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Member Since 01 Sep 2008
Offline Last Active Jan 23 2014 01:40 AM

Posts I've Made

In Topic: Fibromyalgia Anyone?

22 January 2014 - 04:11 AM

I forgot to add I have very bad tingling in my hands, feet and lips/ tip of tongue.

Oh My Gosh, I also have tingling in my lips and tip of my tongue, also the tip of my tongue is now numb.. My tongue also swells and becomes rippled around the edges. (yes, I have been tested for many allergies). The swelling and rippeling usually happens with an anxiety attach and can last for several days. You are so far the only other person I have seen say they have the tingling mouth problem.


To answer other questions, yes, I have had my Vitamin D and B12 & B6 levels checked. All were low and I was diagnosed with pernicious amemia. I take B12 shots every 2 weeks and it in now in check. I also take 5000mg of D and also make sure I get 20 min of sun on my face and chest every day. 


I have removed dariy, soy, corn, HFCS, MSG, and several other things from my diet. I basically eat fresh fruit, vegetables and meat that I cook. I try to keep meals very simple. I also have added unfiltered apple cider vinegar (2 teaspoons a day) and raw unfiltered honey and cinnamon to my daily diet and I also drink cucumber and mint water every day.  I have seen a great improvement in some digestive issues that had developed.


Thanks every one for the conversation and replies.


In Topic: Fibromyalgia Anyone?

13 January 2014 - 12:53 AM

Thanks for the responses.

Gemini, I have been gluten free with a clean diet and a gluten free kitchen (the whole family went gluten free in the house when I was diagnosed) since 2008, so it has been 5 years. I am very careful and I rarely get accidently glutened, but it does happen sometimes. That is one of the reasons the Doctors are surprised I was having increasing problems because they recommend going gluten free and I already am there. 


Actually Fibromyalgia is not considered an autoimmune disorder. The new research dictates that it is considered a neurological disorder where the regulatory cells in the palms of your hands malfunction causing the brain to start misfiring information to the nerves. here is a link to an article explaining it better.     http://communities.w...ology-not-mind/


The type of doctor you have to see with Fibro is a Rheumatologist because that is where it was first diagnosed when they found arthritis was not the culprit. It is no longer considered a throw away diagnosis that they give when they don't know what is wrong. My Rheumatologist has actually been great and when he diagnosed me he said "I am so sorry to tell you that you have Fibromyalgia because there is no cure but we can halt the progression and provide some relief with the right combination of treatment." I forgot to mention in my last post that along with the medication, I have been in physical therapy since September. I go 2 times a week and it has been a God send for relief. I get a 30 min. massage and 90 min. monitored exercise working on areas most affected.


The more research I do I believe it has more to do with hormomes and I believe I need to work with a Endocrinologist. I have thought for years that my thyroid is not functioning properly even though all of my tests keep coming back normal.  After reading the article that PricklyPear1971 posted above I believe I need to find a Neuroendocrinologist. Thank you for posting that article Pricklypear1971.

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