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hypermobility syndrome;back with a vengence

(36 Posts)
ouchmyfanjo Sat 17-Nov-12 22:38:50

Hi.i don't know where to start with this. I suffered from the age of ten and have largely been better and tried to forget about it. I have recently been in so much discomfort i don't know wbich way to turn and it is bringing back lots of bad memories.
When i was younger i complai ed of joint pain.a paediatrician put it down to growing flaredup badly at 14yrs old in all joints.i was basically bedbound.nobody believed me.they thought i just didn't want to go to was as difficult dealing with this attitude as it was the pain.eventually one medic diagnosed hypermobility syndrome.
It improved apart from a really bad spell in my second pregnancy and other isolated episodes.
However for the last couple of months i have really been struggling.i normally have some symptoms when it gets cold/damp but this is not abating.
I feel joints are burning and gets really bad in the evening and i have trouble sleeping.i am taking paramol but it only takes the edge off. I am finding it hard to look after my children and follow my usual routine.
I need to do something but am scared to go to the doctor and face disbelief or a blank in terms of treatment.
Has anyone else got this and/or offer any suggestions. Sorry to be negative, feeling sorry for myself. Really tired but sitting up because i am so bloody uncomfortable. It takes me right back to horrible memories.

44SoStartingOver Sat 17-Nov-12 22:44:58

I don't think I suffer as badly as you, but support skeleton wherever possible, eg pillow between knees at night, good supportive shoes/trainers so as not to worsen things, lots of controlled exercise where I cant over extend to build up supportive muscles and allow any minor injury to heal thoroughly using ibuprofen to reduce inflammation.

Do you find Any of that helpful ?

MrsjREwing Sat 17-Nov-12 22:47:18

Get a referral to Professor Grahame at UCL. In the meantime two weeks of regular neurofen.

Dollydowser Sat 17-Nov-12 22:54:14

Sorry you are in so much pain. I wonder if you had the right diagnosis with hypermobiity? It may be worth seeking a second opinion. I hope you find some relief soon.

ouchmyfanjo Sat 17-Nov-12 22:54:41

Wow thank you for such quick replies. I could cry just for knowing someone is there to discuss it.
44 yes that is all helpful thank you. I will try it all.
Mrsjr i am in the midlands so not sure i could get that referral. Wrt neurofen do you mean to take the maximum dose daily?
At the moment it is an aching burning pain.dont know where to put myself with it.

Definitely anti inflammatories.. neurofen or naproxen if you can get it.

Have you joined this site?
Full of good tips and understanding support.

I have two teens with HMS and the lack of understanding from professionals at times can be awfulsad

Ahardyfool Sat 17-Nov-12 22:58:39

My 3 yr old dd has this as does my 12(nearly 13) ur old other Dd's best friend. It's not readily diagnosed IMO. I believe I have it to a degree an suffer Achey hips and back as a result.

Dd's friend has very regular physio as well as having to take days out due to pain. I'm sorry that you too are suffering.

I'm not an expert but just wanted to sympathise. We've been advised to work on core body strengthening for dd and using pain relief whenever necessary. Do you do any core body work to help? An do you have universal hyper mobility?

ouchmyfanjo Sat 17-Nov-12 23:00:19

Medusals thank you.will look at the website.i am a bit overwhelmed tbh.
When i was 14 they tbought i was makingit up and sent me to a psychiatrist confused
I am so sorry to hear your two have it and still suffer misunderstanding.i would have hoped things have changed. Are they badly affected?

MrsjREwing Sat 17-Nov-12 23:02:36

The Hyper Mobility Syndrome has some info from Prof G on there. You can see him private for £300 at St John and St Elizabeth. Best money you will ever spend on a report and your GP can sort out referrals on the NHS.

ouchmyfanjo Sat 17-Nov-12 23:04:41

I can't believe this response. Ahardy sorry too that yours suffer and you.
I have done pilates and gone to the gym but not for a while.i know i should get back to it but feeling so bad now.
Battery about to go on phone.will check back later or 2.oro if ok.thank you to everyone who has posted.

MrsjREwing Sat 17-Nov-12 23:05:14

Did you know about the link to hormones, boys get better at puberty, girls deteriorate at puberty, through pregnancy and breastfeeding? Have you got GI issues too OP?

