Just Diagnosed : Hi everyone,I'm... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Just Diagnosed

Crochetdog7 profile image
7 Replies

Hi everyone,I'm finally able to say that I have Fibromyalgia and that feels like a huge milestone that I have passed as it's been a massive relief to be diagnosed after a long time and im able to say out loud that I have fibromyalgia to people. I'm now reading up on verified information to see just what I can do to help myself manage. I lost my partner suddenly in 2021 and have also had major neck surgery for cervical spinal stenosis and had a cage put into my neck. Right now I'm suffering a massive flare up and the pain is almost unbearable but I'm still going into work but I'm not pushing myself, I take a hour to get out of bed as I do breathing and some physical exercises to help me before I get up. It would be great to hear of things you all do to make it through the really tough times and any advice on diet changes that have helped, I would be very grateful.

🙂

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Crochetdog7 profile image
Crochetdog7
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7 Replies
Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff

Hi and a warm welcome to the forums. You can find general information on fibromyalgia at our website fmauk.org and our patient information booklets at fmauk.org/publications

Cat00 profile image
Cat00

I'd say you are already doing good things. Taking time in the morning is something I have to do and to a certain extend is when my fibro hurts the most. This means my husband has to take the kids to school bc it takes a while for me to know how bad the day is going to be pain wise. It does mean he doesn't get home til 7 in the evening but it's one of the adjustments we've had to make as a family to accommodate my conditions.

Fra22-57 profile image
Fra22-57

I applaud you for still been able to work..I had to retire with ill health and even getting dressed etc sometimes I am out of breath.Loss and stress can bring these diseases on.I was fit as a fiddle until my mum died but my heath plummeted from then.Only people who experience these diseases really understand .People understand so much but then forget why you can’t join them at events or moan about the pain etc.I just try and do what I can and when good add a bit more .I hope now you are diagnosed your gp can give you something to help

Yassytina profile image
YassytinaFMA UK Volunteer

Sorry too read of your loss, you certainly have had a lot too contend with, your routine in the mornings sounds good too have this in place and now especially venturing out in the cold mornings. I am glad you are pacing yourself at work and hopefully being kind too yourself at weekends with some chill put time. It does give us some relief too find out the diagnosis as I found that things I was going threw all fell into place and made sense. The forum is a good place too read some posts, get some good advice and in general I found the pacing method the most helpful. I do eat a fairly good diet in general and I do take supplements too help especially this time of year, (always run this by your pharmacist if on any medications) I love my soak in the bath at night always helps too relax the body down before bedtime. Xx

dinkic profile image
dinkic

Sorry to add you to the club, I have had this condition many years, pacing is the most important thing and not feeling guilty is you are unable to do anything (still working on that one)

Gulfstream_Maggie profile image
Gulfstream_Maggie in reply to dinkic

You're not the only one there. Guilt is so bad for me sometimes cos I can't do what I used to do. Sometimes makes me feel useless!

fmlife profile image
fmlife

Hi

have fibro, huge welcome for reaching out to this space

sorry to hear lost your partner, gentle virtual hugs.

my biggest advice would be not to tell non fibro folks, if do keep your circle very very small.

mainly due to none understanding, gossip mongering and everything thing they do behind back in the way of"'caring'", before know it you be classed as the fibro person who is bla bla bla. It takes some real guts to go to places as they all staring and commenting on everything do, then come and tell you about it.. All smoke and mirrors no one needs to deal with when dealing with fibro. If only life could be like a hallmark movie.

I went gluten free, dairy free, yeast , tea free, they put barley malt in tea as a flavouring and flour in frozen stir fry veg and frozen chips.

stay as flexible as possibly can, and keep warm, the cold messes with fibro in a nasty way,

keep smiling

accept daily living aids as your friends to making life easy if need a new peeler, or an electric chopper as will make life easier go for it.

plan only one easy thing a day, everything else is a bonus.

keep a fibro diary.

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