By mariette on Friday, November 09, 2001 - 02:03 am:

Could anyone tell me about their finding with swimming? I always feel my knee knick.... what sports are better?

thanks!

By Rose on Saturday, November 10, 2001 - 08:39 am:

Hi Mariette - I am 30 and joined gym about 3 months ago and at first the physio said to get up my general level of fitness through swimming.

This was because for the previous year I had been told to stop doing exercise as they did not know what was wrong with me, once diagnosed they said that it was better to exercise. After about 1 month of swimming every day (which, like you, I foudn had no particular benefit) I then moved on to doing very light weights.

My trainer came round with me and any weights that hurt or made joints click in a wierd way we took out or made the weights lighter still. I do about 3 sets of each machine with 12 reps each time. I also do very gentle! stretching, so that you feel it in the middle of the muscle not near the joint ends which can be damaging.

It is a fairly gentle weights routine, I then use only the machines that take the impact off you such as the cross country trainer and the precor. Both of those have been fantastic for strengthening the muscles in my hips and knees so I am sublaxating less and I have now found most of the time my pain is reduced by up to 25% - 50%.

When it backfires is when I am tired and/or dehydrated then I can find I can't walk properly the next day and on those days exercising is not possible. I have found it a matter of listening closely to my body and tentatively trying a little bit each day (only 5 days a week).

It really helps make me feel like I am doing something positive as well. Even if I can't do a full routine and spend most of my time in the steam room I still feel more positive and healthier which I think definately helps!

I hope that is useful - but bear in mind I have HMS and do not have some of the more complex problems that other people seem to have - listening to your body is the most important thing - I think exercising for us has to be very individual, so I never do classes as then I might feel I have to push myself which could be negative! Hope that helps - Rx

By mariette on Sunday, November 11, 2001 - 04:22 am:

Hi Rose

thanks for your answer. btw sorry about the layout on the main page yet, I did not work out how I can change that to normal again.... but I hope I soon will.

weightlifting.... I don't know.... my joints and muscle hurt a lot, and when I do some gardening I already have to pay.

but on the other hand I know that one can easily get into a circle .... doing little.... less muscletone..... doing less etc...

but I really don't know what to do any more.. I will give your idea a bit of thought and maybe I'll try

are you training in a gym? did I understand that correctly? the problem is that going to a school or gym is too much (I also am a heart and lung patient ;-(...)

mariette

By Rose on Sunday, November 11, 2001 - 06:36 am:

Hiya mariette - sorry I was not that clear about where I do all this - I live in London and so thankfully belong to an amazing gym which has a medical centre attached to it, its called the Third Space in Sherwood St, Piccadilly W1 , if anyone else is interested.

so I first saw a physio therapist who then talks to my trainer and they hatched a plan together and took me round to see how I got on. I do it on my own, so no one else's pace affects me. I think that is crucial and why I feel it helps - I tried before doing gym stuff and got scared if I felt even a tweak or if anything hurt, but now if I get worried I just shout for my trainer who in turn gets the physio!

In the first few weeks I got scary amounts of muscle spasms, particularly in my thumbs, but apparently that was the muscle tissue breaking down and building up and it has stopped now.

Also, you say gardening can make you feel worse, but the thing to remember is lifting small weights is targetted, so you know exactly which muscle you are moving and training. Therefore it is probably safer than doing a general form of stuff like digging or weeding, which can put strain on several muscles and you probably don't realise which ones. At least this way you can carefully monitor yourself.

However, I am not a heart and lung patient, like you, so I don't know what to advise, if you can find a gym like mine, they might be able to help, as then you are monitored while you try things out or a physio could fix up a home programme. Saying gym makes it sound really full on - but its really not, and I can't stress enough what my trainer says, which is the minute I feel worried - just stop. and on a bad day - I don't try and be heroic and fight it - I go to bed!

My gym also has heart monitors you can use whilst doing things, so you can track your heart rate - I don't know if that is useful to you.

whatever you do, don't give up, you sound like you have been through a lot, but you also sound like a fighter and there will always be dark days, but I really think you are sounding positive by the fact that you are asking advice. I hope some of it is useful.

Please let me know how you get on, but if you do go to a gym just make sure they do know what they are doing and research HMS for you, mine took ages to find out about it before she started to make up a programme, which made me feel much safer.

oh and theres also Pilates, again you can do it one on one and make sure you get an accredited teacher - I find it very expensive and prefer the gym option, but it might be worth you finding out about, again it is a very gentle form of exercise and is about building up strength.

gentle hugs

Rose

By mariette on Saturday, November 17, 2001 - 01:47 am:

thanks rose for your kind words and advice.... I have been reading on the board quite a lot today..... makes me happy to see that so many people found eachother....

I will let you know what I am going to do to strenghten my muscle again.... I just need to but right now.... pfew

take care

mariette

By Barbara on Tuesday, November 20, 2001 - 12:50 pm:

Rose,

The next issue of EDS Today is going to include articles on EDS and exercise. Would you be interested in writing about your exercise program for our publication?

I have also been doing light weights, high reps and have found that it helps me strengthen my joints.

By Rose on Wednesday, November 21, 2001 - 02:51 am:

Hi Barbara - yes of course I will write about it, but please remember that I am new to this too, so am not an expert! I have not been diagnosed with EDS, but with HMS - although some people believe they are the same thing, so is that still relevant?

Just let me know through the board where you would like me to e-mail my details to, I would rather not post them up on this board!

My trainer will be thrilled if we go ahead, because she has put a lot of time and trouble into helping me and it would be a good way to thank her.

look forward to hearing from you soon - Rose

By Ian on Wednesday, November 21, 2001 - 09:58 am:

Adding to Rose's posting.

EDS and HMS are not the same. Hyper mobile joints can go with some forms of EDS but an EDS sufferer has other problems.

One can simply have hyper mobile joints and be very flexible with no problems but HMS sufferers do have problems with their joints.

They need to avoid jarring exercises and they need to keep good muscle tone and light body weight. Gentle very regular exercise that gets the muscles supporting the joints to retain control of the joint is good exercise.

Having stated that, once a joint gets bone to bone contact or when there are other major joint problems the HMS has got out of hand and there is no simplistic answer.

By janis on Wednesday, November 21, 2001 - 04:25 pm:

My daughter is a dance student - asthmatic, has extreme hypermobility and low muscle tone - she has been given mixed information/advice from experts but needs advice from other dancers/dance specialists. She has been doing pilates for three years on a one-to-one basis but is suffering with her knees , does anyone have any info?
thanks

By Barb on Friday, November 23, 2001 - 09:44 pm:

Rose,

If you want to email the article, send it to info@edstoday.org and I'll get it. To mail it, send it to EDS Today, PO Box 88814, Seattle, WA 98138-2814. Be sure to include your postal address. As a thank-you for the article, we will give you a free copy of the issue in which your article appears.

It shouldn't be a problem that you have HMS rather than EDS as most of the problems associated with joint instability are the same for EDS and HMS when it comes to exercise.

By Rose on Monday, January 14, 2002 - 11:17 am:

DearBarb - I am so sorry I have not written anything yet - I have been madly busy and am atempting not to overload myself for obvious reasons - I am really keen to write this article, just give me time and it will be done - sorry for the delay, but this weekend looks good!! Best wishes - Rose