Thread: Hello to all!
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Old 12-31-2012, 10:32 AM
Byoungda Byoungda is offline
New Member
 
Join Date: Dec 2012
Posts: 3
10 yr Member
Byoungda Byoungda is offline
New Member
 
Join Date: Dec 2012
Posts: 3
10 yr Member
Default Hello to all!

I am so thrilled to find this forum. I have been reading almost non-stop over the past few weeks and have found such a caring group of people. I feel comfortable sharing my journey and feel I will gain greatly from all.

My diagnosed ailments are Sjogrenes, Raynauds, GERD, and now Peripheral Neuropathy. My journal began about 6 years ago when my fingers were white and then an awful blue. The doc said it was Raynauds and began lots of tests trying to determine the correct auto immune disease. Finally after a couple of years it was determined to be Sjogrenes as well as GERD (which also included hiatal hernia, asthma and dry eyes, mouth). I was put on a Protonix (PPI), Procardia, Proventil, and Lasix and sent to a rheumatologist.

This last year the nightmare has begun. Started with not being able to tolerate the sheet touching my feet at night. They were cold "inside" but warm to touch. Doc said PN and started me on Neurotin. Then worsening symptoms. He just kept increasing dosage until I felt wonky all the time and didn't like my own personality any more. I've never had a great tolerance for meds so I began a quest to find alternative measures to no avail.

It's a nightmare to go to work each day when I can barely walk. I tried buying shoes with a wide toebox, then tried diabetic socks buts the texture hurts to walk on. I try to explain this to others and get "the look." After reading here, I know I'm understood.

Here's what I believe I need to start. Please add or steer me on a different course if needed.

Add Benfotiamine, Alpha Lipoic Acid, Acetyl-L-Carnitine. I already take fish oil, multi, B complex.

I want OFF the Neurotin as well as Protonix (PPI). I did stop the Procardia and now take Cinnamon capsules (it works and I can now make it through the grocery store without going white)!

ANY and ALL advice will be greatly appreciated. The pain is worsening and i'm sitting here at work right now with shoes off and dreading having to get up and even walk with my current socks.

Regards,
"Painful in North Carolina"
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"Thanks for this!" says:
Darlene (01-01-2013)