Joint Hypermobility Syndrome

[Rainatnight]

Just wondering if anyone else has this, what you do that helps with pain, and if you do anything to reduce the risk of arthritis in the long term. Thanks!

[aseaandthreestars]

I have EDS Hypermobile type so might be able to help a bit.

The only way to deal with arthritis risk is to keep the joints moving, if a joint hurts, try to gently move it, that way you keep the synovial fluid flowing - synovial fluid takes a lot of energy to make, so the body will stop if you let it.

Mindfulness can help, there are online and YouTube resources that can help.

Exercise - as much as you can bear, even if that's just very gentle stretching. Strong muscles can help to make up for Hypermobile ligaments. Can you do any exercise now?

[moosemama]

My ds has JHS and the absolute best thing for him is regular exercise. The less movement he does the more he hurts and the more frequent he subluxes etc.

When he is already in pain the only thing that seems to help is anti-inflammatories (usually due to soft tissue injury after subluxing/sprains etc) and sometimes warmth as in a hot water bottle or wheat-bag.

He started secondary school this year. We were so worried about him coping with walking a mile and a quarter to and from school, plus around school all day with a heavy bag, but actually he's found he's had a lot less pain and less sub-luxes of his ankles and knees since he's been walking regularly. Basically, the more exercise you do, the more you will be able to do and the more stable your joints will be, but you do have to be careful to choose low-impact exercise and to not over-extend yourself.

When he was first diagnosed we arranged for him to have some private Pilates lessons, which helped a lot, as a strong, stable core really helps with posture, which means you hold yourself better and put less strain on your joints. We couldn't afford to keep the lessons up, but you can get dvds or attend a class which will obviously be a lot cheaper.

One other thing that is often overlooked is the importance of a really good quality, supportive mattress.

[Clarella]

I have developed the syndrome part since I had my son. I also have thyroid issues and basically anything that weakens my muscles impacts (which thyroid does, and low vit d etc.)

So yes basically being strong etc.

Good pain relief and management for flares.

A good bed.

They say don't jog etc but I find I can and it helps, I also swim and skip and used to do martial arts. I've started pilates - I find its helped me to learn to stretch my spine which has stiffened up, due to over flexible arms and hips. But I really like Forrest yoga - usually with jhs this is a no no but my teacher knows my issues etc and it has a lot of core strengthening stuff.

Massages, a good sports physio (who has recommended some of the yoga twisting stretches)

Epsom salt baths are awesome. And I take extra magnesium and calcium and vit d now.

A vibrating massage thingy.

Thinking of trying tens machine for flares.

My residual issue is that my hips shift and cause lots of spasming and tightening. Sitting and travelling is tough.

I really should be doing my physio much more often,

[Rainatnight]

Thanks all very much indeed. This is really helpful. Definitely not as bad as EDS type and I can still exercise but I can see that I definitely need to do more if that's the thing that makes a difference. Private Pilates is something I'm looking into, just a couple of sessions to get me on the right track, and then I can join a general class.

It's just that it's often the last thing you feel like doing when you're in pain. But I can see why you must. And I'm allergic to anti-inflammatories, sadly.

I didn't know that about synovial fluid. Very interesting!

Thanks again.

[Clarella]

It's very hard. Do read this - the guy is patronising at times but it makes a lot of sense.
www.paintoolkit.org

The hypermobility syndrome website is excellent too for a wide range of advice. They show research on best pain management things and pilates comes out on top.

There's varying degrees and each has to work out what helps most. My spine is stiffening up and my pelvis shifts so pilates helps the spine but yoga helps the pelvis. And I actually find I'm a lot better if I do some regular skipping (which is less impact than jogging) but I'm ok jogging too.

The worst was when my shoulders went down hill. My physio showed me some very particular things to help that. But things were made much worse due to heavy toddler snd thyroid issues!

I also benefit hugely from going swimming at a pool with a sauna too. It really helps some how!

[CFSKate]

EDS in the Mail today

[aseaandthreestars]

CFSKate You actually made me click on a DM link It was a pretty interesting article. I've never heard of someone developing it after a shock or an infection, I thought it was a genetic disorder - very confused face. But, anything that gets some information out there has to be a good thing.

Clarella I'm working on the level of awareness you have, I'm learning my triage, but sometimes I get bogged down in what I should be doing where and just exercise as best I can in the hope it's better than nothing.

[Clarella]

I'm not totally sure about infection etc but it's the syndrome that can develop. You can have hypermobility and no issues. The issues joint wise start with bad posture, injuries etc, others develop varicose veins, prolapses etc. My 'syndrome' side of thing kicked in post baby, as a result of c section, over doing it, and weakened muscles due to thyroid issues.

But there's degrees of it and true EDS is really, really tough. Which is why I think there's some distinction between JHMS and EDS.

[LivingInMidnight]

A good physio might be able to help you. I've just finished a 6 month course and my joints are feeling much better than they usually do. My hips in particular seem to be loads better.

[Clarella]

Yes it's finding the right physio. The NHS one wasn't really up to the specifics but helped with strapping and pacing.

I was hugely lucky and managed to get one through my work insurance (teacher - gets us back to work etc). I asked the company to ask around to find someone who understood hms, and they came back with a guy who used to be NHS, but was now a sports physio. Works with dancers, jockeys as well as anyone else. He really understood the problem, a great set of exercises and very encouraging pep talks. Some things were quite pilates like. Some set on unlocking my back and more yoga like.

The best one is a towel exercise - rolled up towel between shoulder blades, reaching half way down back. Low pillow for head. Lie legs straight if possible, arms down. Just lie there! Really helps to sort out upper back issues. I do a big spinal twist and a huge spine crack afterwards and am so much better. I seem to have to do this most days at the mo, but it did improve hugely - then I got a nasty chest infection and gone backwards!

