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Early Symptoms Of Crest

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#1 Buttons


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Posted 22 August 2007 - 08:17 AM

I have recently been diagnosed with CREST after suffering with Raynauds for approximately 15 years. At first this was only slight just one finger end would turn white, blue & red with some pain but it has gradually got much worse. It now affects both hands & feet and there doesn't seem to be a day whenI'm not bothered by it.
Had a number of aches & pains for last 12 months & so general practitioner eventually did blood tests & referred me to a Rheumatologist who did more blood tests, X-Rays he diagnosed me with Fibro but felt something else was going on & wanted me to have an Iloprost infusion to help Raynaud's side of things. Had this done in May but my consultant was on holiday so had to see this other one while in hospital. I am now under this new one because apparently he specializes more in Raynaud's he did further tests which show I had some mild tighening of the right side of my heart & also have a tightening mouth & Telangiectasia begining to show on my face.
I'm concerned because he seemed to sweep aside the fact I feel tired alot and have some awful muscle pains in my thighs - it actually hurts to sit because on the front of thight it feels very tight like an elastatic band pulled tight also have pains in hands particularly with thumbs & forefinger. These seem to swell lots in the evening & became stiff to move or grip things, this now aslo happens in the mornings & my feet & ankles are also stiff in mornings admittedly some days are worse than others.

Sorry this is so long winded but feel I need to explain to some one who might recognise these symptoms.

Can any one tell me how long it takes for this to develop? I do appreciate we are all different but it is to get an idea of what may happen.

It does worry me because I am a teacher and the amount of energy alone thats needed does make me wonder how long I can crry on.


#2 lizzie


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Posted 22 August 2007 - 10:35 AM

Hi JenSue, I was diagnosed with CREST ( limited scleroderma) about 16 months ago . The fatigue, muscle aches, swelling, etc sound very familiar to me. From my experience re the fatigue and muscle pains (which is not that much!) although the doctors have been sympathetic and have run tests to exclude other causes of fatigue such as underactive thyroid or polmyositis, there is lilte in the way of treatment for these things. In the US ( I am sure US forum members will correct me if I am wrong) they seem to use Plaquenil for these type of problems. I take from the fact that you have had IV Iloprost (and a general practitioner!)that you are not in the US?. I work full time in a job, which although probably not as intensive as teaching,does require a lot of mental and some physical effort and find that I manage OK. I find that work actually distracts me from the aches and pains , and I cope Ok with the fatigue while working, its more that I feel shattered in the evenings. Also the fatigue varies day on day and have periods of time when I feel almost normal. In fact have just joined the gym, and feelin some ways has actually helped the fatigue ( although have only been going for three weeks so could just be in a less tired phase). For me part of the coping has been to relinquish (more than willingly!) some of the domestic chores. My husband does most of the cleaning, cooking, ironing although I still seem to get the job of cleaning the bathrooms though.

#3 WestCoast1


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Posted 22 August 2007 - 06:11 PM

Hello Jensue,
I am sorry to hear about all of the things that you are going through right now. Sometimes the symptoms that we experience are all so jumbled together. A diagnosis (while not fun to hear!) is one step closer to getting the right treatment for you. I hope that you have a good doctor that you respect and trust.

Here is a link to some very helpful CREST links at the ISN:

Keep in touch~