I just have the sweating but it is anytime anywhere, not that much at night......no burning, except my tongue...lol Hope you find some relief.
Hugs
Beth

Yes, I have the burning sensation and my skin is sensitive to touch. With Systemic Scleroderma you can have neuropathy (nerve damage) which I have. My Scleroderma specialist prescribed Lyrica for it, which helped greatly. The only thing about Lyrica though is it can make you gain weight. My neuropathy got so bad until I had to take it anyway, however I am doing much better and I am now on a low dose which is not so bad.

Best of luck to you and God bless!!!

I woke up with it 4 times last night. Misery! Once I went in to the bathroom, turned on the light, and discovered that my hands were cherry red. So it's not my imagination. And this waking is despite taking a double strength cup of chamomile tea and 2 Benadryl capsules at bedtime! Apparently I need something stronger. My sleep specialist is no help at all. He simply said to take Tylenol PM at bedtime. That's acetominophen plus Benadryl. I refuse to take the acetominophen because of my liver inflammation. That's why I've just been taking the separate Benadryl. I think I need to get a new sleep specialist.

have you tried melatonin to help you sleep?

Yes, I did, and it helped somewhat. But then I read that it can worsen immune system cancers. I have monoclonal gammopathy which is a precursor stage to multiple myeloma, which is a cancer of the plasma cells of the immune system. So I had to stop taking it.

Hi, I just wanted to reply to Gardener21, I find your comments very interesting. You have probably read my earlier history, about all the immune problem in our family, my granddaugher with Lupus IV, my daughter with Lupus & Szogrens, (sp), me with undifferentiated and Szogrens, and then my mother who I self diagnosed as having systemic scleroderma because of all her problems, including ATV (bleeds -watermelon stomach), crazy skin pattern on her legs, a back that has just fallen apart, but God bless her she is 77 in May if she makes it, but the interesting part, something I just learned from you, Gardener21, is she was diagnosed with multiple myeloma 5 years ago, a doctor told her to do whatever was on her bucket list, another doctor told her it was probably the gammopathy, I have read the papers, and I have the proof from doctors at Cleveland Clinic, but she is still here, suffering to be sure, and is this all of our futures? pretty bleak! To make myself clear, you have enlightened me, that all this stuff is linked!!!!!! Thank you.
Sitback and listen!!!!! I am learning a lot from fellow sufferers. I think I will go and have a skin biopsy to determine the diagnosis of scleroderma. One fabulous doctor from Mayo said I have only one feature of CREST, the E, even though my hands are getting lumpy and very painful to move them at all - both hands. I have been on the Benadryl roller coaster for itching and sleeping, and thank God for it, but it dries me out and not good for my eyes which give me a lot of trouble. Keep the faith and keep writing!!!!!

I saw my new cardiologist this week about my newly diagnosed cardiomyopathy. And yes I have the anticentromere antibodies which can cause it, and yes, I have monoclonal gammopathy which can cause it via amyloidosis, but I did not think it was advisable to make an assumption that either of those must necessarily be the cause, so I decided to scour the internet as to what things could cause this sort of restrictive cardiomyopathy. What if something with a TREATMENT might be overlooked by such an assumption? So I made my list, and of course scleroderma and amyloidosis was on the list, but I found out two things with treaments were also on the list. One of these was hemochromatosis, and I recalled how my mother had a bronzish discoloration of her forehead which she referred to as "mask of pregnancy." Trouble is she wasn't pregnant when it came on, nor was she taking any hormones. When I looked up images for hemochromatosis, I found one that looked just like the mottling that she had on her forehead. It's hereditary.

But I haven't developed any such skin darkening - not yet anyway.

Then on to the other one on my list: Fabry's Disease. Again genetic. Females can be more mildly affected than males. I recalled that this one had caught my attention when I first developed the burning in my hands, but I have been to three neurologists about it and none of them thought fit to test me for this Fabry's. So for the second time I went down the list of signs and symptoms for Fabry's:

Burning hands and feet: both me and my Dad. He was numb up to his knees by the time he died. His mom used to complain bitterly about the chronic pain in her feet. My feet started hurting and burning in 1985. The hands started in 2002.

Ringing in the ears, progressive nerve deafness. By the time Dad and his mother died they were both extremely deaf with hearing aids for both ears. I have some documented mild high frequency hearing loss and constant ringing in both ears.

Arteriosclerotic problems/ cardiomyopathy: My Dad had early coronary artery disease with his first MI at age 58. I have the cardiomyopathy. His mom died of a series of strokes. All of us had/have high cholesterol - mine persists despite a low fat diet and Pravastatin.

Angiomas, telangiectasias: I don't recall if Dad or his mother had any of these, but I do.

