Patient Comments: Scleroderma - Describe Your Experience

Question:

Please describe your experience with scleroderma. Submit Your Comment

Comment from: Prairie, 45-54 Male (Patient) Published: September 27

I was diagnosed with scleroderma 9 1/2 months ago. When my symptoms initially appeared, I went from being able to run 20 miles a week to having problems walking down stairs. I was in significant pain and had woken up at night from the pain. I was having some difficulty swallowing. I was given blood tests (twice) and I have systemic scleroderma. I have very limited skin involvement so far. In my first month I was treated with a high dose of prednisone and my symptoms have diminished greatly. I am not on any specific medications at this time. I try to stay as active as possible and keep moving. If I sit for any length of time, my muscles will start feeling like they are atrophying. So, I have been getting 10,000 steps a day in and do 20 pushups every other day. I monitor my symptoms. Most people look at me and think I am the picture of health (right now I can run a mile under 7 minutes). But this is a very scary disease. If you are diagnosed, make sure that your doctor does baseline testing for heart and lungs and then follows up immediately if there is any change.

Comment from: NAN, Female (Patient) Published: June 10

I have had scleroderma for two years now. Cold water really bothers me now. It never bothered me before. Cutting up cold vegetables from the fridge or holding a cold cup of water is difficult. Also I have a lot of foot pain and I go stiff if I sit to long. I wonder a lot what the future holds for me and my diffuse scleroderma.

Comment from: schultzie, 65-74 Male (Patient) Published: November 17

I've had scleroderma since 1986. It was diagnosed after several occurrences of Raynaud's phenomenon. Shortly thereafter my fingers started to curl. After two weeks of research, I discovered that leaving meat out of my diet would help. I tried a vegetarian diet and to my surprise and joy the fingers straightened out in about 10 days. That's 28 years ago. You may have guessed, I'm still a vegetarian.

Comment from: faith, 45-54 Female (Patient) Published: September 11

I am 49 years old. I was diagnosed with scleroderma in April 2014. My arms started to itch badly, skin harden, and scarring after I had carpal tunnel surgery the later part of 2012 on both my hands. No doctor could tell me what was causing the itch. On a visit to a new hematologist she noticed my arms and asked what was going on with my arms. I explained to her the situation. She was the first doctor that could even tell me what it might be. She had me do extensive lab work and sure enough when she got the results it was as she anticipated; it was scleroderma. I have this sick feeling inside of me all the time. I feel tired all the time. My body feels cold, then hot, that I need to take hot showers to warm up my body. My toes and fingers are swollen and numb all day. My fingers and toes get white from being cold. My joints hurt. I have been dealing with this for 17 months and I wouldn't wish any of it on my worst enemy. To all that suffer from this disease chin up and try to live life to the fullest.

Comment from: Loretta, 65-74 Female (Patient) Published: January 14

I'm a 65 year old woman who was finally diagnosed with CREST syndrome (limited scleroderma) a year ago. My symptoms began with Raynaud's, then GERD, then a heart attack, later an enlarged heart and pulmonary hypertension. I had an infusion catheter which pumps the medicine Veletri directly into my heart. That along with Viagra has helped my heart shrink back from 98 percent to 51percent, so I'm able to breathe much better now. I also deal with scleroderma, my skin has numerous red blotches and skin eruptions with boney slivers. I was told I have internal rheumatoid arthritis and fibromyalgia, so I'm in pain quite often. My biggest problem is how this disease has affected my bowels. I seldom leave my home due to loose bowels that can erupt at any given moment. I am very grateful however, that I'm alive and my heart and breathing have improved with Veletri. I only hope this information will help someone dealing with these symptoms.

Comment from: Redfeaber, 45-54 Female (Patient) Published: March 21

I got my diagnosis of scleroderma today. I've had several hypertensive emergencies in the past month and my blood pressure has been running high for the past 4 months or so. I have severe stomach cramping, swallowing difficulties, heartburn, severe fatigue, muscle and joint pain and stiffness, and skin issues (it's difficult to describe, almost tiny blisters).

Comment from: allen, 65-74 Female (Caregiver) Published: November 08

My wife had scleroderma for many years before it was diagnosed. It first appeared on the skin, then she had Raynaud's phenomenon, then watermelon stomach which caused a lot of blood loss. It affected her esophagus, stomach, colon and lungs. The point of all of this is, do not have elective surgery at all costs. The effects of surgery especially with lung scleroderma can cause pneumonia and death.

