pins and needles/stinging on torso skin and burning in mid back

Does anybody have any idea about these strange symptoms? The burning in my mid back is coming and going. I actually can feel some stinging on my arms and legs too. I expecially feel it if my skin touches clothes or anything. What the heck?

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Allergic reaction sound most likely. I'd try an antihistamine, and if it works...the look at high histamine problems...
*I believe I have this too...

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Yes! I use to have this burning, stinging pain in one spot in middle of back, but now it goes up my back to neck and on one shoulder. When it first started, I would think there was something in my shirt stinging me. Several times when I was outside, I have yank off my shirt thinking there was a wasp. Other times it is a dull burning ache. I don't know what causes it, but I really wish it would stop.

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I have this also and the dr. checked my vitamin b level and it was very low so she had me take 1000mg vitamin b12 once a day and the burning is not as bad now. Nerve pain and low vitamin b levels seem to go together. Pins and needles is a sign of nerve pain.

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My hands and feet burn and itch when they swell I think its probably from the hardened skin stretching. Maybe Vit B will help that too? I ran out w while back. Hmmm.

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Do you have a rash in those areas of pain? Itchy skin? You sound like how I felt just prior to my shingles rash appeared. The wind bothered my skin. If so, get to doctor ASAP for anti-viral meds. Just a thought. Good luck. Hope you feel better soon.

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Sounds like shingles to me,also! Get to doctor before the rash appears. Do you have this burning on one or both sides of you body? If it is on both sides, it's not shingles. Shingles is inflammation of the nerve endings as the result of the chicken pox virus.

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I have this maddening itch, in one area of my back, on one side. it never goes away, can't stand clothes rubbing. and around my neck, have to use soft clothing . In July I had a severe allergic reaction to an undetermined cause, Scalp itching and burning, also arms and face , After prednisone, cortisone, Allegra, Singular.... three Dermatologist's still no answers. Scleroderma is usually the culprit for all these mysteries. I have had some relief if I coat my whole body with an RX vitamin E ointment, once a day and also Cerave crème, once a day, not much fun, but better than scratching! I will double my Vit B I guess. All we can do is cope, the painful feet , with the ever tightening skin, also limits social activities.

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Another suggestion is to seeing a neurologist. I do know what you mean about the burning and itching. I described the sensation to the my docs as a very bad sunburn--but there is not a burn. It has calmed down some, but the neurologist tested me for neuropathy and now I am receiving treatment for that and it helps.

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I though about shingles when it was just my right hip being numb and stinging. The numbness started a week and a half ago on a road trip. Then came the stinging in the one hip. But as of yesterday, it is like needles everywhere my clothes touch on both sides of my body. It went to both hips, then my torso on both sides, then my legs and arms too. Strange. I am glad I posted to you all. Mabe I am low in vitamin B. I think that strange deep pain in my mid to upper back that is coming and going may be part of this. I am thinking kidneys, scleoderma, spine. . . My family is thinking spine. I didn't even think about allergic reaction or neuropathy. It sure is hard to tell once you have one thing to know if this is part of that or something unrelated, isn't it! I guess I will call my primary and start there.

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I was referred to a Neurologist , but I can't tolerate Lyrica or Gabapentin, gives me severe vertigo . And I think that is all they will offer. can't get in for 6 weeks anyway.

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I overdid yesterday and started to itch and get a rash all over my torso. I got a weird pain in a new place too. Today my skin feels like pins and needles and I am trying not to move so my clothes don't rub against me. Pain pills don't help very much so I am trying to stay still until it passes. My arms did feel kind of numb last night in a weird way too. This is the worst outbreak like this that I have had, I am hoping that it will get back to a manageable state. I did find out I only absorb 50% of B vitamins from a blood test that my naturopath suggested. So I am slowly working my way up to the amount that I need. I am very hopeful that it will help in alot of ways. I got a little rash on my cheeks this time and I am hoping that it doesn't stay there.

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Yes, I had it! This horrible pain in my back every night between 7 and 9 - in the end of the day! ... with temperature about 38*Celsius
Some nights were so horrible and painful!!! - I was shaking like an old person.
Vitmin B12 helps a lot! Since I started B12 / 1200 per day - the pain is not so strong and I have no pain at all ...some days. You are loosing your nerves, blood vessels and muscles - talk with Neurologist as soon as possible. Check with MRI not CT.
If you'll stop the SCL it will become better.
good luck!

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Brainfog, are you in New Mexico? I was just their for the balloon fiesta.
Beachdog, you look so active and sweet walking those dogs. I hope your needles and the rash fade away!!! This stuff sure gets in the way!
Thanks Sahara, I feel for you. And I was hoping that it was a crik in the neck. -Sounds like you guys are feeling the same sensations. What a drag! I feel for you. Did they MRI your brain or spine or other? I would hate to loose my nerve! :) I really don't want to give up anything.

I just did a blood test. I will call and see what they say or if they looked at vitamin B levels.

