...finding this sight is so very helpful & comforting...however i have to admit reading about how bad this can get is ..terrifying... ...A couple of years ago i was in the hospital for 8 days with diverticulitis...It took months to even start to feel somewhat normal...A little over a year ago the dr. said he thought i had CREST Syndrome with rhum. arthritis...Did some research...decided it would go away if i ignored it.....well that hasnt worked out so well..
...The symptoms certainly decide what kind of day i will have. I have 4 of the 5 'crest' symptoms... It doesnt even have to be cold outside for the raynauds to flare several times a day. The pain seems to have several different layers, haven't figured out what all my 'triggers' are yet..seems like i'm discovering new aspects of this daily.
...The newest 'symptom' is cramping..in my hands, feet, legs, even in my back if i stretch wrong or turn too fast...is anyone else experiencing this? It really makes it difficult to play & lift my grandbabies...
...I am still trying to age gracefully....We will see how well that works... ~debi~
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nanadx20
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Not all of it applies to you. The contributions to the site cover a wide range. And if you have CREST, only some applies. I have CREST and I am 83. I have had it all my life and during many many years no-one knew what it was. Until Anne Maudsley created the Raynaud's & Scleroderma Association and stimulated research. This is a rare condition and it is very hard to fund raise for it and she has had to do extraordinary things to find the funds for research. Comparatively recently there has been quite a lot of research into this complicated disease. There is still much to know. The best position to have, in my opinion, is to know as much as you can of what is known (a lot is in the publication "Hot News" of the RSA) and do something about it when it applies to you. Looking the other way does not work.
Work with your Rheumatologist and your GP (even if you have to tell him/her about Raynaud's and Scleroderma, some know something but not quite). We heal slowly so don't delay.
I also think it important that I have as many activities as I can (and can do). While I am distracted I don't think about my condition. I am a member of the U3A (the university of the third age - you can find it on line). I am a member of many groups and I run a Humour Group (we have laughs). I am the National Co-ordinator for Humour Groups.
Enjoy life as much as possible. And become a member of the RSA.
Thank You Zenabb. I'm fairly new to this so it's reassuring to know there is somewhere to go to get information and support. Just the stuff about crest is scary to me, and I agree.. laughter always helps.~debi~
I have multiple autoimmune conditions inc crest.....i do not grow older gracefully, disgracefully more like!! lol
It is amazing how much 'dignity' you lose with this..I understand alot of information about these conditions doesn't apply to my circumstance, what does is certainly overwhelming...I'm grateful i have a family with a great sense of humor.
I have the same symptoms as well. Go into like spasms in my hands especially. And odd times in my back. Seems to be Gettin worse as well. But as for it bein warm or cold I still get flare Ups afew times every day. I sit with my hot water bottle in doors constantly. And if I go outside any where I have hand warmers disposibles . I wouldn't be with out them now. Good luck with getting sorted
I don't av a clue to be honest. Wish I did Coz id avoid doing what ever it was. Maybe its weight ad seems to happen when I iron or lift any thing. But don't lift much or iron as my arm and shoulder kill me. I can't use pressure at all as it hurts do much.
In the last 18months I have been in hospital 7 times with diverticulitis - which appears from nowhere, just a few hours notice from onset to beyond anything I can manage.
I have had raynauds for 30 years and was diagnosed with limite scleroderma within the last 10 years. No-one is saying that it is linked, does anyone have any experience assocciated with this?
I've had diverticulitis and colitis....this disease messes with everything..including your digestive system...drink-- Lots-- of water, watch what you eat, chew everything extra good....I was told to avoid anything with small seeds like tomatoes, strawberries, nuts ...eat yogurt,anything with probiotics.. ..hope this helps some.. ~debi~
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Strange
Potassium
Nere
Can anyone help me ?
Primary Raynauds not CREST
