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Anybody else have Ehlers Danlos Hypermobility

(17 Posts)
Addictedtohotbaths1 Mon 25-Apr-16 20:55:37

Hi - I've just been diagnosed with EDS Hypermobility type and POTS.
So much to take in, I didn't really feel like I got to ask enough questions and bit uncertain about the future.

Anybody who has this and can share their experience / tips I would be really grateful.

Is it a progressive syndrome or is that an unknown? I have been reading lots on the internet but can't really find an answer to that?

I'm particular interested if anybody else has EDS and prolapses?

Everything has got progressively worse in the past year - 2 prolapses, one repair that failed after 4 months. My main (there are a lot!) symptoms are pain in joints, general weakness, massive anxiety, terrible indegestion, acid, constipation.

I've already started a no dairy no wheat diet which has helped massively. But not sure if this is something I will have to keep up forever?

Is it worth going to discuss with my GP do they even know anything about this?

If you have this how do you control the anxiety and palpitations? Sometimes I feel like I'm going to faint / be sick / have a panic attack just because I'm a bit hot / tired. I sound like such a weekling!

Thank you if you are still reading.

Addictedtohotbaths1 Tue 26-Apr-16 15:56:23

Bump

GrouchyKiwi Tue 26-Apr-16 16:22:32

I have JHMS, which is possibly the same as EDS III (according to some specialists), but my symptoms are not all the same as yours.

Do you have Facebook? If so, there's a good support group on there called Hypermobility UK Support Group. You'd definitely get people who can help you there.

It's good to have a diagnosis, though, and hopefully you'll be able to find information to help you.

Also: go to www.hypermobility.org for information.

Addictedtohotbaths1 Tue 26-Apr-16 20:33:39

Hi Grouchy, thanks for replying. I'm am trawling the Internet to learn as much as possible.

I don't have Facebook unfortunately, maybe it might be worth me joining again.

RoobyTuesday Wed 27-Apr-16 18:08:31

I don't have it but have work in an area where I see it fairly frequently. The arrhythmia alliance website is very good - have a look at their page, also their sister charity STARS have good information on the website and patient support groups.

RoobyTuesday Wed 27-Apr-16 18:09:11

That is for POTS by the way not specifically ED but I'm sure you will have been informed the two seem to be linked.

GrouchyKiwi Wed 27-Apr-16 19:42:31

This website was linked on the hypermobility support group just now: www.edhs.info/#!symptoms/c1qvq

BookTart Wed 27-Apr-16 20:11:46

I have JHMS (originally misdiagnosed as Marfans) and had a prolapse (cystocele and rectocele) 6 weeks after DD was born. It was 2 years before my physiotherapist admitted that there was very little she could do to help as it was all down to overstretched ligaments. All the kegels in the world would have little effect, apparently. That was the last time I saw anyone about it. I seem to have dropped out of their system.

In terms of other symptoms I am lucky. As a child I had multiple joint subluxations but as an adult the worst parts for me are GERD, joint pain, easily scarred skin, and the prolapse. That said, I do have panicky fainting episodes much like you described when I get too hot or tired. I find keeping healthy tricky, as the only exercise that is really suitable is swimming, and I can't swim!

Not a very helpful post, I know, but I wanted you to know you definitely aren't alone.

Addictedtohotbaths1 Thu 28-Apr-16 08:59:12

Thanks for your replies, Rooby I will check out the STARS website. Rooby from the people you see do you get an idea of how progressive EDS and POTS are? I'm very confused if it's going to keep getting worse as I age?

Grouchy - that website is the best I have found yet.

Booktart - sorry you have these crappy issues too. Have you not spoken to anybody about getting a repair? Apparently VIk Khullar in London specialises in Prolapse and EDS type issues.

I'm the same I can't swim properly and can't do much other exercise for fear of worsening the prolapse and other joint instability. I have started Pilates which seems to be helping but it's a really slow process to get any strength back and would really recommend it. You really need somebody that understands Hypermobility though and one to one classes to start with.

RoobyTuesday Thu 28-Apr-16 14:07:26

Hi, I don't really deal with the ED, more referring people on to the right people specifically for POTS. I tend to see people at the onset of symptoms so they are usually 20's-30's. I have to say I'm not sure about progression but speak to arrhythmia alliance /STARS and they can recommend some experts in POTS that you can ask your GP to refer you to.

KittensandKnitting Thu 28-Apr-16 14:27:26

Hello,

I have both EDS III and POTS, and am under professor Mathias - the god father of POTS.

I was diagnosed when I was 24/25 I am now 38.

Yes it can get worse, mine certainly has but I have fought it every step of the way and with lifestyle changes and medication have learnt to live with it very effectively. I do have some horrendous days with POTS but it's not all bad for me. Gaining weight helped me as kept blood volume up even more and kept me on my feet - literally ;)

Cutting out diary and wheat is a great start, I do eat dairy occasionally but I am exhausted and often in pain afterwards - I am addicted to cheese! Smaller meals is better for digestion and helps too.

Caffeine helps some, others is doesn't - for me when feeling like I'm going to collapse a can of Diet Coke with a salt sachet works for me.

I have never met a GP who understands it... Although these days more A&E staff have "heard" of it. You will need to learn all you can because you will be telling your GP what you need at some point. I have lost count of times I've had to convince A&E staff that I'm not drunk after collapsing!

This is a good place to look forums.dinet.org/index.php?/forum/1-dysautonomia-discussion/ and you can talk to people in same boat.

Physiotherapy with someone who understands EDS is really helpful, strengthening your leg muscles will be beneficial to the POTS and learning control over your joints will help avoid straining or over flexing.

