Hypermobile spine

[sueiz]

Are you sure that's not a medieval torture rack in disguise ??

Thanks for the tips Itigo, will keep that in mind when looking round for a gym. Have decided to look at joining a local gym which has a hydro pool as well as swimming pools & aqua-fit, for after the nerve-block injections if they work, or even if they don't - will be lovely just to float for a while!

Am also looking into osteopathy and/or massage.

Experiences of these plese?

Sorry Ruby, no lump in neck (had to have a feel though ) but do get cricks, frozen shoulder, and awful crunching & cracking if I don't take it very gently! Is it something you can guide the doc's hands to, so s/he can feel for themselves?

Sue

[Itigo]

It isn't a torture rack honest - I love it as I lay down for most of my exercises and although I do build up a sweat, it doesn't feel like 'proper' exercise

I am seeing a remedial massage therapist at the moment. I gave her the Brad Tinkle book to read and she is adjusting what she is doing. She has done some trigger point therapy as I apparently have loads and loads and in weird places but she wants to be more gentle now...........She is also trying to wake up some muscles that I just don't use as I compensate with others. I also have a pretty much frozen shoulder at the moment too.

I think with everything, as long as they understand HMS/EDS or are willing to learn, it's ok.............

Thanks to the mod for fixing my rather amateur link!!

[goddess]

hi ruby,i have a disc in the back of my neck,the large one,i forget which number vertebrae,that often sticks out,and ive been told by a dr that i have quite a cuvature in my neck when this happens.i also get tenderness around the vertabrae.Its weird as i always put it down to a car accident i had several years ago,i didnt think that hms could be the cause,is that the kind of thing u get? maybe i should get it checked out,although i dont often get it now.Ive found that strengthening my neck during tai chi and dancing has helped with this problem.is your pain right at the base of the back of ur head? ive had a lot of tenderness there too which gave me such bad headaches i felt sick.have u tried applying heat there,or gently massaging that area? it helped me a lot.

Does anyone else have a lump that moves in the back of their neck? Underbthe occipital bone if your head. I do and it's the cause of horrendous upper spine and head pain. How am I supposed to describe thus in a way to my dic so they will listen?

[Triality]

I have mild scoliosis (so mild it's untreatable), and have been getting a lot of crunching, popping, pain and sensations that feel like joints grinding, in my lumbar region, where I also have existing nerve damage from an accident a few years ago. Every now and then something will crunch and for hours my lower legs and feet will feel cold (but not to the touch), prickly and tingling. Could this have to do with the hypermobility in nearly all my other joints? I subluxate something nearly every day.

If it is... my doctors don't have much experience with HEDS/HMS. Any suggestions on what tests might be used to figure out exactly what is going on down there - would weight-bearing X-rays help, do you think? - would be very welcome!

[Ruby]

Hi Goddess,
I think it might be the same thing. I just tried to read back over my post. Good greif what an incoherent mess I am sometimes
I think vertebrae swell up at the base of my head/tip of my neck? This causes pain in my back and migraines. I'm not sure why thus happens. I can't get any medical professionals to even look at it. I have a formal diagnosis of hms so whenever something REALLY bothers me I go to gp or rheumy and recently hms specialist but all they say is 'yep that's hms let's increase your amitryptaline. I wish someone would help me work out WHY I have specific issues in each different joint and help me figure out what I'm to do or not do. What if it's nothing to do with hms!!!

[goddess]

hi ruby,i wish that too! it really annoys me that when ur diagnosed as having hms,they dont care anymore as they just say 'its ur hms again',without examining you!

[Ruby]

Hi Goddess,

Yep defo frustrating. I think I am going to buy the new hypermobility, fybro and chronic pain management book. At the end of the day its down to me to figure out what I need to do, or need others to do. I plan on learning everything in the book and using it as back up when I go to Gp.

[Spireite]

Yes Ruby, I would definitely recommend fathoming out yourself what is going on with your spine bearing in mind not many doctors understand hypermobility in the spine. I have read that new book twice now and I wasn't particularly impressed with the spine bits and particularly the pelvis, my biggest problem. There is a lack of advice for treatment of pelvic problems not related to pregnancy. I have improved my hypermobile spine enormously by things not mentioned in that book.

[archerygirl]

I'm having my third flare of inflammation in my SI joint in five years. The flares usually last between six and nine months, with a low 'grumbling' ache when I'm not flaring. With the HEDS diagnosis on file, it's always being put down to the hypermobility with no efforts made to check whether it's something else that might have treatment paths beyond NSAIDs and core stability work.

This time, my physio said that I'm less mobile in my lower back than he expected so I'm wondering whether the inflammation has started to damage the SI joint and stiffen it.

We've been working on this for a month now, using naproxen, TENS, heat, ultra-sound and core stability exercises but I'm in more pain now than I was two weeks ago. The TENS/heat/ultrasound relieves it a bit for a couple of hours and then I'm back to being in pain. It's incredibly hard being at a desk all day, even with frequent breaks to stretch, walk around and generally 'move off the pain'. When the pain gets too bad, even standing and walking just make things worse and I have to wait for it to subside a bit. I've been left hanging off the wall of my cubicle after deciding to walk it off and discovering that my legs are buckling two steps from my chair!

The physio has said that we'll give it another couple of weeks and then we'll see whether an SI belt will help to hold me in place better and allow the inflammation to subside a bit. I have a couple of questions before we do it: I've been told in the past that bracing is an absolute last resort because it weakens the muscles that I need strong to do the work that the ligaments can't so I don't want to jump into this unless I know there's no alternative.

