By Kathie (Kathie) on Friday, June 09, 2000 - 01:23 pm:

Just to let you know that the new HMSA teen site is now up and can be found at http://www.hypermobility.org/teenweb1.htm

The new HMSA site is at http://www.hypermobility.org/

By Lesley Duff on Sunday, June 11, 2000 - 11:18 pm:

Related things. Don't want to be depressing but are there any 'more mature' HMS only out there? How far does this progress, I need to plan for the future. I suppose I have had HMS since teens and it has been coming and going for years. It has really got worse since Dec '92 since I had carpal tunnel done on left wrist then right. My eldest son had Henoch Schoelen Purpura 18 months ago plus growing pains and my youngest is hypermobile (hyper too) and injuries are common.
Share your wisdom please.

By Beth on Sunday, June 18, 2000 - 05:04 pm:

How more mature do you want? I am 30. HMS is my only dx so far(except for IB, and the heart burn that I take prescription Zantac for).

By Lesley Duff on Monday, June 19, 2000 - 12:45 pm:

Beth I am 34. You are only a young thing yet
(me too).

By Beth on Monday, June 19, 2000 - 10:38 pm:

How come I don't feel young? I feel like a broken old woman who is way past her prime.

Hugs beth

By Bianca on Tuesday, June 20, 2000 - 09:08 am:

Hello,
I know this.
walking I feel like an old woman.
After a day of work I feel like an old grandmother, exhausted from her daily work.
And they say that I am just 29.

Hold your nose above the waterline.

By Kathi on Tuesday, June 20, 2000 - 10:37 am:

I'm 30 and consider myself partially "recovered". Three years ago, I was in a wheelchair, horribly depressed, unable to do much. My hips were so unstable the docs said I may never be right again.

Last summer, I hiked, biked, fished, and canoed. How did I do this?

I started by moving to a much warmer climate, doing some intensive emotional therapy, and finding myself a wonderful husband.

I'm still hypermobile, but because I exercise a lot more (and started VERY VERY slowly), things hold together better.

I wear braces as needed, but not all the time because I've found that they contribute to muscle atrophy over time.

I only take narcotics or other serious pain meds when I'm having a serious flareup or injury, and then only for a few days...NOT until the pain is gone. I blame the pain medicine for my slow decline previously. I do take aspirin, and I also take several herbs regularly that help prevent the pain cycles.

I choose my battles...it's more important to me to go canoeing with my kids than it is to wash the walls or hang up laundry. I get someone else to do things like that. My life involves calculated risks: If I dislocate something while I'm hiking, at least I was doing something that, to me, was worthwhile.

I carefully balance those risks with reality. I know that if I am halfway up a mountain and my hip dislocates, somebody's going to have to carry me back down and I'll be out of commission for a while. I choose my trails carefully. I don't go when I'm tired, or hurting, or feel "loose".

Now I'm losing my hearing due to EDS (dislocation of the stapes bone in the middle ear). I'm not letting it get me down: I've become informed about hearing loss, I'm getting a hearing aid, I'm learning alternative ways to communicate, I'm getting on with my life.

Yes, I'm in chronic pain. It's always there. Sometimes, it's less, sometimes it's more. I made a deepdownheart decision that I run my life...pain doesn't. EDS doesn't.

So to everyone who is currently in LOTS of pain...it IS possible to change it. You have to have hope. Prioritize your life...is it more important to do things with your children/spouse, or sweep the floor? Is it more important to stay in a job that causes you pain and stress, or find something that you CAN do? Should you have a life of beauty and passion, or a life made up of things you "should" do?

Make the priorities happen (take it slow!) and ditch or delegate everything that YOU don't have to do personally. Invest in the book "Work Less, Make More" by Jen White...the principles are very easily adaptable to living with EDS or any chronic illness.

Hope this helps someone!
Kathi

By Johanna on Friday, June 23, 2000 - 10:49 am:

Feeling old?
I am 19 and recently my dear old grandmother helped me to get up from my chair...

By Michelle on Friday, June 23, 2000 - 04:03 pm:

Thank you Kathi, for your hope-inducing message. I found this website just recently, and I am grateful for it and to all of you.

I was always very flexible, and thought nothing of it. I could perform tricks for laughs, like throwing my leg behind my head, or other strange contortions. I have always been very active and fit. Sure, I sprained my left ankle 25 times; sure, my arches completely collapsed when I walked or ran. I started wearing a heavy ankle brace when I ran, along with heavy duty orthotics/shoe combinations. That way, my knees wouldn't hurt so bad when I ran longer distances.

