hypermobility syndrome;back with a vengence

[ouchmyfanjo]

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 pains.it 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 school.it 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 awful.my joints are burning and aching.it 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.

Gussiegrips do you have it too?i can't get over this response.when i had it they just told me to go away and put up with it.there was no mention of others with it letalone an association.
While i wouldn't wish it on anyone the support is fantastic.feel quite emotional.the teenage me could have been so different if i had known.

No, fanjo, my joints are dull as ditchwater - but, I'm a physio and have just been seeing a woman with hypermobility causing knee problems.

She's done everything she's been told - astonishingy compliant. And, ususually, the stability exercises work. But, her joints are just so wibbly wobbly that she's still having pain and falls.

In a different area, we used to refer patients like her to a hypermob clinic, but there isn't one here.

So, have persuaded GP to send her to an ESP physio at orthopaedics (who isn't acutally psychic. Or at least, if she is, it's not what she's being paid for) which is like a consultant physio.

because, really, really hypermob joints are, frankly, a bugger.

I don't think we have anything like that. I was sent for physio and put in the knee replacement class. Even the physio man was scratching his head. Especially when he had a look to see what rotation I had on my knee and the answer was far too much as opposed to all the old dears I was sat next to who had hardly any!

I wish I had 300 pound. I'd love to see someone who knows what they are on about and can actually advise me accordingly. Especially now I have the baby and potential genetic links.

There is a Hypermobility expert physio, Jane at St John and St Elizabeth's too, she can give an nhs physio a plan for individuals. John Hemming MP is on MN, you can PM him johnhemming is his nn. I messaged him after the live Webchat on here with Edward Timpton, where he promised to look into EDS concerns I have. John is going to take the EDS issues to the house of commons and is gathering information, your experiences would help. PM him.

Gussie thanks for taking the time to post.my knees are troublesome. If i lock them theyook quite weird. Like twigsbending in the wind
Signet it sounds like you are having a really tough time.mrsjr's suggestions sound good to follow. If i win the lottery i would pay for your consultation!
I am going to follow up all the suggestions too. If anyone has any tips, anything that has lessened symptoms, please share.
If you did mean gastrointestinsl jr i have been thinking i feel better on a bread free diet but could be clutching at straws.
Hope your testing for POTs is clear. Thanks again.

Yes IBS is common in EDS. There are tests showing adrenal glands function below normal and links to CFS in EDS.

Ok thanks.another bit of research to do!
Can i ask if you get a lot of pain/aching? I notice it more in cold/damp weather (and i always feel cold) and when i am tired, orit makes me tired; not sure which. It also used to be worse just before my period. Just wondering if this is what other people notice.

Yes, period hormones effect EDS. Yes to pain and fatigue too. I sat through a two day EDS conference recently. The autosomething system is dodgy that is why we have odd temperatures hot and cold.

I ache a lot. It's not a pain. It's almost as if my bone is aching. Worse if cold or damp. Worst places are knees, shins and forearms. The forearm makes me feel sick.

Do your joints click in and out? My left knee has dislocated about 7 times each needing hospital attention. I can click my right hip out and in myself. My shoulders both pop in and out if I put a tight jumper on.

It doesn't bother me too much but I'm not even confident I've got hms. I have had so many diagnosis in my 29 years alive I'm half expecting to be told something else in a few years.

I have insoles to make my feet stay in the right place but haven't noticed any change and has a six week physio course with knee replacement clinic bizarrely.

I didn't know you can get ibs with it. That would explain a lot.

I've learnt more off this thread than any health care professionals have told me!

1 in 10 with EDS have bowel incontenance, there is dys(Something) that means a bad working bowel in EDS, apparently some people end up with bags. Bladder incontenance is also common.