Fibromyalgia

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!

Is this fibro class on line or on site? Ongoing? Thanks!

drivers license1

REPLY
@peggyann69

Is this fibro class on line or on site? Ongoing? Thanks!

Jump to this post

I took a two day fibro class at the Mayo Clinic in Rochester. My doctor suggested it and helped get me enrolled, there’s a 3 month waiting list.
Not sure about anything being online.

REPLY

Thanks! I will look into in Phoenix–I live in Tucson, so an overnight trip is easy to do.

REPLY
@peggyann69

Thanks! I will look into in Phoenix–I live in Tucson, so an overnight trip is easy to do.

Jump to this post

@peggyann69 – I'm wondering if you could call the Rochester Mayo Clinic contact for the fibro class and see if they have the same offering at the Mayo Clinic Arizona Campus?

Fibromyalgia Class in Patient Education in Minnesota
https://www.mayoclinic.org/patient-visitor-guide/education-centers/patient-education-minnesota/classes/fibromyalgia

REPLY

Good Idea–as I could find no such offering on the Phoenix Mayo website but that doesn't mean it isn't happening or at least in the works…

REPLY
@lioness

@sandymom I,d like to add my wellcom to you as @parus did .I've had fibromyalgia since the 90,s and it is a chore to have The ups @downs I've had all the meds out there known researching different fibro groups I came across a group that said clinical evidence says we need more magnesium then normal people So I found a product I've been taking for years that helps me called Fibro Malic I get it from Vitacost.com It's not perfect as I still get flare ups but keeps me comfortable for the most part

Jump to this post

@lioness
I did a search on Vitacost for the Fibro Malic and it did not come up. Can you clarify for me what it is you take or send me a link to it please. Thank you.

REPLY
@baxtersmom

@lioness
I did a search on Vitacost for the Fibro Malic and it did not come up. Can you clarify for me what it is you take or send me a link to it please. Thank you.

Jump to this post

@baxtersmom I don,t understand that . I just open Vitacost and search for Fibro Malic Advanced by Trask Nutrition . I,ve never had a problem . Label says Natural Fibromyalgia Relief It has Malic Acid Magnesium,MSM and Olive Leaf Extract as ingredients Vit B6 and C in it .

REPLY
@lioness

@sandymom I was forced to retire was doing private duty when I fractured my L2 couldn't work anymore on top of fibromyalgia since the 90,s so went in a different direction just not stopping found other things to do I love connect as this gives me an outlet to use some of my knowledge as a nurse I can't take the fibro meds they don't work but Fibro Malic does ,chair exercise,warm pool ,Tens unit ,ice ,heat Dr. put me on Tramadol when I fractured back that was the last med left me on it I still take it 1 from 4 then Meloxican for arthritis Hope some of this helps Biggest is to say No listen to your body fibro warriors we are

Jump to this post

@lioness, I got some of the Fibro Malic and have been taking it for several days now. I am not sure but I do think it is working a bit. I also stepped up my turmeric with bioprene and am taking more of that as well. I take gabapentin (neurontin) and pristiq along with norco and belbuca. I still have pain but I am hopeful this Fibro Malic may help like you say. I have not been diagnosed with fibromyalgia but I have most of the symptoms. My mom had it as well. My doctor said she doesn't want to put it on my records because that causes some doctors to be a little hesitant about treating you as it is so difficult to treat. She doesn't want me to have a stigma attached and she said she doesn't know if I have it or not. She does believe it is real and just believes that medical science just has not figured it out yet and that is why it is so difficult to diagnose and treat. I appreciated her honesty regarding how doctors often view a fibromyalgia patient. Have you found this to be true? I have been to so many doctors over the years, I cannot even name them all. But thanks for the tip on the Fibro Malic.

REPLY
@baxtersmom

@lioness, I got some of the Fibro Malic and have been taking it for several days now. I am not sure but I do think it is working a bit. I also stepped up my turmeric with bioprene and am taking more of that as well. I take gabapentin (neurontin) and pristiq along with norco and belbuca. I still have pain but I am hopeful this Fibro Malic may help like you say. I have not been diagnosed with fibromyalgia but I have most of the symptoms. My mom had it as well. My doctor said she doesn't want to put it on my records because that causes some doctors to be a little hesitant about treating you as it is so difficult to treat. She doesn't want me to have a stigma attached and she said she doesn't know if I have it or not. She does believe it is real and just believes that medical science just has not figured it out yet and that is why it is so difficult to diagnose and treat. I appreciated her honesty regarding how doctors often view a fibromyalgia patient. Have you found this to be true? I have been to so many doctors over the years, I cannot even name them all. But thanks for the tip on the Fibro Malic.

Jump to this post

Good afternoon @bastersmom and @lioness. I have to jump in here. Not only is it problematic to enter the diagnosis of fibromyalgia, it is sometimes an insurance issue. I was given a "suspected" diagnosis once and my disability insurance which was provided by the company I worked for, was canceled. They told me I would have to get my own private disability insurance.

