Fibromyalgia Medication and treatment

Posted by sundance6 @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
🙂

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

@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

REPLY
@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

Jump to this post

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

REPLY
@sundance6

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

Jump to this post

Thank you for reading my post.
I will keep informed.
By the way would you happen to know anything regarding "Xeljanz" (5mg) tablets which they prescribed me to take one in the morning and one at night.
Would appreciate it
enormously.

P.s. I will look into Lyme disease. Thanks for the info.
Will keep you updated.

REPLY
@champ482

Thank you for reading my post.
I will keep informed.
By the way would you happen to know anything regarding "Xeljanz" (5mg) tablets which they prescribed me to take one in the morning and one at night.
Would appreciate it
enormously.

P.s. I will look into Lyme disease. Thanks for the info.
Will keep you updated.

Jump to this post

I also believe in questioning doctors and take notice of what my body is saying to me.

REPLY
@sundance6

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

Jump to this post

Thank you so much! I will continue to follow this advise.
Hard to understand and accept this diagnosis. I intend to heal myself.

REPLY
@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

Jump to this post

I will. It was Lucky I went to the last dr. who finally wanted to help.
Have a Good Weekend!
Sundance aka RB

REPLY
@champ482

I also believe in questioning doctors and take notice of what my body is saying to me.

Jump to this post

@champ482 Thanks any information we can get us helpful

REPLY
@sundance6

I will. It was Lucky I went to the last dr. who finally wanted to help.
Have a Good Weekend!
Sundance aka RB

Jump to this post

@sundance6You too

REPLY
@suri

Thank you so much! I will continue to follow this advise.
Hard to understand and accept this diagnosis. I intend to heal myself.

Jump to this post

@suri Anytime we receive an unsettling diagnosis, there is disbelief, grief, anger, plus a myriad of other emotions. I remember 1988 when I received my lupus diagnosis, later in 2008 when diagnosed with melanoma, and later yet in March 2015 when diagnosed with a rare kidney disorder, how sharply clear my senses were on the drive home. The colors were bright, focus sharp, it was as if my whole being was on alert. Perhaps that is similar to how you are feeling? [By the time my fibro dx came, i just shrugged my shoulders and said, "what else"] Remember medicine is not an exact science, and what one professional may follow is not the same for the next. Likewise, the treatment protocol a patient [us!] decides on can vary widely. Keep researching, keep asking questions, don't be quiet until you're satisfied. We're here for you and will tell our experiences. We care.
Ginger

REPLY

My friend, I have been on Cymbalta for approximately 2 years and my advice to you is get off now. At first it may have given some relief but it was short lived and trying to get off of it is a nightmare. I have had panic attacks etc. I went to
My reg. Dr. And you have to be weaned off of it
S L O W L Y. He has me going in the right direction by lowering my dosage each couple of months. I plead with you do a lot of research
and then make an educated decision. My best to you.❣️

REPLY

Hi Sundance! I too had a long road before Fibro was diagnosed (10 years). Complicating mine is Ankylosing Spondylitis. At any rate, I am treated with a combination of meds, and have been tried on several you mentioned. However, the best for me turns out to be Lyrica. It is costly, but if you have difficulty paying for it or if your insurance will not pay for it, Pfizer had a Patient Assistance Foundation that can provide it for you. I have no significant side effects from Lyrica and am essentially pain free most of the time now that I have an amazing rheumatologist. I would really recommend your getting a referral to a pain management specialist if your pain is severe and unmanageable. They can really help manage your routine and breakthrough fibro pain. Identifying what is the underlying activity or condition that aggravates your fibro can also help, as you are then able to try to manage that as well. Stress will aggravate as will some foods, so a keto or gluten-free diet may help. I found that daily Yoga stretches or, even better, Tai Chi really made a difference if I was careful not to over-tire my muscles. I hope this little note helps you make some positive progress with your treatment and self care. Blessings, alrod

Liked by lioness

REPLY

alrod, Thanks for the advice! I have not trird Lyrica. I will look it up and do some research. If you Google Dr. Rawls about Lyme Disease you will find several refferences about Lyme, Fibro and Chronic Fatigue. They all seem to have similar symptoms. It talks about how you have to live you life. Unless you talk to a person who has had it most people don't understand what you are going through!
It is very hard to control yourself when you have a good day, not to overdue it. I had one of those weeks this week. Felt really GOOD! Went out and did my normal routine and was down for two days.
VERY FRUSTRATING.
My biggest areas of pain have been my Headaches! Have treid everything. About three months ago I realized that I was suffering more from the meds than I was from the disease.
Told them to shove all of them! Took two months to wind some down but after felt better in some ways. My PCD and I worked out a plan that helps. Reluctant to mention it because of the BACKLASH I get from people when I tell them what it is.
Main thing it has helped the headaches 100%, that's what is important. I can deal with the other symptoms as they come, it was just trying to function with a constant headache.
Good Luck!
Keep me Posted.
Sundance(RB)

Liked by butterflylan17

REPLY
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