Well-known, famous people with fibromyalgia

When I was first diagnosed with ME I was told it would take six months up to two years for recovery.

 

Did they explicitly say when, what date, this expected recovery time was from?

Over the years I've met/known a few people with FM, I've not heard of any of them recovering, but I'm not saying it doesn't happen, the number of things, that do happen, that I don't hear about.......is probably a significant number.

 

I was told two years, too. That's BACME training for you.

 

I was told within a year...now you just need to do this GET programme

 

I was told that I was 'atypical' and would make a full recovery within a few years by an ME 'specialist'. But, I was also advised not to exercise or over do myself after recovering.

 

So after having made a full recovery, you wouldn't be able do to the things people who have not got ME could do?

Sounds like an interesting definition of full recovery to me.

 

@Wonko my diagnosis at the time was PVFS.

 

That was my diagnosis, also. When I questioned my doctor about the name a year later she told me that it was the same thing as CFS - she just didn't like the name CFS so she used PVFS.

 

That's a coincidence, my diagnosis, over a decade ago, was also PVFS.

Being fully recovered from PVFS sucks.

 

Just last year my diagnosis was CFS when I took a peek at my GP's computer screen.

 

Ah - the magical 2 year recovery . Seems to work on the basis of if it' s repeated often enough it must be true....

 

Fibromyalgia is more treatable than CFS, so maybe that's what they mean

 

My GP said 'In ten years time this will all just be a bad dream.......'. 17 years on and the nightmare continues.......

 

I think they all do now. But it's been moved from mental health to something else. It said 'musculoskeletal problems > chronic pain > CFS' or something on my documents from the DWP.

 

@adambeyoncelowe . . . according to my GP of 35 years who sent me to various specialists in 1991 when I fist became ill, it's 'fatigue". When she asks, 'how is your chronic fatigue?" I don't even reply.

 

I'm another who was told 2 years, though to be more accurate the GP actually said that he couldn't say how long it would take, it could be "2 weeks, 2months or 2 years". I think he must have forgotten to include 2 decades... 2 centuries. Anyway, so far 2 years, like tomorrow, hasn't come.

 

Since I didn't know who Lauren Laverne is, I googled. At least the info about FM in the media coverage seems pretty good? Both the articles I took a peak at mentions "no cure".

Perhaps she/they only ment trying to get enough symptom management in place, to see if continued work is possible for her case of FM?


https://www.theguardian.com/media/2...sert-island-discs-fibromyalgia-lauren-laverne

https://www.independent.co.uk/life-...irsty-young-desert-island-discs-a8516051.html

 

Post viral syndrome was not controversial in the 60s and 70s. It seen as commonplace among my family that people could take a good few months to recover from a virus and get back to what they were. My husband took a bad post viral after flu which lasted for months. The thing is this was before CFS. There was no overlap with ME. Post Viral Fatigue syndrome was a new name that was brought in for ME at around the same time as CFS but never really took on, (except obviously for some doctors!) but it has joined the mess that is CFS.

Now, on the one hand, people get a post viral syndrome for want of a better word, but they are told they have chronic fatigue syndrome, recover and join the ranks of those who think they got better because they are not weak and didn't give in to it and then people who have ME are fobbed off with getting better in a few years.