Ehlers-Danlos Support UK
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Hi everyone, I have been diagnosed with hypermobility..waiting to find out if i have Ehlers-danlos.

I wondered if any of you guys could help me.. I feel so unwell and confused an my symptoms are getting worse!

My joints always hurt.. have done from a young child but worse the last 5 years an much worse the last year. I suffer with constipation which I have also done from a young age..

Lately I have been getting reflux and is very painful.. it feels like my food gets stuck and then I'm sick? Also I keep going dizzy.. everything moving around me and my balance is bad. Does anyone else have this all at once?

Thank you for reading x

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Hi, First of all, congratulations for getting this far with the diagnosis! Many people struggle for years before they can put a name to it.

And yes, many of those things are part of hEDS. And there is a natural history as the doctors call it, whereby the severity of the symptoms can progress over time making people feel worse.

Have you read up on hEDS on the EDSUK website? Often understanding your condition more makes it more manageable and less scary, and therefore less anxiety and that leads to a better quality of life.

Good luck!

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Hi there. Yes, this sounds fairly standard for EDS: gastric involvement, dizziness and continual unexplained joint pain. You don't give your age but in my case everything began to hurt in my early 20s, and got worse over the next 30 years, but seems to be better at the moment (touch wood). As soon as possible you need to see your GP or consultant again and arrange some pain management and medication to help with both constipation and reflux.

Regardless of whether you get a diagnosis of EDS or not (and it is pretty difficult at the moment) it is still important to treat all your symptoms. I am on a painkiller regime and have anti-constipation meds too.

Best of luck!

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Hi and welcome🙂 I am glad you have found this site, everyone is very kind and knowledgeable...I know it is daunting when you first receive a diagnosis and you are given no information about it or what to do next. If you look on the HMSA website -The hypermobility syndromes association- you will find lots of information. They also have a helpline run by volunteers, all of whom are affected in some way.

My son and I have both been diagnosed with hEDS - Hypermobility EDS- and we are now in the process of having associated conditions, and body system problems assessed.. I am currently quite unwell with a flare of various symptoms that are possibly due to autonomic dysfunction or POTS. It seems those with EDS can also have these associated conditions. potsuk.org So I am typing this while laying in bed, where I am less affected😜..

My early memories of joint pain is from when I was a child, but things didn't become worse for me until I was in my 30's, and worse again ten years later. My son is 21 now, and he has had serious illness from age 7, first being diagnosed with ME after viral illness'. He made a good recovery from serious ME, but he continued to have joint pains and other symptoms. Some were the same as, and some similar to mine. It was because of our similarities that I realised we could both have the same condition...EDS is an hereditary disorder of connective tissue. General rheumatologists and Doctors are unable to diagnose it. I saw many Doctors and various consultants over the years but none made a connection. I learned that a diagnosis is usually only made by a specialist in Hypermobility, EDS. Or it can be made by a geneticist - providing it is not hEDS, as there is no genetic test for it- so I hope that you are able to see a specialist who can correctly diagnose you and offer advice and a management, treatment plan ahead.

with these conditions there are many symptoms. In EDS constipation can be attributed to what they call ' a sluggish bowel' and this could account for the constipation you experience, which I know is awful. But there is medication, and one I know of is prucalopride.Your specialist or Doctor should be able to advise, and there is info on the HMSA and EDSuk sites.

It is recommended with these conditions to have appropriate physiotherapy, to strengthen joints and to take into account the hypermobility, instability and joint injury. It may also be necessary for you to wear supports/ splints, and also to see a podiatrist if you need orthotics. When you are referred to a physio, they should assess you for these.

With the right specialist support and interventions, you can learn to manage your condition.. We are all here to support one another. If there is anything you would like to ask or chat about, please do🙂 Best wishes xx

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Hi I have those symptoms and more and was only diagnosed with Hypermobility spectrum disorder and not hEDS because the classification has changed and I do not have a relative already diagnosed with EDS. Having said that, it hasn't detracted from the follow up etc and they are clear that one is neither worse or better than the other. Hope this helps? For Internet safety , please may I ask you to go back into your post and lock it by clicking on the button for my community only, you'll then see a padlock on your post 👍🏽😁

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Hi there, sadly life with EDS3/EDSIII or Hyper Mobility, the same thing! is not easy, and for many of us, VERY painful, draining and frustrating. As a child it was a joke that I was so bendy and never broke a bone as I was like elastic. Then as I got older, joints weren't so easy to put back into place and I wasn't as flexible or able to avoid broken bones. Together with osteoporosis the dislocations were no fun. Like you, the pain is 24/7. Whatever I do, I pay for later as pain with EDS is rective. Also to relax is painful as the joints relax and fall oiut of place so we can't even enjoy a good bit of telly without feeling pain! Frustratingly consultant say there is little to be done apart from managing the pain and getting adequate support. If you are mobile then physsio won't help. But, get a referral with a good Occupational Therapist as they can organise and supply supports for parts of your body that hurt and also give advice on positions to sit and sleep in. They can even organsie pressure relief mattresses etc on loan from the NHS (Are you in the UK?). Such things as neck braces and hand braces are a must and will help you lots. Also get a referral to the pain managemnet clinic for you can get advice on pain meds and also have one to one or group therapy to help manage the pain for the future.

As regards the dignestive problems, on eof the issues with EDS ios also gasto problems such as gastroparesis which ultaimately is a paralysis of the stomach which causes the stomach to be unable to move food through the gut so it causes major constiptaion and causes nausea, pain, vomiting and also acid as the food may come back up. You can have a food motility test where you eat egg on toast with a radioactive dye and the movement of the food is measured every 15 seconds and that tells the specialist how much or how little the food is moving. I have this condition too which means I can only have liquids now and also I have stomcah tube to vent of gas and fluids to lesson the swelling and pain, but you may not have this.

Hope this helps? Good luck.

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Hi there, I'm sorry to here your going through this.. I am also in pain 24/7 and it is frustrating. It is nice to talk to people that are going through the something as I always feel like I am moaning and on my own.. although I do have a lot of support. I've just found out about my diagnosis so I'm still learning about it, for once it all make sense to me and all my symptoms have a name to it now. Thank you for the the info on the bed as I will now look into that. My bed is not great at all in support an i toss and turn at night. I do live in the UK. I feel for you with your reflux.. if that's the right word? I love my food but I am now scared to eat. I've been doctors today and I don't think they understand that it's all connected with my hypermobility? They are sending me for something which I can't remember the name of.. it's a camera down my throat I think. Also I keep going dizzy an my balance is awful at the moment.. I am waiting to be put on a rehabilitation programme for 3 weeks so I am hoping that will help in many ways. Thank you for listening an your reply was helpful x

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That's an endoscopy. The colonoscopy is up the bumb. They can also do a barium study where you have to drink some yucky chalky stuff. Ask about the stomach emptying study if you feel able, to check for gastroparesis. Sadly there is no cure but it will save you suffereing and trying to eat. You can get a dietician and work out what you can manage. I am 5 stone 6 and have been lower. My treat is coffee and jelly sweets as they dissolve. Other than that I have a small bowl of passatta for my main meal. I have a PEG tube for venting as without it my stomach swells to the size of a 9 month pregnaant me and I am in agony. Also eating too much causes too much nausea and retching. I have been offered feeding tubes but I cant cope with that too, and I had a horrendous time having my PEG fitted. I hope you have some luck, and you don't have gastroparesis as I'm sure it will be the end of me gradually.

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