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 fianally 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.
Can someone lend me some advice.
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
🙂

@laylabug

I have been diagnosed with Fibromyalgia for 22 years now and my GB did me a great favor towards my Fibromyalgia.
My GB was in 2/2012 to save my life as I only had 17% lung capacity. In 4/2015 I lost my Sister, my best friend forever besides my loving Husband. I’m a stress eater and while caring for her and after her passing I had gained a total of 85 lbs. I also had chronic diarrhea every day after anything I ate, good for me or bad.
I went to a metropolitan city as our town was big but extremely rural. It was just our town and nothing really anywhere around it. Doctors didn’t want to practice there or move their and the Gastrointestinal doctors just were subpar.
I sought out a good Gastrointestinal Clinic and his advice to me was to stop consuming Gluten, Lactose and to avoid ALL Preservatives. That was 8/2017.
ONE year later, I’d lost the entire 85 lbs plus a tad more. But the BEST part was that my Fibromyalgia doesn’t flare up unless I eat Gluten, Lactose and/or Preservatives. The Gluten & Preservatives give me migraines, make me hurt terribly ALL over the place. BUT, when I follow this strict way of eating, my body loves me dearly. About a year ago I began taking very high quality Plant Based Vitamins and the capsules are all vegan, therefore NO Preservatives at all!! They’re expensive, but they’re worth it as I haven’t had pneumonia or bronchitis and if I’ve caught a cold it only lasts for a day or a few days at most.
Also, what they say about STAYING ACTIVE is absolutely the truth I kid you not!!
So with a great high protein (meats and pure plant protein powder for shakes, an abundance of fruits, vegetables and obviously NO Gluten, Lactose or Preservatives), my fibromyalgia body thrives!!!
Some say, don’t you miss cheese and milk, absolutely NOT AT ALL!! When we got the news about what NOT to eat, I began to look for alternatives and my loving Husband jumped in and said… “I’ll eat what you eat and that’ll help both of us”!!!
Yes I know that I’m extremely blessed to have a Husband that’s willing to explore anything I eat.
So, I found Vegan blogs that make cheese sauces, my Sisters most favorite Mac ‘n Cheese. She was NEVER willing to try anything that looked “funky” but this looked so much like a real cheese sauce and even tasted better. I know that some of y’all won’t believe me, but it’s so true. I’ve made so many vegetarian dishes and sides that one would never know that it was not the “real” thing but so much better tasting and so good for your body. YES, I still eat meat, but only humanely raised beef, chicken, pork, turkey, and fish. Yes, to ever vegetarian or vegan out there… I know they still kill & butcher them, but that’s how people survived millions of years ago. By eating, fruits, vegetables and whatever they could catch and kill.
I don’t eat anything with Preservatives and when I eat out with family at places like Chili’s and Applebee’s like I did while visiting family and insisted on eating at those places I get very sick. This is what happened over Memorial Day weekend… After church on Sunday the family decided on Chili’s. It doesn’t really matter what I get there or similar places like Monday night at Applebee’s.
1) I can’t sleep even with my prescribed sleeping meds or I have to dbl it to 100mg and I’m in a fog for a day or two, much like a huge hangover.
2) I ache all over every muscle and every joint.
3) I get a HUGE migraine that will last for days if not a week or more.
4) I first get terrible constipation and when I drink hot coffee I get severe diarrhea and for days this process goes back and forth.
5) Oh just ask my loving Husband how pissy I get like I’m going through menopause all over again.
The benefits so outweigh all of the above that it was an easy choice to stay on what I said at first “The NO to everything diet”.
Be creative, try some new things, when you go shopping and get home, rest for a bit then drag those vegetables out of the fridge chop chop them for the week and put them in the freezer to use later.
I love making scrambled eggs & inlets with tons of vegetables. One would think how good will frozen Vegas be in one of those? Put oil in the pan, just a little bit (I only use Avocado Oil that’s JUST made with Avocados). The BEST price I’ve seen is at Costco it’s twice the size of the same brand I use (Chosen Foods) that I get at Sprouts and almost $3 less. Eating extremely healthy isn’t cheap, so I pinch every penny I can. IF you have a Costco in your area or visit somewhere often that does, they’ve begun carrying a lot more GF, LF and no Preservatives than even 6 months ago.
We even bought a 7cubic ft chest freezer so we’d have plenty of room to hold all of my prepared foods, sauces, vegetables, fruits and all grass fed and grass finished beef, turkey, chicken and yes they must be pasture raised as well. Grass fed & finished in a pasture ensures there’s NO Preservatives and bcuz of this you’ll have to use them right away or freeze them right away.
We get a great deal on our meats at our local farmers market where she pulls the trailer right up wit 4 freezers so there’s NO chance of cross contamination, keeps the trailer doors closed until someone asks about it. She even educated my Husband after I asked her to on why Pasture Raised Eggs are the absolute best for you, then he understood even though I’d already told him. Sometimes you have to hear it from someone else. We get our eggs from an Amish farmer!!!
I know that I got derailed, but it’s all great info.
If anyone wants more information, I’d be happy to help!!!
Oh, and I get most of my recipes off the internet at peoples blogs or websites just by searching the food(s) I want and just putting Gluten Free, Lactose Free before the food I want to make. I do however have my favorites!!

