Want to wake from this nightmare! - Fibromyalgia Acti...

Fibromyalgia Action UK

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Want to wake from this nightmare!

HBpencil profile image
8 Replies

Hello. My first post on here.

I have been diagnosed with fibromyalgia now for 2 years. In denial at first as l had so many different things wrong with me I thought l would just tackle one at a time and be fine....however. things have just progressed rapidly to the point where l can no longer work. Today l am in so much pain l feel like my torso is being crushed. So nauseous l dare not eat. I am very lucky as l have a supportive partner, but feel bad for him as we miss out on so much. Holidays are a thing of the past, family weddings and almost no social life as l am ALWAYS ILL! I used to have the odd "good day". But not anymore. I am also due to have a total knee replacement in 3 weeks. But not sure whether to go ahead.....Anyone here had one done?

Thanks for reading .

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8 Replies
YASMINTINA profile image
YASMINTINAFMA UK Volunteer

healthunlocked.com/fibromya..., Hi there and welcome, I felt this way last year seeing my family do things like you say weddings, events, and being left behind and I sank quite low at the time , my husband was a great support and the love of close friends , my young grandchildren were the things I told myself I had to make the most of , what I could do rather than trying to go long periods of time and make myself feel worse, after a while it clicked with people that they could see me but for shorter spells, Summertime they would bring their food to our house and cook then in return my Hubble would barbecue and we would foot the bill so this really lifted me even sometimes I’d lay on the garden sofa but they would make me laugh and I felt part of it. I wake up each day knowing I’ve got the comfort of home and my own surroundings and if I’m able to go out for a period of time that’s a bonus but I know what you mean life changes and pain is horrid to live with. If you go forward with knee operation I wish you well and let us know how that goes. I’ve posted a link above if you would like to lock your posts, gives you more privacy and not open to any other site engines on the internet. I hope joining the forum you get to chat with others , people are very nice and can relate to you, lots of posts with members sharing experiences , little tips etc and friendly banter, take care xx

HBpencil profile image
HBpencil in reply toYASMINTINA

Thank you for your reply Yasmintina. I feel terrible moaning...when l have so much to be grateful for. I do try and concentrate on the positives, but it's hard sometimes as you must know. I have a wonderful doctor and we have now wiped the slate clean and starting from scratch. Had some more blood tests today as l have been so poorly lately.

Thanks again for taking the time to reply. I wish you luck and hope things improve for you.

Hazel. X

YASMINTINA profile image
YASMINTINAFMA UK Volunteer in reply toHBpencil

Honesty sometimes we need a good moan and no harm in that, I’m really hoping you will pick up a little soon, it’s hard because I’ve been there so can really relate to you, the sun is shining in Suffolk today and so looking forward to Spring. Hoping those bloods come back soon and not too much for concern. Managed to see my grand boys for short time, the little 2 year old held my hand and said come to my bedroom and see my toys bless, when I went he cried as I was leaving , just gave me that warm feeling to be loved. I’m glad your doctor is good , I’m seeing mine next Friday as been awhile very thorough and trust his judgement. Take care Hazel sending these 🌺💐🌸xx

HBpencil profile image
HBpencil in reply toYASMINTINA

Hi Yasmintina.

And thank you for your response.

It's sounds like you have a lovely family.....

I have just come back from my pre assessment for my knee replacement and decided to defer it to a later date. I don't think l am in the best place physically or emotionally at the moment to undergo major surgery. Hopefully have it done in a few more months.

The worse thing about these hospital visits are the lights! I have become light sensitive and end up with vestibular migraine and throwing up. Never had so much as a headache til this started...so as much as l enjoy the sunshine l now have to wear dark over glasses and a peaked hat. (At least no one recognizes me!)

Good luck with your docs appointment. X

YASMINTINA profile image
YASMINTINAFMA UK Volunteer in reply toHBpencil

I understand wait till you feel you are ready I have done this in the past. I did a visit to Colchester zoo yesterday with my daughter and grand boys, I know I would suffer today my knee swelled and not in great shape , resting in between house work but differently need a day at home, Sunshine was out but heaving with people properly picked the wrong week to go with half term , very hard for little ones to see the animals, quite expensive for families to get in , I did help out with the money side. I’m wondering as Ive read so many times on the forum about lighting affecting fibro sufferers, I cannot look at flashing lights now. Differently with you wearing hat and dark glasses. Take care xx

HBpencil profile image
HBpencil in reply toYASMINTINA

I hope you haven't paid too high a price (pain wise) from yesterday. Shame it wasn't as pleasurable as it could have been. Good that you're getting yourself out though....x

turkeywoman11 profile image
turkeywoman11

hi I went thru a lot of what u are when I was first diagnose , u will have a lot of days of being in pain and miserable I try to find the humor in this dumb disease, when ur doc gets u on meds and natural meds u will feel better and u will learn how to read ur body and what u can do on some days and when u need to stay in bed ur not alone I live in Kansas us yasmintina is right u find the things that make u happy and able to have a life

HBpencil profile image
HBpencil in reply toturkeywoman11

Thank you for responding. I am having trouble coming to terms with it as l have numerous health issues. The pain l can deal with to a certain extent. It's the feeling so unwell that gets me down.

My sense of humor has abandoned me for the moment but l am sure it will return soon.

I am fortunate in that l have a very understanding partner. And lots to be grateful for. Thanks again. X

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