Has anyone been diagnosed with ehlers-danlos syndrome?

[doadeer]

What were your symptoms? Who were you diagnosed by?

Anything you can tell me.

Contact @SaveSamantha_ on Twitter.

Thank you I hadn't heard of her before I'll read more about her story

Genetics diagnose x

Both of my daughters (now 26 and 28) have EDS... my dh has never been diagnosed but is quite obviously the culprit responsible...

Both girls were exceptionally hypermobile from birth. Multiple dislocations as kids.. you know when you swing your toddler between you... well we soon learned not to do that, as their elbows came out every time!
Not too many problems otherwise until they hit their teens when POTS joined in.. fainting lots, and much increased joint pain . One has more heart issues and worse POTS (diagnosed with the tilt table test) the other has worse joint pain day to day and can literally dislocate her shoulder rolling over in bed. Both have gut problems with motility and reflux and both are on a lot of medication.

Both have uber stretchy skin and scar very easily.

Both diagnosed by EDS specialists, but it took a while.. as kids a lot was written off as ' so loose jointed..they'll be great gymnasts' and it wasn't until DD1's constant fainting brought her to the attention of a good consultant that the dots were joined and she was referred to an EDS specialist. DD2 saw a different one, but both were diagnosed soon after.

Both get on with life. one's a doctor, one's a nurse and they both live with it as best they can, but with pain, with dislocations and all the rest. One is now pregnant and under specialist care for the duration of her pregnancy. We hope the baby doesn't have it!

I am and two of my children are. I was diagnosed in about 1968. Dd and ds by genetics at Addenbrookes.
I have regular subluxations, osteoarthritis due to collagen problems and IBD due to EDS. Dd has frequent subluxed and suffers with chronic urine infections. Dd has knee problems. Dd and I have PoTS.

After years of POTS, subluxations and easy bruising, I finally landed with a consultant rheumatologist who diagnosed me in 2 mins flat having noticed my bendy banana knees as I walked in .

Thank you everyone, it's very helpful. Whilst it sounds like a huge challenge for your loved ones living with this, it's wonderful to hear they are still managing enriching lives.

I know I have hypermobility, I'm working with a rhematologist at the moment who's doing lots of scans as I'm in a significant amount of pain, just exploring what potential diagnosis could be.

Fibromyalgia

@Christmasfairy2020

Fibromyalgia

Thanks for suggesting but I don't think this is me. I had PGP in pregnancy that hasn't cleared up and causes huge pain through my lower back and hip joints.

Both my dc were diagnosed with EDS round about the age of 10. Dd had been in pain for years and has a significant amount of (fluctuating) disability- but still studies physical theatre. Dislocated her shoulder not long ago but managed to manoeuvre it back in place. Tendency to faint and get dizzy. Needs an hour to recuperate after a bath, and half an hour at least for a shower. Often becomes badly ill from minor infections and takes a long time to recover. Balance used to be very poor but has improved with hard work.

Ds not so badly affected, mainly clumsy and some wrist & finger and lower back pain- he is now (age 20) very fit and does weight lifting but still quite clumsy.

Both scar easily and have stretchy skin.

My mother and I never been diagnosed but strongly suspect we both have it. She was never strong, prone to feeling faint, struggled to walk up the stairs, could never lift anything heavy. As for me, it's mainly my wrist and finger joints affected, plus I've had a prolapse and a few other minor issues.

Symptoms ranging from Subluxations, pain, tiredness, Dizziness and more. Went to the GP with a full list of "I don't know if this is normal" symptoms. She reffered me to rheumatology and cardiologist diagnosed with EDS, POTS and Raynauds phenomenon. Suspected but not yet confirmed diagnosed mcas and sjogrens.

I also have a hand that has been shaking for the last 10days with no apparent cause that is being investigated at the moment (not sure if it's linked to one of the above or caused by something new)

Happy to answer any questions.

It sounds so dreadful what some of you suffer with 💐

I'm not sure if I fit the full profile but my hypermobility went into overdrive in pregnancy and 2 years on my pain is getting worse. I do a lot of strength work on my muscles but suspect the ligaments are very lax. Hoping to get some answers this week.

Pregnancy definitely brought my symptoms to the forefront. My hips were in excruciating pain at times it would cause me to limp my lower back also gets like that and I can always tell when it will go into a spasm.

I was diagnosed by Professor Grahame at UCLH. I'm hypermobile, have lots of digestive tract issues, unusual scars, and slight scoliosis. Also him pain and had frequent has dislocations as a teenager.

Hip pain not him pain!

Jaw dislocations not has dislocations.

I'm trying to get seen at the moment. It looks like I have POTS and am seeing a cardiologist this week. I'm diagnosed fibromyalgia but didn't even know eds existed and all the dozens of symptoms I have, when collated, comes up as likely hEDS, POTS, MCAS, Sjogrens. As well as the fibro and endometriosis and autism and other things.

It's extra important I'm seen and taken seriously because my youngest has the same problems as me and has been in constant pain for nine years.

Sorry what is POTS?

Postural orthostatic tachycardia syndrome

When you stand up your heart beats extra fast, usually your blood pressure drops and you have less blood near your brain so feel dizzy, get close to fainting or actually faint, feel weakened

I don't know if this is of any use to anyone here, but I have hypermobility syndrome, and the only thing that has brought me any relief is being on a low dose combined contraceptive pill. My hormones had a huge impact on my pain levels. I tried a high dose pill but that didn't help, it actually made things worse. I can't take packets back to back without it playing havoc with my joints, and I get flare ups when I over do it, but it has made such a huge difference to my life.

@mummykauli7

Postural orthostatic tachycardia syndrome

When you stand up your heart beats extra fast, usually your blood pressure drops and you have less blood near your brain so feel dizzy, get close to fainting or actually faint, feel weakened

Oh goodness that's very scary for you 💐

@doadeer I initially diagnosed myself after constant shoulder dislocations. I had an amazing gp at the time who referred me to a local rhumatologist who confirmed the diagnosis. I have also seen Professor Grayham and then Dr Kazkaz at the UCLH.
I scored 9+ on the beighton test. I have EDS Type 3 with crossover to Classical

Yes, me, dh and all 5 dc have it. Diagnosed by a neurologist.

My 19yo Dd has it. She’s been poorly with weird symptoms for years.

Stomach issues, bloating (though she is coeliac), chest pain, dizzy, palpitations, fainting, nausea, leg aches, pain, finger pain. She’d complain that her toes felt like they were snapping in and out of place.

Numerous GPs were useless.

So much googling by me and I came across EDS and POTS. Felt she had both, did the Beighton test on her and she scored 7/9. Took her down the GP and told him, asked for a referral.

Rheumatologist diagnosed her as having EDS, POTS and fibromyalgia. Thinks she has cardiac involvement so is getting referred to cardiology.

Oh and I think she has MCAS as well. I have it. It’s bizarre because when I met a new colleague a Few yearS ago and she was telling me about weird symptoms she has and I said it sounds like MCAS and she’d never heard of it. But shot off to see her GP Who’d also never heard of it. But now she’s been diagnosed.

I diagnose people with coeliac disease as well and I’ve had 4 people now confirmed coeliac after I’ve told them they should get tested. 😁