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CREST Syndrome Disease

Feb 10, 2016 5:10 PM

Does anybody here have this, horrible & ridiculously painful disease?

Feb 10, 2016 7:52 PM

This makes me happy to know that no one does... At the same time tho, makes me incredibly sad & alone. I was hopeful to have at least someone to talk to about CREST....

Feb 10, 2016 8:06 PM

Even if no one specifically has this illness. It looks like a lot of the symptoms we all share. Never feel alone here. We may not share the diagnosis but we share pain. And a pain that not understand. So please tell us about your pain, how you feel, how it's changed your life. Any and all fears and concerns. We all can listen. Please talk to us.....

Feb 10, 2016 8:14 PM

Thanks newfibrogirl πŸ’— That means a lot to me.

Feb 10, 2016 8:30 PM

Your welcome.. That's what this group is all about.

Feb 10, 2016 8:47 PM

What is CREST? Care to enlighten those of us who have never heard of it?

Feb 10, 2016 9:05 PM

Of course, as I was confused & am still confused about it myself....
C-calcinosis
R-raynaud's
E-esophagitis
A-sclerodactyly
T-telangiectasias

Feb 10, 2016 9:07 PM

CORRECTION-

C-calcinosis
R-raynaud's
E-esophagitis
S-sclerodactyly
T-telangiectasias

Feb 10, 2016 9:13 PM

I have the R and the S - I am on hydroxychlor 200mg x2, Etodolac 400mg x2, Duloxetine 30mg x4, Hydroco/APAP 7.5/325mg, Amitriptyline 25mg, Trazodone 150mg, Propranolol ER 60mg -- there are no medications specifically for CREST... They give meds used for Lupus & Fibromyalgia...

Feb 10, 2016 9:45 PM

Do you eventually end up with all 5 or just have a combination to fall on the spectrum? It sounds rough :(

Feb 10, 2016 9:59 PM

I had to look up CREST Syndrome. I don't have it, but I do have some of the symptoms of it. I have hEDS. I have the Raynaud's and the problems with the esophagus.

Feb 10, 2016 10:03 PM

I have seen it with all the research I have been doing but wow they are giving you lupus meds.

Feb 10, 2016 10:03 PM

I looked it up too and I too have the symptoms but have nkt been diagnosis with any the illnesses

Feb 10, 2016 10:06 PM

I'm on the prequenil, cymbalta and I was on trazadone but it gave me too vivid dreams so they switched me to trazadone. I'm so sorry you going thru a disease that doesn't have enough info just like SjΓΆgren's syndrome and fibromyalgia.

Feb 10, 2016 10:20 PM

Thank you everyone for your words. It is rough. It parallels very much with fibromyalgia symptoms. The hope is that it doesn't progress in me over the next year & a half. IF it does, it will continue to do so, & with the S (can't remember how to spell it out πŸ˜•) portion, it is the hardening of my skin, tissues, & organs. Basically, a suffocating of life one organ at a time. If it gets to my lungs or heart- there's nothing they can do. It's frightening. It has not progressed in 8 months, thank God...

Feb 10, 2016 11:54 PM

I hope it continues not to progress!

Feb 11, 2016 1:24 AM

Auto I do not have CREST either but I have Polymyalgia Rhuematica and Myositis which I had not heard of until I was diagnosis. It seems we all have similar symptoms.... Severe Chronic pain. And our quality of life is a lot to be desired. One day at a time is all we can do. Celebrate the good days!

Feb 11, 2016 6:32 AM

CDNgirl37 & MySistersKeeper - thank you πŸ’— What Is Polymyalgia Rhuematica? What are the specifics affecting you? I am just as interested in everyone's trials & tribulations, as I am beginning to feel everyone here is about mine.
Yes, chronic pain is the same for all of us, it seems πŸ™ I am sending each of us, love, light, & healing thoughts! πŸ’—

Feb 11, 2016 6:34 AM

Painedlady, what were you switched from, instead of the Trazodone? And is it helping?

Feb 20, 2016 6:48 PM

Sorry I'm so late with my response, I'm switched to remeron and it does work.

Feb 21, 2016 12:03 PM

I will ask my doc if that will work with all my other meds. Thanks!

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