Fibromyalgia Medication and treatment

Posted by Sundance(RB) @sundance6, Jun 1, 2019

I have been on the Mayo Connect for over six months. My symptoms point to the umbrella of things, Lyme disease, West Nile, Fibromyalgia, Lupus, and Chronice Fatigue. I have seen every doctor in my hospital system. Had every test and scans done. JUST MADE MORE $$ FOR THE HOSPITAL SYSTEM!

Yesterday I finally went to a Rheumatologist for a consultation on a blood test. When I expalined what I had been going through the last ten months he finally gave me a diagnoses. (First one after 10 months and 10 doctors.)There is a small chance I may have Lyme Disease, but to late to tell. He said he was sure it is Fibromyalgia. He said I should have been directed to him when it first started. (Again as many of you agree they put you through unecessay test and perscribe pills to make $$ for the industry.

So now that I finally have some direction to move, I need some advice, information, what helps, what causes it and such. He said he feels mine is in the area of sleep. Does this make sense to anyone? He is sending me to a sleep clinic for evaluation.

I know I have seen many postings about Fibromyalgia, but I guess it is the "Fibro Fog" that dosen't remember all.

I had been on Gabretentian but the side effects were worse than my pain! We are tryng Cymbalta. Can anyone let me know how it has worked for them. Anything to watch for?
As always this site is the Best! People are so honest and open about helping.
Thanks,
Sundance 🙂

Interested in more discussions like this? Go to the Fibromyalgia Support Group.

@laylabug

Does anyone get really hot when your sitting under any kind of light/heat source? I’ve gotten to the point that I always use ambient lighting as it’s not directly over me and then I don’t feel like I’m going through menopause all over again.

I’ll be with friends, I’ll be sweating bullets and they’re cold. Makes no sense, but I’m certain it’s caused by my Fibromyalgia.

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Hi @laylabug, I've tagged our moderator @ethanmcconkey to see if we can move your post to the following discussion with the same name where your question will receive more visibility with other members who have fibromyalgia.

> Groups > Autoimmune Diseases > Fibromyalgia
-- https://connect.mayoclinic.org/discussion/fibromyalgia-5/

I found an article that discusses your question and may offer some insight.

Heavy Sweating in Fibromyalgia & Chronic Fatigue Syndrome
-- https://www.verywellhealth.com/excessive-sweating-chronic-fatigue-syndrome-p2-716008

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@laylabug

Does anyone get really hot when your sitting under any kind of light/heat source? I’ve gotten to the point that I always use ambient lighting as it’s not directly over me and then I don’t feel like I’m going through menopause all over again.

I’ll be with friends, I’ll be sweating bullets and they’re cold. Makes no sense, but I’m certain it’s caused by my Fibromyalgia.

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@laylabug Yes I do and others are all bundled up .I for nd exercise helps with fibro so keep walking 🙂

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Does anyone get really hot when your sitting under any kind of light/heat source? I’ve gotten to the point that I always use ambient lighting as it’s not directly over me and then I don’t feel like I’m going through menopause all over again.

I’ll be with friends, I’ll be sweating bullets and they’re cold. Makes no sense, but I’m certain it’s caused by my Fibromyalgia.

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Hi @laylabug you may have noticed I moved this post to the existing discussion on Fibromyalgia so that all your posts on this topic would be in the same place.

That must be so frustrating being so hot all the time. Have you mentioned this to your doctor?

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Sounds exactly like me! I’ve had to push for tests outside the box. Better to work with a Functional Medicine Doctor because they don’t accept the label Fibromyalgia. There’s more to it and they will keep stripping away the layers to find out the cause I’ve learned this the $$$$$ way. Mayo just sticks baby in the corner unless you are persistent

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My question is what truly is Fibromyalgia? Just a label for “we don’t know”

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@suri

My question is what truly is Fibromyalgia? Just a label for “we don’t know”

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@suri, I have no medical background or training but I try to rely on doing my own research and finding out as much as I can about a condition I have. While I don't have fibromyalgia I think it's more a matter of some autoimmune diseases are hard to diagnose and it may be more a process of elimination which I don't think is easy for any patient to deal with. There is a lot of information out there supporting that fact that fibromyalgia is hard to diagnose.

