Does anyone suffer with Hypermobility as well as Fibromyalgia?

[kasearle]

[Hidden]

I dont but i wanted to send you a warm gentel hug

[MissKittycat]

I do - and its painful! It can sometimes go hand in hand with the fibro - if you want any more info let me know and I will post a couple of links about it on here. xxxx

[kasearle]

Thank you Lexie, one for you too.

I would love more info if thats not too much bother, Thanks MissKittycat xxx

[MissKittycat]

hypermobility.org/

benefitsnow.co.uk/handbook/...

Found a few links for you - the top one is the best! If I can help please let me know.

Gentle hugs! Tracy xxxx

[kasearle]

Thank you Tracy i will have a look.

Gentle hugs back! xxx

[jazher]

Hi kasearie and tracy, I do,

I got diagnosed with fibro first and only found out two weeks ago that i had hypermobility too aswell as other stuff.

My knees seem to be the worst they are agony and burn when i stand on them too long.

Also my ankles are really bad and i have to stretch my feet and click them all the time, not sure if i should be doing it but i need too lol.

What is worst joint with you?

hugs kel xxx

[kasearle]

Hi Kel, they have been throwing hypermobility around for a while but i didn't realise it could be causing some of my pain. I would say knees and feet the same as you and also my back. My whole body clicks non stop. Sometimes i think my neck will get stuck. Have you had any medical advice or tried anything to see if it helps yet?

Hugs Kim xxx

[jazher in reply to kasearle]

Hi kim,

I have just remembered my hip just went and it was agony to walk and move, i had xrays etc but nothing showed up and now my gp thinks it actually went popped out of joint. It took ages to heal and it still bothers me now.

My whole body clicks, cracks, pops etc.. Especially my shoulders. My hands cramp up and hurt but it definatly worse on the lower part of my body.

my legs went one day and it looked like i was walking, bouncing on a spring board,it lasted about 6 weeks and i have no idea why and my legs havent been back to normal properly yet.

I ahvent had any medical advise, as i only got told two weeks ago that i had it and i have been on a website and all they say is too smoke pot, i wont do that and i still wouldnt be able to do much then as i would be stoned lol.

I am going to a cfs clinic on the 12th so i will ask there and i will let you know if they say anything.

The only thing my specialist said to me was that i had to be careful of excercise and to get weight off, but its hard to get weight off when you dont move about tooo much.

Speak soon kel xxxx

[nuttytartuk2003]

Hi Kasearle,

I've not yet been diagnosed with hyermobility but I think I have it as my leg bone often pops out of my hip socket, I've only noticed this happening in the last 6 months or so and I get a bad burning pain in that area, my fingers have always been a bit odd looking the middle finger on both hands bend inwards at the middle knuckle, I just thought I was double jointed, my hands are always in pain.

My doctor can only handle one problem at a time so even though I've told him about my hip/leg and fingers/hands he wont sort that out yet as he's still sorting out other things.

Irene x

[jopp87 in reply to nuttytartuk2003]

Hi Irene,

I've just been diagnosed with hypermobility and fibromyalgia - about 8 weeks ago I rolled my ankle gently and ended up so badly hurt they thought it had broken badly - since then my hip has been killing and burns, both hips also jolt forwards sometimes and then the burning starts - does this sound familiar? I have never thought that my hip was popping out before :/

I hope you are feeling better and have a wonderful christmas Jo xxx

[Hidden]

hips pop out of socket usuall in the middle of the road not funny then knee bend to far backwards agony they burn so that i can barely stand

[LindseyMid]

I have Hypermobility Syndrome as well.

Hypermobility is now considered a risk factor for developing Fibro by some experts.

If you are hypermobile as well, you do need to know this as specialist physiotherapy and expert advice is going to be needed for you to exercise in such a way that supports your joints, rather than straining them. Hypermobility is also likely to cause ongoing myofascial restrictions.

I get ongoing myofascial release and this is because of my hypermobility (and associated hyperlordosis). I get the MFR to stop the myofascial issues causing a Fibro flare, not because of the Fibro itself. It's a fine distinction but an important one - a lot of people with Fibro are unaware of what other problems they have so put everything down to Fibro (and then wonder why Fibro treatments don't work well!).

