Fibromyalgia help/questios

Posted by clararose @clararose, Aug 16 10:37am

I have never written about me before, or asked a question. Here goes, I feel alone with this issue, I know anyone who has it or really knows what it is like. Overwhelmed with exhaustion, body aches like a bad flu, brain fog, I suffer from severe migraines. Leg weakness/dizziness (this could be due to something else?). I am looking for some advice and suggestions please.

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Gosh, all of this is my problem, HAS BEEN my problem, or confronts me at one time or another! The answer - from my perspective - is that you have to KISS A GAZILLION FROGS before you get to the prince! (princess!)
when I got my Fibromyalgia diagnosis, 2004, I really didn't believe it. When I solved some other problems it entirely retreated. Eventually, it returned. but it goes away. Brain Fog - went away when I started taking L-Carnitine (I have a deficiency) and STOPPED eating Gluten and Lactose! I have had many joint replacements now. I've had severe migrane/trimengial neuralgia which was ENTIRELY caused by a fractured wisdom tooth which eventually had a catastrophic break. Just had another wisdom tooth break and had them remove it yesterday. I am in P.T. for the millionth time for whiplash - which is probably a permanent condition now.
I use acupuncture, deep myofascial tissue release (MFR section here); I take low dose opioid (Percocet for tailbone pain) and RFA for facet joint stenosis. I have half dose of every cortisone/epidural treatment and space them out to not more than a couple times a year and skip years. I love the toroidal and have full dose and space that out to a couple times a year and then wait for years. All the steroid injections are bad for you. But if you gauge them and spread them out they are great. but you have to change any bad habits you may have. I've used natural medicines and western medicines. I use the shit out of my doctors but they love that I do my homework. I fight for what I find. (it takes a lot of time!) I've done this for 30 years and I am still deteriorating and still fixing. It is a consuming lifestyle and no one sees what goes on behind my front door - which is constant work like a full-time job! I challenge my doctors and I get rid of the lazy ones. The good ones just don't have the time for us and so YOU MUST DO HOMEWORK!!!!
You must prioritize your problems.
You must not give up.
A lot of my problems are due to wanting to continue my physical work at age 67. I create my own misery by wanting to do something my body won't support. I am writing all of this so I can SEE my own transition. I create some of my own problems. I have no more hormones so I can't build muscles. I am considering returning to HRT (bioidenticals) but its so hard to find the right doctor. I am questioning the idea of "letting go" of wanting to work. So I think you have to look at your lifestyle.
My arthritis is my biggest nightmare. (OA) but just a couple days ago someone here wrote about tart cherry pills. (I drink Black Cherry Juice concoction for years when I have a gout onset. And when I get full body inflammation from exertion. Used to do that once a year if that. Recently I am doing it on an ongoing basis. But I thought I would try the capsules because I am not sure about the effects on my glucose.
Miracle of miracles!!! I am waking up and my body aches and whole body inflammation are 90% diminished. Too soon to know if it will last. But I'll take it for the time it works!
I have taken Celebrex as needed for 20 years but it stopped working.
I read a lot here and get ideas. But sometimes I imagine I have everything posted! I have to be selective. I try to help. Sometimes now, I just have to stop. That scares me. But what is the problem with stopping for 10 minutes, 30 minutes or an hour? I earned it, did I not? I probably ruined my body from overworking when young. My aging body is not supporting me well. I have to acknowledge that. My day job has been somewhat replaced by my attention to my medical needs.
Nerve medications (Lyrica, gabapentin, Cymbalta) work so well for some, even my dog! but not for me. The low dose opioid fixes my tailbone aches and nothing more.
The fibromyalgia I've determined - in my body is NERVE-related pain. Walking, circulation, rest, stretching, relation, light resistance exercises, and deep breathing - opening the body and not shutting it down works wonders! I've learned over 20 years to tap into my deepest intuitions. Finding good practioners like acupuncture and MFR are worth their weight in gold. I use the local acupuncture college to save money.
There are some pains that are now permanent. Low-dose opioid permits me to work and be optimistic about my life. Knowing - acknowledging - that my aging body NEEDS attention (I wish it didn't) is part of this.
The most challenging part of my existence is the degenerative disc condition. It means nerves get compressed. Those nerves talk to other nerves and ergo the Fibromyalgia. (I use topicals like BioFreeze, 3% Diclofenec and Asprecreme. I look at my ancestors - they were all shut down with their "Rheumatism" in their 60s. Unfortunately, I am coming to grips with "I got it." When I had my joint replacement surgeries a lot of my fibromyalgia stopped. The impinged nerves were released.
I could write tons more but I'll stop, saying this is a personal journey and it takes devotion, and frustration, and if you have a good week, day, hour, minute - be prepared for that to change on a dime. (WEATHER is a biggie for me!). Let me know if any of this was helpful or rings a bell or if you found it comforting. Thx!

REPLY
@rutaone1

My rheumatologist recommended a book that I have on my nightstand. It has really helped me come to grips with my diagnosis. The book is called the fibromyalgia advocate, and it is by Devon J Starlanyl MD

Jump to this post

What does the book say about the 3 medications prescribed for fibro (Cymbalta, Lyrica and Savella)? Does it recommend any of them? I'm not on any meds except Cyclobenzaprine 5mg on when needed before bed. Thanks.

REPLY
@ripley

What does the book say about the 3 medications prescribed for fibro (Cymbalta, Lyrica and Savella)? Does it recommend any of them? I'm not on any meds except Cyclobenzaprine 5mg on when needed before bed. Thanks.