Ahardyfool Sat 17-Nov-12 23:22:50

Just popped back to say thanks for the info on this thread. I know it's not my thread so will butt out but felt very dejected after last paed review as whole thing seen as a bit of a Non problem, yet I know from dd's friend's experience and clearly yours OP that things may get worse.

I didn't know about hormone link. I was awful in pg and likewise through my cycle now.

MrsjREwing Sat 17-Nov-12 23:54:19

look up Ehlers Danlos Syndrome Hypermobility type.

Ahardyfool Sun 18-Nov-12 00:31:37

Really not wishing to hijack but... I just looked up EDS and well, DS1 has scoliosis, I have varicose veins (developed by age 19) and we all have a degree of strabismus and joint flexibility. DD2 - the only one formally diagnosed with hyped mobility- also has a heart murmur.

How does one go about getting genetically tested, am worried now...

MrsjREwing Sun 18-Nov-12 00:41:55

Professor Rodney Grahame UCL or St John and St.Elizabeth private.

MrsjREwing Sun 18-Nov-12 00:43:27

Don't panic I have EDS, my heart was checked this year and no mitral valve prolapse, and I had chest pains, racing heart.

MrsjREwing Sun 18-Nov-12 00:45:28

Look up PoTS, I need to get checked for this.

Ahardyfool Sun 18-Nov-12 00:47:28

Goodness! I'm glad you are okay.

I never really linked all these relatively minor health issues tbh.

Might well be worth saving up for private testing just in case any of us are at risk. Is it autosomal dominant?

Signet2012 Sun 18-Nov-12 01:07:35

I've been diagnosed with hms two years ago after being told I had juvenile arthritis amongst other things.

My hips are very loose and often dislocate yet although I got bad SPd by 5 months when my pelvis came away from my spine it cleared up at 7 months but getting a lot more of the sickening bone ache. Particularly in my left arm. I can't take anything because I'm breast feeding but It's really sore. Tonight both of my hips are hurting, my shoulder is and my wrist it's not really painful but more like a thudding ache that Wont let up.

MrsjREwing Sun 18-Nov-12 10:21:05

1 in 2 of the children of an EDS parent will inherit EDS. All my children have it, I met a lady with 4 children, 1 has EDS.

MrsjREwing Sun 18-Nov-12 10:24:18

Due to the female hormone issues making EDS symptoms worse, I would never breast feed beyond 3 days after birth of a child personally.

Signet2012 Sun 18-Nov-12 11:24:07

I didn't actually know bf makes it worse. To be honest I know very little about it. Just got a leaflet from consultant and looked bits up on net.

One thing that stood out from other peoples posts about a heart murmour. My baby has to have tests because they have found a heart murmour at her 6 week check. Could this be an indicator that she has Hypermobility too ?

MrsjREwing Sun 18-Nov-12 11:36:04

You need to see the experts, normal consultants are very ignorant, see Prof G, he will refer you to the experts.

ouchmyfanjo Sun 18-Nov-12 12:29:55

Hi again. Sorry about last night.charger was in bedroom near sleeping dh.
I was aware that hormones can affect it but not in terms of breast dc2 finally stopped in august at 2.4.
Dolly i was diagnosed at 15 or so.i am 38 my worst i couldnt write, walk very far or cut up food. I spent time in hospital and went through all sorts of tests.they didnt know what to do.i was put on an adult ward where people were very ill.i remember 3 died. I know this isnt relevant and am not sure why i am saying this. I suppose just to say the physical discomfort sort of takes mw back to all that in my head and makes me feel uneasy.
I havent discussed it with a doctor since as i have no faith in them and dont want to be disbelieved again.i even doubt myself and wonder if i am somehow creating this pain.
Mrsjr you sound very knowledgeable. I dont know what gi is; gastrointestinal issues? Sorry you and your family suffer this. I can't face the prospect of my dc having this and maybe going through what i did or worse.
Ahardyfool please dont worry about hijacking.the more information the better.signet too i am sorry you are needing to post here.
I felt bit better this morning but the aching is setting in again now.i also feel exhausted despite sleep.i feel bad i am not on top form for dp and dc. Going to do some housework while they are out.sometimes it takes my mind off it, until i stop!rant over.

gussiegrips Sun 18-Nov-12 12:37:24

Interesting thread - check your local hospital, if there's a hypermobility clinic attached to rheumatology then see them.


It's a bugger.

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