TWO LETTERS FROM MEMBERS  Donna   Tania

(from Donna)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; but they are 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 avascular 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 NSW 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. 1t 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 guesst speaker from Arthritis NSW. 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. I would be very interested, to hear from anyone who has scleroderma and also fibromyalgia.

Donna

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Hi, my name is Tania and I'm writing this letter for my mum.

In 1965, at age 21, my mum was diagnosed with scleroderma and Raynaud's  She soon underwent a sympathectomy on her neck. This didn't work and made her eyes  droopy. Despite this, mum was a caring giving person who never complained about anything, spending her years looking after my brother and myself at home, s(ince) work was too difficult for her .

Mum was diagnosed with CREST at a young age and she went through  the most agonizing pain every day. I only wished I could take that pain away. She was a volunteer patient at the hospital for doctors and interns. Over many years, she allowed them to conduct often very painful research on her in order to help others with this disease.

In 2008, mum had to have her leg amputated below the knee due to ulcerations which had become gangrenous and later she had another operation for a twisted bowel, a tremendous ordeal which involved serious and heart-rending complications. Her condition continued to worsen. She couldn't keep any food down or go to the toilet.
Nothing helped. The doctors said that mum's scleroderma had taken over her body. Nothing further could be done and mum went to the Claire Holland House, a hospice for the dying.

At 11.00 a.m. on 8th November my mum passed away at the age of 64. I stood there feeling helpless as I watched my mother take her last breath. My mum had gone but then also, so did her pain. Her face just glowed with beauty and all the marks on her from the scleroderma went with her as well.

My mum was my best friend and life just isn't going to be the same without her. She is survived by her husband Bob,.my brother Paul and his wife Libby, my husband Ricky and myself and 7 dearly loved grandchildren. She will always be in our hearts.

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