Fibromyalgia: Understand the diagnosis process
--https://www.mayoclinic.org/diseases-conditions/fibromyalgia/in-depth/fibromyalgia-symptoms/art-20045401
Why Fibromyalgia Is So Hard to Diagnose
-- https://www.health.com/health/condition-article/0,,20326400,00.html
Diagnosis - National Fibromyalgia Association (NFA)
-- http://www.fmaware.org/about-fibromyalgia/diagnosis/

It's good that you are being your own advocate. Sometimes you have to seek additional opinions if your doctor isn't listening to you or at least start the discussion with them about your concerns of the lack of a diagnosis.

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@johnbishop

@suri, I have no medical background or training but I try to rely on doing my own research and finding out as much as I can about a condition I have. While I don't have fibromyalgia I think it's more a matter of some autoimmune diseases are hard to diagnose and it may be more a process of elimination which I don't think is easy for any patient to deal with. There is a lot of information out there supporting that fact that fibromyalgia is hard to diagnose.

Fibromyalgia: Understand the diagnosis process
--https://www.mayoclinic.org/diseases-conditions/fibromyalgia/in-depth/fibromyalgia-symptoms/art-20045401
Why Fibromyalgia Is So Hard to Diagnose
-- https://www.health.com/health/condition-article/0,,20326400,00.html
Diagnosis - National Fibromyalgia Association (NFA)
-- http://www.fmaware.org/about-fibromyalgia/diagnosis/

It's good that you are being your own advocate. Sometimes you have to seek additional opinions if your doctor isn't listening to you or at least start the discussion with them about your concerns of the lack of a diagnosis.

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Suri, I came down with what I still feel is Lyme Disease. Because of late testing the results showed negative. BUT I STILL HAD ALL THE SYMPTOMS!! (Started in July of last year) Anyway I went to every doctor and dept. in my hospital system in Albuquerque. All they wanted to do were run more tests that really wern't necessay, but they tried to validate them in some way. THEY FOUND NOTHING EXCEPT WHAT HAPPENS TO OLD PEOPLE!
One of my hundred blood test showed a high point in my Rheumatoid Factor. If nothing else it led me to a Rheumatologist who was more open about talking about Fibromyagia and Lyme Disease. He was matter of fact about both. He felt a small chance of the Lyme but was convienced it was Fibro. There is no cure for either at this point and they all seem to fall into a catagory that includes Lupus, Chronic Fatigue, Fibromyalgia, Lyme Disease and such.
He recomended excersise and overcoming stress and other factors. He also got me into a study that deals with the joint, muscel problems, fatique, head and neck aches. I start the study next week.I I just want to let you know it is not an easy road! And as I have said before YOU HAVE TO BE YOUR OWN ADVOCATE!
My generation were taught not to question a doctor. Those rules have changed!! If they perscribe more meds YOU SAY WHY! YOU ASK THE SIDE EFFECTS! But don't believe what they say about the side effects, listen to your body!
I have been working on this for almost a year now. Although I don't have the answers for you or anyone else I am starting to have control of my body!
The BIGGEST HELP OF ALL IS REST!! I still run my own business. I still travel. But I find a time to stop and take an hour nap! It has done more good than anything. (Remember the Old Poster "Stop and Smell the Roses"! How true that still is")
Next is excersie and staying busy! WHICH WHEN YOUR HEAD HURTS SO BAD YOU CAN HARDLY STAND IT CAN BE HARD.
My PCD is very old school! He and I work together to manage my pain. Other doctors lecture me about how we do this! BUT THEY DON'T KNOW THE PAIN YOU ARE IN AND HOW IT CAN RULE YOUR LIFE!
My last suggestion is to go on to the Lyme Disease web sites. They describe Best what your symptoms are and how to deal with them! I have a note book of copies of different articles dealing with the effects of Lyme and the other illneses that are similar!
Good Luck. Keep diging! Learning about what is happening to you is the best way to understand the process.
Thanks,
Sundance, aka RB

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@sundance6 Hi RB I was glad to see your post I,'ll be interested in hearing about your study your starting This is what FedupwithFatigue says Fibro @Lyme are having the same properties There is a study going on at think it's Botanic Lab also. Maybe in years they will have answers keep me posted

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@lioness

@sundance6 Hi RB I was glad to see your post I,'ll be interested in hearing about your study your starting This is what FedupwithFatigue says Fibro @Lyme are having the same properties There is a study going on at think it's Botanic Lab also. Maybe in years they will have answers keep me posted

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Thank you for reading my post.
I will keep you informed.

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