Then I hit 30 years old. My back started to hurt. So I went to physio, did some exercises, and the pain went away. Then last year at 31, my back pain came back. This time the diagnosis was that I sprained my back--I didn't do anything extreme. I merely ran 3 times a week. This ticked me off, and I tried to figure out what I did to cause a sprain in my back.I strengthened my abs and back for treatment, along with ultrasound etc.

The sprain healed, and I continued as normal, but took greater care with my actions. Well, shortly after my 32nd birthday this spring, my ankle sprained again. Then my legs felt incredibly tired--unnaturally tired for 2 days. Then boom.

My back pain came back. My status today is a painful loose hip, requiring a brace, with the same painful back problem. Some days I feel like I'm literally falling apart. Most of my joints are really loose, and I'm continually cracking them for relief.

What I don't understand is- why now? I don't have children. My hormones seem stable. Shouldn't I be tightening up as I get older? I can't run anymore, I can't even walk much without the brace. Ugh, this is difficult for me to deal with.

Thanks for listening, and for helping me become aware that I am not going insane. I will be starting a weight training program on Sunday, in addition to my regular joint specific exercises. I'm also going to my doctor to get some tests done.Wish me luck. Michelle

By Beth on Friday, June 23, 2000 - 04:49 pm:

Michelle,
they say that we are supposed to tighten with age. Very few of us have actually experienced this. I think that they are full of it! Hang in there. I have started my 2nd or 3rd round of prednisone in 2 years. I have tendonitis in my shoulder, and achillies tendonitis in my foot. Podiatrist said that I was probably a good candidate for braces on my feet and ankles due to all of the extra motion I have in them. BTW I haven't lost my arch either. It just is VERY flexible. He also never tried to tell me that it would get better with age, he said the opposite!

hugs Beth

By Bianca on Saturday, June 24, 2000 - 08:37 am:

Michelle,

I understand you so well.Stopping sports, a lot taht you like so much to do.
I have a story a bit similar like yours. Okey I had same knee problems with skiing downhill, okey I had same wrist problems with knitting but I was fit until I was 28. I made long mountain hikes up to 8 hours, I made long cross country skiing tours.

When I was 28, I got tendonitis in my right ankle (Peroneus tendon) and my whole old life broke down. I have pain walking now - 8 months later, not only from tendonitis- with every pace, I have small power in my fingers and so on. I can only walk a bit better with orthotics and special ankle supporting shoes.
I once asked my doctor : why? why now?. He only meant, tha sometimes when you are young it is like you can compensate this all, but there may be a point, when the first problem starts and then all this small balance you had with your joints is breaking down.
I was like you when it started: no children, well trained- no explanation why now.
But my rheumatologist told me the same thing than Beth's doc: that I should change my life because the problems will become worse. It is not only a question of being more or less mobile. It is also about the damages that are already set in your tissues and about the very slow heeling of these damages.

Michelle, feel free to email me, if you like.

By michelle on Sunday, June 25, 2000 - 08:32 am:

Thanks for your input Beth and Bianca. That must have been discouraging to hear your doctor say that it will get worse instead of better.

Bianca, are you on a training program at this time? (I am having trouble with my e-mail right now(hope to get it fixed in a couple of days))
Michelle

By Bianca on Sunday, June 25, 2000 - 01:55 pm:

Hello Michelle,

I am not in a training program in the moment. But I do some exercises for myself, but only on free days, when I don't work- because when I work I tend to overuse my joints during work (I am nurse and have to walk and work with my hands a lot) and some that don't work with muscles connecting to aching joints.
I was at an orthopedic doctor, but he has no much idea wht to do. So I will go back to my rheumatologic doctor, but I have not yet asked for a date. I am not in the mood to do.
The other thing I do- but also only on free days- is to swim short distances, around 150 meters, with all joints braced and tied up, that hurt. So I have some pain during swimming but it doesn't get worse.

I knew that it will worse after the first time I saw my rheumatologist, because he looked at me, told me that I have HMS and told me that I would have to change my live completely: loosing weight, change the job, no mountain hikes, no skiing anymore, wear braces for hard work...
Then I thougt, you can tell me a lot, that is easy for you- but after reading a lot about HMS and getting sure, that his diagnose was right I knew, that I better would do the things he said to me.

By Michelle on Monday, June 26, 2000 - 09:05 pm:

I find that I can go on the elliptical trainer if I'm braced and don't go too hard (20 minutes). I then pray for the rest of the day that I'll be ok. I've been just a bit stiff so far, so I'll keep going with it while it's ok.
You must get pretty tired and sore after a shift; nursing is tiring as it is.