Jump to this post

Hi
I am also on 5mg cyclobenzaprine. I have not needed it in years but going through breast cancer.I have needed it because my fibro has flared but I don't like it because it makes my tinnitus worse. My new gp is going to give me sonething else so shld get interesting. I have tried cymbolta never again.I can't take lyrica. Never heard if savella

REPLY
@loriesco

Gosh, all of this is my problem, HAS BEEN my problem, or confronts me at one time or another! The answer - from my perspective - is that you have to KISS A GAZILLION FROGS before you get to the prince! (princess!)
when I got my Fibromyalgia diagnosis, 2004, I really didn't believe it. When I solved some other problems it entirely retreated. Eventually, it returned. but it goes away. Brain Fog - went away when I started taking L-Carnitine (I have a deficiency) and STOPPED eating Gluten and Lactose! I have had many joint replacements now. I've had severe migrane/trimengial neuralgia which was ENTIRELY caused by a fractured wisdom tooth which eventually had a catastrophic break. Just had another wisdom tooth break and had them remove it yesterday. I am in P.T. for the millionth time for whiplash - which is probably a permanent condition now.
I use acupuncture, deep myofascial tissue release (MFR section here); I take low dose opioid (Percocet for tailbone pain) and RFA for facet joint stenosis. I have half dose of every cortisone/epidural treatment and space them out to not more than a couple times a year and skip years. I love the toroidal and have full dose and space that out to a couple times a year and then wait for years. All the steroid injections are bad for you. But if you gauge them and spread them out they are great. but you have to change any bad habits you may have. I've used natural medicines and western medicines. I use the shit out of my doctors but they love that I do my homework. I fight for what I find. (it takes a lot of time!) I've done this for 30 years and I am still deteriorating and still fixing. It is a consuming lifestyle and no one sees what goes on behind my front door - which is constant work like a full-time job! I challenge my doctors and I get rid of the lazy ones. The good ones just don't have the time for us and so YOU MUST DO HOMEWORK!!!!
You must prioritize your problems.
You must not give up.
A lot of my problems are due to wanting to continue my physical work at age 67. I create my own misery by wanting to do something my body won't support. I am writing all of this so I can SEE my own transition. I create some of my own problems. I have no more hormones so I can't build muscles. I am considering returning to HRT (bioidenticals) but its so hard to find the right doctor. I am questioning the idea of "letting go" of wanting to work. So I think you have to look at your lifestyle.
My arthritis is my biggest nightmare. (OA) but just a couple days ago someone here wrote about tart cherry pills. (I drink Black Cherry Juice concoction for years when I have a gout onset. And when I get full body inflammation from exertion. Used to do that once a year if that. Recently I am doing it on an ongoing basis. But I thought I would try the capsules because I am not sure about the effects on my glucose.
Miracle of miracles!!! I am waking up and my body aches and whole body inflammation are 90% diminished. Too soon to know if it will last. But I'll take it for the time it works!
I have taken Celebrex as needed for 20 years but it stopped working.
I read a lot here and get ideas. But sometimes I imagine I have everything posted! I have to be selective. I try to help. Sometimes now, I just have to stop. That scares me. But what is the problem with stopping for 10 minutes, 30 minutes or an hour? I earned it, did I not? I probably ruined my body from overworking when young. My aging body is not supporting me well. I have to acknowledge that. My day job has been somewhat replaced by my attention to my medical needs.
Nerve medications (Lyrica, gabapentin, Cymbalta) work so well for some, even my dog! but not for me. The low dose opioid fixes my tailbone aches and nothing more.
The fibromyalgia I've determined - in my body is NERVE-related pain. Walking, circulation, rest, stretching, relation, light resistance exercises, and deep breathing - opening the body and not shutting it down works wonders! I've learned over 20 years to tap into my deepest intuitions. Finding good practioners like acupuncture and MFR are worth their weight in gold. I use the local acupuncture college to save money.
There are some pains that are now permanent. Low-dose opioid permits me to work and be optimistic about my life. Knowing - acknowledging - that my aging body NEEDS attention (I wish it didn't) is part of this.
The most challenging part of my existence is the degenerative disc condition. It means nerves get compressed. Those nerves talk to other nerves and ergo the Fibromyalgia. (I use topicals like BioFreeze, 3% Diclofenec and Asprecreme. I look at my ancestors - they were all shut down with their "Rheumatism" in their 60s. Unfortunately, I am coming to grips with "I got it." When I had my joint replacement surgeries a lot of my fibromyalgia stopped. The impinged nerves were released.
I could write tons more but I'll stop, saying this is a personal journey and it takes devotion, and frustration, and if you have a good week, day, hour, minute - be prepared for that to change on a dime. (WEATHER is a biggie for me!). Let me know if any of this was helpful or rings a bell or if you found it comforting. Thx!

Jump to this post

I don't think most of us could afford to do even half of that, even if we were smart enough to figure it all out, for ourselves.

REPLY
@sue417

Hi
I am also on 5mg cyclobenzaprine. I have not needed it in years but going through breast cancer.I have needed it because my fibro has flared but I don't like it because it makes my tinnitus worse. My new gp is going to give me sonething else so shld get interesting. I have tried cymbolta never again.I can't take lyrica. Never heard if savella

Jump to this post

Can you explain the problems you had with Cymbalta and Lyrica? Thanks.

REPLY
@ripley

Can you explain the problems you had with Cymbalta and Lyrica? Thanks.

Jump to this post

Hi
Lyrica I couldn't even get out of bed it was horrid. Cymbalta worked i on it for 1 yr after knee surgery but it made my emotions numb. It took me mths to get off it . The pharmacist gave me empty capsules. I had to open tge capsules into a dish count 10 pellets out then put the rest back in a capsules. So every 7 days I had to decrease until I got down to 5mg brutal side effects with the brain

REPLY
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