I was told when I was diagnosed that I'd likely be in a wheelchair by 30. I'm 38, active, happy, and definitely not wheelchair bound by a long stretch! I refused to accept that would happen and by lifestyle changes and medication it hasn't happened, and won't if I have my way smile. When I was diagnosed was less known than it is now especially here in the UK - easy to get lonely with this as it can be very difficult and people just do not understand! I am fit & healthy to look at, stand up for two minutes without moving and I would be on the floor. So I would suggest signing up to the dinet forum it was invaluable to me!

It's a lot to take in, but it's not all doom and gloom smile

KittensandKnitting Thu 28-Apr-16 14:31:19

PS... Just noticed your user name smile I too love a hot bath, and baths are easier because I have been known to collapse in the shower smile but you may find, cooling them down a bit if you have them hot will help you smile I can't move sometimes fir an hour after a hot bath, but it helps my joints.

For years I couldn't have a hot bath as it would effect my POTs terribly the following day, so keep an eye on that.

A food and exercise diary will also help you identify triggers.

BookTart Thu 28-Apr-16 19:11:28

It is so interested to read other people's experiences of this. My hypermobility was spotted when I was very young, and so I've just grown up with it. I don't see a specialist or anything at all. The more I read though, the more I realise that JHMS is responsible for lots of my other problems too. I'm especially interested in POTS, as I had a long phase of "fainting" episodes a few years ago. I was tested for epilepsy and narcolepsy, but in the end the only thing that helped was putting on some weight. Looks like I need to keep an eye on it though.

The only time I saw a gynaecologist about the prolapse he said that surgery wasn't immediately necessary if I was able to undergo physio. The physio has given up on me, so maybe I need to go back to the GP again. What is the next step with you if the repairs have failed Addicted?

KittensandKnitting Thu 28-Apr-16 21:26:00

Hi book POTS & EDS don't always go hand in hand, but they often do.

As a child I was told I was double jointed, always tearing ligaments never breaking anything... Then as a teen, was so tall and gangly that my POTS episodes were dismissed as growing pains, and my anxiety attacks down to depression or angst about being so tall.

I was extremely lucky I had private medical care in the company I was working with at the time I hit my worse spot, otherwise I doubt I would have been diagnosed and my life could be very different now.

I learn new things all the time, and I think it's great this thread has been started because as I said before it's such a lonely illness.

I'm happy to answer any questions you have on POTS book or anyone else who finds themselves here, I have been working with it for a very long time so if I can help I'm very happy to do so.

Addictedtohotbaths1 Fri 29-Apr-16 09:05:23

Kittens and Book please keep sharing your experiences it's so helpful.

Kittens, how bad were your symptoms when you were diagnosed? It sounds like they have you a horrible prognosis and you have been really positive and determined not to reach that stage.

What exercise do you do?

At what point do you suggest a Physio is needed? I'm seeing a woman's health for my prolapse but haven't seen her since my diagnosis. I have Pilates one to one once a week but that's it. I also see an osteopath for chronic tailbone and lower back pain which seems to keep it under control with regular visits but now my health insurance are refusing to pay anymore. Is there anything similar on the Nhs?

It's so odd because I literally have a pain in a finger / knee / hip / foot and then it's gone within minutes / hours and then something else hurts. I don't even understand yet why it hurts, I have a lot of reading to do. I'm the sort of person that needs to know as much as possible.

That's really interesting what you have both said about weight. Do you find it heard to keep weight on or off? Is there any connection with being over / underweight with EDS? In the past year I've lost a lot and can't seem to put any on, but I can see now that it probably would help the faint dizzy symptoms. Any tips for weight gain when not eating wheat and dairy?

Kittens do you take any beta blocker type drugs to help your pots? I'm really adverse to taking anything but the thought of feeling wired / anxious / racing heart forever more could change my mind. When do they need to check your heart or don't they? I get random pains around my heart and chest and I forgot to mention it at my appointment..

Kittens looking back to I was a teen when I started the pots symptoms too, constantly fainting but told it was low blood pressure. At least I know what to look out for with my children.

Has anybody given it to their children? My ds definitely has Hypermobile elbows and complains about walking, not sure on my dd yet. A what point would you suggest they are looked at?

Book - it sounds like you could have Pots, maybe you should get checked?

Book - if your prolapse symptoms are bothering you then I would speak to your GP but you need to see a urogynae who knows about EDS that's something I've learnt after my first lot of surgery... If you don't want any surgery them you should make sure your have optimised you pelvic floor muscles even if you don't think they are helping they will help with some support. Try to avoid heavy lifting - pretty much impossible in modern life with kids...

I had a bowel and bladder repair, the bowel is fine but hasn't fixed the constipation (new diet is helping) which I now know is down to the EDS, the bladder failed after 4 months. I've been told when and if (I'm sure it will I'm only 33) it needs repairing again (it's stage 1 now and they don't do anything until stage 2 onwards) then they would use bio mesh. Something I'm keen to avoid for as long as possible. If I do need surgery Professor Graeme recommended Vik Khullar on NHS or private. He's the best for the two conditions together apparently...

I'm going to spend this weekend trawling the sites mentioned above..

Doesn anybody get numbness? I've had it intermittently all over for years and a brain scan couldn't find a cause. I'm guessing now it's probably related to EDS?

Addictedtohotbaths1 Fri 29-Apr-16 09:05:43

Sorry that was a bit long.

KittensandKnitting Mon 02-May-16 21:21:40

Sorry addictedtobaths I've had the flu so not been on mumsnet, but will pop back once I'm better and answer your questions

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