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YES, I've had exactly those sensations. Actually my very first symptom (that I later realized was part of the disease) was a patch of tingling and itching on my mid back on the left side. I thought it was weird, but nothing to be concerned about. It still comes and goes (almost 4 years later). For a while, when my neurological symptoms were most active, I also had the burning skin sensations. It really does feel like a bad sunburn and I didn't want my clothes touching the skin even though the skin itself looked fine and felt normal to the touch. At the time I was also getting very odd sensations like feeling as if I had water running down my arm when it was totally dry or an intense itch that would come on suddenly and couldn't be relieved by scratching. Those things (the burning skin and hot/cold/wet feelings) have gone away on their own. I had maybe 6 months when it was very bothersome and then it just went away. I do still regularly (every day) get tingling in a variety of places though none of it is permanent -- it comes and goes.

As for the cause or treatment, it can be VERY difficult to figure out neurological symptoms. I've had 2 neurologists and both were very good and willing to investigate, but both concluded that the symptoms were related to my autoimmune disease (which is UCTD/scleroderma) and that only treating the underlying disease would improve the symptoms. They did offer medications like Lyrica (Gabapentin) or Elavil (Amitriptyline) and I did try both at different times. I was on each one for about 6 months. Lyrica did nothing at all except make me dizzy. Elavil was helpful in some ways, but not so helpful that it was worth the side effects for me (racing heart and weight gain). I weaned off it in June and feel essentially the same.

If you see a neurologist they will probably want to run some tests to rule out other diseases like MS. This is usually a brain/spine MRI with contrast. I had one every year for 3 years in a row and there was never evidence of MS so that's been completely ruled out for me. Actually, when the first one was clear the neurologist started saying that we ought to talk about whether depression or anxiety was the root cause and maybe try medications to control those... but I've never been diagnosed with either depression or anxiety and they were not, in fact, the cause of my neurological symptoms. Neurologists don't seem to know much about the connective tissues in general. And my rheumatologist knew very little about neurology, so she kept referring me back to the neurologist to discuss those types of symptoms (tingling/numbness/dizziness/weakness). Neither of them knew what to do with me so the discussion was always about fibromyalgia and depression. I have since learned that connective tissue diseases can and do cause nerve damage. It is fairly common in Sjogren's and somewhat common in lupus. It is rarely discussed in relation to scleroderma though I can say from informal surveys on this site that people with scleroderma do get neurological involvement.

It may be caused by the nerves themselves become inflamed and scarred, or more likely by the blood supply to the nerves being reduced. If a nerve isn't getting adequate blood flow, then it will malfunction.

The neurologist might want to do Nerve Conduction Velocity studies and/or EMG. Neither are pleasant tests, but also not terrible. They will confirm or rule out large fiber neuropathy, but can't tell you whether you have small fiber neuropathy which is the one that would be found in people with sclero/lupus/SjS anyway. But sometimes it's good to rule out the presence of other separate diseases.

Certainly it is also worth checking for vitamin and mineral deficiencies, as they are more easily treatable. Iron and B12 and vitamin D deficiencies can cause tingling and other nerve symptoms. Diabetes can also cause neuropathy and is worth checking for. You can have it even without the normal risk factors and treating it would make you feel a good deal better and prevent further damage.

Take care,

Zoe

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Dear mountain_hkr,
my SCL progress very quickly. Just for 6 months I've started walking as grandma. Yes, finally I have 3 MRI of my legs, but I have a meeting with the Neurologist in November. SO, I don't know the result yet! :(
It is painful to stand up, to sit down, to pick up something from the floor.... even with B12 ( my idea to take it every day).
One year ago I was a normal person. Since March 2013 the doctors started my treatment. At that time all of them were thinking I am a dramatic actress. Till now they were thinking I have a cutaneous involvement only. Couple a days before I past a digestive muscle test (it was my idea) - surprise! - all my muscles past away only for 4 months! :) On feb.2013 everything was O'K! Now they say maybe it is general muscles atrophy. MAYBE now somebody will take me in serious and will start to listen what I am talking and asking for.....
Because of the rapid cutaneous progress all around my body I am on Rituximab treatment since May 2013 with no result. This is the "Mercedes" of the SCL treatment. Even my blood test is almost perfect and my ANA are just 640:1, the SCL goes quickly than usual.
SO, if you don't feel well, or there are strange pains somewhere - go for a doctor and fight with them! Don't give up! You are in this body, not somebody else! You know better what do you feel and don't listen xxxxxxxx like "maybe" or "we think it could be..." - ask for MRI test right now!
wish you luck!!!

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I can't take either Lyrica or Gabapentin. There are other meds if you need to take something. My doc put me on some others and I don't have the burning sensation.

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Scleroderma can affect muscles, but that extent of muscle involvement (especially in the early stages) is uncommon. Sometimes muscle destruction is caused by an overlapping autoimmune disease called dermatomyositis or polymyositis. If your rheumatologist has not tested you for those diseases (with blood tests and EMG, possibly muscle biopsy) then you might want to ask about it because the treatment would likely be different than what you are taking for scleroderma.

