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Val319

New member
Joined
Apr 18, 2018
Messages
5
Reason
DX FIBRO
Diagnosis
01/2010
Country
Usa
State
Ky
Hi everyone, I’m new. I was diagnosed a few years ago but it was ignored. It finally got bad enough I’m seeing a really nice specialist. I feel I’ve had this but it just got worse over the last 10 or more years.

I have a bunch of health issues. My thyroid specialist is brilliant. He’s been convinced mine is Lyme/mold. The first Lyme test my primary dr did was the wrong test but came back negative. Well finally had the right tests ran. I know this sounds stupid but I got told the new testing came back negative. It has upset me.

I was thinking a Lyme/mold would at least give me the possibility of antibiotics to maybe get better. It sounds stupid that I’m upset but I am.

I’m new at seeing the fibro specialist. I have really bad medication reactions. Odd things that shouldn’t happen do. For example I was prescribed tizanidine. It really helped until day 3. I woke in the middle of the night feeling like someone had pulled some teeth out with plyers.

The only thing I can think to do is have the dna medication clearance gene test done. I’ve been avoiding figuring out what to do next until the Lyme/mold test came back.

I saw the dietician who just suggested more things not to eat. She suggested more supplements. I’ve been trying a bunch of supplements. Rutin, d ribose, reduced glutathione and I’ve got a bunch I tried before them.

Physical therapy didn’t work out.

How has everyone else done on these epilepsy meds? I tried topamax. I couldn’t remember anything. The side effects were bad. I have a script for keppra at the pharmacy. I’m nervous to try it. Neurotin tore my stomach up.

How does everyone handle being too tired to make food? Any Recommended books? I’m feeling overwhelmed. Other Suggestions?
 

Marie219

Active member
Joined
Feb 22, 2018
Messages
63
Reason
DX FIBRO
Diagnosis
05/2013
Country
CA
State
ONTARIO
Hello Val, I feel so sorry for all that you have gone through, I hope you would be able to find some solution and remedies that would make you feel better.

Healthy diet and supplements are important; I am taking d ribose too. I never take medication for Fibromyalgia because of the side effects.

Sometimes, when I am too tired to prepare food, I take Ensure Meal Replacement ready-to-drink; there is a variety of meal replacement that you can choose.

Do you mean recommended books for Fibromyalgia?
 

Val319

New member
Joined
Apr 18, 2018
Messages
5
Reason
DX FIBRO
Diagnosis
01/2010
Country
Usa
State
Ky
Yes, fibro books.

I just found out the western blot wasn’t ran neither were coinfection testing.

I’m too nervous to try the keppra. Topamax was horrid.

I’ll check out shakes. Thank you!
 

Marie219

Active member
Joined
Feb 22, 2018
Messages
63
Reason
DX FIBRO
Diagnosis
05/2013
Country
CA
State
ONTARIO
Hi Val, it is good to have several Fibro books, each author has different approach. I have eight Fibro books: one is about food and cooking; another for exercise; others about Fibro symptoms and remedies. And as remedy I choose natural because I am so afraid of side effects from the medications.

Most of my Fibro books are purchased from Amazon.com. I go to Amazon website and click "search" for Fibromyalgia books. Among many Fibro books I select those have four to five stars and then read the reviews from the customers. Based on their comments, I choose my books, then I can buy them from amazon or other book stores.
 
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