Not surrendering to fibro

Muir

New member
Joined
Jan 29, 2021
Messages
1
Reason
DX FIBRO
Diagnosis
09/2005
Country
US
State
GA
I was dc with fibromyalgia 18 years ago and it has been a rough road to travel. One of the hardest things I’ve had to deal with is others not understanding what I go through. Not a day passes that I am not in pain. People and especially family don’t see what I’m going through and mostly don’t try to understand.
I had an EMG about 14 years ago and after the test was told by the doctor that he didn’t understand how I dealt with the pain. He said to me that he would not be able to function with my pain levels. Another doctor put me in for SSDI and I didn’t know it until I got a letter and a check 3 months later.
The hardest thing I face is the fact that my family doesn’t see it. I am be hurting so much that I just want curl up and cry, but they can’t see it.
I do volunteer work to keep busy as I am not supposed to work. I hate losing and feel that if I just stay home and do nothing then the fibro wins and I lose.
Social Security has referred me to three agencies that do job retraining at my request but they turned me down after looking at my medical record. None of the medications they have tried works, narcotics keep me awake and do nothing for me. I walk, do other exercises even though I know I may have to pay for it. I’m willing to pay the price rather than do nothing. I have to take heart meds from time to time because if the pain level gets high so does my heart rate and BP.
I’m open to any suggestions that might improve my situation. I am currently thinking of going back to school to get a PHD even though I’m 69 years old. I just don’t want to lose by sitting at home
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,658
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Hi Muir,

Clearly, to me, you are a very courageous and strong person. Many of us here, if not all, know what it is like to have people not believe or understand us because they cannot see the pain we are in. It is one of the hardest things we have to deal with, and of course that's on top of the pain which is more than plenty already. And it takes a lot of energy and strength to deal with everyday things that others find easy and take for granted.

Suggestions? Yep, I have some. Here is my post on things you can do to help yourself manage FM. If you have any questions, please feel free to ask at any time. We are here to help and support each other, and I am glad you found us.

 

Forgetmenot

Extremely helpful member
Joined
Oct 6, 2014
Messages
1,476
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
God that’s hard as I get why u wouldn’t wanna stand around at home all day,But maybe because you refuse to show loved ones how much you hurt but keep going they simple can’t see it.like saying your legs hurt them walking ten miles ,maybe you should take someone to the dr with you ,to explain your pain, dr will do that if u request it next time yours there.Your creaky a fighter .we all have to be dont we,I don’t think many ppl understand fibro pain.
So what’s the point to my post,let ppl in more ,maybe stop being super human,maybe a turn about in how much you do might show loved ones you really do hurt.
 

JukeGen

Member
Joined
Sep 26, 2021
Messages
26
Hi Muir,
I can kind of relate to what you are going through. I lost my job a few months ago due to my employers pushing me out of the company because they didn't want to make simple changes so I could stay (yes I went down the grievance route which went in my favour but nothing changed so I had to leave because the stress and pain from it all got too much to handle) I went back go college and it was great. I had a purpose again and it really did improve my life and it was a great distraction from the pain. Unfortunately I get very ill over winter which I'm trying to get to the bottom of with the doctors but as usual these things take time so I'm signed off from college for 6+ weeks and I've been told I'm not allowed to do any college work and it's driving me crazy. In the UK we have Open University where you do courses online. Its looking like I won't be able to finish my year at physical college so I've started looking into the OU for free courses I can do at home whilst I wait for this to be figured out. If there's anything like that near you I highly recommend it especially before you go back into a physical college. It would help build your stamina and help you to work out what your boundaries are and give you time to work through them before committing to a physical college and potentially ending up feeling broken and beaten like me. I wish I had gone for an online course first. Hopefully this gives you something to think about and helps :)
 

Auriel

Senior member
Joined
Jun 8, 2021
Messages
413
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
@Muir I love this post, I love how your not letting fibro take everything away from you, my family also don’t understand my condition (they don’t want to though they’re icy cold🥶heartless) my sister and brother-in law have named me lazy git so that gives some indication of what they’re like (but I have a lot of info about them and things they’ve done so they need to discredit me) anyway, I had to leave my job nursing the elderly but like you I don’t wanna give up + right now I’m being trained to work for women’s aid, also having a dog is really good cos dogs are lovely and it gives you motivation to take them out every day you are a fibro warrior in the truest sense 🥳👍🏻💪🏻🏋🏻‍♀️😗💖
 
Joined
Jul 22, 2021
Messages
13
I feel your pain! Everyday is a struggle. Only thing I have found that helps is Metformin. Google it with fibromyalgia pain relief. Start slow. It has taken the edge off.
Best of luck. I feel for you.
 

Auriel

Senior member
Joined
Jun 8, 2021
Messages
413
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
I read few weeks ago about how some people had been given metformin to help with fibro pain and how it seemed to make a difference ♋️ 💜🔮
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
708
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
I read few weeks ago about how some people had been given metformin to help with fibro pain and how it seemed to make a difference ♋️ 💜🔮
Its use does sound very interesting, with some impressive results for fibromyalgia.

I did notice a study from last year that found that taking high doses for longer periods (it was a 6-month study) may actually make peripheral neuropathy worse. It was a very small study, and was looking at diabetes induced neuropathy specifically, so not necessarily a red flag for us lot, but definitely something to read up on! They also found that the drug appeared to significantly reduce vitamin b12 levels in participants, so supplementing could be something to consider for anyone thinking of trying metformin for fibro.
 

Auriel

Senior member
Joined
Jun 8, 2021
Messages
413
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
Yes it was just something I’ve been reading along the way jem’s in my “very” long search of things that might make a difference for us with this thing, I also stumbled on something called guafenesin ??? ps hope your ok jems and everyone else too 🥕🐇 🐇🐇
 
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Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
708
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
Yes it was just something I’ve been reading along the way jem’s in my “very” long search of things that might make a difference for us with this thing, I also stumbled on something called guafenesin ??? ps hope your ok jems and everyone else too 🥕🐇 🐇🐇
That one's totally new to me 👀 Google deep-dive commencing!

I'm OK, thanks lovely. I hope you are too 🪄🎩🐇✨
 

Auriel

Senior member
Joined
Jun 8, 2021
Messages
413
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
Ooh bunny + a magic hat I love that! 😁🤣😁 and yeah I’m 👌🏻
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
708
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
I also stumbled on something called guafenesin
The only tiny clinical trial that ever looked at it found no benefit, and the original theory of why it might work seems to have been debunked, but, the testimonials on drugs(dot)com are pretty compelling to read through. Interesting stuff!
 

Auriel

Senior member
Joined
Jun 8, 2021
Messages
413
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
Oh it was just my annual having a look around 🧚🏻‍♀️🧜🏻‍♀️💜
 

Jemima

Very helpful member
Joined
Jul 30, 2020
Messages
708
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
Oh it was just my annual having a look around
That's how we find the magic! I don't think we can wait for medical breakthroughs - it's great to read the science, but there's a lot to be said for figuring it out for ourselves! I'd love to know if you try any of this stuff. I think I'm taking an experiment break for a bit, but you never know what's around the corner 🔍😊✨
 

Auriel

Senior member
Joined
Jun 8, 2021
Messages
413
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
Sure that’s what I’m doing right now, sticking to what’s helping , while having a little look now and again, take care jem’s your a lovely lovely asset to the forum 💝💞💝
 
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