Anybody know about hypermobility syndrome

[revelsandrose]

I stumbled across information about hypermobility whilst googling about my painful back.
After reading I think it may apply to me, if I list my 'symptoms' could anyone say if they think I might be right. I'm due to see the the doctor this week about pain relief for my back, but don't want to be laughed out of the place for claiming I have this from googling!
So, my palms do touch the floor without bending my knees, fingers bend back, one thumb can bend to wrist, my knees bend 'backward', all of this bendiness was much more pronounced when I was younger. My knees have dislocated from turning over in bed multiple times, I really suffered with knee pains when younger and I remember being taken to see somebody who watched me walking etc and said my hips, knees and ankles weren't positioned correctly and I had insoles made for my shoes, those are long gone!
I have suffered with ibs a lot, ranging from constipation to diarrhoea, I have a lot of stomach pain which I take omeprazole for and have had my gallbladder removed.
I'm always tired. I just always thought I was a total hypochondriac to be honest, but all of this seems to fit with a hypermobility diagnosis.
Would it help to have a diagnosis for my back pain, at the moment I'm just told it's probably sciatica and prescribed strong painkillers for years, no scans or other tests have ever been done.
Thank you if you managed to read through all of that and fully prepared to be told I am a hypochondriac

I'm really grateful for everyone's replies, spoke to older two dc (youngest is still very small so flexible anyway) and eldest can do a lot of the hand stretches, it's not caused any problem for him, although I've suspected for a while he might have inherited my 'dodgy guts' as he very often feels sick/nauseous and has stomach ache for unknown reasons, he just gets on with it though.
I will let you know how my appointment goes later in the week and buying some Epsom salts tomorrow.

I'm similar to you OP- IBS for years, always going over on my ankle, no wrinkles and no stretch marks in pregnancy. It was only when I was diagnosed with PoTS that the Dr traced it back and confirmed I have hEDS.

I'm pretty certain that the EDS charity or PoTS UK charity have a GP toolkit you can take with you to an appointment.

You've reminded me revel, very hot baths can affect blood pressure so be careful.

In fact, I've found cold showers and sea bathing to be extremely helpful for pain and general health.

Popping this here for you op. www.ehlers-danlos.org/what-is-eds/information-on-eds/hypermobile-eds-and-hypermobility-spectrum-disorders/

Might be back later

Have you seen an osteopath? I have hypermobility, multiple knee dislocations and horrible back pain after my c section (botched spinal block). I have been feeling exhausted and everything is clicky/achey. The osteopath was horrified at how twisted up I am. After just 1 session i feel so much better. Exercise also helps. I try to exercise daily as I have poor muscle tone.

I was diagnosed by a physio after a car accident.

I had no idea - I just thought I was very flexible and very lucky to not have any stretch marks! I have dislocated a knee-cap twice, but it didn't hurt much.

I have had no other issues.

Dd was dx start of high school, after many years of symptoms. Initially jhs but as time went on and she had more problems And they did more tests Eds was dx

I'm an ex nurse but it's not my specialist area and has been quite a learning curve for me/us. She's only young at the moment and still in relatively good health but has physio, has orthotics in her shoes, has to be careful doing certain activities, has to be careful with her diet, lifestyle and over exerting herself.

I worry about her on this. As she gets older we've been told she may have trouble with mobility in middle age to the point she may need mobility aids.

All this is not true for all sufferers of course everyone is affected differently but in hindsight she's really had problems since birth (born with a sprained ankle for starters and that was even though she was c-section, she also had some skin issues and and eye problems and breathing issues) quite honestly I think the health professionals should have picked it up far earlier in dd. We were visiting gps almost weekly with sprains and strains and eye issues at one point that we now know were pretty much classic Eds indicators.

A 6 year old shouldn't sprain their ankle stepping down off a high kerb without going over on it!

But most GPs didn't believe that she'd not landed awkwardly or twisted even though I was telling them I'd seen what happened.

I've found the various websites etc very helpful but it's still difficult getting across to gps etc that stuff not joint related can be linked to the Eds because they don't have the knowledge. I don't expect them to be experts on every condition i do expect them to listen to patients, check up and certainly pay attention to specialist recommendations.

And yes Dd has the issue with anaesthesia and pain relief too. I'm not hyper mobile but have the anaesthesia thing, I think they may both be connected to same gene though as my sister is same with anaesthesia and I suspect is undx hypermobile as is one of her dc.

I'm a redhead and there's long been believed by anaesthetists a link between red hair and resistance to anaesthesia. First time I had GA i
Told them family history on this and that local anaesthesia does nothing for me, think they thought I was just being a "wimp"... then I started coming round while still in theatre not even in recovery room!

Hope you get a correct dx and treatment and support op and this thread has been useful.

Told them family history on this and that local anaesthesia does nothing for me, think they thought I was just being a "wimp"... then I started coming round while still in theatre not even in recovery room!

