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Anybody know about hypermobility syndrome

(54 Posts)
revelsandrose Sun 01-Dec-19 17:42:36

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 grin

OP’s posts: |
egontoste Sun 01-Dec-19 17:47:38

You're not a hypochondriac, you are hypermobile. (I'm married to one, and dc has it as well).

babbi Sun 01-Dec-19 17:52:58

I would say it’s worth mentioning to the doctor.
I was diagnosed at 50 😂
Never crossed my mind that all that you describe and I mostly have were not “ normal “ 😀🙄

Mine was discovered by a very switched on physio after a car crash .... she was stunned at my flexibility etc at my age ... I felt a bit stupid .... I can do the splits etc very easily still and thought that was usual 🙄🙄🙄

Mrsjayy Sun 01-Dec-19 17:54:03

A physio diagnosed me as hyper mobile 2 years ago at 46 I have a primary disability so the secondary was a surprise to megrin

They won't think you are a hypercondriact(sp) just say what you did here and see how it goes.

6utter6ean Sun 01-Dec-19 17:56:50

I was diagnosed at 47 (last year).

I have arthritis in my back - I thought the chronic pain was simply age, but apparently not hmm

whyamidoingthis Sun 01-Dec-19 18:03:06

My dd has hyper mobility syndrome. It sounds like you do too. The bad news is, there isn't a cure although physio to strengthen your core could help with the back pain.

revelsandrose Sun 01-Dec-19 18:04:22

Thanks for your replies, has being diagnosed made any difference or is it just the same painkillers etc but knowing the reason why now

OP’s posts: |
whyamidoingthis Sun 01-Dec-19 19:02:03

For my dd, the diagnosis means she gets allowances made in university. It's also helpful if your physio is familiar with it and how best to deal with it. A lot of them are pretty clueless about it.

Windygate Sun 01-Dec-19 19:09:29

DS and I are both hypermobile. He is probably more bendy than me. When he was diagnosed I blurted out 'where did that come from', consultant looked me straight in the eye and said 'You' I had no idea. Apparently you can tell just by looking at our skin never mind waiting for us to move/bend.

Karwomannghia Sun 01-Dec-19 19:14:28

I had it diagnosed when they were investigating rheumatoid arthritis. Yoga and Pilates are good but don’t always take it to the max even when you can easily. Also I was recommended to get orthotics which you put in your shoes and help you to improve your posture and reduce back ache.

kalinkafoxtrot45 Sun 01-Dec-19 19:15:14

I was diagnosed at 18, though my case is fairly mild. Did you know that hypermobile people are often insensitive to local anaesthesia? Explains why I’ve always had such bad experiences with dentists. Anyway, check out the Hypermobility Syndromes Association website - it’s great. www.hypermobility.org/

Moominfan Sun 01-Dec-19 19:18:46

I always thought I was shit hot at yoga. Super bendy. One day a joint went pop whilst I was making yoga shapes. Most people feel when to stop. I'm the opposite I rarely do and when I do, the feeling of a stretch is very nice but damaging and addictive. I've found a hypermobile aware yoga instructor, she focuses on strength rather than contortion.

VolcanionSteamArtillery Sun 01-Dec-19 19:23:33

Yy to strengthening your core. No to yoga (you will be putting your ligaments hyperextension which is bad) yes to pilates. Especially a small class with a teacher aware of hypermobility.
Yy to orthopaedics.

Consider non medicinal forms of pain killers. Epsom salts in baths. Cold packs for inflammation and injuries. Heat packs for strain.

katseyes7 Sun 01-Dec-19 19:26:12

l've always been very 'bendy'. l could get into yoga positions very easily that took other people ages.
lt wasn't until l was having physio after breaking my ankle at 40 that the physio said she was pretty sure l was hypermobile. Had some investigation, and l am. Apparently that's why l broke my ankle so badly (in three places, l just slipped on the path stepping out of the front door) - for someone 'normal' (ie, not hypermobile) the ligaments would have snapped first. Mine are so stretchy, my bones broke instead.
l have arthritis too (l'm 61, though) and that doesn't go well with it. Find a decent physio and as pp have said, focus on strength rather than flexibility as it's very easy when you're hypermobile to hyperextend your joints.