[jopp87 in reply to LindseyMid]

Hi Lindsey, what is myofacial release? I recently had to have major jaw surgery as my jaw kept dislocating and would not stop coming out of place/eventually got wedged- is this similar? can i also ask what MFR is? sorry for all the questions lol! hope you are well xx

[Brujah81]

I was diagnosed with fibromyalgia about five years ago and then with hypermobility syndrome about two years ago, i am 30 years old. I always think its ridiculous how long hypermobility syndrome takes to diagnose as its a condition from birth, i was always told when i was growing up that it was just "growing pains" i had lots of physio etc for it but they never stopped and they never correctly diagnosed it and so i just learnt to live with it.

I have lots of problems with my fibromyalgia; chronic daily migraines, Sleep Apnea, vitamin deficiences, IBS, Neuropathy, etc as well as the pains that come with it, i have to use a wheelchair but use crutches inside but can only stand for about 30 seconds. I have a carer to help me as i am unable to wash, dress, shower myself, cook etc my fiance works full time so my carer looks after when he isnt about.

I had to push to get the diagnosis of hypermobility syndrome, i knew something else was wrong with me other than the fibro and had been wrong with me for a long time and saw a rhemy occupational therapist who ran all the tests and got a rhemy to confirm it.

[jazher in reply to Brujah81]

Hi i have just looked up about you hun, (sorry hope you dont mind)

I am called kelly too and i am 31. I have fibro, hypermobility and ME and vitamin deficiances and many more.

My hypermobility was missed and i had growing pains and plenty things wrong with me well before fibro. I only got told 2 weeks ago.

What meds do you have for it?

My legs are just getting worse constantly so i wouldnt be suprised if i end up in a wheelchair too.

kel xxxx

[Brujah81]

I dont mind people looking up my details at all, I am sorry you are suffering so much as well : (

I take Pregabalin, Duloxetine (for both fibro and depression), Oramorph for the pain, Topiramate (For the Chronic Daily Migraine), i am on Calcium and Vitamin D supplements that are prescribed for the deficiencies and i have a Vitamin D injection every 3-6 months. I have Ibruprofin Extra Strength Gel for the Joint Pain.. i am on lots of other meds but they are not for the fibro / hypermobility / ME

I take Omega 3,6,9 Tablets to help with the joints but they are not prescription

[jazher in reply to Brujah81]

I take gabapentin, cocdamol, amitriplyn and i have the ibruprofen cream stuff, and i take the vitamin d and calcium tablets.

Do your vitamin d tablets make you feel any better?

I think i am hoping for a miricle but i am pinning all my hopes on them making me better lol.

I just find nothing takes away my joint pain it really hurts.

thanx, kel xxxx

[elainewestaway]

Hello All I am Elaine and I am new here, I have hypermobility and Firbromyalgia along with other things, I didn't get a diagnosis of JHS until I was about 47 and fibro 2 years ago when I spent a week in rehab at the RNHRD in Bath. I am in constant pain I see Dr Jenkinson down at Bath and am trying to get a referral to Prof Graeme's clinic at UCHL. I am in several forums on Facebook for the Hypermobility and I also believe it is Elhers Danlos Syndrome III, as there are bleeding issues with me and slow healing as well as excessive scarring. My son and Grandson also fit the profile for EDS but my son has disowned me as he doesn't want to face up to it or get stuck with looking after me so he wont have my grandson tested and has stopped me from having any contact with them, but I am assured this is not so uncommon. I have a lovely partner Ian who finds this all quite hard, but is coping. will shut off now, please message me if you want more info or friend me on facebook my name is Elaine Westaway

thanks xxx

[michaelb62]

Hi

I have just read up on hyper mobility and it all fits in when i was a teenager my knees were so bad i would cry at night i had blood tests and everything my ankles were also always giving way spent more time on the floor than standing. My knees have always bent too far backwards physios have tried so many different things and after reading this it makes perfect sense I was told it was growing pains nd would go away but never did. When i started training to be a nurse the standing still made it so much worse just before qualifying i had to give up. Standing makes my knees and feet go purple and can give me so much pain. i have osteoarthritis in them now and have had for a long time but it makes you wonder if i could have prevented that in some way if i had known earlier. My concern now is for my 19 year old daughter who has been diagnosed with fibro along with two of my sons who both have knee problems but my daughters is her hips she keeps saying that it feels like it pops out of joint but xrays etc have come back negative but she is very flexible her hands and everything do hyperextend i always thought she was just double jointed. Her brothers think she is making the hip pain up as they have problems but maybe this is what her problem is and its being ignored I know she has difficulty sleeping as lying on the hips cause her pain and discomfort.