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Scleroderma & Raynaud's UK (SRUK)
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Burning Feet & Raynauds

HI all, I'm relatively new to this forum and from the US. I'm a 51 year old female with IGA nephropathy ( a type of kidney disease) diagnosed in 2016, as well as many food intolerances. I've had Raynauds since I was a kid. I live in the Southwest so relatively warm all year.

This year was particularly hard on me. I am very careful about staying warm even in the house, however, this year I seemed to have more flares. Now that it is warming up here (our coldest time is Nov to early January), my Raynauds episodes have gone down, but I'm getting a burning sensation on my feet and feelings of pins and needles. It seems to be happening more and more often. My hands ache as well, but don't have the burning or pin needle feelings. My fingernails and toenails break very easily as well.

I'm seeing my doctor on Tuesday, but any thoughts of what might be causing this would be great so I can discuss with him. I'm thinking I might need to see a rheumatologist. Thanks!

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Hi there, have you had your vitamin B12, folic acid and iron levels tested? Pins and needles is a classic B12 deficiency symptom and breaking nails can be iron. I also have mild CKD and many food intolerances as well as raynauds (I think we’ve spoken on the early CKD forum before?). If I don’t take supplements I get deficient in those vitamins and iron and end up with similar symptoms and more. Perhaps ask your doctor to check?

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Thanks Julesboz!

I do take iron supplements, but perhaps I need more. I have had my b's tested, but maybe they should be checked again. Personally, I thought my values were a little low for the B's, but my GP thought they were ok. Can I ask what brand you use? I had a hard time finding one in a small enough dose recommended for kidney patients, so I ended up forgetting about it, but think I'll look back into that. It seems they are all super high doses for most vitamins these days. I'll make note of that and bring it up again. I appreciate your thoughts. :)

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With regards to the ‘normal’ range for vitamin B12, it’s perfectly possible to get symptoms of deficiency when you are at the low end of the range. Actually that’s the same for folic acid and ferritin, with or without anaemia. It frustrates me that doctors think people are robots and that’s somehow if you’re anywhere between a huge range of say 160-1000 then you’re fine, but if you go below 160 then suddenly you’re deficient. People don’t have a switch, it’s a sliding scale and for some people being at the lower end of the range would be fine but for others, to feel well, they need to be at the upper end. ‘Normal’ is just an opinion and everyone has a different ‘optimal’ value. Anyway, I take 1000ug of vitamin b12 methylcobalamin every other day. I know it’s high dose but it doesn’t seem to affect my kidneys, in fact since I’ve been supplementing and eating a kidney friendly diet my GFR has got better. I don’t have a recognised condition though, I just have unexplained low GFR and high-ish creatinine, so it’s probably worth discussing with your doc. Perhaps you could look into a good quality multi B vitamin tablet which includes B12 and folic acid? I can’t take a multi B vitamin because I react to one of them B6 I think.

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Thanks a bunch Julesboz!

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Hey Julesboz. After your thoughts and reading up on things, I was so sure I had a fit B deficiency, I ran out and bought a good quality vit B complex. I actually started feeling better so I was hopeful. Several days went by and as the weather took a turn for the worse, my feet felt worse. They were burning up and red rather than white and cold like they usually get. I finally got into my doctor yesterday and had multiple blood tests.He tested my red blood cells for inflamation (erythrocytes sedimentation rate). Within normal range. My TSH, T3, T4- all perfectly in mid range so no thyroid issues. Glucose and hemoglobin for diabetes. Normal range and not near the range for possible future risk. B-12 671 which is smack dab in the middle of normal and folate at 6.7 which is in normal range.

I don't know if my supplimenting could have put me in the normal range for the B in 2 days, but I suppose it's possible. I am going to continue with them as hoping it will help. Just got the labs this morning so will wait for doctor's call. I was actually really hoping it was a B deficiency so we could do something about it. Now it's back to the drawing board. Will probably need to see a rheumatologist. Feeling a little bummed especially when my husband said, "Maybe there's nothing wrong with you." This is coming from a man that has never had a cold in 17 years of marriage. People who don't get sick don't understand our pain. Sigh...

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Oh I definitely feel your pain! I’m sure my family think I’m bonkers because I end up having to research health issues with all the weird things that happen to me. Doctors keep shrugging their shoulders when I ask why these things are happening to me. If you have a blood test for B vitamins you need not to have taken vitamin B for a week before because it will skew your results so yes, a couple of days of taking a supplement could have had an effect on the test. See how you go with the supplements and good luck!!

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thanks! :)

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Check for diabetes

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Thanks. Sounds like diabetes I know, but my glucose readings are normal and I am not overweight, but I do eat a lot of fruit. I will bring that up to my doctor as well. Appreciate the response. :)

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I have severe Raynauds and mine is secondary so it effects not just my hands and feet. I get the burning in my feet but not on my hands but unfortunately they don’t know if it is from the Raynauds, lupus , Neuropathy , or fibromyalgia, Scleroderma .I am not a diabetic . I have nerve damage from the other things . Hope that helps. Oh and I have no thyroid issues. For now those are probably one of the only two things that I am not having problems with or have to take meds for . I take 23 medicines . I got a lot going on but those two are not it. Hope that helps u at least a little bit. At least you know someone else that has it but doesn’t have the other two things that you have . Feel better:-)stay strong

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Oh geez! I'm so sorry to hear of all your issues. It's hard to been in pain all the time. Thanks for your kind words. Stay strong as well! :)

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