Told this is fibro I believe raynauds? - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Told this is fibro I believe raynauds?

3 Replies

This with many other symptoms

3 Replies
Patr1c1a profile image
Patr1c1a

That’s what my hands look like and I was told Raynauds.

in reply to Patr1c1a

Thankyou yes I think along those lines too but need a doc to to get some help. Helpful thankyou

Patatie50 profile image
Patatie50

I can't tell much from photograph, though it appears your nail beds have a slight discoloration.. Raynaud's can be difficult to diagnose...or it was, in my case. My first symptoms were unexplained swelling in hands and legs; next, unexplained ulcerations of fingers, toes and one toe that swelled to twice its size. Suspected Gout which is very rare in females. More weird symptoms, leading to a suspicion of Connective Tissue Disease. First hospital stay with no conclusions. Next, fingers began splitting, cracking. Lost strength in my grip--both hands. Second hospital stay spent having probes in my arm , leading through venous system and into heart to look for connective tissue disorders. Also, Anti-phosphoid-lipid tests...Inconclusive. In fact, all the dozens of tests were considered either "borderline ..no real conclusions. These symptoms lasted 6 years. I was very sick for a long time. Finally,my doctor began treating me with Vasotec (An Ace blocker, I think). A year later I got pneumonia; then my hands, feet, tip of nose and ears turned deep purple. Rheumatologist finally had a diagnosis of Raynaud's Phenom. Began taking Procardia XL 60 mg along with continuance of the Vasotec and I slowly began to heal! The following year, I had a stroke due to a blood clot to the brain. Doctor put me on Warfarin. That is when I truly,finally got well.

The point is this: Sometimes it takes a good specialist who will listen to you, earn your trust and won't stop researching plus trying a variety of options until something works. Having a doctor who is not threatened by asking other specialists, and willing to research all alternatives is essential.

Think about these questions: Do your hands "blanch" (turn white when exposed to changes in temperature... especially outside temperature drop? Do they ache for no reason? Or, do they turn deep bluish purple? Do they ulcerate if left untreated? Do you experience splitting around nail bed s at finger tips; coldness in hands, feet, tip of nose? Do you have migraines, or other type of unexplained headaches daily? Keep researching on your own, ask questions and don't give up. If you not feel comfortable with your current doctor, ask for a referral to a specialist. Finally, be your own Advocate. No one else knows you better. Good luck.

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