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IceeFlute
New Member


Date Joined May 2012
Total Posts : 3
   Posted 5/9/2012 6:30 PM (GMT -7)   
Hi!!! I'm totally new to this forum. My name is Jessie and I've was officially diagnosed with Fibromyalgia and Chronic Fatigue/Immune Dysfunction Syndrome 5 years ago--4 days before my 21st birthday--and after successful treatment from a beyond brilliant doctor, I am overall feeling a million times better. However, over the past few weeks my body has made other plans of its own and is up to no good, sending me back into a major flare.

The most frustrating part right now is my weight; which is all over the place in terms of numbers, and it adversely affects how I feel physically on a day to day basis. A number too high and I feel like I'm lugging around bricks on my limbs and a tire around my tummy and hips. And that only exacerbates both my pain and fatigue. Does anyone have any tips for managing weight with Fibromyalgia and Chronic Fatigue/Immune Dysfunction Syndrome?

Morti81
Regular Member


Date Joined Sep 2011
Total Posts : 186
   Posted 5/10/2012 3:12 PM (GMT -7)   
Hi Jessie,

My names Hugh. I'm afraid I cant help you much with your question but am interested to hear about your treatment for fibro/CFS/immune dysfunction treatment. I have recently been diagnosed with lyme disease, its coinfections and associated chronic fatigue. We are treating for the lyme and coinfections and I am taking nutritional suppliments but i'd be interested to hear about any CFS specific treatments geared at reducing extreme fatigue and mitochondrial dysfunction.

Hoping your feeling well

IceeFlute
New Member


Date Joined May 2012
Total Posts : 3
   Posted 5/14/2012 8:32 AM (GMT -7)   
Hi, Hugh,

I'm having a flare of sorts and lots of stress right now, and I'm praying my body doesn't spiral out of control again. I also have Lyme, but it's currently lying dormant. Ive had symptoms of both conditions throughout my entire life, but my fibro and cfids was actually spiraled out of control after I was bitten during August of 2006 and ended up with 3 bulls-eye rashes. Unfortunately the doctor I was seeing at that time thought it was ring worm and treated me for it, but the rashes were all resilient to those meds. The finally disappeared around Christmas time, but the damage was already done. In January 2007, my body totally crashed and my primary care was at her wits end to figure out what was wrong with me, especially when all of her lab tests came back "normal." (In actuality she was letting the lab company determine normal, which definitely was not me.) I was referred to many specialists, one being a rheumatologist who tried all of the FDA approved treatments with me, to no avail; they all made me sicker.

My mom found the Fibromyalgia & Fatigue Center online while searching for treatment on Lyme Disease and after my rheumatologist looked into it, I started going there. After thorough evaluation I received IV treatments and took many daily supplements. For energy, I took MitoMax, PowerCell, Chelated Iron, and AMP. But the body functions as a whole so the other supplements I was taking also interacted with these medications and enhanced their effectiveness. I began to see a huge difference right away, even after the first IV. I also have hypothyroidism as a result of an imbalance between my T3 and Reverse T3 (involving the process where T3 is converted to a usable form). For that I take bio-identical replacement medication, which is the exact substance that my body is supposed to make, but--for one reason or another--isn't able to produce enough of. For more info about bio-identical medication you can visit ITC Compounding and Natural Wellness Pharmacy.

After four-and-a-half years into my treatment at FFC, my physician decided to branch out on his own and create the Garabedian Medical Clinic, and work with a colleague of his, who is the founder of the Holtorf Medical Group. My treatments have continued with him and I continue to see great improvement in my ability to function. (When I first began treatment I could barely get out of bed and put one foot in front of the other without falling over. Now I can do minor things around the house and go on short trips as long as someone accompanies me.) I basically have learned to pace myself really well over the past few years, and to be intuitive as to when my body starts to "crash" so I can make every effort to minimize the damage.

The Fibromyalgia and Fatigue Center website should have some information, including some on mitochondrial dysfunction. There have been a lot of changes within their company over the past year, so I'm not really familiar with what they currently offer patients. The Holtorf Medical Group also has some interesting information about both conditions.

I hope this helps some. I know how overwhelming and frustrating it can be to navigate for relevant information. If you have more questions don't hesitate to ask; I'm more than happy to share about my experiences.

Jessie :o)

HoldingOutHope
Regular Member


Date Joined Jun 2012
Total Posts : 44
   Posted 6/4/2012 9:25 AM (GMT -7)   
When I have a bad flare, I get extremely nauseous and cannot eat, which makes me lose weight. In February and March, I dropped almost 10 pounds I was so sick. I am slowly getting a little better, and of course, hungrier, and my weight is gradually getting back to normal. It is so frustrating because I am unable to exercise without having a flare, so I have tried to be really careful about what I eat. As they say, what goes through the lips sticks to the hips...and this certainly is a concern for me.
I've always been an average weight and active, and since getting sick last year, I've lost control over my body. Lately I try to eat healthy...salads with oliver oil and balsalmic...blueberries for snacks...and reducing the amount of red meat I eat. I don't count calories or do a diet per say, but I am very cognizant of what I eat now. Hope that helps.
Are you able to exercise?
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