By friendly lurker on Wednesday, June 19, 2002 - 06:24 pm:

Hi, people.

I'm 32. I used to be very active. Joint pain and fatigue made me drop out of sports one by one in my twenties. In the last couple of years, I've quit smoking and had a thyroid crash (fixed now, but still) to go along with my decreasing exercise. As a result, I've gained weight. I'm *thisclose* to BMI standards for obesity. I hate it and have developed a mild social phobia about it. Worse, much worse, it's bad for me. I need to get some weight off for the sake of my joints, if nothing else.

There are all these vague factors and test results in my Continuing Saga of Chronic Illness (est. approx. 1997). Maybe it's autoimmune. Maybe it's not. I don't know. What I do know is that my ligaments and tendons are made of old rubber bands. I need to get the extra weight off the already-weak joints if I want more out of life. And I do.

But the only way to lose weight is to work out on those loose joints. I tried that for almost a year. It hurts a lot, but it doesn't work. I have too much metabolic resistance. (On the other hand, I spent years looking at everything from Lyme to CFIDS for an answer to my joint pain, and a personal trainer with a physical therapy degree diagnosed HMS in one deep knee band. So it wasn't a total waste of time.)

My plan at the moment is to start swimming (which I don't much like and keep putting off) and maybe meet with a nutritionist (my diet is small but awful). In the meanwhile, I've stopped expecting to see a familiar face and body in the mirror and I've started watching my step (falling hurts). I feel both invisible and grotesque.

This is not how I planned to spend my thirties.

Has anyone else been through a weight gain? Metabolic resistance (doesn't seem to matter what you eat)? Loss of activities which were previously part of your identity? What did you do? And what can I do?

As a side note: elliptical trainers + sacroiliac pain = major sacroiliac pain. Don't do it. Try using the Stairmaster backward (facing out), which I learned in physical therapy.

And thank you for letting me vent.

By linda on Thursday, June 20, 2002 - 02:10 am:

Hi! as a fellow compulsive exerciser i know where your coming from. luckily I'v been able to keep weight off through swimming however had to give that up last month after my ankle dislocated. however water exercise is great. also antidepressants like celexa, prozac, and elavil do suppress apetite. I lost 20 pounds in 3 months. thanks to my PT taping and this new cheap knee brace from futuro called the thermal comfort support which has side ligament support i can now resume running on pavement. if your ankles are intact u can try running on sand. goood luck!

By Sheena on Thursday, June 20, 2002 - 04:11 am:

In my experience, dieting alone will not lose weight for me. Some extra exercise is also needed. I also had a thyroid problem and am dependant on thryoxin.

When I was your age (20 years ago!) just walking to the station (1 mile each way) was enough to get me to lose weight quickly. That is not enough now. About 5 years ago I started going to a gymn twice a week and went on a low-fat diet. That made a little improvement in my weight and measurements. However, shortly after that my back problem started, leading eventually to the HMS diagnosis, so I will always wonder if the rowing machine did any damage.

I am probably a wimp, but I would not continue with a form of exercise which I could only do with the help of braces. I would be too afraid of doing further damage. Even at my age, I could have another 40 years to get through, and I have to take care of myself.

So no, I don't know the answer. I also would like to lose about 1 stone. I am currently trying sensible eating, low-fat, and doing as much walking as I can. I will let you know if it works.

By friendly lurker on Thursday, June 20, 2002 - 11:21 pm:

Thank you both for your replies. I wouldn't wish this on anyone, but it's a relief to be understood.

I'm on Celexa and have been off and on for the last couple of years. It doesn't seem to have an effect on my weight one way or the other, but it does good things for my attitude. I also have attention deficit disorder and took amphetamines for about seven years, so I haven't got much of an appetite to suppress.

Linda, I've been worrying about swimming for weight loss and whether it will be enough of a workout, but it sounds like it was great for you until you hurt your ankle. (Ouch, by the way. How's that healing?) I have always had weak ankles. I focused on sports which didn't involve running, like horseback riding and alpine skiing. I had to run in high school, and I can sum that up in two words: shin splints. I was not designed to run.

Sheena, I don't think you sound like a wimp; I think you're making a good judgment call for yourself. I don't know what's right for me yet. Walking is always good. I live in a city and walk or take the subway everywhere. And for what it's worth, rowing machines always hurt my back.

I have started to become envious of joggers.

By linda on Friday, June 21, 2002 - 10:17 am:

Hey everyone! first off if u have weak ankles careful about kicking in water thats how my ankle went out. my physical therapist has given me a new lease on life. I Hadnt been able to walk even one block until she taught me about taping and the kind of bracing i needed for eds. i now can somewhat stand in line and walk in the mall.i try to be careful with my running. a recumbent bike seems easier on the knees. try jumping and running in the water. its aerobic and believe is as good as jogging on land. i kept may weight down for 6 years doing that so it is enough. it also relocates my hips.