Comment from: cupotee, 35-44 Female (Patient) Published: November 26

I was diagnosed with systemic scleroderma in November 2014. I had been having signs of waking up not being able to walk, not able to lift my hands, swelling in my face (especially around my eyes) and my wrists swollen and hurting where I couldn't lift anything. As soon as I was diagnosed it seemed to get worse. I have more pain than ever, legs hurting so bad I can't walk 10 steps without tears running down my face. This is a big life change and I hope that there is a cure for this because I don't like pain.

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Comment from: 19-24 Male (Caregiver) Published: May 09

My husband has scleroderma and it has ripped our life apart. We have 3 children, a 1 year, a 4 year and a 9 year old; he can no longer play with them or even hold his daughter. He was diagnosed 3 months ago but it started about last year and has quickly progressed. It started with his hands and feet in pain and changing color from white to purple. He has now lost all function of his right hand it is stuck in a curl position and his left hand is following quickly it is also in his legs. There are most days he can't walk. He is in pain all the time and lays in bed because that is all he can do. I feel sorry for anyone who gets this, I wouldn"t wish it on my worst enemy.

Comment from: lee, 45-54 Female (Patient) Published: March 13

I was told I had scleroderma in 2004, I was bed ridden for nearly 3 years. Two years ago I went on a course of chemotherapy, which has help me a great deal. I can move around and do things again. I have a bit of my life back, even though I will never work again at least I can do things. I keep getting bad reflux which ends up in my lungs so I am ending up with pneumonia; this has started about 4 weeks back. I am not sure what the next course of action is, I try anything that has worked for others and I have been on many medications, most didn't work.

Comment from: kelticlady, 45-54 Female (Patient) Published: November 29

I am 49 years old right now. I was diagnosed with scleroderma in 1992. Two years later, I was in the hospital with congestive heart failure. I really have not progressed much since then. I do have trouble with my hands and arms. They do not straighten out very well. I take a series of medicines: Cuprimine, Captopril, and Diltiazem. I do suffer emotionally and from depression. That has been the worst for me. I do feel lucky to be here today, and I try to be thankful for the time I have been given. I always get my rest.

Comment from: slick1, 55-64 Female (Patient) Published: November 18

In 1999, I was diagnosed with eosinophilia fasciitis. My doctor had me taking Remicade, which worked very well until I started having liver problems. I had a biopsy performed on the muscle, which showed that I had systemic scleroderma. I am now taking Cellcept. I have been taking it for only four weeks, but already my skin is looking better, and I am being told by friends and family that I sound and look as if I feel better. The Cellcept makes me very tired, but we will know more after it completely gets into my system.

Comment from: 45-54 Female (Patient) Published: August 04

I too was diagnosed with systemic scleroderma. It started with Raynaud's, since then have developed gastro intestinal problems due to the muscles in my esophagus not working anymore. I am undergoing testing for lung hypertension. I also have thyroid problems that have been taking med. for about 25 years. I also have been diagnosed with fibromyalgia. New research is suggesting that hormones play a big part in disease progression. I read where relaxin hormone slows the disease process. This is a hormone found in pregnant women and relaxes the muscles in turn keeps fibrosis at bay. I haven't been given anything that works yet. I can't take much medication due to lung involvement. I have found that sunshine and as much activity as I can muster keeps acute symptoms down. Good Luck and God Bless to all that suffer this crazy disease. I am 54 yrs old.

Comment from: dawn, 13-18 Female (Patient) Published: August 01

I'm 18 years old female, with scleroderma (local) at the left face. I was diagnosed way back 2006. Having this is so really difficult in my life. I feel so insecure to others, my self esteem is so low. I have no confidence in my self. It leads me to became a shy person. I wonder why I have this because when I was in toddler stage I didn't even have this. I pray that someday Scleroderma can be cured.

Comment from: refilwe T, 25-34 Female (Patient) Published: April 15

I hate it to my core. I have the most terrible marks on my body. My whole body cramps daily, with my legs being the worst. It feels like someone is literally turning my muscle around. I have this terrible pain in my heart that makes me stop whatever I'm doing. I can't stretch, bend, or even kneel down because of my skin being so tight.

