Lower Back Pain

[Bob-a-Job]

I have a condition called Congential Hypermobility Syndrome (Major joints), which is sometimes known as double jointedness; I am able to run and do various activities but I am in constant pain, to varying degrees, so much so that I qualify as having a disability.

I would like to know if any body can suggest activities that are non-load bearing (or at least not free weights) and are as strenous as running without the impact, and not swimming (most of the strokes mean I dislocate either my knees or shoulders).

[Ruth]

Hello,

You may want to check out the website www.hypermobility.org which has an awful lot of information and resources on hypermobility. You did not mention whether you have BJHS or Ehlers-Danlos/Marfans Syndrome, however I am sure you'll find that site very useful.

Have you tried/considered water running, where you're suspended by a belt around your waist and walk/run in the water? It is slightly less taxing on the joints and some HMS patients find it a lot easier.

If you would like any papers/information on HMS please feel free to contact me - I did my MSc project on it!

[xceptknow]

You have a lot of movement you're capable of and you have to tighten the muscles in reverse to accommodate the other sides that your capable of reaching. You're better off stretching (you barely have to stretch) actually tightening, and getting use to what you're capable of. A lot involved, we have our whole body, not as loose as you are as easy, but nothing which can't be reached. You have to start to tighten up and especially in some of what we might call odd positions. You're not ready to run yet.
That doesn't mean don't. I can go on just have to stop. Don't dislocate your shoulder grabbing your head through your leg standing up.... hardy har har
Always careful in all ways

[Ruth]

xceptknow,

In people who have hypermobility syndrome, be it genetic in origin (such as Ehlers Danlos, Marfans or some cases of Osteogenesis Imperfecta) or other, they simply cannot "tighten up". There is a genetic mutation in the gene which codes for collagen - a key part of many biological tissues - which means that any tissue containing collagen is hyperelastic. This includes the skin, ligaments, tendons, internal viscera, basically just about every component of the human body in some way, shape or form.

This causes the characteristic diagnostic features associated with such conditions and is not something that will simply go away. Muscle strength can be improved however it is extremely challenging to do this in a patient who regularly dislocates virtually every joint in the body due to ligamentous laxity - which is mostly un-controllable and certainly not done for amusement as you seem to suggest.

These people often do not dislocate purposefully, even picking up a pen to write their name can cause their fingers to dislocate, putting on a jumper causes shoulder dislocations.

Given your response, I think you should go and read about Hypermobility Syndrome at www.hypermobility.org and become better aware of what this condition is, as you do not seem to fully understand that it is not just about people being more flexible than you, and is not something that just resolves with "tightening up".

I hope this is of some help to you.

[xceptknow]

Hello Ruth
I sent you a different private message which I don't know if you received because a response came on ?ng my membership. Either/or I'm heading to hypermobility.org and will get lower back to you.
Good days and nights weather sunny, rainy, snowy, sleety, haily, like it is today smiles.

[Bob-a-Job]

Hi Ruth,

Thank you for the link, it was quite helpful; I don't have EDS III, it was ruled out by a consultant many years ago for a work related medical. I do have many of the symptoms though.

I recognise some of the stuff from the website, I score 6 on the Beighton scale (from memory) as I only get the HMS in my major joints as I say, not in my hands/fingers (although I get trapped nerves in my wrists).

I've done a bit of running in water as a physiotherapy in patient (headley court?), I didn't really find it that helpful, although I find the swiss ball exercises good (I freaked my physio when I said I was balancing on the thing without touching the ground and with my legs crossed) but I find my posture is better afterwards.

As you have said to the other person replying to my post, my condition isn't really helped by stretching, I've tried yoga type exercises and although they make me feel more relaxed and in generally less pain, I don't have any long term benefit over other exercises and generally I get funny looks as I'm a heavy built person (think oddjob from James Bond) and I can stretch more than virtually everybody else in the class.

And I the martial arts that somebody has PM'd me with aren't such a hot idea; I can do martial arts (Orange belt in Jiu Jitsu) but I now have to wear knee braces whenever I do anything with lateral movement on my knees as I have dislocated my knees three times and seperated my AC joint three times.

I would be interested in seeing your MSc work on HMS, I'm always interested in reading more on the condition as most medical personnel I meet for my condition haven't a clue what I'm going on about half the time.

Many thanks

Bob