Should I go to the doctors with these... - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK
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Should I go to the doctors with these symptoms


Hi guys!!!

I'm new here but I am wondering whether I should go to see a Doctor with this? I am 21 and I'm fairly sure this stuff is not normal.

All my life my joints have been really loose. As in they would click and crack all the time, my jaw sometimes got stuck out of place if I yawned too widely, my hip would get stuck in a funny position if I sat down too quickly and I also could do flexible things.

For example my favourite party trick is putting my hand flat on the floor and twisting it 360 degrees so my elbow joint is on backwards. But my joints ache a lot of the time, I get tired easily and I fall asleep everywhere and often end up with bruises that I have no idea where they came from.

I was just googling causes for this because if it can't be fixed I would like to know is there a reason or a cause or something. I found Joint Hyper-mobility syndrome or Hyper mobility EDS, so I was wondering is it one of these two syndromes.

I also have been diagnosed with Irritable Bowl Syndrome, Carpal Tunnel Syndrome and Acid Reflux (which sets of my asthma) which also came up along with things to look out for, for both of them on the NHS forums and other website. I also have like head rushes and feel really dizzy and like my heart is hammering sometimes when I stand up or sit up.

My question is did any of you guys have these kind of problems? What was the outcome? Did your doctor listen to you?

I really hope I can get to the bottom of this at some point. If only to be able to answer why are you complaining about aching joints your still young. I am going to Malawi for three months in a week so I can't do much at the moment but should I tell someone when I get back?

Thank you very much for reading!


19 Replies

Hi, Your's sounds like a straightforward case of hypermobile Ehlers Danlos Syndrome. If you don't meet all the criteria for that then you will most likely have Hypermobility Spectrum Disorder (same as hEDS effectively).

My doctors did not believe me - I am fairly certain they had me pegged as a hypochondriac. I waited decades for my correct diagnosis - you shouldn't have to as there is much more information out there now, and the internet has made all the difference. There is now no excuse for not knowing about hEDS when your GP can google the symptoms, whereas before you were relying on a GP who had done 5 minutes on general EDS when it was considered a rare disease in their training days, and then never looking at it again, which could be up to 40 years before.

Ask your GP for a referral to a rheumatologist who can diagnose hEDS. Print off this diagnostic leaflet and take with you.

It is very likely that your IBS and acid reflux are linked to your hEDS. They have not been officially recognised as part of the disorder, but if you check out this site:!home/mainPage then you will see all the complications which can go with it. If your heart beats fast when you get up (mine does but I have never bothered with a diagnosis) then you may also have POTS, for which you will need a separate diagnosis. Also your asthma may not be real asthma (I had it for a bit) but another hEDS thing.

Have you been to a hot country recently? I am asking because heat intolerance is a common thing with POTS, although mine has become worse with age. Be aware of the symptoms of heat stroke and take plenty of fluids at all times.

Emilyeagleowl in reply to Jay66

Hi, thank you so much for your reply. I called my doctor who said there is nothing they can do for the minute and why did I call them. I said because other people had said maybe I should warn them and stuff. I could almost hear him rolling his eyes and said I bet you had to pay for this and I told him no. I asked question and these are the responses from people who had similar issues to me and what they said they did about. And he sounded better and more understanding. He did upset me a bit because he made me seem like a hypochondriac when all I did was have a lightbulb moment at the wrong time. He seemed to laugh at that one.

He asked me what I wanted them to do. Yeah I just want to know why I have random join pains in my twenties as I'm pretty sure thats not normal. And why I can put my hand on the desk and twist it round 360 degrees without lifting it off the table, so my elbow joint works backwards. I asked him did he believe me and he said yes, and asked did it come across the way that he didn't. Yes it did he sounded like I make it up. I cry at the wrong moments and this is another classic case. Its awful.

He said when I get back we do a physical assessment and refer you to the hospital for X-rays and blood tests to rule everything else out.

So thats what happened.

I think my asthma is real- or the spirometry confirmed that my lungs weren't working properly. How do you mean not real?

I just wish I knew why I walk like an old lady when I'm just about to turn 22.

Jay66 in reply to Emilyeagleowl

Asthma symptoms not caused in the same way as normal asthma:

The hand thing just means you are hypermobile - it is useful as evidence but hEDS is so much more than than. The random joint pains is how I first started properly experiencing it in my 20s but there were signs before then which neither I nor my GPs recognised - massive stretch marks aged 9 (I was skinny then).

The thing is you can carry on and function with it, your body just adapts to pain and you can end up just fighting your own body to live half a life. We have been through it - you don't have to. When I first cried in the surgery, the GP just said I had stress and maybe depression.

Hopefully things have changed. Go along with the blood tests by all means to rule out anything else, but don't let them put you off track.

Enjoy your trip to Malawi!

Emilyeagleowl in reply to Jay66

Ohh that looks like an interesting paper and could be I will have to give it a proper read after dinner.

Yeah, I have heard its a lot bigger that super flexible joints, (I like the hand thing as it seems to get peoples attention that I'm not making stuff up). The random joint pain is a sod right whatever is causing it, right? You feel old before your time and don't understand why. I feel like I have growing pain or have been doing an assault course all the time.

Heat intolerance seems interesting. I hate the cold and get chills and feel freezing and cold for hours but then sweat buckets when I don't feel particularly hot is that what you mean or is that just something else?