I set up the personal coverage application, got all my records, completed the tests and was denied coverage because of that one word, "suspected". I can't imagine what would have happened if it was a confirmed diagnosis. Be careful. Be joyful today.

REPLY

@baxtersmom Absolutely I have had fibromyalgia since the 90,s they didnt know then and they still don,t know the cause or cure so we fibro people are left to explore what helps us . I have been following @parrotqueen and tried the Boron that she research and I did too. It is for bones as I have osteoporosis also. I took one 3mg capsule 3 X a day for 3 days. NOw Im down to 2 and believe it or not but my fibro is gone I dont have any pain muscle or nerves as it was effecting the nerves . I am grateful for the info . @ parrotqueen gave me . I havent taken any Fibro Malic for over 2 weeks now . This makes me feel like it is arthritis or something in the bones that is the cause of fibro . only my thought on this . Im so glad the Fibro Malic is helping as it sure did me but since I have osteoporosis Ive been on the bone meds or minerals. God be with you

Liked by parrotqueen

REPLY
@artscaping

Good afternoon @bastersmom and @lioness. I have to jump in here. Not only is it problematic to enter the diagnosis of fibromyalgia, it is sometimes an insurance issue. I was given a "suspected" diagnosis once and my disability insurance which was provided by the company I worked for, was canceled. They told me I would have to get my own private disability insurance.

I set up the personal coverage application, got all my records, completed the tests and was denied coverage because of that one word, "suspected". I can't imagine what would have happened if it was a confirmed diagnosis. Be careful. Be joyful today.

Jump to this post

@artscaping Wow that I didnt know . I have heard of being denied for various health issues but just a suspected issue I didnt know Glad you brought this up

REPLY

@artscaping @lioness
I did not know it was such a problematic issue with the insurance, etc.
I have been with this doctor for a long time and she is a very good internal medicine doc. I guess she is protecting me. She said she believes that fibro is real but that they just have not figured it out yet. She knows about all of my symptoms and I was just trying to figure out what is wrong since I keep going in to her with these symptoms. She did a massive amount of blood work and urinalysis and everything is perfectly normal. Testing for some autoimmune things too and nothing. I was reading a link on a website called The Mighty and it had an article called "Little Known Symptoms of Fibromyalgia" or something like that. It described a couple of things that have been happening lately that are new like hot flashes and sweating as well as redness on the cheeks and tenderness on the scalp. I just recently started having these in addition to all of my other symptoms and so it made me think even more that maybe I do have fibro.

I guess it is something we just are left to figure out on our own, sad to say.. I am getting ready to start some water exercise and PT in the pool. Hopefully that will help as well. Thank everyone for the information and all the best to you.

REPLY
@baxtersmom

@artscaping @lioness
I did not know it was such a problematic issue with the insurance, etc.
I have been with this doctor for a long time and she is a very good internal medicine doc. I guess she is protecting me. She said she believes that fibro is real but that they just have not figured it out yet. She knows about all of my symptoms and I was just trying to figure out what is wrong since I keep going in to her with these symptoms. She did a massive amount of blood work and urinalysis and everything is perfectly normal. Testing for some autoimmune things too and nothing. I was reading a link on a website called The Mighty and it had an article called "Little Known Symptoms of Fibromyalgia" or something like that. It described a couple of things that have been happening lately that are new like hot flashes and sweating as well as redness on the cheeks and tenderness on the scalp. I just recently started having these in addition to all of my other symptoms and so it made me think even more that maybe I do have fibro.

I guess it is something we just are left to figure out on our own, sad to say.. I am getting ready to start some water exercise and PT in the pool. Hopefully that will help as well. Thank everyone for the information and all the best to you.

Jump to this post

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.

REPLY
@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.

Jump to this post

@rwinney When I had fibro yes I never had the symptoms of face redness or tender scalp symptoms

REPLY
@baxtersmom

@artscaping @lioness
I did not know it was such a problematic issue with the insurance, etc.
I have been with this doctor for a long time and she is a very good internal medicine doc. I guess she is protecting me. She said she believes that fibro is real but that they just have not figured it out yet. She knows about all of my symptoms and I was just trying to figure out what is wrong since I keep going in to her with these symptoms. She did a massive amount of blood work and urinalysis and everything is perfectly normal. Testing for some autoimmune things too and nothing. I was reading a link on a website called The Mighty and it had an article called "Little Known Symptoms of Fibromyalgia" or something like that. It described a couple of things that have been happening lately that are new like hot flashes and sweating as well as redness on the cheeks and tenderness on the scalp. I just recently started having these in addition to all of my other symptoms and so it made me think even more that maybe I do have fibro.

I guess it is something we just are left to figure out on our own, sad to say.. I am getting ready to start some water exercise and PT in the pool. Hopefully that will help as well. Thank everyone for the information and all the best to you.

Jump to this post

@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.

REPLY
Please login or register to post a reply.