Hi everyone!
I have a burning question that I have to ask… I have recently been tested to SLE with the new Exagen AVISE SLE+ Connective Tissue 2.0. Both ANA Tests are positive, the IF (homogeneous) and ELISA along with the EC4d antibody for kidney rejection. I have bilateral pain in a lot of joints and muscles, which I thought was the beginnings of RA, so I went to a Rheumitologist to get checked out. The first Rheumy didn’t do many tests, just told me it was OA form wear and tear, I reminded her, that I had the pian for 40 years, long before the wear and tear! She retired, (probably out of frustration, have to deal with me!) my new Rheumy was a God send, luckily she didn’t have the previous medical records, so wasn’t influenced by the previous Dx. I got all the bloodtests for many diseases to rule them out, first doctor to actually follow protocol when confronted with a bilateral whole body pain synario. Everything came back normal but SLE Lupus.
I was started on hydrooxyclorquine, been on it almost 4 months.
Now to the. Urging question: for 30years I have had burning hands and feet, which has always benn dxed as Polyneuropathy. I went back to the neurologist, who did a nerve conduction study and punch biopsy, they came back normal. He thinks it is being caused by the SLE, so he sent me home without anymore tests, very happy to see me go. (I must have that effect on doctors!) anyway, this got me thinking, PN is always discribed as a “sensation of heat”, my hands and feet get so hot, (my shoes fall apart!) They are either real hot or real cold and clammy. They also turn red when they heat up, I looked it up, and figured the pain might be from Erythomalgia, that can be caused by SLE. They have different treatment for that then the treatment for PN pain, as it is caused by the blood vessels in the feet regulated by the small nerve fibers.
I am not scheduled to go back to the Rheumy until January, but I will ask her then.
Does anyone have the condition, of hot red burning hands and feet?
Sorry for the long post…
There is also Reynaud's which can cause this I have mild Reynauld's precipitated by cold and boy do my fingers sting- I always miss the blanched stage but do note the flushed redness My feet also get so hot it is hard to sleep at night I have been known to go stand barefoot in the snow trying to ease the burning. Treatment has always coincided with getting the lupus activity toned down
Well, I can relate to that! I figured that I had to have the change in color, but it could be that.
So, do they give you the antimalarials? What are the treatment options for it?
I can’t believe that someone else has hot, red feet and lupus. I’ve had this for years, and my feet also swell. I have Reynaud’s, which is sort of the opposite, with icy feet that look waxy or blue, according to the literature. But now that I live in San Diego, that hasn’t been an issue. In the last four years, my feet have gone from difficult to much worse- very swollen, with swelling in ankles and legs, also hot and red. People ask about my sunburned feet. I’m good about avoiding sun, but I can only wear flip flops. I think sun is a factor, but not the main issue. I have numb places, but not totally numb, although I just suffered some possible nerve pinching that has left the top of my foot really numb and it won’t lift right. The swelling makes my balance change, so it’s a mess . Does any of the swelling happen to you two? My grandma was known for having active feet in bed (kicks is what we call it) and several of her grandkids have it, including me. I hate sheets touching my feet, plus any covering increases the swelling and pain, the pain is from the redness. I think it’s a butterfly rash, but on my feet. My rheumatologist once told me my feet could be on the cover of a magazine, a rheumatologist one, I’d guess! I recently went through several weeks of little swelling, and now it seems worse than ever. I wish I knew why it went away so I could fix it all the time. That and fatigue are. My worst things right now. Dizzy fatigue.
I don't get much swelling just redness and hot or cold. My face gets bright red, and people think it is sunburn, but I wear SPF 50 sunblock, and avoid going in the sun. It says that Erythomalgia can also effect the face and ears.
I do go through sheets, mainly the bottom fitted sheet, I buy the high thread count, but still wear a hole in them with my feet rubbing on the sheets to cool them down in my sleep!
I get the fatigue too, I cannot even lift my head off the pillow when it hits. My friend was saying "you would get up if there was a earthquake", but I don't know if I would...
San Diego is a better place to be with cold feet...
