Hi there,: Not really sure where to... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Hi there,

Talice profile image
8 Replies

Not really sure where to start to be honest, I’ve never posted on anything before. I’ve just got to the point where I need people who really get this complicated condition. My family and friends are understanding but they don’t really get what it’s like just to get through a day. I am a mother of 4 and life at the moment isn’t easy, I know it’s a cycle and sometimes we cope better than others but right now I’m totally exhausted mentally and physically by the whole thing!

I was diagnosed with fibromyalgia just a few years ago on top of other long term health conditions and just feel like it’s another battle I’m not winning. Weather it’s my bladder condition raging or my fibromyalgia flaring it’s relentless. I have tried every possible treatment private and nhs and I’m just done with all of it, I can’t take another appointment of false hope. I don’t want another pain procedure that the out come isn’t worth the pain. I don’t want another medication that I’m allergic to. I’m just feeling hopeless and thinking this is it, this is the stage I’ve got to and have to except we’ve tried and it’s as good as is going to be.

Just to know I’m not in this alone. Maybe someone has some ideas I haven’t tried yet I would be very grateful.

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Talice profile image
Talice
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8 Replies
Flyby7 profile image
Flyby7

I have got fibromyalgia rumertide arthritis in all joints COPD I get really tired and exhausted I am on a lot of medication had steroid injections my wife is my full-time career I know how you feel you are not alone so try to cheer up 😀

Talice profile image
Talice in reply to Flyby7

Thankyou for replying, Im normally so level headed about this I think it’s just been a difficult time. it’s swings and roundabouts sometimes.

Dinkie profile image
Dinkie

Hi Talice and welcome to the club none of us particularly wants to be in. Life can seem a never ending round of pain and discomfort making everything seem a major problem. Have you tried hypnotherapy and chiropractor. I cant take prescription meds due to the side effects so rely on this sort of treatment to help me cope. I also use tens machine and epsom salt baths and wheatbags and heated wraps. I have found that eating a processed food free diet and a diet free of refined sugars has helped me. Believe me you are not alone and I am sure there will be others along to give a helping hand soon. The weekends are somewhat quiet on here but I am confident others will post with some encouragement for you. Chin up :) you are in the right place for advice and support

westcountry profile image
westcountry

Hi and sorry to hear that you're not coping at present..... I too have Fibro and a very long term bladder/gynae condition. The thing that really helped the bladder condition was electrotherapy/acupuncture by an excellent (private) doctor in Colchester..... it really has been the only thing that sorted that condition, although certain other things affect it like various foods/drink, lack of oestrogen etc.... however the treatment took away the long term inflammation in that area. That doctor will also treat any muscle symptoms (probably Fibro) and RLS. He is very expensive but it's worth it to get rid of these dreadful symptoms! Maybe try and find a similar doctor near to where you live? Even if you sort one problem, then it's one less to deal with.....small steps. Good luck!

Talice profile image
Talice in reply to westcountry

Hi there,

Thankyou for taking the time to reply. I have tried electrotherapy and acupuncture in the passed, but would literally try anything as my quality of life has taken a nose dive of late. I live in Norfolk and have tried various specialists but maybe it’s worth me looking again.

Take care

Maggie_Dexter profile image
Maggie_Dexter

Hi Talice,

This is my first post here, but I've been around for a wee while. I was diagnosed with fm over 16 years ago and completely understand how you feel. Sometimes all we need is a gentle hug and a sympathetic ear...

So I'm sending you a big soft cuddle from Scotland. :-)

Be kind to yourself,

Maggie.

Talice profile image
Talice in reply to Maggie_Dexter

Thankyou, after having this for so long you totally understand that it’s good days and bad days. Sometimes I feel like I have it all in hand and then life throws a curve ball and i feel like I’m drowning. It’s just one day at a time, the guilt I feel is as bad as the pain right now. The pay off for trying to have a ‘normal’ life is massive, weighing up weather it’s worth the week laid up to just have one day. My youngest son has never known me well and that’s heart breaking, I feel like he’s been robbed. I truly reckon the combination of conditions have added 20 years on me. Looks like another sofa pjs day.

Take care

Maggie_Dexter profile image
Maggie_Dexter

Hi Talice,

Sorry for the late reply...sometime my awareness isn't very aware (just noticed there's a bell at the top of the page).

I know it's really difficult for you sometimes, my son was 7 when I was diagnosed. The feeling I had when he ran in from school and wrapped his arms around me whilst I tried not to recoil will never fade. I thought I was a pretty useless mother most of the time as I couldn't do all the activities we used to do together.

Fast forward to recently, talking to my son about this awful condition and admitting I felt

guilty he didn't have the mum he started out with. He laughed at me, said I was a "cracking wee lady but I need to get a grip", and rattled off a big list of all the things I DID do.

I guess what I'm trying to say is, we judge ourselves so harshly, harbour resentments and hold on to guilt like it's an invisible crutch instead of being mindfull of the things we actually do. When it comes right down to it you're a great mum, ask your kids , they know best ;-) .

Take it easy,

Maggie.

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