Velveteenfruitbowl Sun 01-Dec-19 19:31:12

The back could easily be down to incorrect legs/hip placement. It screws up your entire body. So that may be a possible cause as well. With regards to hyper mobility it may be that or it may be just extreme flexibility. I have similar, thumbs touching arm etc. I’m not hyper mobile and have no other symptoms. It may also be worth co soldering any other issues you may have as some conditions in the hyper mobility category include other conditions as a result of the hyper mobility like the IBS you mentioned but also other sutomimmune conditions. You’re not an idiot for suspecting it though and if your doctor pulls a face at you bringing it up then find a better doctor. I hope you get your back issue sorted smile

revelsandrose Sun 01-Dec-19 19:38:11

Thanks for all the good advice, that's really interesting about dentists, I always end up having multiple injections and still saying 'I can feel that' I just thought my dentist was a bit stingy with the anaesthetic or I was being a wimp!
I don't have skin that I can pull but don't have any wrinkles (in my 40's) even if I say so myself smile also no stretch marks from pregnancy.
I have been referred for physio and am on the waiting list, I will mention to gp this week and look into a Pilates class.
I would be glad for a diagnosis if not for anything other than to prove to myself I'm not just a moaner complaining about stuff everybody deals with all the time.

OP’s posts: |
6utter6ean Sun 01-Dec-19 20:27:55

I think getting a diagnosis was good for me. I am much more mindful and forgiving of my back. I run, so have dropped my mileage and now religiously do yoga and strengthening exercises. I wear orthotics when I remember and make sure I rest regularly after a period of activity. Can't say it's eased the pain though.

RockinHippy Mon 02-Dec-19 00:24:21

With the gastric issues etc too, it sounds more like it could be Hypermobile Ehkers Danlos (hEDS);

But no, your definitely not a hypochondriac, DD & I both have it & it's no fun.

Have a look at the information on the EDSUK website & you might want to look into POTs & Gastroparesis, which are symptoms/co morbid conditions with hEDS

RockinHippy Mon 02-Dec-19 00:40:44

Sorry, typo. Ehlers Danlos

GlamGiraffe Mon 02-Dec-19 06:23:22

You indeed sound hypermibile often called types 3 benign ehlers dangles syndrome now.
Check the beighton scale and see your score.
You can get very low back pain and sciatica due to minor subluxation of the sacro iliac joint. This is a normally fused joint which can move slightly in hyper mobile individuals and put pressure on the sciatic nerve. This causes pain in the very low spine very slightly to one side and is very painful. It affects walking, lying and sitting.
Definitely speak to your do for about it. Uou merd a referral. I would recommend osteopathy over physio personally. In terms of future situations strengthening all bum muscles significantly and good core strength is essential to provide skeletal support. Stay away from yoga completely but do find a really good pilates teacher who is experience with hupermobility problems.

Mrsjayy Mon 02-Dec-19 12:05:02

Sorry, typo. Ehlers Danlos

This is what I thought of reading the Op but I couldn't remember the exact term for it.

NeurotrashWarrior Mon 02-Dec-19 18:30:55

Yes to all
This!

It's worth being diagnosed to make gps aware but most of it is really self care and self education- I was in denial for years about it but I do run into trouble if I don't make sure I'm strong; dips in thyroid levels affect me quickly and I have to try to keep weight (muscle) on to be well.

Yes to Pilates and only very strong yoga that focuses on core (Forrest was always good but the instructor was excellent.) hamstrings can be an issue in many hypermobile people so this is an area to work on in yoga downward dog etc.

Being aware of lower back and how it should be - I have too much of a curve and so do Pilates with a flat back. Others have no curve and need to make sure they keep that curve. Physios that understand hypermobilty are crucial.

I found a lot of the stuff that Katy bowman writes about (also YouTube videos) very helpful as she talks about good posture and how to hold and stabilise the joints which is really important.

I'll post some helpful links later.

NeurotrashWarrior Mon 02-Dec-19 18:32:27

In some nhs areas the physio team run Pilates classes for patients (I think you still pay) but that could be really helpful for you.

BestIsWest Mon 02-Dec-19 19:48:29

Just following as physio suggested this to me after I broke my wrist and it was still more flexible than hers. Can do the bendy fingers and hands to floor though I am much stiffer now than I used to be. Three broken ankles too from turning my ankle in pot holes.

DD can do the thumb to wrist too.

NeurotrashWarrior Mon 02-Dec-19 20:30:02

The thing is it's only an issue when it's an issue if that makes sense.

For some it's never a problem and they're very flexible. for others it can become cfs like or fibromyalgia.

Really good Pilates, preferably physio led, can be a god send.

I also find cold showers really good for pain as well as Epsom salts. Good sleep hygiene too. I can't eat a heavy meal
Late at night either.

I've read making sure bone health is good is important. I now take vitamin d regularly and recently started taking the one with added vit k. Pilates helps with that too. I mourned the loss of yoga for a long time but getting on top of my posture has done wonders. I absolutely love lying on a half foam roller for a few exercises as it really helps my back and shoulders.

It might be worth looking at the fodmaps diet to see if you can get on top of your stomach issues or other food triggers which might help fatigue. Keeping my iron (ferritin) high has also helped me (but that might also be because of the thyroid issue as that's known to help there.)

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