Fibromyalgia Action UK
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Been meaning to ask this for a while but kept forgetting!

Hi all - fibro fog strikes again and a question ive been meaning to ask for over a week had completely gone out of my mind until i just read something on someone else's question!

I got told by rheumatologist that i was hypermobile. I found this very shocking as my joint are always so sore and tender i cant move them freely let alone more than a normal person so doesnt this show that in fact i am not hypermobile??

hopefully that makes sense to read as what im trying to say and what i do say aren't always the same thing lately!

xxx

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Hello Hjones, I am posting a link to an NHS site that gives lots of information on Hypermobility Syndrome. I hope this helps you. If you have any queries about this, it would be a good idea to get clarification from your Rheumatologist.

nhs.uk/conditions/Joint-hyp...

Joint hypermobility and joint hypermobility syndrome -

Joint hypermobility is where you have a wide range of movement in your joints. It is not a condition and does not require treatment unless it causes symptoms such as pain or joint instability.

However, if you have hypermobile joints that cause symptoms, such as joint pain, you may have joint hypermobility syndrome.

Many people with hypermobile joints do not have any problems or need treatment. However, joint hypermobility can sometimes cause unpleasant symptoms, such as:

joint pain

back pain

dislocated joints - when the joint comes out if its correct position

soft tissue injuries, such as tenosynovitis (inflammation of the protective sheath around a tendon)

If hypermobility causes these types of symptoms it is often called Joint Hypermobility Syndrome.

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its all very confusing!

she said i have fibro and this and because of the combination of hypermobility and fibror if it was a thats why i find myself in such pain.

would be so much better if i could just have a straight forward illness!

thank you

xx

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Yes I understand Hj, I think life would be a lot easier for all of us if we had something simple, I often think that. Take care.

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most definiatley!

someone asked me today what fibro was after i told them its what i have and i just kinda looked at them, wondering how i could explain it quickly as i was in a rush but still well enough so they could understand what an awful illness it is. after a min or 2 i just said its hard to explain, ill tell you next time i see you!

at least with most illnesses you just have to say the name and people know what you are talking about. i am yet to come across anyone who knows what fibro is!

xx

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Most members of the general public don't have a clue what Fibromyalgia is. I don't think I've met anyone who initially knew what it was. That's the big problem we all have. For all intents and purposes we all look quite normal, no-one has any idea how much we suffer every day, how much our lives have changed through having Fibro.

All we can do is to persevere with it, I am sure one day it will be fully recognised and treated appropriately too. There is too much airy fairyness at the moment which is why we have to fight so hard to be heard and to be understood too. Take care Hj! :)

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I have hypermobility too; apparently my knees are freakish in their ability to bend the "wrong" way. I had been told before, many times, that I was extremely flexible, and this hasn't changed despite the pain I'm in. All my joints are stiff and sore, but actually, giving them a really good stretch does ease the pain, somewhat, albeit only in the short term.

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You said something about fibro fog. does it make you feel like your loosing the plot, as i seem to forget things, inportant things. all the time.

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sorry for the late reply - i have been on holiday

but yes thats what i am like lately. never had this problem before but it seems to be getting worse, i forget so many things. i also find that i forget words mid sentence and get words mixed up or in the wrong order. this happens much more when i am tired which is most of the time.

i do things like run a bath for example then by the time ive walked out of the bathroom to the living room i go back to run the bath forgetting ive already done it or i just forget about it all together and it over flows! (this seems to be one of the most common things at the moment!)

xx

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