Hi, my name is Donna. I am a 40 year old female who has Raynaud’s and Scleroderma. I was diagnosed with Raynaud’s in my early twenties. I went to my doctor because my hands turned very blue when I was nervous, white when I was cold, and they stayed bright red most of the time. I was the only person I knew that had patriotic hands. I was also having terrible indigestion and my stomach was really bothering me. He sent me for an upper GI and told me that I had a peptic ulcer and Raynaud’s. He put me on a special diet for the ulcer and referred me to a neurologist. He gave me a complete physical, ran a lot of tests, and took blood. He confirmed that I had Raynaud’s and told me that Raynaud’s was a secondary disease and eventually I would get Lupus. He gave me a prescription for Procardia and Valium.
Over the years my fingers started breaking out with ulcers on my finger tips. In the beginning the salves the doctor gave me helped but the ulcers weren’t healing. My husband went to the drug store and got some black salve and we would put it on the finger that was broken out and it would draw the infection out. I was also soaking my fingers in Epsom salt or I boiled a pan of water with safeguard soap (because it is an anti bacterial soap) and soaked my fingers in that.
Over a period of time the ulcers were getting worse and worse until I had 4 or 5 fingers broke out at one time. By this time I was seeing a Rheumatologist and she had me soaking my fingers in betedyne and dressing them with an anti bacterial salve. The pain was unbelievable and I almost lost a finger as it wasn’t healing. My Rheumatologist sent me to a plastic surgeon who gave me samples of IntraSite Gel (made by Smith & Nephew) and I swear by it. He told me that it helps some but not for everybody. Now if a finger starts breaking out I start using the Intrasite Gel right away. My pharmacist now carries it for me. I missed a total of 6 months of work because of the ulcers.
Through out my twenties I was still having problems with my stomach and bowels. My internist ran several tests and found out that I had gastritis, and a spastic colon. I was also experiencing panic attacks while driving. He took me off of valium and put me on an anti depressant which was Buspar. In my early thirties I started having problems standing up from a sitting position. It was like my hips were locking and I would have a problem standing up. I made an appointment with my internist and he ran some tests and took some blood. He called me and told me to come into the office. He told me that I had Scleroderma and I was devastated. I have a friend that has scleroderma with a couple of other things with it. She has been hospitalized several times and has cheated death several times. I was scared to death.
The first rheumatologist my husband and I went to told us that basically I was going to die it was just a matter of time. He gave me a prescription for Penicillamine and told me he would keep me as comfortable as possible and to come back in 6 months. Needless to say I was in tears and my husband told him that he didn’t care for his bedside manner at all.
My friend who has Scleroderma referred me to her rheumatologist and I made an appointment to see him. He was a very cheerful man and he made me feel very comfortable. He explained that I had Scleroderma but in the CREST SYNDROME form. He told me that each letter in crest stood for something. The C is for calcium which my body produces to much and it comes out through the skin in a white chalky form. R is for Raynaud’s....E is for Esophagus which means you have problems swallowing. S is for Scleroderma. T is for telangiectasia which is red spots on my face, lips, tongue, hands, and arms.
He answered all my questions and explained everything in great detail. He would show me what my fingernail beds looked like under the microscope and show me different things about the Raynaud’s. He also told me that my recent weight loss of 40 pounds was from the Scleroderma. Every time I had an appointment for my 3 or 6 month checkup my rheumatologist had an intern with him. He told me that he wanted the interns to see my Raynaud’s because all they get to see is a picture in a book. He told me that I had Raynaud’s worse than anybody he has ever seen.
One morning I got up and I couldn’t walk. My knees were killing me. I went to my rheumatologist and he told me that I had osteo arthritis in both knees. He gave me 2 shots of cortisone in both knees and told me to avoid going up and down stairs. Then he dropped the bombshell on me and told me that he was moving back to his hometown and starting his own practice. I was devastated. He recommended me to another doctor who he felt was the best.
My rheumatologist has tried several beta blockers. I took procardia for years and it started making my feet and ankles swell and causing terrible headaches. She started experimenting on me with several different beta blockers. We would try one and if it didn’t work after 3 months we would try another one. Now I am taking minipress to help blood circulation, and busbar for stress.
For the last three years I have had at least 6 to 8 shots in my knees and finally my rheumatologist sent me for physical therapy. I learned how to walk without putting stress on my knees and I avoid steps as much as I can. When I walk it is embarrassing because you can hear a noise coming from my knees. It sounds like there are rocks in me knee rubbing and rolling around. I also take ultram for the pain. I have crusty sores in the corners of my mouth that won’t go away. I have lost several teeth because they abscess.
I take so much medication that when I get an infection in my body it gets really bad before I know anything is wrong. I don’t have tears when I cry which is really frustrating and I have severe dry mouth. I have trouble swallowing and terrible indigestion. I prop myself up with pillows when I go to bed and I take Prilosec which helps. I frequently get a pinched sciatic nerve and I take cyclobenzaprine which is a muscle relaxer which really helps. I have arthritis in my joints and I take a 5 grain aspirin and naproxen for that. My ankles and feet swell occasionally and I take hydrochlorothiazide which is a water pill for that.
I take busbar which is an anti depressant so I stay in a positive mood. I just quit taking Amitriptyline at bedtime because I was having problems sleeping. My hands and fingers stay swollen and I have a hard time making a fist first thing in the morning. I just got over a bad kidney infection and had to stay at the hospital until they could get my fever down. They pumped me full of antibiotics and fluids before they would release me.
I was depressed for months when I first found out I had scleroderma because I have a friend that has it really bad. I don’t know how she makes it sometimes. I quit feeling sorry for myself and told myself that nobody has a guarantee on how long they will live. If I die in 1 year or in 30 years I am going to enjoy each day that I have. I quit smoking a year and a half ago with God’s help. I have gained 45 pounds since I quit smoking so I am dieting to get the weight off. I make myself get up every morning and everything is stiff and hurts. I take a shower and go to work.
I have a great husband and two daughters 20 & 13. We also had a son named Joshua 12 years ago, who died after a week of life due to premature labor in my 6th month of pregnancy. I stopped taking Procardia as soon as I found out I was pregnant. We later learned that Procardia causes premature births. I also had a touch and go pregnancy with my youngest daughter who is 13. I bled heavily in my third month of pregnancy and was put on bedrest until this stopped. My ob told me that I was having a miscarriage. After the bleeding stopped I went back to my Ob and he told me that it was a miracle but my baby was alive and doing fine.
My husband has been depressed for the last couple of months because he tells me that he feels I am getting worse everyday before his eyes and he feels helpless. Sometimes it can be an emotional roller coaster. He wants to join a support group with other couples. If anyone knows how and where we can do that send one of us an e-mail.
I would enjoy e-mail from anyone who has scleroderma or raynaud’s. My husband would also like e-mail from any of your mates that don’t have the disease, so they can support each other. Our e-mail addresses are:
Donna’s e-mail address: redapril4@aol.com
Mark’s e-mail address: mrfixit39@aol.com
I look forward to hearing from you.
Your friend,
Donna
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