1) Does anyone have experience with SI belts used for SI inflammation?
2) Is it worth me insisting that a doctor do x-rays etc. (we haven't this time) to check whether there's some kind of inflammatory arthriris going on? I've been told that HEDS makes anylkosing spondylitis impossible even though I have an grandfather and uncle with it, so nobody has been willing to see whether I have the gene or look into the causes of this more deeply than saying it must be the HEDS/HMS.

[FIN1]

Hi

I have widespread hypermobility and suffer pain in all my joints since having my son 2 years ago. My back is always hurting and makes terrible cracking noises. I sometimes feel like at the the top of my back inbetween the shoulder blades it's as if something moves and then if I lean a certain way and crunch my back it feels better again. Does anyone else get this. I sound mental when I try to describe to other people who don't have HMS. I never use to crack in my joints but now it's bad.

Lorna

[Fiona-Jane]

hiya,

my spine is extremely hypermobile, i can do all the tricks the contortionists in the circus do and several consultants have commented that they've never seen anyone with a back as flexible as mine i get a lot of crunching too, and also the same feeling of relief when i can get an achy bit of back to crack. i find the stronger i keep the muscles in my back, the less my back hurts although it still cracks as much. you can also feel all my vertebrae moving by pressing them, this is also possible in 'normal' (non bendy) people but it is unusual to be able to move every bone and unusual to move them the amount that they move in us bendy people as our soft tissues allow a greater range of movement from each bone.

lots of my back pain comes from tightened up mucles and so stretching eases it really well, i have a gym ball and find it really nice to wedge it against the sofa (to stabilise it a little) and then arch over it and place my hands on the floor so i dont fall, it's a really nice stretch! and i find swimming a really good way to keep my back muscles strong while relieving the pain a little (i always hurt less in the water, as your weight is supported so your back muscles get a bit of a break while you're just bobbing around). pilates is also fab and has made a huge difference to the pain i feel in my lower back and the pain i get a bra-strap level in my upper back. i also had a few courses of acupuncture on the nhs from my local pain clinic and it worked really well at easing the crampy pain that i get in my upper back.

generally keeping moving also seems to limit my back pain, the longer i sit still the more my back muscles cramp up so i fidget, wiggle, and move my back when i'm sitting down.

so you're definately not alone!


fi

[sueiz]

Hi,

I'm sorry to hear you're having such a rough time of it at the moment. I'm no expert I'm afraid, I'm only just learning about SI joints myself!

I think, from what I can gather, that supports and braces, aids, sticks, crutches etc seem to divide the medical peeps. One set seems happy for you to use them as a pacing tool, the other insist that they only weaken your core muscles in the long term. I suspect both are right, so I take the view that I will use them, but only when absolutely necessary to protect myself from injury when I have to do something that I know will aggravate my weak joints - like sitting at a desk all day!!

I try to do without my stick and/or my wheelchair as much as possible (pride as much as anything!) but there are times (like needingto go round town, or down endless hospital corridors) where I simply couldn't manage without them. I guess what I'm trying to say is, you know your own pain & tolerance levels, what in your life is unavoidable (working for instance) and you have to find a path that enables you to function without getting stuck in the cycle of doing too much, pain, enforced rest, trying to catch up by doing too much...etc etc...

Core muscle strength is key, but if you already have overtight muscles or damage due to joint problems, you need to get them to relax & recover before trying to build back up, otherwise you're just adding to the problem. My chiropractor has explained it like this: Muscles are like groups of elastic bands, when they get injured they "shred", a bit like those cheese strings, so can end up knotted and kinda cross-knit; so before you can strengthen them, they need to be realigned so they can work efficiently.

There are no quick fixes i'm afraid, but your physio certainly sounds like he's willing to work to your body's timescale, and he may be right that ypur muscles need to relax before he can work on improving them, for the reasons stated above.

Best wishes & gentle hugs
Sue

[archerygirl]

I got fitted for the SI belt today. After all, sometimes you have to do what the physio says just to get them to stay on board with helping!

So far, I've found it incredibly uncomfortable to wear during my exercises because a lot of them are done on my back and the thing digs in painfully just over the SI joint.

It escapes up to my waist level as soon as I sit down no matter how tightly I fasten it.

And it feels like it might escape if I move vigorously, so it may not be the easiest thing to wear while doing housework.

As those are all the times that the physio suggested that I should wear it...

I'm going to give it a few more days, but so far I'm not sure whether it's going to work for me

[nemonie]

Hiya,

What SI belt did you get, i.e. what brand?

I have found it much easier to wear mine over my jeans or trackie bottoms, it tends to stay put a bit better then. They are not really designed for doing laying down exercies in, more for holding your SI/pelvis together when walking and doing normal exercises.

[archerygirl]

I suspect that jeans or tracksuit bottoms are going to be frowned on at work

That does make sense about what the SI belt is really for. So it's not going to be helpful for my physio exercises or yoga classes, which were two times that the physio specifically said I should wear it. D'oh!

I guess wearing it to do housework and any amount of walking is all that I'll manage with it? That...makes it seem a little less helpful than I'd hoped it would be. My worst periods are sitting at my desk at work and lying in bed overnight. Moving around makes things feel better, but taking it on and off ten times a day when I switch between sitting at my desk and walking circuits of my office doesn't seem that practical.

I don't intend to give up on it yet so I'll see whether I get on with it better tomorrow. Maybe when I'm trying to get some vacuuming done or something?