Went awayWell, it’s never cold enough to worry anout cold feet. I too wear holes on the bottom sheet! I put on iron on patches in matching colors) I used to have the malar rash, but it than make me even tireder. mostly went away with cell cept- about all that cell cept did. But it just made me me look less pale (sun avoidance!).
The fatigue just keeps becoming worse . It is my major reaction to most strong new meds. I have a gout med recently that totally knocks me down, but it is starting to get a little better, and works for gout. I think I got it as a side effect to cell cept. I’ve had lupus for 28 years I think. I used to go into remission.
Are your hands red? If so look into erythromelalgia
I have Raynauds and Livedo Reticularis but I seem to get the heat issues too, not in mt feet but my hands, arms, chest and face. I go to a neurologist next month.
I have it all over my body. It's being called small fiber neuropathy, but other doctors who don't know about small fibre dx say it's fibromyalgia along with lupus. Fibro is nerve pain, and new studies show that people with fibro have many more small nerves in their body than normal people. I get burning so bad I have to run and strip fast and get into a cold shower. Once I couldn't get stripped fast enough and had to jump in partially clothed. My diabetic ex had the hot hands and feet. It seems counter-intuitive but capsaicin roll on helped him. People with nerve pain are often given anti-seizure drugs because they calm the nerve endings. I hated how groggy they made me so I was happy when they took me off a week later for liver problems. I have found that vitamin D, which heals the central nervous system, and vitamin B complex (the sublingual-under the tongue ones are strongest) heals nerve endings, has made a big difference in my nerve pain. Sister drugs to the anti-seizure meds are also used, like Lyrica and Cymbalta. I just don't handle prescriptions well, so I stick with my natural counterparts.
Sheila W. said:
Hi, I went to a Neurologist that specializes in SFN, he did both a nerve conduction study and punch biopsy on my leg and foot, both came back normal. The small fiber count on the sweat gland was low normal, so that could indicate that it is systemic SFN and hasn't reduced the amount fibers yet, even though I have had it for almost 30 years. I have tried gabapentin, lyrica and am now on Cymbalta, none of the drugs have helped with the burning pain. I did the vitamin B-12 injections for a couple of years, no improvement. Then I got to thinking maybe I am being mis-diagnosed, because of the hot and cold feet and hands. Yes, perfectgams, my palms and bottom of feet get bright red.I have it all over my body. It's being called small fiber neuropathy, but other doctors who don't know about small fibre dx say it's fibromyalgia along with lupus. Fibro is nerve pain, and new studies show that people with fibro have many more small nerves in their body than normal people. I get burning so bad I have to run and strip fast and get into a cold shower. Once I couldn't get stripped fast enough and had to jump in partially clothed. My diabetic ex had the hot hands and feet. It seems counter-intuitive but capsaicin roll on helped him. People with nerve pain are often given anti-seizure drugs because they calm the nerve endings. I hated how groggy they made me so I was happy when they took me off a week later for liver problems. I have found that vitamin D, which heals the central nervous system, and vitamin B complex (the sublingual-under the tongue ones are strongest) heals nerve endings, has made a big difference in my nerve pain. Sister drugs to the anti-seizure meds are also used, like Lyrica and Cymbalta. I just don't handle prescriptions well, so I stick with my natural counterparts.
I have had all these problems and finally got my thyroid out…stupid move…I cant find a rhuematology. I have also been sick for fifteen years. Ill pray for you guys
Well this is funny. I too wear holes in the bottom of the bed sheets from rubbing the sheets with my feet constantly, even when I am asleep. I asked my wife if my feet moved even when I am sleeping and she confirmed that they did. So, I am not the only one who does this, how interesting. I had always thought it was just a type of nervous habit. But it could be Lupus related?
Jane S. said:
Went awayWell, it's never cold enough to worry anout cold feet. I too wear holes on the bottom sheet! I put on iron on patches in matching colors) I used to have the malar rash, but it than make me even tireder. mostly went away with cell cept- about all that cell cept did. But it just made me me look less pale (sun avoidance!).
