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Hypermobility Syndrome - what helps you?

(16 Posts)
actualtotalloss Sat 20-Aug-16 14:32:56

I was diagnosed with HS when I was a teenager but until the last couple of years (I'm 29) it hasn't had that much of an impact on me. Now, I have some sort of pain every day - usually hips and/or shoulders. My finger and thumb joints are very weak, and interfere with picking things up, even something like a mug or my handbag. Also all my joints crack constantly and I'm always getting knots in my neck muscles.

I also have bad circulation and am usually cold. When I get home from work I often have to have a bath to warm up after a day in an air conditioned office.

I went to an osteopath who released my hip and gave me some exercises to do. This helped a bit but I think I need to go back to her. There is also a lot of conflicting advice on the best way to deal with it.

In terms of exercise, I've been told not to stretch too much even though it feels good! I do pilates/ballet type exercises but there's not a lot of cardio there.

Does anyone have any advice? I feel like it's getting worse and I'm fed up with always having some issue.

mylaptopismylapdog Sat 20-Aug-16 19:24:58

I am older and was diagnosed about 3 years ago, I had always had headaches and there were other signs that I recognise in retrospect. Being diagnosed is a blessing as it has helped me to identify the symptoms more and find ways of dealing with them.
I find that rest helps, I use a microwaveable wrap to help with neck and ear pain, I taken prescription anti inflammatories for arthritis which I have had my mid 40's. At your age I was more likely than others to feel the cold but that seems to have got better. I am still very flexible but now train in short sessions with a personal trainer who is knowledgeable about the condition and concentrates on building stability which really helps, in particular I am more aware of my body especially my back muscles, which means when I find something difficult I can adjust the way I tackle it to make it easier.
I am mentioning the following as it has made a difference but I am not sure how common a scenario this :- I had and early menopause and took oral hrt for bone health but when I stopped taking it my symptoms worsened and I was found to have very low oestrogen for a post menopausal woman and some a bone scan showed I had some evidence of osteopenia, so I now take topical hrt and feel better around for it.
I would suggest that you look at the following support website which is the uk support forum where you will be able to get far more replies and and look at other people's experiences www.ehlers-danlos.org/about-eds/types-of-eds/hypermobility-ehlers-danlos-syndrome/.
Like you it is difficult to resist the urge to stretch.
Hope this helps.

mylaptopismylapdog Sat 20-Aug-16 19:28:49

Sorry about errors.
There is also an American website www.inspire.com/?ref=as&asat=422103103

I'm 22 and have EDS - one of the biggest symptoms, and the one that causes me the most difficulty, is the hypermobility.

Do you have physio? Try and get a referral to a specialist hypermobility physiotherapist and the pain management clinic, who will be able to offer physio, occupational therapy, pain relief specialists and psychotherapy if you need it (not necessarily all at once; I just see the physio and OT as my pain relief is sorted).

Invest in some heat packs; like the little bean bags that you stick in the microwave.

Dead sea salts in the bath really help, I don't know how but they do!

Wrist/elbow/knee/ankle supports are good, they're available at Boots. The wrist ones often offer support for fingers and thumbs too. Ergonomic grips EVERYWHERE. On everything you use.

Don't show off grin otherwise x-ray departments will get sick of seeing you <bitter experience>

actualtotalloss Sat 20-Aug-16 19:52:59

Thanks for all the info! I've just started using kinesio tape, especially on my thumb joint because once that subluxes it weakens it somehow and it does it repeatedly.

I don't have a physio - I need to find one in central London, if anyone's got any recommendations?

thisisbloodyridiculous Sat 20-Aug-16 23:12:06

When I lived in London I saw Six Physio at their St Pauls branch - by far the best physio I've ever had.

I'm 27, have JHS & also musculoskeletal issues with my knees. Areas of real annoyance are my fingers, jaw, & hips usually but I'm currently 20 week's pregnant and what with being off my meds, & extra hormones making my ligaments more flexible it's worse than usual.

My tips are to get an appointment with a consultant rheumatologist, see a good physio regularly and focus on being as active as you can be making your body as strong as possible. Obviously that means different things for different people. For me I've built up to walking 10-15 miles / day usually (as part of my job) & have had far fewer problems with my knees because of how strong my legs are. I manage the pain with meds but tbh I've had chronic pain since I was born & the pain is the easiest symptom for me - inflammation & instability are the worst so I push through the pain to strengthen and reduce those two.