DD & I have had this for years too, eventually it was our new dentist that picked up on why. Prior to that DD was diagnosed with JHMS & nothing more than her hyper mobility accepted. Our doctors didn't believe in EDS, the more I pushed, the more I was looked at as if I had FII. Thankfully our GP knew us better. In short though, we had to go private to get the hEDS diagnosis that joined most of the dots. I still don't have the hEDS diagnosis, but a made up condition that doesn't actually exist, but an an acronym made up of the listed symptoms of hEDS. I've even spoken to the EDS society over it & was told this has happened before with the same doctor . GP accepts I have hEDS though, DDs private consultants also said in a letter that I had it too. I was previously diagnosed with POTs & other linked conditions & have the blue eye whites & heel papules which is a hEDS sign

The anaesthetic thing is to do with adrenaline & POTs which is a symptom/co morbid condition with hEDS. We need adrenaline free anaesthetic, this information was thanks to our brilliant dentist, who also spotted that we had pernicious anaemia, another linked condition. It's been life changing as it means the anaesthetic works. Hospital do this too & after waking up under the knife so to speak all of my life & watch incredibly brave DD go through the same. We now get proper pain relief & no more heart going into a tailspin, leaving us extremely exhausted & dizzy for days afterwards

That's interesting Rockin.

An epidural didn't work for me. Neither did naproxen for some reason. Ibu and paracetamol do though. My aunt is v bendy and has pernicious anaemia.

I see a lot of it at work as I do biomechanics. You need to be diagnosed properly by a rheumatologist but GPs are often reluctant to refer as there is so little that can actually be done about it other than referral to podiatry for insoles or physio.
I have known serious cases that have affected blood vessels in the brain, in fact a friend of mine died from a sub dural haemorrgahe from blood vessels affected from EDS but this is extremely rare indeed and I'm afraid not really preventable. They won't do a full body scan for you on the NHS.
A patient of mine with EDS paid for a full body MRI due to lack of NHS input for NHS which cost a few thousand pounds, she took out a loan but in her case found nothing of any concern.

I'm following this as I have a family member who's been referred to a rheumatologist for this we're just waiting for the appointment

It’s interesting reading all this. Another thing when I was being checked for rheumatoid arthritis was an X-ray in my lower back. It found a missing vertebrae.
I did get stretch marks on my thighs at a young age after a growth spurt. I was born very prematurely and was always very small until I grew at about 11 to average height. Hardly any with 3 pregnancies though.
Is blood pulsing in the ears when lying in certain positions a ‘thing’ ?

My dd (3) broke her leg before walking and also dislocated her arm both very easily so I’m thinking maybe she has it too.

Hi there, fellow HMS person here. I was diagnosed by a physio (at 25) but do still get some queries from medical professionals.

Things that have helped me: steady build up of barefoot shoe wearing, instead of insoles. My feet are now stronger, so my ankles roll over less.

Structural integration physio: helped immeasurably! My posture was way, way out from years of SI dysfunction, back pain, and a hypermovile cervical spine. (My latest new physio really freaked out when working on my neck).

Core exercises: not HIIT (I damaged my feet with the high impact as my big toes subluxate). But body weight exercise, built up slowly. Your glutes and core are very important, and you will have tension imbalance in your front/back body, eg tight muscle groups counterbalancing loose groups).

Good physio or osteo is crucial, and as others have said, reduce painkillers and increase your strength as much as possible. Good luck!

I dislocated my wrist briefly the other day pulling off my daughter’s shoe! 🤦‍♀️

I have known serious cases that have affected blood vessels in the brain, in fact a friend of mine died from a sub dural haemorrgahe from blood vessels affected from EDS but this is extremely rare indeed and I'm afraid not really preventable. this would be due to Vascular EDS which is another subset of the condition & different to hypermobile type, though they can be hyper mobile too, it's thankfully very, very rare

@Neuro the PA link is very interesting. My DD became gravely I'll & I was struggling to get anyone to listen, they pretty much wrote her off to a life in a wheelchair on a good day. Every bone in my body was screaming I was losing her, but doctors weren't hearing me. On the back of this I researched & researched for years until I found the answer which was PA. Though her diagnosis is functional b12 deficiency as her blood results were in normal range. The B12 injections brought her back to life & got her out of a wheelchair within 2 weeks, despite her paediatricians insisting it was hEDS & CRPS. DD became more flexible during this time & eve previously unaffected joints became scarily hypermobile. Went back to normal after B22 injections & after years of back to back hyper extension injuries, she's had no significant injuries since. I was told on the B22 groups by other zebras this would happen & it did. Witnessed by GOSH EDS team who did take a big interest in B12d after that. Sadly not much in the way of study done on it, but I found science papers on animal studies that suggest that B12 is involved with the production of collagen & it makes a lot of sense. Just a shame more hasn't been made of it. Our POTs goes just after B12 injections too, though sadly nit fir long

No idea why the second half bonded

DD2 (with an EDS diagnosis) gets taken more seriously by doctors, even though DD1 (with "just" JHS) has more day to day issues with it. Pilates is helping DD1 loads,plus the physio advice she got when initially diagnosed at uni ("bendies" will often not notice they're badly positioned until long after the average person, meaning that joints are hyperextended without realising, which then causes pain. A non-bendy would feel uncomfortable much sooner and shift position).