History of abdominal cramping & episodes of explosive diarrhea - yep for me.

Some muscle weakness - some for Dad and me, each.

Occasional leg swelling with pain, chronic ankle edema. Both for me. at least the latter for Dad.

Major organ damage. Dad had damaged Kidneys, liver, and pancreas toward the end. They didn't know why. I have some slight kidney damage according to some mild proteinuria, and some liver inflammation showing up on PET scan. Dad's maternal grandmother died of cirrhosis of the liver even though she was a teetotaler - says so on her death certificate.

Raynaud's - yes for both Dad and me

Heat/cold intolerance - yes for me at least. I'm only comfortable between 74 and 78 degrees.

Joint pain - yes for both dad and me

Elevated erythrocyte sed rate. Yes for me at least.

Hypothyroidism - yes for me at least.

Osteopenia - yes for me. I'm assuming Dad had it too because he ended up with a spontaneous fracture of a cervical vertebra toward the end.

Corneal arcus and whorl deposits in the corneas / early cataracts: My dad had corneal arcus so bad that it gradually clouded even the central corneas to some degree, though it didn't affect vision particularly. He developed cataracts in his 50's. He also had the whorl deposits. They can be caused by the Amiodorone he was on for his heart, but they can also be caused by Fabry's!

Hmmm. A lot of these can go along with scleroderma, but they REALLY fit Fabry's!!!!!! Especially the nerve deafness, ringing in the ears, and the burning hands and feet.

Well, I took my list in to the cardiologist, and the upshot of this is that he has referred me to a Fabry's specialist for genetic testing, and is also mailing me an order for the hemochromatosis tests. I doubt if the hemochromatosis tests will be positive, but I can't say that for Fabry's now that I've compared the list to my own symptoms. My visit to the Fabry's specialist will be on April 29.

Meanwhile I've been reviewing the treatment of Fabry's. It's a good thing that the National Health Reform has made lifetime caps on insurance benefits illegal, because the IV infusions to replace the missing enzymes in Fabry's cost $250,000 a year every year for life! At least it's treatable, and can even reverse some of the damage of cardiomyopathy caused by it. The same can't be said by cardiomyopathy caused by scleroderma or amyloid. Or perhaps I'm grasping at straws.

Yes I do and I just started taking Benadryl. Gosh I read all of this and I just want to cry.

Don't cry violet. Though scleroderma can cause some of these things, I think maybe most of them in me are being caused by something else, something hereditary. I just have to find out what.

I had the blood drawn for the hemochormatosis tests last week, and am waiting to hear on those. If those are negative then we proceed with the much more expensive genetic tests: for Fabry's, and inheritable transthyretin amyloidosis. My cardiologist hadn't mentioned the latter test to me, but I found out that the doctor at Johns Hopkins Center for Inheritable Heart Disease wants to include that one. And now that I look that one up I realize that it could account for every single one of my father's and my signs and symptoms. And if I had my "druthers" I'd rather it be inheritable transthyretin amyloidosis than primary amyloidosis from my monoclonal gammopathy paraproteins. The inheritable version is potentially curable via a liver transplant. But the primary version is not very treatable by any means. The high-dose chemotherapy, for the primary version is very risky - could cause my death in the process, and might only give a temporary remission.

On the other hand, because of my heart damage, I might no longer be a candidate for a liver transplant. I sure wish my second neurologist 5 years ago had ordered the genetic testing as I had wanted him to. He had even suggested that my neuropathy might be genetic, but refused to order the testing. I'm sure I would have been a better candidate then for such things as high dose chemotherapy or liver transplant. It rankles to think of the delay!

Thanks for listening to me vent! I guess I sound obsessed, but it's easy to be obsessed when you have had burning pain awakening you from sleep up to 4 times a night for years. I need to get to the bottom of it. And I need to know for the sake of my son, who is still young (24), and may have inherited this thing which seems to manifest beginning in midlife.

Any of you who have the burning pain but no skin hardening yet, really ought to ask your doctors to consider the possibility of Fabry's, and amyloidosis because the signs and symptoms of these are so very similar to those of scleroderma. It can be very easy to mistake one for the other. In fact just yesterday I read a case report where a diagnosis of sine scleroderma had to be revised to that of amyloidosis.

The reason that the signs and symptoms of all three are so similar is that all 3 are deposition diseases. In scleroderma what is getting deposited in the skin and various organs is collagen. In Fabry's, it's globotriaosylceramide. In Amyloidosis, it's amyloid. And though hemochromatosis has somewhat fewer similarities, it, too is a deposition disease. In that one, excess iron is getting deposited. And all of them can cause the restrictive cardiomyopathy as well as damage to other organs.

Thanks for listening to me vent. It's just hard waiting for these tests.