Pacing yourself, understanding your own body, how it works and your warning signs is essential regardless though.

actualtotalloss Sun 21-Aug-16 12:38:22

Thanks thisis. I'm going to book an assessment at Six Physio, and I'd like to start their Pilates classes too. My neck is really bad at the moment, always getting tangled. I think I have other musculoskeletal issues too, in particular I think my hip is just not formed right. My mother has the same thing in the same hip. I need to get it x-rayed I guess.

thisisbloodyridiculous Sun 21-Aug-16 13:31:24

Six Physio will be really good at giving you an overall view of the issues & what you can do to get the right help. My physio even ended up recommending a surgeon who I went on to have a massive knee operation with - which changed my life. Fingers crossed you have a good experience with them - for me it was invaluable seeing them!

FrancisCrawford Sun 21-Aug-16 13:40:21

Can I just add a word of caution re physios?

Please do not go to a physio unless you have a definitive diagnosis. I have, among other symptoms, a degree of hyper mobility, as in have had numerous subluxation of knees, shoulders and hips Etc. I had over 40 different diagnoses from the 1960s onwards As my right kneecap kept dislocating and ended up being given intensive physic. Of the wrong sort.

A large muscle in my lower leg detached because of the physio and ended up crushing the nerve. The pain was excruciating - it felt like there was a fist in my calf.

That was in 1980 and I've been left with permanganate nerve damage. My exact condition was "discovered" shortly after that. Hence my caution.

EllyMayClampett Sun 21-Aug-16 13:45:06

Stay away from yoga! Obviously.

Strength trading has helped me. Lifting free weights. Others may worry about becoming "muscle bound", for me, it is the goal.

Pinny22 Sun 21-Aug-16 22:14:17

In the process of being diagnosed so finding this super helpful, thank you. I'm 30 and over the past few years I have developed constant mainly annoying pain and weakness in lower back, knees, ribs, shoulders and my hands ache terribly. I also have hernias and loads of broken veins all over my skin. Joy. I'm not that bendy though, my thumbs, fingers and elbows overextend and I have badly pronated feet and a funny walk.
mylaptopismylapdog you mentioned ear pain, I've always had terrible ear problems since I was small and they are constantly aching and clicking if not infected. I also get a bad ache behind one ear. Was wondering how ears are affected by hypermobility/weak connective tissue? Thanks so much

mylaptopismylapdog Tue 23-Aug-16 09:40:48

As far as I've read the pain is common in hypermobility and comes from the jaw from the tmj. I have a mouth guard I wear which helps. Sorry I should have said I also use this book www.google.co.uk/search?q=trigger+point+therapy+workbook&client=safari&hl=en-gb&prmd=sivn&source=lnms&tbm=isch&sa=X&ved=0ahUKEwjn2o6pkNfOAhVKD8AKHWN7CXYQ_AUICCgC&biw=768&bih=937. The link is images that gives so you can see how it works.

mylaptopismylapdog Tue 23-Aug-16 09:41:38

Gives a idea of!

Pinny22 Tue 23-Aug-16 17:10:01

Thank you! that makes sense.
I saw an amazing Chiropractor last year at Sayer Clinic in London for about 8 sessions. He used trigger points to help with pelvic pain I was having referred from my psoas muscle/SI joints. I was sceptical but physio and conventional medicine hadn't helped me. I think it may be time to go back there although the guy I saw has moved on.
Will check out the book.

actualtotalloss Wed 24-Aug-16 19:31:23

Thanks for all the info. I've got an appointment with a consultant rheumatologists through work health insurance. Unfortunately I'm only covered up to the point of diagnosis of JHS (if that's what happens) so I will have to pay for my own physio.

I've read conflicting things about yoga/stretching. On the one hand you don't need the joints to be any looser, but I find that a lot of my muscles seize up on me and are really stiff, especially around my hips. My osteopath actually recommended yoga to stretch them out. Will be interesting to see what the rheum says...

DailyMailEthicalFail Wed 24-Aug-16 23:12:19

Hope you don't mind me asking.

My ds is 11. He is always tired and sore and says his legs/arms etc ache.

He fatigues VERY easily.

an OT said he had 'a lot of extra movement in his fingers' but wouldn't look further. He has trouble holding pencil, kicking balls, is clumsy.

He can bend his fingers/ thumb right back and twist his arms weirdly.
He has flat pronated feet.

Mainly it's the tiredness and fatigue though. NO core strength at all.

Could this be hypermobility?

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