Also, if Rituximab is not working for you, you might consider asking about adding a new medication or switching drugs altogether. It is definitely hit and miss for scleroderma patients. What works well for one might not work at all for another. If you search the archives of this site using any medication name as your search term, you will find MANY discussions about people's experiences with those drugs. Although Rituximab is sometimes used, it is not usually the first-line drug. Depending on your symptoms and types of organ involvement, you might be given Methotrexate, Cytoxan, or Cellcept. EUSTAR (the European scleroderma research body) has made recommendations for treatment of all of the manifestations of scleroderma. For diffuse skin involvement, they recommend Methotrexate. From reading the stories on this board for several years, it seems that most people with diffuse disease and/or lung involvement respond well to Cellcept. A lot of rheumatologists feel that Cytoxan should be the first-line treatment for lung involvement (and that's what EUSTAR advises too).

Anyway, you sound very proactive in your treatment so I'm sure you're making the right decisions for you. Just wanted to mention that there are many other medications out there that are very effective for some scleroderma patients. If you're still progressing rapidly, then maybe it's time to explore other options.

Zoe

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You are absolutely right, Joe123! :)
I am on Methotrexate, Rituximab and Prednisone all together!!! All the drugs, you are talking about are standard treatment before RTX, but I had no time to try for 5 years. My face was changed only in 3 weks time this february, The photo you see is just an year ago - now I am like 60 years old woman. I past the 1st and the second stage for 10 onths. Just for 5 months there are new changes, even my blood test is almost perfect!!! My skin is better, but inside it is worse. I am going into the atrofic stage now. The doctors say, if the skin improves, it means the SCL is under control - well, now we know it is not 100% true. Yes I have MRI, CT and much more med test - almost perfect!?! It is very important WHO is doing the test and WHAT they are looking for? And HOW to search for changes. Now we'll gonna make a double check for all organs again. I don't need to loose my lungs to make somebody believe that it hurts and they are changing quickly. Yes, maybe now somebody will make the biopsy of my kidneys and lungs. MAYBE, but I'll not gonna wait any more, thinking it "is uncommon", because this is my body and I want all and I don't want to survive only, I want my life back!
The European med. system is absolutely different from USA. I can not make my own choice about doctors. It works only with "cash" and contacts. If you want somebody - you pay cash, but it is not a solution, because if you need a serious treatment who'll gonna pay the bill? Our EU low system is different too, so people dying till fighting with doctors and hospitals. In Uk the doctors work very quickly, in Germany too. France is horrible, even the french gays are one of the best. Spain.... well! :).... Spain is always different, especially the last 2 years. I am in love with this country - the best people I've ever seen in my live! but the system.... is not working at all. I was waiting for treatment 2 months, after the diagnosis SCL, just because nobody believed it could progress so quickly - for weeks and months.
You could not stop RTX - it lives in your body for a long time. These are proteins from rats, killing you Beta limfa cells. I refused to repeat the infusions till I have no full body check again - I want to see what is changed in my body - it works or not? as I don't feel better 5 months later the first infusion.
That's why If somebody has a pain - go to the doctor! No panic, pls! Just don't waste time thinking "maybe", "it could not be..", etc. Not everybody has a pain in the spine but if there is a pain it is serious and dangerous and need doctors and med. tests.
There is always plan B and it is up to me - what I'll gonna do to help myself! I am the person who takes the final decision, not the doctors. They are well paid professional staff, but are just advisers. I don't believe in doctors 100% any more!!! I am working on my plan B. Next month a have a birthday. I'll make 42. Hope it will not be my last one and I'll be here after 10 or 20 years to help with my experience. Thanks a lot for all the advises I've received here!!! SCL is very complicate and everybody has to find the best solution for him/her self! Good luck to all of you here! :)

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OK, this is going to sound weird, but I link the burning pain I get in my upper back to low cortisol levels. It's a very long story on how I've come to that conclusion, but suffice to say, the pattern fits. A combination of acupuncture (aimed at correcting adrenal insufficiency) and caffeine at lunch (caffeine stimulates cortisol production) pretty much does the trick for me.

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That's all very interesting, sahara2013. I live in Canada so our system is also quite different than the American one. I don't pay directly for any of my medical care (though I pay indirectly through taxes, of course). I can't even imagine how much my medical tests and medications so far would have cost me if I had to pay out of pocket. There are negative things about universal health care though, especially the waiting times to see specialists and to have certain tests run (like MRI's). We can't choose our specialists either unless we can make a case for it to our family doctor who is making the referral.

I live in a big city and we have many hospitals here. There is an autoimmune disease and arthritis clinic at my hospital with scleroderma specialists. They certainly understand the disease and how to treat it (unlike many general rheumatologists, apparently).

I'm sure you know this, but Prednisone can be dangerous for people with scleroderma because of the way it can affect the kidneys. People with diffuse scleroderma are at high risk for renal crisis, which can be fatal if not treated quickly. If you need the Prednisone to be able to function, then I hope your doctor has advised you to check your blood pressure regularly.

Can I ask why your doctors are ordering MRI's and CT scans? Are they of the lungs? Do you get Pulmonary Function tests and echocardiograms done regularly? They are the best way to catch early lung involvement.

All the best,

Zoe

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