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Dee B: Limited Scleroderma/CREST Syndrome

I have suffered from Raynaud's for years and cannot stand the cold.

Coffee Cups by Shelley EnszI have no idea really when this disease actually started. I am fifty-seven years old and three years ago developed horrific joint pain in my fingers, wrists, shoulders, knees and ankles, weight loss, tiredness and generally felt downright ill. I was referred to a rheumatologist who referred me to the general hospital.

After blood tests, injections into the various joints, lung tests, gastro tests etc., I was told I had scleroderma. No explanation as to what this meant. I had never heard of it. Thank goodness for internet. I have since read up on the disease and am happy to say I am quite clued up. I now realize that the symptoms were always there.

I have suffered from Raynaud's for years and cannot stand the cold. Heartburn was always a problem and in the last eight or so years, I've had bowel problems which hospitalized me several times. I also have the red dots on my legs, hands, face and mouth which I presumed were something inherited. If they burst they bleed for ages.

I also had the problem with people saying I was a hypochondriac, as at that stage all the doctors I saw found nothing wrong with me, but I constantly felt weary and ill.

I have been with the hospital some two odd years now and on lots of medication and at first felt worst than I ever had, but now I am coping and a lot more mobile. I still have terrible fatigue, early morning joint pain, turn blue in the cold, and get heartburn if I forget to take my medicine but I am certainly far better than I was. I must go to the hospital every month, but it is better than the awful pain I suffered.

I wish there was more education on this disease as very few people seen to know anything about it. When I tell others what is wrong with me, they are horrified and think its some kind of killer disease or even contagious. It is so complicated to explain that I now print out the information from the internet and give my family and friends a copy so they can read for themselves. I still have my good days and I have my bad days but am managing at the moment.

~ Update 10-17-09 ~

There is so much I want to add to my original letter after reading more of other peoples stories. I am certainly not getting better but wish I was.

My last trip to the hospital I had to have more blood tests this time to test my sugar and thyroid which seems to be overactive and I have had this terrible thirst lately and constant running to the loo. I wake up in the night three or four times with such a dry mouth I feel like I am choking. So now my sleep is disrupted.

I also did not mention that I lost all my hair because of the medication, which was devastating and I had to wear a wig for months. It is only starting to grow back now after a year of being bald. Through this and the fact that I have aged with lines on face, mouth upper arms and legs not to mention all the red dots I have all but withdrawn from my highly social life style, as I hate what I look like, I have no energy to go out to parties or dancing like I used to. I get exhausted and breathless in no time.

I live in South Africa which is a warm country but I am forever cold. When others are in shorts and T-shirts I am in jerseys and long pants. Shopping is a nightmare especially in malls and shops that run air conditioners. I go instantly blue and numb, which is extremely painful. Even slight cold conditions affects me.

I seriously don't remember exactly when all this started but recall years ago having ulcerated elbows and finger tips which took ages to heal so this must have been the beginning of the disease. Also the stomach problems that I previously mentioned. Really bad problems that have never really gone away. I still battle with that.

My joints were a more recent thing beginning in the last three years which finally convinced me things were serious. I ache every day worse in the mornings and evenings. Getting up is hell, going to bed heaven. I cannot bathe, I can only shower as I can't get in or out of a bath. I loved a hot bath but now it is a thing of the past. If I sit down I normally need something to lean on to get up and climbing is a no no. Sit too long and I have to rock myself into standing position.The knees and the shoulders are probably the most painful. My skin is so tight on my hands it shines and there is no give or elasticity in them with tight skin also on my lower legs and toes.

I am fifty-seven years old and thought that this would be the best years of my life now that my children are grown, and I could enjoy the grandchildren which I can hardly pick up, so this is not to be.

I still work and thank goodness, because I would be in dire straights if I did not. So as long as I can keep going that is what I have to do.

I so hope it does not get any worse and for all my fellow sufferers at least we are not alone because this condition certainly makes one feel as if there is nobody who understands the agony or pain we endure due to serious lack of knowledge and ignorance. This disease is a rare incurable problem that many of us have and it needs serious education for all doctors and people alike.

Please find a cure. That' s what we can hope for.

I would love to hear from anyone in South Africa who has this condition, it might help to know we are really not alone.

To Contact the Author

Dee B.
Email: [email protected]
Story edited 09-02-09 JTD
Story posted 09-23-09 SLE
Story update edited 10-17-09 JTD
Story update posted 10-21-09 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
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ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

Go to Del: Deaf with Systemic Scleroderma

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