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Fibromyalgia Action UK

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Good morning good morning foodmorning

Treewade profile image
8 Replies

Suns up skies blue and it's another beautiful day here in Leeds ok yup I'm In that world o mi own place again, rheumatologist appointment other day was weird twas a take ya clothes off hop on the bed n let me examine ya have a modesty sheet, why you can't examine me over it. Yup still got fibro Mialgia was well shocked lol but then he said but I would be more concerned bout the hyper mobility cos ya knees will eventually collapse n check out the brain fog cos it could b early onset alzhimers. Then I left feeling well chuffed wi the world and another booklet on fibro Mialgia. Got on bus n googled hyper mobility only cos he told me mi knees n ankles were in wrong position mmmmmm didn't realise being double jointed in most areas was hazzardous to your health if you don't exercise enough r gain weight xxxxx so if your kids r double jointed get em t docs now lol xxxxxx

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Treewade profile image
Treewade
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8 Replies
ukmsmi4 profile image
ukmsmi4

Hi there

Interestingly I have seen many comments recently about the number of people being misdiagnosed with either ME, CFS or fibro. Because there are so many things that have similar symptoms but are also difficult to diagnose it is believed that as many as 40% are misdiagnosed. Personally I haven't a clue how accurate that is, it's just what I have read.

Just wondered though because one of the many things that people say we could actually have is EDS. Have you ever been tested for that or looked at it. I only ask because you say you have hypermobility. That is not one of the symptoms for ME, CFS or fibro but it is a crucial one for EDS. But EDS also includes fatigue etc.

Might be worth a look if you haven't already . .

ehlers-danlos.org/about-eds...

Margaret :)

TheAuthor profile image
TheAuthor

I am so genuinely sorry to read that, and I sincerely hope that you so not have any early onset Alzheimer's. My mind boggles on occasion when these so called professionals frighten the living daylights out of patients with clinical diagnosis of things that are then proved to be nonsense a year or so later. Please take care of yourself in Leeds, I hear it is going to be a wee bit cold up there for a few days.

All my hopes and dreams for you

Ken x :)

Treewade profile image
Treewade in reply to TheAuthor

Heard snow is due hoping it hasn't hit I don't like being on my but when it's wet cold n Icy but somehow that happens early onset alzhimers runs in family n there r a couple of us cousins worried about it who d think I d ever hope I had brain fog lol xxxxxx thank you for the kind words n was that an invite of somewhere t stay if the cold gets too much n we migrate southwards xxxx

TheAuthor profile image
TheAuthor in reply to Treewade

I am so genuinely sorry to read that it runs in your family and it must be a cause for concern. Please take care of yourself if it does snow or gets icy x :) x :)

Treewade profile image
Treewade in reply to TheAuthor

Will try snow hit but was gone before I got up hope it don't come bk xxxxxx

Midori profile image
Midori

I have a certain amount of Hyperextension in my knees, which I didn't know about until my Rheumy told me, but nowhere else. My son however, has it quite severely in his knees and elbows, and has from time to time dislocated a shoulder, which he reduces himself by running into a wall! Scary!

Treewade profile image
Treewade in reply to Midori

Most of my children r double jointed one can skip with her hands together and put her legs round her knock another did contouring and all have done gymnastics I hate to think how bad they r going to suffer in later life I thought flexible joints was a good thing boy was I wrong cxxx

jpet72 profile image
jpet72

Sounds like hyper mobility - my twins have it. You do lose a degree of flexibility but it's associated with arthritis in older life as well as other things so get them checked. Double jointed is them dislocating their fingers, thumbs etc

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