By Keri on Wednesday, February 05, 2003 - 09:32 am:

Hi, it's so good to read your messages. I just came from the rheumatologist and was feeling very horrible about myself. I too was very active with running, swimming and canoeing and then after several injuries ended up having all exercises dwindle and have gained weight. I have been going to weight watchers to get that under control but have a ways to reach my goal. I have attempted using weights with much pain as well as found swimming very hard on my shoulders. Walking has been painful as my hips click and sublux and my knees swell and gather fluid. I have tried doing abdomen strengthening exercises on a ball and kept getting pinched nerves in my back. The rheumatologist told me that I needed to exercise as my muscle tone was so weak (even though she never examined me). When I asked her about the catch 22 he told me I should go see a psychologist. I know that I need to lose weight and exercise but like I was trying to ask her how do I find something right for me without further injury and pain. Witthout exercise I am in pain and it increases with exercise. I have started Thai Chi and she says that that is basically useless as is not an aerobic exercise. All in all I was very discouraged and not sure what to do now. I think I will try weights again but am concerned about further injury. She also said that physio was not beneficial and that I could not count on a physio for help. Any suggestions on what I could do. What works for those who have found weights and aerobic exercise painful?? Any feedback or suggestions would be much appreciated.
- Discouraged

By Ian on Wednesday, February 05, 2003 - 12:11 pm:

Keri - sorry!

A hyper mobile MUST keep excess weight off. Excess weight means the muscles have to work harder to control the joints that already put extra load on the muscles.

Any exercise or sports that jar joints such as aerobics, jogging etc are a disaster for hyper mobiles and make joints much worse.

Resistance exercises that have muscles working against each other build up muscle tone and for the back - swimming is a best exercise.

By shazinoz on Friday, February 07, 2003 - 07:55 am:

Keri,
You could still consult a Physiotherapist and/ or a Rehab specialist about appropriate exercise.
What about a stationay ecercise bike or a stationary recumbernt exercise bike (I use a recumbent as it puts less stress on my joints), also you could try Hydrotherapy or maybe even a form of low impact water aerobics (I used to do this and LOVED it, it really got the heart going) for support you can always wear your braces etc into the pool (I used to , I did look a bit like a crash test dummy or robo cop, but it supported and protected my already injured joints) just remember to wash and rize the thoroughly after gettingout of the pool to rince the chlorine etc free.
Hope this helps.
Sharon

By Keri on Tuesday, February 11, 2003 - 08:34 am:

Hi, thank you for your responses. I am feeling much more positive about things now and think that I will look into trying water aerobics again and I was doing Tae Bo and loved it, until I had a twisted rib interfere and then costochondritis, but my ribs seem to be doing o.k. now so I am going to give it another try!! It's so great to have feedback and support. It was just the boost I needed to get back on track!!
Thanks again,
Keri

By Jeanette B on Monday, March 24, 2003 - 05:26 am:

Results with exercising!
Began to visit my physiotherpist 2 months ago. And I can't believe it's true!
The pain I had, that even the pain-killing drugs didn't relief, is almost gone, thanks to my exercise.
I started with aerobics in water one day/week, for stabilize my joints. It hurted a lot after my exercise, but after a few weeks it didn't hurt more after practise that other wise. So I added one more day with exercising with weights in consultation with my physiotherapist.

Now, I have no problems sleeping, walking in stairs, running, jumping, typing on my computer etc.
I've lost 2 kilos during two months just by starting to move more, and lost 6 cm around my waist. I still have a few kilos to lose, but i'm on my way, and I can feel that my hope has returned of living an almost normal life without to much pain and to many extra kilos.

Just get your mind set that you will do your exercise, and remember my case, that it hurted from the start, but the pain has decreased.

I will continue going to my physiotherapist a couple of months and then start at a normal gym.

Another trick is to think of what you eat. Read about the "monitgnac-method".

I wish you the best of luck and I hope that you will get pain relief and lost of weight that you want.

By Lucy on Wednesday, July 09, 2003 - 12:48 pm:

Anyone know of exercises to strengthen finger/wrist/whole hand joints. Anything, & I mean anything, I pick up or try to hold hurts. Have been referred to a physio but not had the appt. yet. I have been wracking my brains but anything I think of just seems to make them worse. Also have hypermobile ankles that give way and seriously hurt after swimming, (as do hands), any ideas? Fortunately only a little overweight, all came on when I stopped walking everywhere. Walking may make ankles more prone to giving way but is the best for shedding a few pounds/kilos etc. without really realising. Am going to try cycling.

By hamfist on Wednesday, July 09, 2003 - 01:27 pm:

Hi Lucy
Let us work this through in reverse!
Hands and fingers hurt when you pick things up - so the short term for this is to wear wrist/finger support items. Like an elastic glove, they will retain warmth (and circulation) and will support the muscles that are having a hard time coping so less or no pain.

Ankle problem. When you are walking or standing a lot forget fashion and wear support footwear - the type that will give ankle stability. With the swimming if you are doing a lot of kicking with the feet this will put strain on the ankle muscles hence the hurt. Swimming really is a best exercise for the back and if you flail feet and/or arms then ankles and shoulders pay the price.

A hyper mobile just can not afford to carry excess weight. The muscles have difficulty controlling joints so if you load up the muscles with excess weight they are less likely to control the ankles and knees that will give pain.

