What is the most frustrating or difficult aspect of living with fibromyalgia?

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Edited on 19/02/2016 at 19:28

Hello everyone,

Fibromyalgia is a very individual disease and affects everyone differently. What is the hardest part to deal with in your daily life? The pain, the fibro-fog, not being able to work or do the gardening or maybe that people don't understand what you are going through?

Share your experiences and struggles here.

All the best

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FibroClaire

27/10/2020 at 16:02

FibroClaire

Last activity on 27/02/2023 at 11:24

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11 comments posted | 11 in the Living with fibromyalgia group

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@Courtney_J @elliewc‍ Yes, the uncertainty can be maddening! I can never be sure of how I'm going to feel when I wake up in the morning. I may have plans for the day but my body may or may not decide whether I'll be following them!

@gdxahd‍ What an interesting theory, I'll have a read later. I've never thought about it that way.

What is the most frustrating or difficult aspect of living with fibromyalgia? https://www.carenity.co.uk/forum/other-discussions/living-with-fibromyalgia/the-hardest-part-of-dealing-with-fibro-80 2020-10-27 16:02:24

Cookie 321

18/11/2020 at 21:07

Cookie 321

Last activity on 18/11/2020 at 20:34

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1 comment posted | 1 in the Living with fibromyalgia group

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Hi I’m new here I was diagnosed in 2009 but refused to believe I had it so buried my head in the sand and just kept going I have osteoarthritis and diverticula disease to ,After surgery to remove my sigmoid colon last year I felt great for around a month and then things when down hill from there I really miss being ME I feel like a different person all I seem to do is complain and feel rubbish I worked until recently and am currently of sick but the longer it goes on I feel I won’t get back to my job and have to accept this is the way it’s going to be from now on .

pateve

20/12/2020 at 00:51

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pateve

Last activity on 11/10/2021 at 15:52

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28 comments posted | 5 in the Living with fibromyalgia group

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@FibroClaire Hi Claire - I hate not knowing what I'm going to feel like every day, I wake up. It makes it very difficult to arrange anything, long term and I've no idea what to do to help it, like you. I have no confidence in the meds I've been given and wonder if it's worth continuing with them? Have you tried anything that relieves your pain, at any level? Hope you can enjoy some of Christmas.

FibroClaire

14/01/2021 at 12:45

FibroClaire

Last activity on 27/02/2023 at 11:24

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11 comments posted | 11 in the Living with fibromyalgia group

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@pateve Hi pateve, sorry I somehow missed this, I was so wrapped up with lockdown and the Christmas holidays I think! And here we are again in lockdown. Oh yes, I've tried a multitude of things to middling results, unfortunately. I really wanted to avoid addictive painkillers so they had me on Prozac for a while because antidepressants are thought to help with pain. I didn't really see a difference in the pain but had some negative side effects because of the Prozac. Hope you had a wonderful Christmas and New Year as well! xx

libra98uk

18/02/2021 at 08:40

libra98uk

Last activity on 15/10/2024 at 03:14

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2 comments posted | 1 in the Living with fibromyalgia group

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When I was given the diagnosis, it was a relief. Finally, someone believed me. The next struggle was to get family and friends to listen and hear about not patting me, or cuddling me, or leaning on me. With the grandchildren I just gritted my teeth and accepted the pain with their love, but, adults should know better, yes!? No! I keep getting, I'm sorry. I forgot! Or, Oops! It has been 5 years people, remember!

MariaB

21/04/2021 at 18:11

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MariaB

Last activity on 14/02/2024 at 13:17

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@libra98uk Yes that happens to me too! People seem to forget that I have fibro and that it's not just going to get better or go away! With children of course it's a bit different, but the number of adults who come at me for a hug after I've reminded them in the past (less now with COVID) is astounding.

Rozanne

17/05/2021 at 23:28

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Rozanne

Last activity on 28/08/2021 at 00:24

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For me it is so of these, then my friends and family telling me it's just a mindset thing as they know people who had Fibro and are now back to normal and in one case a gym instructor.

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Tiger1924

22/05/2021 at 17:29

Tiger1924

Last activity on 12/07/2021 at 15:15

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@Rozanne I have had Fibromyalgia for 20 years, (I will be 61 next month) & most people I know treat me like I’m some kind of hypochondriac including doctors & I have tried just about every drug there is on the market but nothing helps. I’ve also tried numerous alternative natural remedies & again hopeless. I try to keep active & just push through my pain but the worse thing for me is lack of sleep & IBS. I’m sure this damn condition worsens with age & I can quite honestly say it’s ruined my life 😢

Rozanne

22/05/2021 at 21:29

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Rozanne

Last activity on 28/08/2021 at 00:24

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@Tiger1924 I go through phases where I get hopelessly depressed and wonder why I bother. It is such a difficult thing to come to terms with. I've gone from impulsive, go out walking or driving for hours to a place where most of the time I'm too nervous to go outside because of the pain and exhaustion I will feel the next day. I don't know if it's ruined my life as such, just taking me in a direction I'm not comfortable with. Perhaps I'm ever hopeful but I am fighting to find a way to enjoy life again, even in as very limited manor.

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pateve

23/05/2021 at 20:30

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pateve

Last activity on 11/10/2021 at 15:52

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28 comments posted | 5 in the Living with fibromyalgia group

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It's the tiredness that is so frustrating and makes me annoyed with the things I want to do but can't because of the tiredness. I used to be so active and now I can't do even 50% of what I could 6 months ago and I don't understand why? I've tried different medicines but nothing helps, even alternative medicines, all to no avail. No Dr. seems to understand my condition at all!!!!

What is the most frustrating or difficult aspect of living with fibromyalgia?

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