Fibro and Me

[Chunkeylaydee]

Hi

I’ve seen a number of people posting about being diagnosed with Fibromyalgia. I thought I could create a thread where we can chat freely about living with Fibro.

Chunkey

 

[Lilbear1]

Wow thank you for starting this post. Was diagnosed with fibro 9 years ago.
Would be great to chat to everyone in same boat

 

[Chunkeylaydee]

I was diagnosed in 2009. I thought finally answers. But realised it was a long lonely road to navigate.

 

[Rockin' Robin]

My partner was diagnosed with Fibro a few years ago. It is heartbreaking to see him struggle day to day, and every day is different. I am wondering what kind of support and trearmtment might be available - other that dosing himself up with prednisolone.

 

[patsy_stone]

I was diagnosed earlier this year...I, too, thought it meant answers, but I'm now stuck in a sort of limbo, with things getting progressively worse.

 

[CrazyHorses]

Hi

I’ve seen a number of people posting about being diagnosed with Fibromyalgia. I thought I could create a thread where we can chat freely about living with Fibro.

Chunkey

Hi
I am quite new to posting on Tattle, I saw this thread and thought I would try and post.
I have fibromyalgia, I was diagnosed a few years ago. Last year I lost my job as I was so poorly I just couldn't carry on working, I am now waiting to speak to the Neurologist. Has anyone else discovered that family and friends just don't bother with you anymore? I am really beginning to feel like the "outsider" I get the feeling people just cannot handle people being poorly,when previously they were relatively active before the fibromyalgia really took hold.

 

[Lilbear1]

Hi
I am quite new to posting on Tattle, I saw this thread and thought I would try and post.
I have fibromyalgia, I was diagnosed a few years ago. Last year I lost my job as I was so poorly I just couldn't carry on working, I am now waiting to speak to the Neurologist. Has anyone else discovered that family and friends just don't bother with you anymore? I am really beginning to feel like the "outsider" I get the feeling people just cannot handle people being poorly,when previously they were relatively active before the fibromyalgia really took hold.

Yes i think people dont understand as its not a "visible" disability.
My family despite knowing about fibro still dont understand.
Luckily my partner does most of the time.
Its having fibro isnt it

 

[cantthinkofaname2]

When you see this post after a ridiculously tit fibro day. Every single b day is a battle whether it be physically or mentally and I’ve had enough

 

[Lilbear1]

When you see this post after a ridiculously tit fibro day. Every single b day is a battle whether it be physically or mentally and I’ve had enough

Totally understand. Hope you are ok

 

[ronniestigs]

i was diagnosed in 2019.

feeling particularly exhausted tonight

 

[Chunkeylaydee]

I’m really struggling post covid. I’m on the permanently exhausted train… my pain levels are through the roof and for some reason, I keep bruising.

 

[ronniestigs]

I’m really struggling post covid. I’m on the permanently exhausted train… my pain levels are through the roof and for some reason, I keep bruising.

I'm finding post covid life a lot harder, i get exhausted so much easier.

sending you love

 

[CrazyHorses]

Yes i think people dont understand as its not a "visible" disability.
My family despite knowing about fibro still dont understand.
Luckily my partner does most of the time.
Its having fibro isnt it

I think you are right about fibromyalgia not a visible disability. Absolutely I hate the fact I can no longer do the things I use too. Everything I want to do has to be paced out. The most simple of jobs can take me alot longer to do, if I try and push myself to do more it can leave me in bed all day the following day. I struggle to sleep the pain in my legs feet and back are just constant,along with restless legs. I have been having episodes of my hands and fingers going into spasms. Brushing my teeth or my hair can be painful.

 

[TapToBoreMeRigid]

I was diagnosed 2 months ago after a year of investigations but 8 years of worsening symptoms. Devastating to me.

 

[CrazyHorses]

Does anyone else feel like they are drunk when you are walking about, but you know you haven't been drinking. It's like a floaty feeling like you are trying to walk on a water bed and not fall over. Also does anyone have bouts of uncontrollable crying or laughter or a mixture of both?

 

[Chunkeylaydee]

That floaty feeling happens to me when I get a middle ear infection x

 

[CrazyHorses]

That floaty feeling happens to me when I get a middle ear infection x

I have it all the time, I have been checked out by audiology and they cannot find anything wrong with my inner ears. Waiting to see the neurologist in December.

 

[fnddlsoxnz]

Hi everyone, I was diagnosed today with fibromyalgia today and I don’t really know how to feel. Even tho I got a diagnosis after suffering for 3 years I still feel like there’s more to it I

 

[Chunkeylaydee]

Hi everyone, I was diagnosed today with fibromyalgia today and I don’t really know how to feel. Even tho I got a diagnosis after suffering for 3 years I still feel like there’s more to it I

I’m so sorry. It’s a lonely path to follow and navigate. What works for one person doesn’t always work for someone else.

 

[Archduchess of Luxembourg]

Hi everyone. I am so glad I have found this thread.

Has anyone else tried changing their diet to see if that helps? I cut put gluten, dairy and alcohol and its not a cure but it seems to have helped a little.

Does anyone else seem to suffer so much more at their 'time of the month'? I seem to be extra sore, exhausted and brain fog is worse.

Does anyone have opinions on whether a soft or firm mattress is better?

I've been so alone for a long time with this so I am sorry for all the questions but I hope we can offer each other support with this b illness xx