Comment from: OBF1983, 25-34 Female (Patient) Published: November 29

I am 25 years old and was diagnosed with scleroderma in May of 2008, although my symptoms had started probably a year or so before that. When I first had trouble, I went to my GP, and she told me to cut back on salt and lose weight. Three times I went back to the doctor and got the same response, even though her advice wasn't helping. I was finally referred to a rheumatologist who ran numerous tests that all came back normal. When my skin began to thicken, and I developed ulcers on my knuckles, she sent me to a dermatologist. There, they did a skin biopsy and diagnosed me with scleroderma. It has been a really rough year. I miss a lot of work, I am in constant pain, and I just feel down a lot of the time.

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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.

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.

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.

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.

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.

Comment from: Brenna, 35-44 Male (Caregiver) Published: September 30

My dad has scleroderma, and it has attacked his kidneys. My auntie just died from scleroderma a year ago. The doctor who diagnosed my dad was shocked to hear that his sister also had the disease because it is rare to be in the same family, such as brother and sister. Seeing this disease attack my dad so drastically puts me in shock because my dad was always so healthy and hardly ever got sick. The physical effects it has had on my dad are: loss of muscle and weight, hardening and tightening of the skin, joint pain, struggling to breathe, blotches on his skin from kidney problems, purple hands and feet, and a huge change in diet to survive better and almost daily blood tests.

Comment from: Mary, 55-64 Female (Patient) Published: September 30

I have had scleroderma since I was 12 years old. I am now a 59-year-old female. It started with a small, white patch underneath my right eye. Over the 47 years, it has progressed down the right side of my face, my arm, leg, back, and stomach. I always seem to be able to tell when it spreads a little more. It's as though it has become live and itches.

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Comment from: Annie, 35-44 Female (Caregiver) Published: September 25

Hi, I'm from the Philippines. My 44 year old female cousin (from my mother's side) just died last week of scleroderma. She was diagnosed in November last year. The hardening of her skin and its spread throughout her body was fast and I guess the doctors here have no idea as to mode of treatment.

Comment from: ripeberry4, 65-74 Female (Caregiver) Published: September 25

My mother has scleroderma and she has had two fingers cut off is this usually what happens in the later stages

Comment from: Lyndsey, 25-34 Female (Patient) Published: August 29

I am 26-year-old white female who was diagnosed with UMCTD with a leaning toward scleroderma because my first symptoms were finger swelling along with Raynaud's disease. I spent a year in pain before I saw a doctor, and initially the doctors said my disease was progressing rapidly. I had a finger ulcer and had two pulmonary effusions, besides the debilitation of joint pain. I wanted to write however, to let people know that it is possible to deal with this disease-and to find the right doctor. My doctor has made it possible for me to stay off as many medications as possible and to give me back my life. It has been almost a year since I have had any serious complications with my disease, and I am working again and working on a graduate degree. I know that there is always a possibility of it getting worse, but all I prayed for was for it to be manageable, and I believe that if you get the right doctor and take an active part in your healing that it is ... manageable.

Comment from: Joan, 65-74 Female (Patient) Published: August 29

I got Raynaud's disease in 2001, and now I have the lung disease scleroderma. I'm getting the chemotherapy drug Cytoxan. I will get this until December, and then I will be tested again. If it doesn't work I will be going to Boston for an experimental drug. I have been on oxygen for a year and also have been on different drugs.

Comment from: Kenneth , 55-64 Male (Patient) Published: August 08

It has been years to find out that scleroderma is what's wrong with me. I've lost feeling in my feet; my fingers are numb, red and painful in the morning. I have trouble swallowing food at times. I have terrible knee and leg pain. I'm very tried most of the time.

Published: July 30

I am 18 years old, and I was told I had scleroderma in 2005. I always knew there was something wrong with me because I always got sick, was always tired, and just felt bad my whole childhood. It took years for a doctor to tell me what was wrong. I was sent to a specialist in St. Louis. They did a lot of tests. I get the pitted scars on my fingertips and my whole body has a swollen look to it. I don't like to explain the disease to people because they don't understand what I go through. I work two part-time jobs and go to college.