DD2s rheumatologist (who was one of the big names in hypermobility, but since his retirement seems to be no longer in favour) diagnosed her within seconds of her walking into the room, AND my DM who wasn't even there! I guess if you know what you're looking for, you can tell by how the person walks and moves.

Do you think people with hyper mobility have a higher pain threshold?

While undergoing testing to find out what was wrong with me, the consultant told me I was on the border of hypermobility. I actually think I do have it but one of the tests was to touch the floor with my hands. I've always been able to do this but I couldn't on the day (and this was the reason I was seeing the consultant) as I had a tumor in my spinal cord at the base of my back.

Anyway, as you can imagine a tumor filling the cord and compressing the nerves has been very painful but I've had a child, worked and looked after the house. The painkillers I was given - oramorph, tramadol & amitriptyline did nothing and after taking them for some time I decided to come off them. All I take now is paracetamol (and I've stated on cbd oil).

Nobody said there was a problem knocking me out for surgery but I did let them know I was concerned about it seeing as strong painkillers don't effect me.

The other thing is, I had my baby without any pain relief. I also got to 9cm very quickly. I didn't suffer with any stretch marks (I just thought I was lucky).

I'm just wondering if this is another condition I should ask the GP to investigate. Is it going to help me to know? Are there things I should be doing differently?

Do you think people with hyper mobility have a higher pain threshold

Possibly. That is genetic. we had the dna testing done when I was trying to find ways to get the doctors to treat DDs B12d. We have what's known as the warrior gene, plus the red head hypersensitive gene. So we feel it more, but deal with it better, if that makes sense. I know of 3 others with hyper mobility disorders who have these same genetic traits too

The warrior gene sounds very badass! It's really interesting to find out things like that about yourself. I think I might look into DNA testing.

We used 23&Me. You then put the code they give you into genetic genie & or Promase & it will give you more in-depth medical info. We found some if this really useful & we have genes that mean we have trouble with B12, Folate, Thiamine & D, which helped get treatment for DD & has been generally really useful info.

The standard stuff is fascinating though. Bar being predominantly brutish Irish, we have American Indian blood. That was a shock, but looking into it, there's a pocket of that bloodline around Lancashire, where some of my family hail from. We are also immune to coffee & getting addicted to cigarettes, I was gobsmacked there was actually genes at play in that. I'd highly recommend it

Some great advice on this post. Just leaping on to say that finding a clinical Pilates class (ours are run by the Physio) would be a wise starting point. DD (19) had her EDS dx 4 years ago; clinical Pilates has been her saviour. Good Luck

“diagnosed her within seconds of her walking into the room” that was our experience too funnily enough, once we finally got a specialist referral. The specialist pretty much took one look at dd (elongated limbs, much taller than makes sense with shorty me as her mum and dad is short too, long “knobbly” fingers, lazy eye despite treatment, very smooth skin, gait...)

Did of course examine and start us on road to tests but they picked up on it straight away.

I also have pots as does dd.

Irish heritage here too, dd isn’t a redhead proper she’s much darker than me having her dads colouring/appearance, he’s very dark but in certain light you can see red tones.

I actually meant to add this link yesterday from The Royal College of General Practitioners which was updated to include the new criteria from 2017. This has been the most useful site for me to use, especially for those who are having trouble with GP's and/or getting a diagnosis with Rheumatology. Be warned, many Rheumatologists are still out of date with this and dismiss you with Benign Hypermobility as I was

www.rcgp.org.uk/clinical-and-research/resources/toolkits/ehlers-danlos-syndromes-toolkit.aspx

Look under Diagnosing in Primary Care in the link above. There is a one sheet diagnosis list to download/print out. If you can answer these & provide evidence before you see your GP, they might actually take you seriously.

Lastly, if you do have it, this book is worth investing in:

www.redcliffhousepublications.co.uk/product-page/understanding-hypermobile-ehlers-danlos-syndrome-hypermobility-spectrum-disord

Good Luck Bendies

Well I printed off the gp checklist and also wrote down other things on it. The gp looked at it and said "oh Ehlers danlos is very rare, but lots of young woman have very flexible joints". I don't class myself as a young woman, I'm in my early 40's?
Anyway, he said there is no test that they would do and even if they did they would just treat the symptoms individually so no different to now. He said they would make a note on my (probably huge) file and told me to mention it to the physio when I eventually get an appointment.
I felt a bit deflated tbh but don't know what I expected really, re-prescribed co-codamol and told not to take it if I don't need to, and to try and manage with just paracetamol.