[Clarella]

He also did/does a lot of adjustments like an osteopath - my pelvis had actually shifted (spd ish post baby) and my left hip pelvis joint / si joint locks up. Which the NHS physio missed, an osteo had noticed but only this physio really investigated and tested each side of my pelvis then did lots of pulling. And then explained which exercises helped keep it in place.

I think this has bee hugely helpful but obviously costs. However, investigate NHS options first.

[LivingInMidnight]

The specialist physios in my local hospitals are great! The others are not so great. I guess it's hit and miss with the NHS. I steer clear of anyone offering to adjust my joints, but I guess that's a personal choice.

[Clarella]

Living in not sure all my issues are exactly hms related - my pelvis had shifted and was wonky post baby. It needed re aligning and kept coming unstuck a lot last year when I was recovering. Seems fine now, I just get stiff joints. It's more gentle manipulation/ massaging to be honest, not the big jolts a chiro does. Don't think much of them to be honest after my experiences!

[moosemama]

Clarella, I got spd with two out of three of my pregnancies and was told it was caused by my pelvis not being stable enough due to the hypermobility.

I was also put back together by an osteopath. My pelvis was badly out of alignment and he had to do a lot of work on my spine and hips. It was an absolute revelation when he'd 'fixed me' as it had most likely completely out for about 4 years.

I then had dd 4 years later and only had a bit of spd pain and no need to be realigned afterwards, which was fantastic.

My experiences with NHS physio have been dire. My one experience with a private physio (not for JHS, for Complex Regional Pain) was amazing, she had be sorted and set on the road to recovery with advice and a plan to follow in just one session. 6 months with an NHS Physio did nothing at all, as they didn't know anything about CRPS and had to go and look it up!

[Clarella]

I found an osteo better but my physio has been the best.

I think it comes down to the person and their experience.

I'll add I'm still bf a bit and it's recommended to take higher doses of vit d. A consultant I know said 5000 and Holick (vitamin d guy) recommends this level.

But I don't really bother in the summer.

[simplydivine05]

I have (also) got a private physio. I had prolotherapy in my pelvis but not doctors do this, and even less on the NHS. I use heat and very gentle stretching every day and take ibuprofen, paracetamol and codeine (of varying strengths) when I need to. I do physio led pilates every week which is a small group and the instructor makes sure I'm doing it right. I have gone from in a wheelchair to just about managing to live (although I really have to pace myself!) in 4 years.

[LivingInMidnight]

Er... I may have made an error in saying about the specialist physios being good at my local hospital. My hypermobility HAS been better... But that's not what I was actually referred there for. It was the neurology physio. They haven't actually fixed or attempted to fix the potential neurological stuff .

Can't believe I forgot why I was there .

[moosemama]

Living were they the neurologist physios that deal with neuropathic pain etc? I was sent to standard GP clinic physio for Complex Regional Pain Syndrome and they had absolutely no clue what it was, let alone how to treat it (mind you, neither did any of the GPs at my practice). Whereas the physio I saw privately also works as a neuro physio at an NHS pain clinic and was absolutely amazing.

Just wondering what sort of neuro issues you were referred for. I have recently been diagnosed with Autonomic Dysfunction, with POTs, which manifests as all manner of apparently neurological symptoms. I was repeatedly investigated by neurology over a number of years as they tried to get to the bottom of my symptoms, but they were looking in the wrong place, as my symptoms are not coming via the brain, they're a manifestation of a dysfunctional autonomic system.

There are lots of researchers and doctors researching the link between hypermobility/EDS and Autonomic Dysfunction.

There's some interesting information on the pdf, linked to on this page and some info on specific POTs AD here

Just thought I'd mention it, in case any of it might be relevant for you.

[LivingInMidnight]

Yes that's what he does! There is/was a possibility that I had dopa responsive dystonia as I have problems with my toes on both feet (they curl). I think the general idea is that they might just sort themselves out if my joints are better, but there's been no improvement yet. If anything they're worse at times. He was brilliant for the hypermobility stuff and has really helped my balance - he just said one day he thinks my toes might just stop curling on their own. I don't really think it can be dopa responsive dystonia as I'm too old for it to start now, and as far as I know no one in my family has had it. I went to the neurologist with other symptoms (I have trouble with my speech sometimes and balance issues) but she didn't think those were neurological.

That PDF seems to describe a lot of my symptoms! I have wondered for a long time about POTs but I'm never sure how to approach my dr. The minute I get anywhere near a dr my blood pressure rises as I get quite anxious, so I wasn't totally sure how they would test me.

Thanks very much for posting the info!

[Rainatnight]

Simplydivine and Clarella -could you share details of your specialist physio, maybe by IM? I could really do with a recommendation and don't mind paying for it.

[Clarella]

Sorry rain, I missed this.

I could but he is just a single physio working his own practice. He's s sports physio with NHS OC health back ground. He is a physio for jockeys at local races and gets asked into our local ballet at times for the dancers etc. Hence a very good understanding of posture and joints but a very positive encouraging attitude. If you could find someone similar it would be helpful.

Increasingly though I don't see myself in quite the same way as I know many hms people are. Or rather EDS perhaps. I do think extra muscle weakening issues led to more problems and I became very deconditioned and then got injuries / very bad posture due to very active toddler. Loosing my core to a c section didn't help and I didn't get appropriate physio to help at that time. Now I'd be on it like a shot, I'm not allowing a bad back to go on for more than 10 days without seeing someone if physio at home doesn't help.

[Gavina2200]

Hi Clarella,

I would also appreciate the contact details for your physio. I am a dancer, and would love to find someone who has the necessary understanding of joints and posture and correcting these.

Many thanks!