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Tue Feb 7, 2017, 08:35 PM

Three years of weird symptoms. Just diagnosed with fibromyalgia.

I have seen so many doctors. I was diagnosed with gastritis and GERD but none of them could figure out what was causing it or my other weird symptoms. I posted about them here. http://www.democraticunderground.com/11472800

I didn't mention in that post that I also ache all over most of the time. I thought that was just arthritis. I was recently referred to a rheumatologist for it and they x-rayed every joint in my body. Turns out I have a little osteoarthritis but none in most of the places I hurt! Those places turned out to be the tender points for fibromyalgia. I have 14 of the 18.

All this time and I never dreamed it was fibromyalgia. But I never realized it had so many symptoms! I have nearly all of them. They also told me I have high levels of mycoplasma bacteria and Epstein Barr virus that could have triggered it or be related somehow.

I just wondered if anyone here had been told that viruses and/or bacteria could be a factor in their fibromyalgia or chronic fatigue syndrome. If so, how were you treated? I'm also curious what co-conditions and symptoms others with this syndrome are having. Have you had any luck with treatments? How do you manage the pain and fatigue? It seems like such a mysterious condition. I wish they understood it better. I'm interested in your experience with it.

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Reply Three years of weird symptoms. Just diagnosed with fibromyalgia. (Original post)
OnionPatch Feb 2017 OP
underpants Feb 2017 #1
OnionPatch Feb 2017 #7
DeadLetterOffice Feb 2017 #2
OnionPatch Feb 2017 #8
elfin Feb 2017 #3
MFM008 Feb 2017 #4
OnionPatch Feb 2017 #5
pnwmom Feb 2017 #12
OnionPatch Feb 2017 #6
DesertFlower Feb 2017 #9
OnionPatch Feb 2017 #10
DesertFlower Feb 2017 #11

Response to OnionPatch (Original post)

Tue Feb 7, 2017, 08:44 PM

1. My wife has it

It's brutal

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Response to underpants (Reply #1)

Wed Feb 8, 2017, 11:16 AM

7. I'm sorry about your wife.

I hope she finds some answers or at least some relief.

I'll share here if I find anything that helps.

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Response to OnionPatch (Original post)

Tue Feb 7, 2017, 09:03 PM

2. At least one study found a def link b/w fibro and EBS

Evaluation of Antiviral Antibodies against Epstein-Barr Virus and Neurotransmitters in Patients with Fibromyalgia

http://www.jneuro.com/neurology-neuroscience/evaluation-of-antiviral-antibodies-against-epsteinbarr-virus-and-neurotransmitters-in-patients-with-fibromyalgia.php?aid=7360

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Response to DeadLetterOffice (Reply #2)

Wed Feb 8, 2017, 11:20 AM

8. Thanks!

I've been reading more about this and it makes so much sense. They also believe mycoplasma can cause or trigger FMS/CFS. Apparently I have the same strain found in many Gulf War Syndrome patients, mycoplasma fermentans.

This stuff is hard to get rid of I hear. They have me on something called Transfer Factor and if that doesn't help I guess it's long term antibiotics.

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Response to OnionPatch (Original post)

Tue Feb 7, 2017, 09:08 PM

3. My neighbor has it, BUT recovered nearly 90% by going gluten free

She is a public radio addict and heard a program on it and one of the docs said that some people (not all by any means) found great relief by going gluten free.

She thought she would try it for three weeks before going on strong meds. Also cut out meat and went as organic as possible. It was hard to adjust, but after three weeks of strict observance,, she could feel definite improvement. Never looked back and kept improving.

She now has regular geezer aches and pains, but not debilitating any more. She could hardly get out of bed some days.

Good luck to you - it is a nasty thing to have.

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Response to elfin (Reply #3)

Tue Feb 7, 2017, 09:56 PM

4. I noticed this helps me

losing weight and going gluten free have helped tremendously. Try it!

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Response to MFM008 (Reply #4)

Wed Feb 8, 2017, 11:09 AM

5. I have tried gluten free.

It seems like I tried everything on Earth to remedy the GERD and gastritis, including several elimination type diets that cut out gluten among other things. None of them seemed to make much difference.

When this first hit me, I had chronic diarrhea and lost 25 pounds and was at a healthy weight for a while. The diarrhea cleared up but losing that weight didn't seem to make a difference either. I slowly started putting the weight back on (feeling too sick to exercise much) but am dieting again. I have 20 pounds to lose. I don't eat much gluten now because my diet is very low carb.

