By Jane on Friday, November 10, 2000 - 11:43 am:

Hi, guys. I'm a college kid and I'm taking a class in which I've been asked to write a chapter of my autobiography. I decided to write about my hypermobility, but I can't seem to get started -- every time I try to write about it I find myself back here checking through the pages for support. I don't know if I'll be able to write this thing so that other people really are able to understand -- doctors saying they can fix things and eventually getting angry and saying I'm not doing the exercises they give me, or just looking blankly and asking me what they should do. Most of my friends are really supportive -- I have a lot of feet and hip pain that makes it difficult for me to walk some days -- but some of them, I can see, are phobic about the idea of their body coming apart. I know that what I have isn't so bad -- it's not like I'm dying. Most of my joints are hypermobile, and they kind of follow the when-it-rains-it-pours theme, so that my foot will slip out, then my hip will give me trouble, and pretty soon my back and shoulder are out of whack as well. I've never been diagnosed; I only stumbled onto this page a few months ago after years of pain and confusion and different doctors just shrugging me off. I won't be able to see a specialist and see whether I do have HMS for a long while -- my college is out in the boondocks with a useless medical staff. Even though everything I see here makes sense to me, and so much of it is stuff I've had -- not only am I hypermobile, but it runs right down one side of my family (though I seem to have an unusual scenario, with everything a little bit busted so that nothing's bad enough to get me taken seriously, but I'm almost always in at least some pain)... I guess I could just use some support. Thanks for writing.

By Gwen on Friday, November 10, 2000 - 12:00 pm:

Jane, what a wonderful idea to write about your hypermobility. As well as being your college project have you thought of opening it up to a wider audience and maybe offering it to a publisher. A little thought just occurred to me that if enough of us got together and wrote and published something about our experiences with hypermobility we may be able to educate people about it.

What you say about having a chain reaction is understandable. Among other things, our well being depends on every part of our body being in alignment. If one joint is out it will put extra stress on ligament, tendons, muscles etc and the next joint up the line (so to speak) will need to adjust to compensate and so on.

I admire your attitude in accepting that what we have isn't as bad as some disorders we may have, and I agree with you in that. I find the hardest things to cope with are the chronic tiredness when my joints are really bad and the ongoing disbelief from the medical profession who say I couldn't possibly be hypermobile (altho I have been diagnosed as such) yet fail to provide any other explanation as to why I have ongoing pain, sprains, subluxations etc in the absence of any positive findings of rheumatoid arthritis, lupus or similar disorders.

I now stand by my nine year old diagnosis which is the only one I have had which adequately describes what I experience. Unfortunately the rheumatologist who diagnosed me has since died but I have his report which is my link with sanity and self-respect in the face of a generally ignorant medical profession.

I wish you well with both your writing and your search for a savvy doctor.

By TJ Harp on Friday, November 10, 2000 - 10:45 pm:

Hello, Jane. Hypermobility isn't all it's cracked up to be (sorry for the joke, couldn't resist). I run a couple of newspapers and do a lot of writing. I think you've chosen an excellent and little-understood topic. I know why you're having problems writing about it, though -- you're very close to your subject!

You're definitely headed in the right direction with plenty of research. I know it can be really tough to make the words say what you want them to when it's your own very personal experiences you want to express. Start writing down the ideas that come to mind -- you know what it is, so how does it affect you in a broad sense? Next, how does it affect you in everyday life -- what things must you do differently; what things have you changed? Are there activities you have to forego because of it? Talk about how you feel about how it affects you. How does it affect your family and friends? Do they help out? And yes, your experiences with doctors -- select one or two that really stand out in your mind, good or bad.
You sound like a very positive person, and you expressed yourself well in your post. I don't think you'll have any problem organizing your thoughts and expressing what living with HMS means to you!
Best wishes.

By Mar on Sunday, November 12, 2000 - 03:59 pm:

Dear Jane,

You know what's wrong with your body, better than anyone else, you have lived in it for all your life. Doctors might have a name and a cure for it (and in the case of hypermobility, they can't even do that much), but only you know what it is like. In writing about that you can't go "wrong". Just write what you feel. Remember it is an autobiography, not a nosology (official description of a disease). In our Dutch supportgroup we write eachother letters about a different aspect of hypermobility each week. For me that is a magnificent way to organize my thoughts and emotions. I really hope your paper will do the same for you.

Good luck!
Mar

By Jane on Sunday, November 12, 2000 - 05:48 pm:

Thanks y'all. I got inspired and am writing some good stuff over here. And thanks so much for your support -- it's always a huge help to visit this site.

By Arezu on Wednesday, August 29, 2001 - 10:33 pm:

Hello, I am also a college student and was diagnosed with HMS last week. Honestly It's kinda scary because even though I have had pain in my knees for quite some years, the pain pretty much all over, started just like 5 months ago. Is it common that you all of the sudden start experiencing more of these symptoms? Anyway, I would like you to send me what you wrote when you get it done. I think it would be very interesting and useful to me. Thank you

Arezu
arezuzu@yahoo.com

By Sharon on Thursday, August 30, 2001 - 12:26 am:

Arezu,
for me my symptoms just suddenly got worse around the time of my 30th birthday in April this year. i had always had some problems but noithing like what i have now.
Hope this helps

By Silvia on Friday, August 31, 2001 - 03:48 am:

Hi Arezu,

My problems also started suddenly soon after turning 29 last year. I had never had any problems with pain on any of my joints. As a matter of fact I led a very active life and felt strong. In less than a year my life changed so much... Right now I'm trying an alternative treatment known as prolotherapy. It has really eased my pain.. There's a section on it on this message board where you can read about the experiences different people have had with it. Feel free to e-mail me if you have any questions.

By Arezu on Thursday, August 28, 2003 - 07:57 am:

Hello! My name is also Arezu and im 19 soon 20,i hope i would find friends cause i dont have any(good friends)!I live right now in Finland.......!Have a new life!!!!