Nothing is easy!!! Regards, Ian

By Lucy on Wednesday, July 09, 2003 - 02:04 pm:

Thanks Ian

Have always preferred flat sturdy leather boots that encase my ankles, so not too bothered about fashion!!
As for swimming, I am not very good, doing a form of doggy paddle, but if I try 'proper' swimming then ankles and shoulders get really bad. A 'hot spot',(a permanent sprained shoulder caused by whiplash 14 years ago), in my right shoulder also kicks in and complains.
Have subluxing collar bones, (do not know technical term), from pretty much any random movement, have got into habit of 'rolling' shoulders at first sign of pain to try and prevent it. I have always been 'double-jointed' and had occasional pain from hands, wrists, ankles, etc. but only when started a heavy duty laboratory job did the chronic pain start. It badly affects the hands and shoulders, even in non-HMS people, so for me...OUCHHH. However nice boss who thinks I'm great and has altered my job to technical support doing web, computer and sales research. Previous admin job only hurt hands once every 2 months or so. I was lucky, my GP knew about HMS, and although quite obviously considered that I have EDS, it was ruled out as I have extremely dry skin. Rheumotologist subsequently confirmed HMS, rather kindly informing me at the sight of my panic that I am not likely to, and show no signs of ever, developing rheumatism/arthritus, even though high incidence in family, (Mother psioritic arth, brother arth. knees). I am 26 and such a thing does prey on the mind.
The excess weight is about 5 kilos from changing from walking everywhere at Uni in Wales to sitting down all day at an admin job. I am working on the fitness, but trying to find something that doesn't hurt more than it helps. At the moment walking and extremely mild gym work on cross trainer and cycles. BMI of 24.5.
I am thinking of Tai Chi but I have to gather the courage to go on my own.
You're so right, nothing is ever easy, but they say the struggle makes everything worthwhile.....*Sceptical*

By Ros on Friday, July 25, 2003 - 09:30 am:

Lucy - you've just kicked something into focus for me. When I was a child, my doctor told me I had "Swimmer's shoulder", basically shorthand for "I don't know why your shoulder hurts when you swim, but obviously it does". Now I've finally persuaded a rheumy to admit I'm hypermobile, and your post has just helped me realise what my "swimmer's shoulder" really is!

Thanks!

By Geoff Galgon on Wednesday, August 27, 2003 - 09:55 pm:

I am still young (just turned 17). Up until this year, I had been doing very competitive swimming, so I am still in somewhat good shape. I loved to swim. However, due to the EDS III, whenever I move my arms behind me now, especially in the water, my clavicles will dislocate, causing a slight pain. I am, though, falling out of shape, and I cannot really do any sport that I can think of. Are there any other types of exercises that have worked for anyone? Anyone have success with Tai Chi? In fact, I have not really moved much in the past year, save for walking around. My posture has also become somewhat poor, as if I straiten my back, the clavicle will come out, so I have to sort of move by shoulders forward when I walk.

By Lucy on Wednesday, September 03, 2003 - 10:25 am:

Hi Geoff

I have recently been given exercises for my clavicles, etc. The Physio said that I should get weights, NOT more than 1 kilo, ie a can of beans, and alternately lift the tins from my shoulder to the ceiling. Also side and front raises. Bear in mind that these are my descriptions not his, so sorry if they are not very clear. These are intended to strengthen the muscles around the shoulder and help to prevent subluxtions. I have only had them a week and so cannot tell you how good they are, however, my clavicle subluxtion 'incidents' have not increased so they don't hurt!! Improving posture may help to improve and strengthen clavicles combined with the exercises but my posture is good so Physio did not mention it, and so this is my opinion.
Hope this helps

Lucy

By daphne coenders on Friday, August 27, 2004 - 05:19 am:

Hello , yesterday i was diagnosted hms.
my specialist advised me to go bodybuilding, rowing, cycling and swimming intensely, every day.
Bud i have this idea , that it is not the best thing for my joints to carry heavy loads, which you have to in body building.
Does anybody know if it is ok , or not.
he also said that when doïng heavy exercise the pain will increase, but that it is the only option to keap my body together.
daphne

By Michelle Castle on Saturday, August 28, 2004 - 11:40 pm:

Daphne,
I would say that it depends on how severe your problems are. If you dislocate easily, you might not be able to do weight training yet. Regardless, you should be able to gradually increase the amount of resistance and length of time you spend exercising - whether that's with weights, rowing, cycling, or swimming.

Exercising "intensely, every day" is certainly questionable. I wish there was more traffic on here so you could get more responses. I exercise at a fairly intense level now, and do it most days. Yesterday, I did 4 sets of 14 full-body pushups; today, I'll do 4 sets of 16, to give you an idea of where I am. But when I started, I did a variety of upper body and back exercises, using 1-3 lb weights.

I would suggest that you press the doctor for a referral to a physical therapist. I've seen several. You need their help to determine what exercises you should do, how often, how long, and with what resistance.

A couple good exercise web sites:
http://exercise.about.com
http://www.exrx.com
http://www.physioroom.com

A couple good HMS\EDS web sites:
http://www.hypermobility.org
http://www.ednf.org

Hope that helps,
Michelle