Scleroderma Support Group

Hi, I was diagnosed in 5/06 by doctors in Mayo Clinic and University of Minnesota,so i no longer questioned that I have diffuse systemic scleroderma.The inflammation started in my right hand and moved up to below my elbow. Then it moved into my left hand and up to the elbow. I also have it in my feet and started getting in my neck and face. But I am getting good benefits from a homeopathy school that offers their services at a discounted cost. I still am monitored by my Uof MN doctor, but he has given me his ok about using this alternative medicine, and is supportive. I tried all the traditional meds with no good results.I have stayed much healthier without the meds,than the doctors predicted or thought. I also have researched nutrition, exercise, and go to therapy to work on my depression and relaxation therapy.I know how desperate I felt when I was told of this illness, so please try not to believe that the worst will happen. Each case is individual, and there are many things we can do to start the healing process. Take care and if you'd like I would be glad to share what I am doing,and what has happened to me. Toshie

Hi,
I have diffuse Sclero. and I had internal problems for about 14 years before my hands started swelling. My hands have been swollen for a year, the ends of the fingers look shiny, and I have trouble stretching my thumb and fingers apart. I drop things a lot, and it hurts if I move my wrist while grasping something.

Karen

Hi I have scleredoma too. I have been having swollen hands and some kind of lesions on fingers. I have raynauds lupus and possibly scleredoma. Yikes I have fibro cfs and myofacial pain too. hugs

In 1986 2 months into pregnancy, my feet and ankles swelled, toes went numb, and my fingers swelled to the point that I could never again wear my wedding ring. I developed telangiectasias on my face that were initially diagnosed as acne rosacea. By about a year after the pregnancy ended, the ankles had mostly de-swelled, and sensation mostly returned to my toes. But the finger swelling was permanent. I had to buy a new and larger wedding ring.

I was stable at that level until 1997 when 14 days after a flu shot, I developed rotator cuff inflammation in my shoulder which lasted for 3 months until I consulted a rheumatologist. He found my ANA to be 1280, and said I was a lupus suspect. Then the ANA went up to 2560. He gave me a steroid shot in the arm, which resolved the rotator cuff inflammation. During that summer, though I developed a tendonitis in my elbow. That had resolved by fall.

That fall, I could not convince my GP that the flu shot had triggered autoimmune disease. He insisted on giving me another. Bingo, 14 days later I again had rotator cuff inflammation, this time in the shoulder opposite the injection. After delaying 3 months, I again had to have another steroid injection. No more flu shots after that. Much later I was found to have a delayed allergy to thimerosal which is used as a preservative in flu shots.

Then I was stable again until spring of 2002 when my right mid-humerus began to hurt. It got worse instead of better over the summer. In the fall, suddenly the right shoulder became so acutely painful that I was guarding it. It was diagnosed as a "frozen shoulder." At the same time my hands started burning and aching the same way that my feet had: first the right hand and then the left. The feet also became much worse, and the feeling started climbing up into my lower legs and forearms. First the right forearm and then the left. My fingers swelled very suddenly again, and became stable at the new size, requiring a 3rd and still larger wedding ring.

Sleeping became extremely difficult with pain all over, pressure points, and night sweats.

I have never developed any skin hardening. But since then I have developed gastric reflux, and food lingering in the lower esophagus, and flip-flop between constipation and diarrhea. I also developed a telangiectasia on one fingertip, calcinotic heel and elbow tendons, Raynaud's in my feet with tri-phasic color changes. My sed rate, c-reactive protein, and complement 4 are all elevated. My anti-centromere antibodies are now off-the-chart high - above the maximum that the lab is capable of measuring.

Because of the neuropathic pain, I ended up getting 2 skin nerve biopsies to check for small fiber neuropathy - 1-1/2 year apart. They show the nerves in my legs have morphologic changes typical of ill and dying nerves, and the second biopsy showed more of these morphologic changes, and a lower nerve density than the first.

My neck became restricted in motility, and an x-ray showed that at least a could of the vertebrae had spontaneously fused together. A PET scan showed inflammation in the spine, liver, and thyroid. That led to the discovery of 4 new herniated discs, and autoimmune thyroid inflammation (Hashimoto's?) with hypothyroidism. The liver shows multiple cysts and at least one angioma.

They discovered I have severe obstructive sleep apnea, to the point that I wake or arouse every 2 to 3 minutes. Sleep problem explained at last!

My most recent blood tests also show borderline anticardiolipin antibodies.

I still don't have any skin hardening, and am currently undergoing testing by a scleroderma specialist. Pending the testing he has given me a conservative diagnosis of "undifferentiated connective tissue disease with features of CREST". The next testing is to be an echocardiogram and pulmonary function test, both scheduled for Dec. 3.

I am finding that I huff and puff with exertion, and even get dizzy. I also get jags of coughing and when I do, sometimes taste the metallic taste of blood in the back of my mouth. I don't know whether it's coming from erosions in the esophagus, or from the lungs.

P.S. I have also lost all the hair off of my limbs, the lower legs have become very tender to touch, and I have had several bouts of mild phlebitis.

Oh, and Sjogren's also. A Schirmer tear test showed tear volume 1/3 of the normal minium.