I was off work pending a Medical Board after having two major neck operations. The scleroderma started in my feet and hands. I went to my doctor and he gave me injections of cortisone which helped for about three weeks and then the symptoms came back.
I must say that I was a very fit woman, walking about five kilometers every day, then suddenly I started having muscle pain in my thighs and a burning sensation running up into my buttocks when I walked. My fingers started to curl up and I could not wear any rings on my fingers anymore as they were so swollen.
Time and time again I went to my doctor, he was baffled by my symptoms and sent me to a neurologist. He diagnosed me with rheumatoid arthritis. By then my skin all over my body was getting tight and he then sent me to a rheumatologist who straight away diagnosed me with the scleroderma.
I had to go straight to hospital where tests were done to see if there was any damage to my insides, which luckily were okay except for my esophagus which had narrowed making eating and swallowing difficult. I am on a lot of medication for muscle pain, nerve pain and just about everything else.
As time went on I could hardly walk on my feet as the toes were also curling up. I had two surgeries on my left foot and one on my right foot about three months ago. The surgical cut on my left foot still won't heal. Now I am having pain in both hips. I have had a cortisone injection in my left hip which seemed to help some. Now I must go for the right hip. My arms and sides are so tight and hard (full of bumps) and my knuckles always have sores on them that just won't heal.
I am at the moment totally housebound. I am on antidepressants as the depression gets so bad that I cannot stop crying some days. The pain is so unbearable on some days that I want to curl up and die. I suffer from heartburn and the worst is that I cannot go for my walks anymore or do any sort of exercise.
I just hope there is hope out there, somewhere.
Email: [email protected]
Story edited 07-01-2010 JTD
Story posted 07-08-2010 SLE
Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
Difficult Diagnosis Stories
Heartburn (Reflux) Stories
Skeletal Involvement Stories
Skin Fibrosis Stories
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?
United Way of Central New Mexico
United Way of Snohomish County
See ISN News for recent donors, including Juliet Youkhana; and donations in loving memory of Jim Miller and Arlene Marie Petulla.
Click Here to Donate or Shop
or click on the floating green DONATE sclero.org button.
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to: