Pilates

[Purplesheep]

I've been doing Pilates for a couple of weeks and I'm really liking it! I think what kind of instructor you have is really important. I go twice a week at my university gym and so I have two different instructors. One is really amazing, he makes sure everyone gets the exercises right and when I told him about my problems, he checked up on me several times and showed me how I can do things differently so they don't hurt me. The other instructor doesn't do any of this unfortunately, she just told me to stop doing things if I can't do them and also does some more advanced (at least that's how it seems to me) exercises that my back can't handle.

I can't do all the exercises and I always feel like someone's beaten my body with a stick directly after a class, but a few hours later I actually feel quite good. Also, my shoulder, which was pretty much in constant stiffness and pain, has improved so much since I started. Now I only have pain occasionally, after sitting or lying down for a long time, though it still clicks everytime I move it. My ultimate goal is one day without back pain - that would be really amazing.

I would definitely recommend Pilates, though it's probably relatively easy for me, as I'm used to exercise and my symptoms are relatively mild compared to some people here. I will be trying Yoga this week too.

[leashy11]

It does seem to be alot to do with the instructor, I had 2 that turned me down for sessions because I'm such a mess and one who said she'd try but made me worse because she wouldn't listen to what I was saying. I'd like to do pilates but I really need one to one sessions (they won't have me in a class because of the terrible tremors I get) and just can't afford them! Be careful with yoga, they seem to be keen on increasing flexibility and some teachers seem to want to push you too far in that direction, I had one years ago who got very excited about how flexible I already am and started pushing me to do things that took my joints way too far and hurt me so I stopped going.

[Purplesheep]

I tried yoga yesterday, probably shouldn't have gone in the first place as I've had three really bad days in a row... but I thought I'd try it anyway. I ended up just sitting there doing nothing for about half of the class. There were lots of exercises that put involved putting your weight on your arms, and my shoulder just couldn't cope. There were some nice, Pilates-like back exercises at the start, but after that it was all stretching and I refused to do it, as I'm bendy enough as it is and it just hurts. It didn't help that most people stared at me, and some seemed intent on showing that they are so much better than everyone else because they can stretch further. I probably could have outbent them quite easily, but I decided to be sensible The instructor didn't say anything, I doubt he even noticed. I've decided to stick with Pilates, and I can't wait to go again tomorrow as it makes my shoulder feel so much better. I might try to go twice a week until I start physio next month. I think I'm turning into a Pilates addict!

[Tibisca]

I was told that yoga was definately a no no!
Pilates has literally given me my life back but I had many one to one sessions and have now progressed to the "old crocks class" as we call ourselves. The instructor limits the class to 4 so that we can be properly supervised and tailors the exercises to our individual strengths and weaknesses,( he also has experience of working with other hypermobile people). It has taken 18 months of careful graduated sessions but I feel better now than for the last 5 years.

[BendyWedny]

Hi,
I’m new to the site (Hello all!) and predictably after some help please! I’ll give you some background. I’m particularly hyper-mobile in my sacrio iliac areas. After years of trouble I railroaded my GP in putting me forward for sclerosiant injections to the ligaments around this area in 2005. At the Coventry Pain Clinic in the UK. Life was largely transformed and was feeling like I was in a new body.

Yesterday I had a bit of reality check, for the first time since 2005 my SI joint has moved. I’ve been doing so much outdoor exciting exercise (5 months skiing plus lots of walking & biking etc) and according to the chiropractor I’m not that even and my back and bum need some serious attention.
I really don’t want to go back to how I was, so need some help and advice as to the correct person that I should consult. Is this a physio or a sports therapy person? Has anyone else had to do this kind of work, what did you do if so?

I’m currently re-locating to Brisbane, Australia so anyone who’s in this area with a good contact I’d love to hear from you. I really hate the gym so any solutions that could be met outside of one would be great...if not I guess I’m going to have to grit my teeth & bare it!

Many thanks in advance
modnote: original post and replies moved to existing Pilates thread

[jax]

Hi Bendywedny,

Physiotherapy / core strengthening exercises are really good for strengthening/stabilizing
around the hip, glutes , thighs, lower back etc as is Pilates.

Best wishes
Jax

[roqchiq]

I'd recommend pilates too. If you're used to really active exercise such as ski-ing you may find it a bit slow at first but stick at it 'cos the results are worth it!

If you can afford it, it's a good idea to have 1:1 lessons, especially at first. Having HMS means your proprioception is poor so you'll need a teacher to make sure you're doing the exercises properly.

Oh, and welcome to the site!

[Purplesheep]

I agree, Pilates is amazing. For people with HMS, it can take more time for muscles to get stronger, so you need to persist. I also have back problems and after two months, I am starting to feel like it's making a difference.
Cycling is actually quite good, especially for the bum and thigh muscles. You could also try swimming.

Physio can be good, but only if your therapist understands hypermobility. This can be quite hard to find, as most people have the opposite problem of being too stiff, so the "wrong" physio can make things worse. Most of all, it's just a question of trying different things and finding what works for you.

[CJ7]

Hi,
I'm new to the boards and newly diagnosed but have found a really good physio (private, so after my insured eight sessions will have to pay) I'm only just starting on treatments but pilates is what we're doing together to really stregthen my core muscles, we're using ultrasound so I can identify the right muscles and see what I'm working. I'm also doing some swimming, and biking has been recommended. I also see a McTimoney Chiropractor who is helping me a lot, and also recommended the pilates. I too have a lot of low back difficulties (hate the word problems) amongst other aches and pains and love to ski too. Good luck in Aus.

[Spireite]

Hi Bendywedny,

Funny I went to Coventry in 2006 for the same thing, but the consultant there was adamant that the SIJs are the only joints in the body that don't go wrong, despite extensive conversation with his secretary beforehand to make sure I didn't have a wasted journey. I was always sure it had more to do with his running 2 hours late, which was helped more by getting rid of me in 2 minutes. Still I didn't pay his request for £250 cos he didn't do anything - not even a letter to the GP. I felt like suing him for my train fare, as I wasn't allowed to drive with injections promised.

So I got it done elsewhere. But my whole body was a very big mess beforehand. My pelvis was and remains twisted, my glutes were non-existant, I had scoliosis, bad neck etc etc but all improving very slowly. I think the most important is to get the fundamentals right. So if your SIJ ligaments have stretched out again, why not repeat the injections? With a more stable foundation, the muscles work better. If the whole pelvis is twisted and back gone, then it is a big job to straighten it all out, especially in us hypermobiles. I mean there is no quick fix. I went years with no progress. Best read this forum for lots of tips about core stability, orthotics, especially the SI thread. I don't think many physios know how to treat it, as so much muscle dysfunction affects it and can pull the joints out, especially as there are no muscles specifically to hold it in place. I speak from 10 years SI slobbing around and I'm doing better physio-ing myself, with lots of sclerosant injections.

By the way, I did find the only way to find the right internal muscle was using ultrasound despite lots of angry physios shouting at me. Where is there a physio in this country with ultrasound (and doesn't insist on yanking SIJs)?

[BendyWedny]

Thanks for all your advice. It sounds as though Pilates is the way to go. I've had an inital search and seen one centre in Brisbane that has 4 physios hopefully one of them has some HM experience. I've had a go with Pilates before but didn't really think it was doing a great deal so think I'll go for a small or 1:1 if I can afford and the beginning. I'm hoping I can find some enjoyment/benefit in it as I didn't really feel the love before - but still better than the gym!

I'm really sorry to hear you had a bad experience spireite, I had to wait in the NHS queue for my treatment. I'm going to give the Pilates a go as I've had a lot of physical stress on myself (without realising the damage as thought I was doing ok). I've been skiing in France for quite some time and also currently back packing. I think regardless of the need for more injections, I should address my muscles imbalance also. Out of interest how did you go about finding someone privately to do the sclerosant injections and did they have experience of HM patients?

Thanks

[Spireite]

Hi Bendywedny,

Certainly back then I was told the nhs didn't support sclerosant injections cos they aren't scientifically proven (cos the drugs companies don't stand to make big profits out of glucose).

I do stronly think that we need to attack on all fronts. All bodyparts are connected and each works better if everthing else is working better. So I do pilates/lots of core stability daily as well as injections, proper orthotics etc. I did core stability for 5 years with no progress, a lot of tears (me) and tantrums (physios). 6 weeks after the first injections, hey, I could suddenly do a basic exercise I couldn't do before. Equally, I don't think it's enough to have the injections and sit back and think that is it, it isn't without training the core muscles to support the dodgy ligaments to the max. So I do think we need both, or maybe only if you are really bad and chronic like me.

I found my current consultant from the BIMM list. I emailed him and he at least knew about hms (says 10-20% of his patients are hms) and I spoke to his secretary on the phone and she was knowledgeable about hms (had a change of secretary since then). He is not an expert on hms, but he does recognise it, does know our bodies are different and is willing to learn as I pass on any hms info to him. He does do nhs as well, but his nhs waiting list is 3 years long.

[BendyWedny]

Hi,

I’ve orthics as well that certainly helped some. I saw a physio for ages too and he couldn't seemingly make much progress, but like you once I'd had the injections it was miraculous. I will certainly sort out more injections if I need them but reckon I need to have a good go with the Pilates first just in case it rights itself.

Thanks for the info anyhow. Hopefully they’ll have something similar to the BIMM list in Australia (I’m sure they will!)

[Itigo]

Hi,

I moved to Australia recently too, but not Brisbane unfortunately. I just looked for a physio close to me with an informative website and one that did 1 to 1 Clinical Pilates. My physio doesn't know about HMS/EDS but is fast learning that being bendy does sometimes have drawbacks. I get helpful exercises for my shoulders and knees as well as the Pilates.

Just a quick note about the health system here. If you earn a certain amount, it pays to have private insurance or you get the Medicare levy whacked onto your tax bill. We have health insurance and have unfortunately needed to use it frequently for me in the last year so it's been a godsend. There is a 12 month pre-existing condition clause but on the extras side (physio, dental, optical) the shorter waits are often waived. I get $300 a year for physio. OK, so I used it by June but it does help. The other thing I hope you experience is that the physio is so much cheaper over here. Privately I was paying 30 pounds for half an hour in the UK. Here I pay 15 pounds for an hour of pilates. The physio isn't with me much but does give me time to catch up with any issues and will examine me if necessary, has taught me to tape my knee, manipulated a tight back etc.

I hope you find a good physio up in Brisbane. I do go on an Aussie EDS website so could ask on there for you?

[BendyWedny]

Hi Itigo,

Thanks for you message. That would be great if you don't mind posting on the EDS site for me. Finding a professional who has an understanding of the issue is half the battle and hard when you don't know the area.

We haven't got insurance sorted yet, as we haven't got jobs as yet. However we will be sorting that and it's handy to know. I realise I won't be covered but any physio payment help is a bonus!

If you could let me know if you hear of any contacts for Physio/Chiropractor/Oestopaths for me I'd really appreciate it.

Many thanks!