Jump to this post

Hi @suri, I would like to add my welcome to Connect along with @lioness and other members. There is another discussion with the same name that you have already posted in. I'm tagging our moderator @ethanmcconkey to see if we should move your discussion to the existing discussion here to avoid confusion and make it easier to find your post as well as make it more visible to other members with Fibromyalgia:

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

I'm really glad to hear you are being your own advocate and learning as much as you can about your condition. It sounds like exercise is really important to you. Have you changed any habits when it comes to exercise — still doing the same amount or had to cut back a little due to the fibromyalgia?

REPLY

I have been diagnosed with Fibromyalgia for 22 years now and my GB did me a great favor towards my Fibromyalgia.
My GB was in 2/2012 to save my life as I only had 17% lung capacity. In 4/2015 I lost my Sister, my best friend forever besides my loving Husband. I’m a stress eater and while caring for her and after her passing I had gained a total of 85 lbs. I also had chronic diarrhea every day after anything I ate, good for me or bad.
I went to a metropolitan city as our town was big but extremely rural. It was just our town and nothing really anywhere around it. Doctors didn’t want to practice there or move their and the Gastrointestinal doctors just were subpar.
I sought out a good Gastrointestinal Clinic and his advice to me was to stop consuming Gluten, Lactose and to avoid ALL Preservatives. That was 8/2017.
ONE year later, I’d lost the entire 85 lbs plus a tad more. But the BEST part was that my Fibromyalgia doesn’t flare up unless I eat Gluten, Lactose and/or Preservatives. The Gluten & Preservatives give me migraines, make me hurt terribly ALL over the place. BUT, when I follow this strict way of eating, my body loves me dearly. About a year ago I began taking very high quality Plant Based Vitamins and the capsules are all vegan, therefore NO Preservatives at all!! They’re expensive, but they’re worth it as I haven’t had pneumonia or bronchitis and if I’ve caught a cold it only lasts for a day or a few days at most.
Also, what they say about STAYING ACTIVE is absolutely the truth I kid you not!!
So with a great high protein (meats and pure plant protein powder for shakes, an abundance of fruits, vegetables and obviously NO Gluten, Lactose or Preservatives), my fibromyalgia body thrives!!!
Some say, don’t you miss cheese and milk, absolutely NOT AT ALL!! When we got the news about what NOT to eat, I began to look for alternatives and my loving Husband jumped in and said… “I’ll eat what you eat and that’ll help both of us”!!!
Yes I know that I’m extremely blessed to have a Husband that’s willing to explore anything I eat.
So, I found Vegan blogs that make cheese sauces, my Sisters most favorite Mac ‘n Cheese. She was NEVER willing to try anything that looked “funky” but this looked so much like a real cheese sauce and even tasted better. I know that some of y’all won’t believe me, but it’s so true. I’ve made so many vegetarian dishes and sides that one would never know that it was not the “real” thing but so much better tasting and so good for your body. YES, I still eat meat, but only humanely raised beef, chicken, pork, turkey, and fish. Yes, to ever vegetarian or vegan out there… I know they still kill & butcher them, but that’s how people survived millions of years ago. By eating, fruits, vegetables and whatever they could catch and kill.
I don’t eat anything with Preservatives and when I eat out with family at places like Chili’s and Applebee’s like I did while visiting family and insisted on eating at those places I get very sick. This is what happened over Memorial Day weekend… After church on Sunday the family decided on Chili’s. It doesn’t really matter what I get there or similar places like Monday night at Applebee’s.
1) I can’t sleep even with my prescribed sleeping meds or I have to dbl it to 100mg and I’m in a fog for a day or two, much like a huge hangover.
2) I ache all over every muscle and every joint.
3) I get a HUGE migraine that will last for days if not a week or more.
4) I first get terrible constipation and when I drink hot coffee I get severe diarrhea and for days this process goes back and forth.
