezing & burning together & in phases 24/7, no fun at all!). the raynauds & scleroderma health unlocked forum includes others like me with SLE, + RP & EM as secondaries, so, if you haven't already, could be worth posting your ? there too. The raynauds & Scleroderma assoc website has good info on EM in the associated conditions section.:

Raynaud's & Scleroderma Association

raynauds.org.uk/

The TEA website has info on EM, and when you register with the TEA online, you can access their archive which are full of good advice:

The Erythromelalgia Association

erythromelalgia.org/

MY RP & EM are always harder to manage during the coldest phases of winter + the hottest phases & summer. My sle meds have helped damp down my RP & EM symptoms somewhat (daily Hydroxy + amitrip + myco + as needed low dose pred tapers), and lifestyle management is v important too. Always I find that taking care to regularly remove the hard dry skin on my feet + moisturising the skin of my feet & hands is key to damping down the burning: in winter shea butter products work best for me.... I rub this in gently and thickly in the morning & before bed. In summer I use aloe Vera gel. Twitchy is right: don't rely on cold water!

Otherwise, the reasons for my burning & neuro symptoms are typically complex...not just due to RP simultaneous with EM, but adding daily myco to my treatment plan in jan 2014 has somewhat reduced these symptoms....

Good luck & Take care

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Hi Ashley

I too get burning hands and feet and tingling. Could be nerve problems for you that should be checked!. Mine is treated with steroids successfully.

Is the constipation a sudden change for you?. Can be a side effect of medication. There are lots of remedies like prunes and prune juice, eating more fruit in general can help you go. If all else fails then Lactulose on prescription is a gentle cure for constipation. Hope I've helped?. X

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Hi, I used to get awful pins and needles in my feet and legs. Felt like insects crawling all over me! I trawled the internet and discovered that a deficiency in vitamin B12 can cause these feelings along with dizziness and being off balance. I got some vit B12 supplements (methylcobalamin) from my local health food shop and after only 2 weeks the symptoms were much improved. I still get pins and needles but not nearly as bad as it was and the dizziness has completely disappeared. Theyre completely safe to take, any excess is just eliminated in your urine. My GP now regularly checks my B12 levels. I was amazed that they don't check it routinely with our other blood tests but they don't. Id recommend asking your GP to check it.

I also have started getting constipated - don't know why! Am having to eat lots of prunes!!

I hope you find some relief soon.

Good luck xxx

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hi, my Dr did draw blood to check my B12 level I'm just waiting on the results, thank you for your reply.

Take care and be blessed

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Hi, I also have the burning feet, and hands and its very debilitating as sometimes I find it very very difficult to walk. Im trying to find someone medical person to understand. Unfortunately not having much luck at the moment.

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It really is strenuous to walk at times especially in the morning when I wake up, please share if you manage to find more info.

Be blessed and take care

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You probably are talking about Raynaud's. The very first thing I noticed before I was diagnosed with SLE was the numbness in my toes. Eventually it spread to my fingers. I must use hand warmers often because I can't feel my fingers when they turn white and purple. I also get terrible cramping in my fingers and legs. I take Quinine, which I have to order from Canada because they US won't sell it, and it helps. SLE is not fun!

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Lupus is really not nice, Google Garth Kent and his story about lupus, ive found it quite interesting..

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I'm an exception to the rule regarding Lupus. I'm a 66-year old causcasian male with a diagnosis of Lupus about eight months ago. My feet and ankles turned bright red with the feeling like they were buried inside an ant hill - with the tingling, not the biting. My dermatologist gave me CLOBETASOL PROPIONATE Cream USP 0.05%. The cream is very, very expensive but the redness and most of the tingling went away after one week. Sometimes, late at night I can still feel the tingling but not as bad. I also suffer from some constipation which can be quite painful. The disease has also caused a thin layer of water around my heart that can cause inflammation and pain. Good luck.

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Hi Ashleye,

Yes and yes. It felt like someone was holding a lighter up to my hands around my knuckles. I stopped eating processed food and the inflammation went down and now I don't have this issue. Note I've been eating non-processed food for 2+ years. It takes a few weeks to make a big difference and longer to have a huge change. Also, my nutritionist put me on a Calm brand Magnesium. I'm in the states so not sure what is available elsewhere. All the constipation issues not a problem anymore. :)

As always, not medical advice, just what worked for me!

Calafia

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Hello Ashleye, I was diagnosed with lupus June of this year and just now have been experiencing pain in my feet. The feeling is like needles and a hot feeling simultaneously, sometimes throbbing with little relief. I've noticed that I am experiencing this feeling in one of the areas where I have swelling, directly under my two big toes. I have been going outside more without covering as I am suppose to, and I have become ill because of it. What can I say, at fifty-years of age it takes getting use to to have to change what you've become accustom to doing all of your life.

I was having constipation, but that was before I began watching my diet intake. I don't know what kind of medicine you are taking, but I am on methotrexate, prednisone, and folic-acid, I believe it is the prednisone that causes constipation. You might want to check with your doctor if you haven't by now, but veggies and fruit along with lots of water does it for me. If you are on methotrexate, you absolutely must push the filtered water for the sake of your liver. If you want to know of a really great option I only just learned about and am excited about, then use Bragg's apple cider vinegar in your water, about a teaspoon every 8-12 ounces. This will clean you out really good without giving you the runs. I do it about three-four times a week. If you use the bathroom too often then simply cut back. Do not use an apple cider vinegar from a plastic bottle, but use the ones from a glass bottle, Bragg's is recommended, but check with your doctor first. I bet she/he gives it a green light.

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Hi there, i see your post is from a few years ago. I’m going through the red hands and feet and the menopause and lupus. How did you solve the red hands situation?

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