Hi, I was diagnosed with CREST (Limited Systemic Scleroderma) by a rheumatologist in 2006. This wasn't really a surprise to me as my mother was diagnosed with diffuse scleroderma in 1998 and my symptoms had gradually become more evident, particularly my Raynaud's. We also think that my grandmother had CREST.
I have all the symptoms (C-R-E-S-T), but they are all fairly mild except the Raynaud's. Medication keeps everything at bay. I am on cardizam and Nexium.
My main annoying problem is the fatigue. At times I wake up feeling like I haven't slept. I have always been an early to bed girl, but it doesn't seem to make any difference how much sleep I get. I work full time as a teacher and by the time I come home, I am almost ready for bed.
In the last five months my muscle pain, particularly in my legs, has increased greatly, to the point that I have started on anti-inflammatory medication called mobic. The problem is I have had two severe reactions, swollen hard legs with a vascular rash to the knees. Because I was overseas during one of the reactions, my rheumatologist had already worked out a plan of action which was prednisone until I returned to Australia. Whilst my symptoms decreased almost immediately, my weight also increased. After being on them for about three weeks I had experienced enough and weaned myself off them. I am waiting for my visit in about six weeks to see my rheumatologist. Of course my aching legs returned in about a week after ending the prednisone. I assume my doctor will try another anti-inflammatory.
I am a member of the N.S.W. Scleroderma Association and regularly attend their meetings with my mother. I find these meetings a good source of up to date knowledge about scleroderma as well as first hand experience and guidance to possible concerns I have. It is great to be able to speak to a group of people who know exactly what you are going through. My general practitioner is also very good.
At my meeting this month, we had a guest speaker from Arthritis N.S.W. Her talk was about something called fibromyalgia. I have never heard of this condition but as I listened to her talk, I was amazed at the number of symptoms I have. Every time a symptom was mentioned, my mother kept looking at me and saying 'that's you'. I am very surprised that my rheumatologist has not picked up some links. My symptoms are:
1. The aching legs and body pain
2. TMJ pain—I wear a mouth splint every night
3. Bowel disturbances showing some aspects of irritable bowel syndrome, particularly excessive flatulence and a bowel that can be so easily upset which results in instances of mild gastric problems
4. Memory problems—this has begun to affect my work and I have been taking a health store supplement to increase memory for about five months
5. Some signs of mild depression
6. Excessive fatigue
I would be very interested to hear from anyone who has scleroderma and also fibromyalgia.
I feel that I am very lucky that I am able to work full time, but I do have a concern that my condition is still very active and I am not sure what or how severe my symptoms will be when it finally does slow down.
I am very fortunate with my diagnosis as my mother was given about five years to live in 1998 and was told to get her affairs in order. The doctors are amazed that hers is so slow. She does have her really off days, but she is able to live a fairly active life.
I remember saying to my doctor that I was so grateful to have the good one and not the bad one. I am not prepared to let this disease win. It is annoying, it is a nuisance and it is painful, but I won't give in.
I would like to give everyone an update of the treatment I have had for my Raynaud's. At my last entry, I was waiting to see a new rheumatologist. She arranged for me to have an Iloprost infusion. This involved going into hospital for three days and having a drip of the Iloprost for six hours each day. The Iloprost is designed to assist circulation and allows blood to get to those areas (particularly fingers and toes) that have bad circulation, ulcers etc. The only setback was the severe headaches that are caused during the infusion. Everyone is different, with some patients getting nausea. Once the drip finished for the day my symptoms vanished. I did develop a cough which has turned into mild asthma and I am not sure if this is related to the infusion. The drug information does identify increased cough as one of the symptoms of the Iloprost.
It is now one and a half weeks since I had the iloprost infusion and I am very happy to say that my pain has gone in my hands. While my hands are still cold and a range of colors between red, white and purple, there is no pain.
I would recommend this treatment as a significant option for those of us who are suffering the challenges of a cold winter.
I have been told that this treatment is available every six months, so if the wonderful results I am having begins to wear off, this treatment might be an option for me next winter.
Email: [email protected]
Story edited 05-24-08 JTD
Story posted 08-22-08 SLE
Story update edited 08-26-08 JTD
Story update posted 10-06-08 SLE
Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
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