5) Oh just ask my loving Husband how pissy I get like I’m going through menopause all over again.
The benefits so outweigh all of the above that it was an easy choice to stay on what I said at first “The NO to everything diet”.
Be creative, try some new things, when you go shopping and get home, rest for a bit then drag those vegetables out of the fridge chop chop them for the week and put them in the freezer to use later.
I love making scrambled eggs & inlets with tons of vegetables. One would think how good will frozen Vegas be in one of those? Put oil in the pan, just a little bit (I only use Avocado Oil that’s JUST made with Avocados). The BEST price I’ve seen is at Costco it’s twice the size of the same brand I use (Chosen Foods) that I get at Sprouts and almost $3 less. Eating extremely healthy isn’t cheap, so I pinch every penny I can. IF you have a Costco in your area or visit somewhere often that does, they’ve begun carrying a lot more GF, LF and no Preservatives than even 6 months ago.
We even bought a 7cubic ft chest freezer so we’d have plenty of room to hold all of my prepared foods, sauces, vegetables, fruits and all grass fed and grass finished beef, turkey, chicken and yes they must be pasture raised as well. Grass fed & finished in a pasture ensures there’s NO Preservatives and bcuz of this you’ll have to use them right away or freeze them right away.
We get a great deal on our meats at our local farmers market where she pulls the trailer right up wit 4 freezers so there’s NO chance of cross contamination, keeps the trailer doors closed until someone asks about it. She even educated my Husband after I asked her to on why Pasture Raised Eggs are the absolute best for you, then he understood even though I’d already told him. Sometimes you have to hear it from someone else. We get our eggs from an Amish farmer!!!
I know that I got derailed, but it’s all great info.
If anyone wants more information, I’d be happy to help!!!
Oh, and I get most of my recipes off the internet at peoples blogs or websites just by searching the food(s) I want and just putting Gluten Free, Lactose Free before the food I want to make. I do however have my favorites!!

REPLY

Hi @laylabug and @suri, you may have noticed I moved your post to this existing discussion on Fibromyalgia per the suggestion of @johnbishop so that you can connect with others who have similar experiences. Simply click VIEW & REPLY in you email notification to get to your post.

@laylabug thank you for sharing your story with what you have found to work.

@suri I wanted to repeat the question of others, how has your fibromyalgia affected your exercise?

REPLY
@ethanmcconkey

Hi @laylabug and @suri, you may have noticed I moved your post to this existing discussion on Fibromyalgia per the suggestion of @johnbishop so that you can connect with others who have similar experiences. Simply click VIEW & REPLY in you email notification to get to your post.

@laylabug thank you for sharing your story with what you have found to work.

@suri I wanted to repeat the question of others, how has your fibromyalgia affected your exercise?

Jump to this post

I find that exercise actually helps with easing up any pain I have. Recently, I’ve been walking 2-4 miles daily. I come home, rest a bit and feel so much better.
I always eat healthier when I exercise as not to get myself into a trap with gluten, lactose and preservatives. Having these makes my Fibromyalgia flare.

REPLY
@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.

Jump to this post

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

REPLY
@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.

Jump to this post

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

REPLY

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.

REPLY

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?

REPLY

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

REPLY

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

REPLY
@suri

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

Jump to this post

@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.

REPLY
@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.

Jump to this post

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

REPLY
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