It just gets worse!

[Dianne51]

I’ve had Fibromyalgia for years. I never knew it that it would get worse. I mean the start was a shock to my system. WOW!. I don’t sleep, I do sleep. Tired all the time, yet I lay awake all night!. My doctor seems to think that she knows more about my fibromyalgia than I do. My medication gets changed all of the time. My daughter died of not been diagnosed in time aged 35. There does not seem to be a ease. So perhaps one day. We who suffer, mostly silently . May just be heard when it’s far too late. So for all my sufferers. You are not alone.

[fmlife]

gentle hugs,

the cold does not help either, there are so many co issues that seem to appear. just when think got the rest and pacing right the fibro strikes back.

Hope have a less pain day.

[fredsmummy]

Dianne,

Just wanted to reach out to say your not alone either!

So very sorry for your loss x

Yes , certainly with all the physical pain comes the decline in emotional well-being too. Tried to come off Duloxetine recently for pain as didn’t feel it did anything but then realised how much I need it for depression , particularly if you have pain in your heart already.

Sending you strength and light ✨

Zoe

[Blearyeyed]

I hear you.For decades I feel like I just get a balance right that I can live with and then some other illness comes up and bites me on the bum and I have to start reassessing , adapting and changing everything again.

My Fibro seems to get worse with each new diagnosis of something else , or it seems to want to take revenge on me for keeping under control too long by making each new flare harder and longer than before.

If anyone says that a Fibro warrior just can't deal with pain they have no idea , we become so strong and so good at coping with pain that the type of aches others complain with feel like a good morning to us.

Take care and keep positive, it's all we can really do , Bee

[desquinn Partner Volunteer FMAUK Trustee]

Doctors and particularly GPs are general practioners so will have varied levels of knowledge across conditions. Some will definitely know more about fibromyalgia that you but just like with other chronic conditions e.g. Type 1 Diabetes there are patients that their individualised fibro requires a rethink from a GP and time to get up to speed. But this does not diminish their professional knowledge and experience but does test their professionalism.

Sorry for the loss of your daughter at such a young age. I presume it was not fibromyalgia?

Our condition is one of the most challenging for GPs as we all vary so much and the tools that help us are very person specific so it is a poor game of trial and error with lots of errors before any improvement pokes through.

[Yassytina FMA UK Volunteer]

So sorry too read about your daughter, this horrid condition can up it’s game for sure , sleeping I read can a problem for a lot of fibro sufferers and differently have an impact on our day. I am glad we can talk here as people really do get what it can be like day to day . Sending hugs xx

[1whitestar]

I was diagnosed with fibromyalgia but my fingers and toe and hands swell. I had an ultra sound and there inflamation so I have to wait till I go back to rumerthogly. My father had gout my doctor has asked me about family history this issue is in my feet legs everywhere does anyone know anything about this .

[Patdoyle]

yes and they say it doesn’t get worse. Yes it damn well does!

[glochessum]

I totally agree with you Patdoyle mine is definitely worse now from when I was diagnosed. I would so like to have the old me back.

[Dizzytwo Moderator]

My condolences on the loss of your daughter at such a young age.

Like Des, I presume her demise was due to some other undiagnosed illness and not fibro.

But it goes without saying it must have been very upsetting and stressful to have lost your daughter at such a very young age. The effects of your loss I'm sure caused your fibro to flare up badly and have been hard to deal with on top of your sad loss xx

Momo

[Alanna012]

It's horrible to be in pain and not know why or have a diagnosis, I can't imagine your daughter's physical suffering, or her mental suffering I'm so sorry.

I find Fibromyalgia is a bit of a chameleon it 'adapts' I even went on a super strict AIP diet which helped like a miracle at first, I was raving about it, but then sure as the sun shines in July, it slowly started to assert itself again!

Of course there may be other issues that aren't dealt with in the background but it does seem a very difficult illness to get control of. I was doing ok until catching flu a couple months ago. Have been a pain zombie since. Stick inside, not going anywhere. It sucks. This morning was killer, it was terrible frankly.

[Alanna012 in reply to Alanna012]

Sorry I got interrupted. The difficulty is knowing how to adapt when 'it' adapts. Your GP should not be changing your meds frequently but slowly titrating upwards gradually with monitoring and follow-up.

Sometimes we also need alternative approaches like homeopathy, or nutritional therapy, or even bio-identical hormone treatment or HRT to help. I think the focus has to be helping as opposed to curing.