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Rebecca: CREST, Fibromyalgia, Sjogren's and Pulmonary Hypertension

So far I have been in the circling pattern, and we laughingly say, "Waiting for my finger to fall off."

Hospital Monitoring Equipment by Shelley EnszHi. Currently I am in a bit of trouble with my disease process. My finger has gangrene and the hand specialist says it needs to look like a mushroom before they will amputate.

Well folks, the pain is really bad but I have to tell anyone who is experiencing the pain of gangrene, we found that a coating of a four percent lidocaine solution really helps take the edge off the pain, so much that I have been able to get off the heavy opioid type medicine. Of course I coat the finger about every two and a half hours, keep hand or finger loosely covered as any little draft seems to set off more vascular spasms. This amazing little cream has been a godsend.

My other advice is at the first hint of pain and discoloration get to a vascular or hand specialist. Unfortunately I was on vacation and went to an emergency room thinking I might have a blood clot. They only did the ultrasound from wrist to shoulder and said, "Well it's just your Raynaud's, deal with it." In the three days it took to get home, it was already gangrene. So far I have been in the circling pattern, and we laughingly say, "Waiting for my finger to fall off."

If anyone has any other information to help me I would appreciate it.

They won't say how long it will take before they can amputate as we assume every one is different but an estimate would be helpful! Until that time I'll take my medications, eat healthy and enjoy all the happy moments there are in life. We must not give up. Many others suffer much worse than we do but communication is key. There will never be enough research dollars for these rare diseases but perhaps with communication we can find similar threads, and help ourselves and our medical providers.

To Contact the Author

Email: [email protected]
Story edited 06-04-2010 JTD
Story posted 06-29-2010 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 Renae B: CREST, Sjögren's, Raynaud's

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