Patient Comments: Scleroderma - Describe Your Experience

Please describe your experience with scleroderma.

Comment from: Erin, 19-24 Female (Patient) Published: November 18

I was diagnosed with scleroderma when I was in elementary school. I started developing skin patches on my right calf, then my right thigh, my right buttock, and then the right side of my ribs. It had been itchy, and after a while, I lost fat in those areas with a large amount of discoloration. Being that I was only in elementary school, I grew up being very self-conscious and insecure about my scars. I, of course, had other problems, such as gastrointestinal ones, and I still do. But thankfully, the disease hasn't spread further or affected my internal organs. I am now 20 years old, and while I would like to say it has made me stronger, I still feel very insecure and unsure of what to tell those who see my scars and think they are bruises or burns. It could be a lot worse, but the external scars are so damaging to my ego. I am considering plastic surgery to see if they can't help fix the lesions.

Was this comment helpful?Yes
Comment from: JP, 45-54 Female (Patient) Published: November 18

I was diagnosed with CREST Syndrome in 1985. I have had many different complications. Leg ulcers have been my No. 1 problem. I have been doing well, and all my medications have been decreased until just this past week. I have been experiencing shortness of breath. I went to my regular physician and they checked my heart and pulmonary functions. I just went to my regular appointment for my rheumatoid arthritis (RA) and had taken along copies of all my tests. My doctor said they were looking at me like a regular person with shortness of breath and not a scleroderma patient. He increased my medication, and I am feeling better and hoping I didn't wait too long and have damaged my lungs. I just wanted others to be aware and not hesitate to call the doctor they see regularly for their scleroderma when you have serious symptoms.

Was this comment helpful?Yes
Comment from: Adelene, 25-34 Female (Patient) Published: November 13

Last year, I was infected with scleroderma. It mostly affected my arms and chest. The skin on the infected areas is red. I had an uneven skin tone. My finger and toe tips would turn purplish when cold. I even had difficulty in stretching my arms straight. It was very troublesome for me, as people had been questioning about my abnormal looking skin. So, I had been wearing long-sleeve clothes to cover up myself most of the time. I had gone for traditional, medical and nutritional healings. From that day forward, I changed to a healthier lifestyle. Besides, taking medicines by doctors, I began to take lots of nutritional food and supplements, such as fruits and vegetable enzymes, strath herbal yeast elixir, vitamin E, etc. I even took up tai chi lessons to keep myself fit. I applied virgin coconut oil and massage my arms every morning and night. I pray hard to God for healing day and night. Gradually, my skin condition began to improve. I realized that I have became a more optimistic and strong person. Although I have now fully recovered, I still continue to live a healthy lifestyle. I feel more confident with my looks now. I had faced lots of difficulties when having scleroderma, but it has made me a tough person now. I would also like to encourage people who are having such sickness not to give up easily. There is always hope.

Was this comment helpful?Yes
Comment from: csr, 55-64 Female (Patient) Published: October 24

I have scleroderma on my left lower leg. It started as a small patch after knee replacement and has gradually increased in size.It has been a most difficult situation but one I face head on. I refuse to let it keep me from enjoying my life. I have a small area on my right leg that is also beginning to form. I truly have not been advised as to anything I can do. I do believe that my esophagus is also involved, but was not aware until visiting your sight. Every time I have a flare, these areas become very inflamed.

Was this comment helpful?Yes
Comment from: Wilhelmina, 35-44 Female (Patient) Published: October 23

Eight years ago I was diagnosed with scleroderma, I was never ill never even had a real flu, then suddenly my fingers started to get really sensitive, I couldn't tie my shoe laces. I went to a specialist and he found out I had scleroderma. I thanked him for the medication and left, not knowing what to do next. I went looking for a licensed doctor who was also a naturopath, he did a very simple hair analysis and we found out I had too much, mercury, lead, silver arsenicum and tin in my body. After a detox of three months with DMSA pills and removing my amalgam my scleroderma stabilized. My fingers and my toes are a bit stiff but for the rest I can do everything. I hope I can help other people with my story.

Was this comment helpful?Yes

Patient Comments

Viewers share their comments

Scleroderma - Symptoms and Signs Question: What are your scleroderma symptoms and signs?
Scleroderma - Treatment Question: What kinds of treatment, therapy, or medication have you used to manage symptoms of scleroderma?
Scleroderma - Types Question: What type of scleroderma do you have?

Patient Comments are not a substitute for professional medical advice, diagnosis, or treatment. Never delay or disregard seeking professional medical advice from your physician or other qualified health provider because of something you have read on MedicineNet. The opinions expressed in the comments section are of the author and the author alone. MedicineNet does not endorse any specific product, service or treatment.

Alert If you think you have a medical emergency, call your doctor or 911 immediately.

Report Problems to the Food and Drug Administration

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.

Health Solutions From Our Sponsors