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Fibromyalgia Community
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Poll for Members' With Fibro

I was just wondering how many of you would support a "Living with FIBRO/CFS" board ?  I know there are so many similarities with our conditions and many people who have fibro often have signs of CFS and vice versa.

Please let me know what you think and if you guys would like another board, then we can notify Med Help.
49 Responses
Avatar universal
This board is not very active.  I don't know if it's because it is fairy new or what.  immunesupport.com is very active for both CFS/FMS if anyone is interested.
Avatar universal

Hi Patsy,

I'm familiar with immunesupport.com --- thank God for websites that educate people on fairly new and controversial (although after reading the research, I'm not sure why) conditions.

I hope eventually we could get a CFS/FIBRO --- possibly MCS board here. I know that there are an estimated 1 million people in this country (CDC) who have CFS and 80% of them have not been diagnosed. There are approximately 8 million people with fibro --- not sure how many people have MCS but MCS is common in many CFS patients'.
Avatar universal
Maybe this forum will pick up in time.  The neuro one is very active.  I wonder if few people know it's even here.

Would you mind listing some of your CFS symtpoms?  My symptoms are way more than just fibro.  Just wonder if some are CFS.  I looked up ME and I sure do fit that bill too...

Thanks,

Patsy
Avatar universal

Hi Patsy,

I think I've had undiagnosed CFS for many years, but I can't pinpoint when I first "got it". When I was a teenager, I was ill with mono and then another condition immediately afterwards. After that, I had allergy problems and numerous infections. It seemed like I was in the Urgent Care almost every other week and all they could do for me is prescribe antibiotics (boy do I know better now !). My first initial symptoms that I can remember were allergies, fatigue, muscle aches, feeling like cement blocks were attached to my legs, short term memory problems and then later on... unrefreshing sleep, severe headaches, heart palpitations, shortness of breath & gastrointestinal problems. Years later... food intolerances, adrenal problems, dizziness, POTS, trouble concentrating, weakness & joint pain --- and this is when I started getting high ANA titers of 1:640. I've also had numbness on occasion. Its a terrible illness, but the research is there. CFS affects your endocrine, nervous and immune system and that is why this illness is so complicated and why there are so many symptoms. In addition, Dr. Paul Cheney has been doing research on CFS patients and diastolic cardiomyopathy. I know the last time they took my BP, they couldn't hear my diastolic number.

I am still on the MP --- I still have a ways to go, but can tell that I'm making progress. I'll keep you posted if you want.



Avatar universal
Yes, keep me posted.  I assume you mean Marshall protocol???  I've read about it and would like to try it myself.  The problem is getting a doctor to go along with it.
Avatar universal

Hi Patsy,

On the Marshall Protocol's website's (General Board), you can post and request for one of the Moderator's to send you a private message (on the board) of physicians' who practice the MP in your area.

There are more fibro patients' joining the MP now and tons of CFS patients'. Of course many of the CFS have fibro symptoms as well. Hityty (she posts here often) is also doing better. She sent me an e-mail recently.

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