The fatigue just keeps becoming worse . It is my major reaction to most strong new meds. I have a gout med recently that totally knocks me down, but it is starting to get a little better, and works for gout. I think I got it as a side effect to cell cept. I've had lupus for 28 years I think. I used to go into remission.
Somebody should market sheets with cooling and heating systems for us, it could hav a sensor to regulate the sheet temperature… I think this sheet wear could be common with anyone suffering from neuropathy, especially when they have burning pain in the feet. Also, restless leg syndrome would have the same effect.
This type of neuropathy that is caused by SLE, may be tied to the Dorsal nerve in the spine,the SLE causes the nerve trunk to become inflamed and expand, causing the small capillaries in the feet and hands to go haywire. They have a special MRI to image the Dorsal root, to check for this. However, there is no cure for any of these maladies.
@Awesomed, you might want to find a DO or hormone doctor that will optimize your thyroid hormones with Armour thyroid. It has helped me a lot.
Hi Jane, I live in San Diego too. I was wondering who your Rheumatologist is and if you like them? I am not thrilled with mine, so I am curious as to yours.
Thanks, Geneva
Jane S. said:
Went awayWell, it's never cold enough to worry anout cold feet. I too wear holes on the bottom sheet! I put on iron on patches in matching colors) I used to have the malar rash, but it than make me even tireder. mostly went away with cell cept- about all that cell cept did. But it just made me me look less pale (sun avoidance!).
The fatigue just keeps becoming worse . It is my major reaction to most strong new meds. I have a gout med recently that totally knocks me down, but it is starting to get a little better, and works for gout. I think I got it as a side effect to cell cept. I've had lupus for 28 years I think. I used to go into remission.
As for heat and cold while sleeping, bamboo sheets are miracle to have. Hypo, anti-bacterial, and stay warm or cool depending on weather.
Now to neuropathy, have you been checked for overlapping disease. A one that many of us have is Sjogren’s. Many people think it’s just dry eyes and mouth, but it also affects the small nerves that are often missed on a NCS.
I’very noticed that the nerves on the bottom of my feet and in my fingers. Oh, the pain when walking can be overwhelming.
Reynaud’s syndrome is another that can cause change in color.
The point is that lupus isn’t always the answer for every ache and pain and you should mention these to your new Rheumy. If she is as good as I hope for you, she’ll want to get to the bottom of this.
Good luck.
Bamboo sheets, never heard of that, I will have to check that out. No splinters? ;o)
I had both the Rheumy and and the Neurologist are looking into the cause, the Neurologist just diagnosed it as polyneuropathy from another disease or secondary to another disease. I kind of felt like it was a "throw away Dx" to get rid of me.
Now that we have ruled out SFN I need to go back the the Rheumy and see what we can find out. Sjogren's didn't show up on the SLE tests, and my recent ophthalmology exam, she didn't find any abnormalities. Could be EM or Reynaud's we will have to look into that.
whathappensinvegas said:
As for heat and cold while sleeping, bamboo sheets are miracle to have. Hypo, anti-bacterial, and stay warm or cool depending on weather.
Now to neuropathy, have you been checked for overlapping disease. A one that many of us have is Sjogren's. Many people think it's just dry eyes and mouth, but it also affects the small nerves that are often missed on a NCS.
I'very noticed that the nerves on the bottom of my feet and in my fingers. Oh, the pain when walking can be overwhelming.
Reynaud's syndrome is another that can cause change in color.
The point is that lupus isn't always the answer for every ache and pain and you should mention these to your new Rheumy. If she is as good as I hope for you, she'll want to get to the bottom of this.
Good luck.
The bamboo sheets look nice, kind of pricey, but I guess if they hold up, it would be worth it.
I’ll go look at bamboo sheets, i’ve seen them in the store, but haven’t tried them. My feet and calves are super hot today 
kind of hurts…
Geneva, My rheumatologist is Dr Frank Nolan. I do like him, he is in Oceanside. I’ve been seeing him since 1997 and he’s taken good care of me.
Thank you Jane, I really appreciate it!