Jay66 in reply to Emilyeagleowl

Yes - you have a narrower range of temperatures that you feel OK at than other people - like a goldilocks zone. You may be able to cope with heat now but, like a lot of hEDS, it gets worse as you get older, so see the world now and not in your 50s!

Emilyeagleowl in reply to Jay66

I will do :). Thanks for the advice. At least I get to go to Malawi for three months now rather than later in life as you say. I'm going to live while I'm young I think :). Going to India and Nepal next year after the monsoon and I may do the Inca trail as well.

Hi, I completely agree with Jay66. See a doctor, get a diagnosis and No Party Tricks! I am 54 just on the diagnosis trail now, it's slow. I have the same symptoms as you and the last 20yrs have been a struggle with doctors not listening. It all gets worse with age so you nerd be learn how to look after yourself and pick up on any complications of the condition - the sooner the better. Good luck and don't be fobbed off by your gp, see another one if necessary

Thank you for your reply. I can't see a doctor yet not till a get back from Malawi. But they have put it on my notes so then I can come back and get tested. It does sound like we are making it up until we show people the way we twist up. I had heard stuff like this gets worse with age so this could be fun.

Hi Emily, I fully agree with Jay66 and Steenygirl1, and would just add if you could get the ball rolling with your gp before you go, as it can be a slow road to diagnosis, so sooner you are on it the better, but hopefully your gp will be top knotch like my daughter's, she was diagnosed within 9 months, I finally got mine after 14yrs of fighting. I also have POTS and heat intolerance & was told it is linked to my hEDS because most of my symptoms involve my internal structures rather than joints, and my blood vessels don't work efficiently enough to return blood to head etc, plenty of fluids and increased salt dors help me.. Good luck x

Hiya thanks so much for your replies. I can't get the ball rolling because I leave in a few days I have already. I have already called them and they have put it on my notes. So I have to call them when I get back. He sounded like he didn't believe me and it made me upset. So yeah. Oh well I am not missing this trip. xx

Keep believing in yourself, we've all been There 😔. Maybe when you come back you can see a different gp? Hope your trip goes well & you come back charged up to 'go into battle' for Your health x

Yeah he didn't say he didn't believe me he just said he couldn't do anything now, but we can do a physical assessment when I get back and then refer to a joints specialist. But I will go and see doctors because my mum meets all the criteria as well or used to she's got arthritis now. To be fair he did apologise and say it wasn't my intention and I didn't mean to sound harsh. We need to do a longer journey than one we could manage right now. All I want at the end of the day is an answer to why I walk like an old lady when I'm really young. So the fights on. And thank you, so excited now! x

Your Mum's medical history will be helpful too when you get referred, family health history helps specialists join the dots. I have three generations living with hEds & believe it was passed from my Dad. Good luck Emily & hope you enjoy your trip x

We have my mums Dad who was very flexible too but we have no proof because he died a long time ago. But my mum can tell them so maybe that will help like you guys :). Thanks again, nervous now :D x

My daughter is 15, has suffered an atypical eating disorder for almost 4 years. We always described her as a pretzel because of the strange positions she gets into and is comfortable in.

Super flexible. Recently diagnosed with scoliosis & osteoporosis.

She has an appointment today with her paediatrician and I plan on asking him to refer her to a rheumatologist.

Someone in an eating disorder support group said she thinks my daughter may have EDS, I have never heard of it, but on reading and researching about it, she fits in many ways.

She pops and cracks so much she sounds like bubblewrap!

Really hoping to be taken seriously today.

Good luck!!! I really hope they believe you, and take you seriously.

Thank you. The paediatrician was great. He gave her a thorough check and has said she definitely has hypermobility and has referred her to the rheumatologist to check for EDS. It felt so good to be listened to.

Hi hope you enjoyed Malawi, just wondering if you got a diagnosis and how you persuaded the GP that you had it. I have just been diagnosed by a very simple test of pushing my joints to extreme by GP with Hypermobility, but have commented on here and know I have all the symptoms like you of EDS or Heds , my mum had some, my daughter has most and my family have chronic arthritis too. I just need the courage to go back and say I want to be checked for this. I too have always been a contortionist, my joints crack, thud creak .My neck and spine crack too. My knees and ankles give way for no reason, I’m now 54 but am like a 70 year old. I’m in so much pain now and exhausted all the time. GP did give me self referral to physio but can’t even get a telephone call back appointment. I have IBS that is almost uncontrollable now, have always had acid re

Hi Emilyeagleowl (love the name, by the way!)

I would be really suspicious that you could have Ehlers-Danlos. I was fortunate and got diagnosed by a Rheumatologist in Canada (although it took a long time to get the family doctor to refer me). After many years of multiple health problems, the rheumatologist told me within 10 minutes that I "no doubt had Ehlers-Danlos". He was so helpful validating the weird and varied symptoms I'd been having. Mine include: eyes (retinal detachments), gut (diverticulitis, reflux/GERD) and multiple joints - jaw (have been shown how to prevent subluxing my jaw as well as how to return it to correct position); shoulders, wrists, neck, back, hips, knees, ankles and feet. Had I seen a specialist at your age, I might not have needed the 72 surgeries I've had to fix the multiple problems I've encountered. As well, I probably would have made other career choices (was a nurse but tore my shoulder apart moving a patient). I wish you good luck and please fight to get the assessments you need. You're so young that I'd hate you to have to wait too long to get answers so you can prevent problems for now and especially later on. Good luck!

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