Published: July 09

I am 68 years old and was diagnosed with CREST syndrome 3 years ago I have been on medication called Diltiazem since them, but last year I had a bout with Raynaud's, when my index finger was very painful and became blue and hard. I was rushed to the hospital and given medication from a vascular dr. The finger finally healed and looks and feels very good; however about 9 months ago I started having shortness of breath especially after climbing stairs or walking the dog. I've had several echocardiograms and was then told I needed to have a right heart cauterization, which I had last week now I've been diagnosed with Pulmonary Hypertension which is a lung disease. I'm on oxygen and have now been put on a drug called Revatio. I just started taking this drug. Its side affects are for me mostly getting dizzy after during certain chores, since I just started taking the drug, I will be talking to my pulmonary specialist next week. I take the drug 3 times a day in 8 hr. intervals. I do not use oxygen when sleeping during the night. Hopefully with this drug I can get off the oxygen completely.

Published: June 26

I am 57 yrs old, four years ago, I start feeling tired, pain in the legs and hands, I had several blood tests and my Doctor said all my Lab work was normal, I went to my OBGYN and I told him the history of my problem with my family doctor no finding anything wrong with me and I have problems with headache, pain in the legs, swollen hands, difficulty swallowing, tightness of my skin-face looking very shiny and younger than my age, he recommended to see a Rheumatologist, this doctor sent me with a Dermatologist, I had biopsies of the skin and found out that I have Systemic Scleroderma, I was given Methotrexate and Prevacid for the heartburn, this medication affected my liver, at this point I was having problems walking , moving, difficulty swallowing, the Rheumatologist start giving me shots of steroids, and I decide to drop all medications, and visit an acupuncturist, it help me to move, I start walking again, and now I keep a good low protein diet, osteoporosis diet, salt diet, I exercise 45 minutes everyday and go with my husband dancing 3 hours every Friday, it helps me more than all the medications, and treatments I had before, I still have problems with inflammation in the hands, sometimes itching, tenderness of the skin, pain in the legs if I do not exercise. I notice that a good diet, exercise, drinking water and having a positive attitude has helped me to get better every day and continue a normal life. I never stop working or having fun with my family, specially my children. I take all kind of vitamins also.

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Published: June 25

I am a 55 yr old white female, my father had scleroderma and his hands, arms feet and legs were greatly affected, he died at age 42 with what they said was lung cancer but he had breathing problems a lot all the time I could remember. I was just diagnosed with scleroderma a month or so ago, was diagnosed with RA and lupus some 5 yrs ago and I have for the last year and half been being treated with mexrethrotate shots weekly. I also have many lung and breathing problems I have pneumonia every year and sometimes more than once. I suffer from loss of bowel problems and digestive problems. My blood pressure has recently been going up and down a lot. The only reason they now say that I have scleroderma is because my skin on my arm and legs has become so hard they can't put an IV in it takes about 6 to 7 tries to get one in me and they can't hardly stick me to draw blood. I am already looking at possibly needing oxygen sometime in the very near future. Everyone has always said how young I look for my age but it seems now it is starting to catch up at a fast rate, and my skin is looking older to quickly. I am very scared of what the future holds and how much time I have left at a fair quality of life. I try to always stay positive, because I love life and people. I would like all the info on this I could get, since there wasn't any when my father had it and dies in 1963, I just remember how pitiful he looked and how bad he hurt, and how cripple he became.

Published: May 28

A 24-year-old male friend of mine has scleroderma. He was diagnosed in high school when skin patches first appeared under his arms. There was no further development of the disease until a few months ago (he is now 24 years old), when the skin patches began to grow bigger. They have not spread to any other limbs. He is also tired all the time, works full time but is in bed most nights by 8 p.m. He also has a poor recovery time after climbing stairs while talking. Apart from this information, and some of it just from observation, he is very closed and will not talk about what's happening to him. The progression of his scleroderma is not typical of anything I have read on the Internet. His doctor diagnosed him with systemic scleroderma. He doesn't suffer from Raynaud's. It's so confusing.

Comment from: Cracker, 55-64 Female (Patient) Published: September 30

I was diagnosed with systemic sclerosis in 1988. Gastrointestinal symptoms have dominated my course with this disorder. In the last month, I have developed a sore tongue. Eating makes it worse, and it gets worse as the day goes on.

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