I know gluten free helps a lot of people though, so thanks for mentioning it. Exercising regularly makes me feel a little better too so I'm sticking with that.

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Response to OnionPatch (Reply #5)

Wed Feb 22, 2017, 02:30 PM

12. Keep eating gluten for now, but please ask a doctor to give you another

blood test -- the gluten panel. (If you've been eating low carb for a while you might actually need to increase the amount of gluten in your diet for a couple months before testing -- because the antibody tests only work if your body has been subjected to enough gluten. If you increase your gluten and realize you're sicker, there's your answer. )

Even if you tested negative in the past, that doesn't mean you'd be negative, today (just as someone can be negative for rheumatoid arthritis one year, but positive the next.)

If any of the blood tests are positive, or if just eating more gluten makes your symptoms worse, then you should go off gluten. Permanently. But you have to be scrupulous,, because in a sensitive person any amount could cause symptoms (or not cause symptoms but be causing invisible damage and increasing the risk of lymphoma.) My big symptom (besides fibromyalgia) is bleeding, and I can get it just from the amount of gluten in a generic pill. I also have to avoid any food that says it was made in a factory that processes wheat. Or any food that says "natural ingredient" without naming it, because barley has gluten, and barley isn't required to be labeled. Then there are the additives that contain gluten, lists of which you can find online. (Monosodium glutamate, for example.)

Only the phrase "gluten free" means a food has been tested and isn't contaminated.


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Response to elfin (Reply #3)

Wed Feb 8, 2017, 11:15 AM

6. Glad your neighbor found some relief.

I definitely believe food intolerances can be a factor. I'm glad gluten doesn't seem to bother me, though. I do love a piece of warm, freshly baked bread. 😀 I'm staying away from too much carbs right now though.

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Response to OnionPatch (Original post)

Fri Feb 10, 2017, 01:29 AM

9. i was diagnosed with chronic fatigue syndrome

26 years ago, but i think it started 2 years earlier after a case of walking pneumonia. one of the first things was insomnia. i was seeing a naturapath at the time and she wouldn't give me sleep meds even though i had researched the condition. sinequan and klonopin were recommended by the top experts in the field. i finally found a doctor who was recommended and after ruling out all other conditions he prescribed the meds for me. eventually i built up a tolerance and they stopped working. now i take 50 mg. of seroquel, but i can only take it if i don't have to get up the next day. it knocks me out and a lower dose doesn't work. i took it last night and didn't get up till after 2pm today. right now i should be sleeping, but as you can see i'm up. it's almost 11:30 pm here. the latest thing i've tried is magnesium which is supposed to be calming.

so many other conditions can be attributed to CFS/ME, incuding GERD, IBS, nausea, etc. i have some conditions that cannot be diagnosed even though i've seen specialists. it's got to be the CFS.

BTW. i was ill enough to qualify for SSDI. i was turned down twice and had to go before a judge, but got it retroactively.

i've tried IV vitamins and chelation therapy but neither helped. i do eat healthy and tried eliminating certain foods.

i've learned to live with it and do the best i can, but it sucks.

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Response to DesertFlower (Reply #9)

Wed Feb 22, 2017, 12:49 AM

10. I'm sorry you've suffered from this for all this time.



I've heard of other people who have suffered from this for many years and have tried everything. I've also heard of people who were "cured" using various means, including chelation therapy or ridding themselves of viruses/pathogens, or cutting out certain foods, but obviously these don't work for everyone. This seems like such a complex condition. I wonder if there aren't many different possible causes for this group of symptoms, including some yet to be known.

I'm thinking of being tested for heavy metals because I have tremors and muscle twitches, which I read are symptoms of mercury toxicity, and I've had exposure. Were you tested for heavy metals? What sort of chelation did you have?

So glad for you that you finally got SSDI. I hear it usually takes several attempts. I'm only about five years from retirement and my symptoms aren't debilitating. I'm lucky to work a desk job with a somewhat flexible schedule so I'll keep going unless I get worse. Let's hope they make some big strides toward understanding this soon, and if not a cure, then better treatments.

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Response to OnionPatch (Reply #10)

Wed Feb 22, 2017, 01:03 AM

11. the chelation was with EDTA which removes

metals from the body.

i also had IV hydrogen peroxide which i hoped would help. i didn't. i must have had over 100 IVs over the years.

they still don't know what causes it or whether it's a virus or an immune problem.

the weird thing is i was into health when i got sick. used to drive my husband crazy because i was so picky with what i ate. also took a lot of vitamins.

glad to hear you're able to work. hang in there.

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