1. < Fibromyalgia

Fibromyalgia: How do you cope?

Posted by sandymom @sandymom, Mar 8, 2019

Since 1983 fibromyalgia has cost me my job home life. Daily struggles. One day up next down. What to do to cope? See psychiatrist med nurse pcp etc. let me here your story the sufferings this has caused. Any help please!

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lioness | @lioness | Jan 19, 2020
In reply to @artscaping "@baxtersmom, @rwinney, @lioness.....Well ladies, I don't know if insurance would be an issue with fibromyalgia. Mine..." + (show)
@artscaping

@baxtersmom, @rwinney, @lioness.....Well ladies, I don't know if insurance would be an issue with fibromyalgia. Mine was another auto-immune based diagnosis.

Now, this may just crack you up. Your clinician believes that Fibromyalgia is real. My neurologist sent me to a rheumatologist who told me that there is no such thing as neuropathy....everything is fibromyalgia. Is that a cross over? She also told me that unless I was willing to change to Lyrica, there was nothing she could do for me.

Have a lovely evening.....we are on the 3rd night without TV because of the snow. About 8 inches. It is a no football weekend.

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@artscaping The San Francisco 49,RS meet by K. C in Miami 2-2

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Mentor
Rachel, Volunteer Mentor | @rwinney | Jan 19, 2020
In reply to @artscaping "@baxtersmom, @rwinney, @lioness.....Well ladies, I don't know if insurance would be an issue with fibromyalgia. Mine..." + (show)
@artscaping

@baxtersmom, @rwinney, @lioness.....Well ladies, I don't know if insurance would be an issue with fibromyalgia. Mine was another auto-immune based diagnosis.

Now, this may just crack you up. Your clinician believes that Fibromyalgia is real. My neurologist sent me to a rheumatologist who told me that there is no such thing as neuropathy....everything is fibromyalgia. Is that a cross over? She also told me that unless I was willing to change to Lyrica, there was nothing she could do for me.

Have a lovely evening.....we are on the 3rd night without TV because of the snow. About 8 inches. It is a no football weekend.

Jump to this post

The rheumatologist I saw agreed with my suggestion of Lyrica, even tho she provided no diagnosis. Funny.

Ouch - no football! We just finished watching my hubby's 49'ers whoop up on the Packers. May you get your TV back by Superbowl!

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parrotqueen | @parrotqueen | Jan 20, 2020

I just wanted to say that very recently fibromyalgia has been definitely accepted as its own disease. It is now recognized and clearly defined. If you do a Google search to "recent findings for fibromyalgia" or something similar - it should come up for you. FINALLY it is recognized. It has to be autoimmune. They say it mostly affects the nerves - but I'm thinking it is also muscular. Whatever it is, I am fed up with it! I am glad to know the boron is working for you, Lioness. There are some people that take doses of 90-150 mg of boron and they say it cures their osteoporosis. If you take doses that high, it raises your estrogen level even if you are postmenopausal. I'm happy with my 6 mg a day habit.

You can also get boron from eating prunes. I've heard six prunes a day with a few raisins thrown in for good measure is a respectable dose. Prunes are not allowed on my sugar-free diet.

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Parus | @parus | Jan 20, 2020

Fibromyalgia is more readily accepted than in the past. What others believe doesn't matter to me now. Insurance is something difficult to deal with and few like doing thus. Hoops, hoops and more hoops. I do know I have had my fill of judgmental folks and stereotyping irks me beyond words-yup, a whole lot for this wordy one.

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Gail, Alumni Mentor | @baxtersmom | Jan 20, 2020
In reply to @rwinney "Have you ruled out neuropathy via skin punch biopsy? I had many symptoms that mimicked fibromyalgia..." + (show)
@rwinney

Have you ruled out neuropathy via skin punch biopsy? I had many symptoms that mimicked fibromyalgia but the Rheumatologist said nope it's not that. Later I was diagnosed with Small Fiber Poly Neuropathy with biopsy. You spoke of symptoms I've had all along. Redness of face/neck/chest, tender scalp, inconsistent body temps. I sweat if I fold warm laundry and have a hard time acclimating between temp changes...neuropathy characteristics. Also, I've read that Fibro seems to cross over to SFN. Just a thought.

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@rwinney I thought small fiber neuropathy was associated with difficulty sweating or low sweat output. But maybe it can go either way. I know I do not have difficulty sweating as I am like you. I can sweat doing any minor household task or actually just thinking about something stressful can make me sweat.

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Mentor
Rachel, Volunteer Mentor | @rwinney | Jan 20, 2020
In reply to @baxtersmom "@rwinney I thought small fiber neuropathy was associated with difficulty sweating or low sweat output. But..." + (show)
@baxtersmom

@rwinney I thought small fiber neuropathy was associated with difficulty sweating or low sweat output. But maybe it can go either way. I know I do not have difficulty sweating as I am like you. I can sweat doing any minor household task or actually just thinking about something stressful can make me sweat.

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Autonomic neuropathy impacts small nerve fibers which prevent nerves from expanding properly. Check it out for yourself. I was always concerned I was premenopausal but no it's SFN and miserable. Opposite is my feet which blood vessels dont contract properly and they turn all shades of purple/grey/red and freeze. Hands freeze too.

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Mentor
Rachel, Volunteer Mentor | @rwinney | Jan 20, 2020
In reply to @rwinney "Autonomic neuropathy impacts small nerve fibers which prevent nerves from expanding properly. Check it out for..." + (show)
@rwinney

Autonomic neuropathy impacts small nerve fibers which prevent nerves from expanding properly. Check it out for yourself. I was always concerned I was premenopausal but no it's SFN and miserable. Opposite is my feet which blood vessels dont contract properly and they turn all shades of purple/grey/red and freeze. Hands freeze too.

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Have you had a skin biopsy?

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1 reply
Gail, Alumni Mentor | @baxtersmom | Jan 20, 2020
In reply to @rwinney "Have you had a skin biopsy?" + (show)
@rwinney

Have you had a skin biopsy?

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@rwinney,
No I have not had a skin biopsy. I know I am not pre-menopausal as I have already been through that (at age 57 so it wasn't that long ago). I actually did not have hot flashes during menopause but I did have awful nightsweats for many many years leading up to that time. I will have to look into the neuropathy more. I appreciate the information.

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Mentor
Rachel, Volunteer Mentor | @rwinney | Jan 20, 2020
In reply to @baxtersmom "@rwinney, No I have not had a skin biopsy. I know I am not pre-menopausal as..." + (show)
@baxtersmom

@rwinney,
No I have not had a skin biopsy. I know I am not pre-menopausal as I have already been through that (at age 57 so it wasn't that long ago). I actually did not have hot flashes during menopause but I did have awful nightsweats for many many years leading up to that time. I will have to look into the neuropathy more. I appreciate the information.

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No problem. Best of luck to you.

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lioness | @lioness | Jan 20, 2020
In reply to @rwinney "Autonomic neuropathy impacts small nerve fibers which prevent nerves from expanding properly. Check it out for..." + (show)
@rwinney

Autonomic neuropathy impacts small nerve fibers which prevent nerves from expanding properly. Check it out for yourself. I was always concerned I was premenopausal but no it's SFN and miserable. Opposite is my feet which blood vessels dont contract properly and they turn all shades of purple/grey/red and freeze. Hands freeze too.

Jump to this post

@rwinney Have you asked about Reynauds sendrome With hands and feet turns ng color and coldness might be this

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