By Emily on Monday, August 19, 2002 - 01:49 pm:

hiya i am emily i am 15 years old and i have got hypermobility syndrome and reflex sympathetic dystrophy. i get a lot o pain and it does my head in! how do u cope with your pain? how do yuo cope with school? i have been on a pain management course at the mineral water hospital in bath, it was gr8 whilst i was there but its tricky when i am are back at home. i go to school and i will be in year 11 when i go back after the holidays in september, i have got a support assistant and a laptop. i only get 15 hours a week support assistant and i find school hard. i find my pain is bad and its hard to concentrate. i am doing 11 gcse's andi am fiding it too much to do but my head of year wont let me drop any subjects . how do othger people cope??? i find it so hard to get friends to understand too, i have got hardly any friends at school cuz they dont understand. please reply someone i would love to hear form other teenagers. from emily

By Sal on Wednesday, October 23, 2002 - 04:28 am:

Hi,

I'm fifteen too and have the same problems as you, my joints always dislocate and my muscles are always sore and i suffer severe migraines. My friends dont understand and neither do my family either. I guess im the opposite of you I do really well at school and find the work really easy but i cant handle studying for as many hours as i used to because of the pain. Maybe we could become friends and support each other. You sound like a fab girl.

Cya
Sal

By Hamfist on Wednesday, October 23, 2002 - 11:16 am:

Sal

Your muscles being sore mean that you do not have adequate muscle tone for your hyper mobile joints - they are having to do too much work for their situation.

If you dislocate lots you may have trapped a nerve but if migraine is factual then an allergy test can often find what you are consuming that causes the problem.

e-mail me if you like, Ian

By Sheena on Thursday, October 24, 2002 - 02:54 am:

Sal,
I'm glad you enjoy studying, and I know exactly what you mean about not being able to study for long periods. Do you already have some "aids", like a very supportive adjustable chair, and a writing slope instead of a flat desk surface? They can make a big difference in comfort. I had to get them last year when I was studying for an exam. A physiotherapist might be able to recommend some, or look on the internet. Try
http://www.hypermobility.org/
although I don't know for sure if they list chairs and desk aids. I got my chair from
http://www.asd.co.uk/index.htm
and I used the graphics board my son had for school, which has a small slope. You can improvise a writing surface to get a comfortable slope - basically you should not have to lean forward to write, just move your arm.

Good luck - don't give up!

By Emily on Saturday, November 09, 2002 - 09:11 am:

Hiya! it is Emily here! I have not been able to come on this website for ages because my computer has been playing up i am so glad i am able to come back on now!
Sal- Hiya I am emily, 15 with HMS. i think yoiu are right, i think we can become good friends :-) we can help support eachother that would be cool. where do u live? i live in Birmingham UK. email me madthing2001@hotmail.com
My neck is so painfull at the moment it keeps clicking and my head keeps clicking and is giving me headaches, i have got a neck color from the doctor but i try not to wear it all the time because i am scared the muscles will get weaker. how are you at the moment? reply soon form Emily xxx KEEP SMILING! :>

By Victoria G on Sunday, December 05, 2004 - 04:00 am:

Hi, I am Victoria. I am 18 and have HMS and an undifferentiated connective tissue disease. I have had joint probems all my life but have only recently been diagnosed. For the past 2 years, I have deteriorated and so far no-one has been able to help me. I have tried so many painkillers, antiinflammatories and nutritional supplements and exercises but nothing works. I have alot of neck and back pain, so it hurts to sit, stand, walk, exercise,etc. The only position of relief is when I lie down on my side but even that doesn't always work. My neck crunches when I move it and I cant keep it turned for more than about a minute without getting pain down my neck and arm. Draughts also make me worse. My back cracks alot and is sore to press the vertebrae and muscles. I sometimes get headaches and nausea from the neck pain. I get alot of sharp pains in my wrists so i use supports coz i find it hard to write, hold things, text,etc. Also get pins and needles and arm pain. Knees hurt to walk and get a lot of muscular and ligament pain in legs. Also have chronic fatigue so can fall asleep at any point of the day! I also get very sore and stiff, making it hard for my body to move.
I always try to be positive and strong and never let it get in my way. I am determined to make the most of life. But it is so hard! I am at university now, and work and play is so hard because of my pain and tiredness. I lie down and sleep alot in the day or evenings to try and rest. However i sometimes can't get to sleep because of my pain. I often cant study for days, so its hard to keep uptodate. But so far, I have done the work set just about, but i have times when I just need a good cry. Its just so frustrating. I cant do things I like anymore, like my hobbies. Everything is such an effort. Even walking to the corner shop can be exhausting for me. My eyes close! and my muscles feel like they've done a marathon. I just need help, pain relief and management, so hopefully I will be able to be a normal teenager again. My family and friends and people at uni have been really understanding and supportive so I have been very lucky in that respect. Has anyone got any advice, or is there anyone out there who is like me? Any teenagers who want to be my friend? We could help each other as we would understand how each other feels.
Keep smiling everyone.: ) We will get through this.

By Natalie DeAngelo on Sunday, February 20, 2005 - 05:29 pm:

Victoria,
hi. i am 14 years old and probably can not relate to you as much as you would like me to. i got diagnosed with hms around 4 months ago and ever since then my world has turned upside down. thankfully i do not hurt as much as you do, but i also have chondromalacia in my knee and tmj on my jaw. it is so annoying, the tmj, because it prevents me from chewing gum and sometimes it hurts too much to eat. i used to play field hockey and lacrosse but now i wont be able to do any of those things. unfortunately, none of my friends or family really get it. they dont understand how much it hurts just to get through with one school day. my one friend will kick the back of my knees just as a joke, but will make fun of me when i scream in pain. great friend huh? only one of my friends really tries to understand and i am sooo thankful i have him. what did you do to make everyone so understanding? i dont see how u got so lucky!! heehee. i am sooo glad i found this site, tho, becasue i had no idea so many people had the same thing as me! it is sucha relief to know i am not the only one out there. i really hope u get better, even if it is just a little better. best wishes to all of you...
Natalie

By Emily : on Friday, February 25, 2005 - 10:12 am:

Hiya Natalie! *painfree hugz* I am Emily i am 18 and i live in Evesham, i know totally what u mean when you say it can sometimes really hurt to eat like an apple or something simple like that! Its nice to hear that you have got one nice friend who is trying to be supportive to you, the other friend sounds like one you could od without! Friends are like four leaved clovers,,, hard 2 find and preciouse to keep so hold on to that supportive friend of yours! :+). I have got a good friend at college called Lori and she rocks!
If you ever want to chat on msn or anything just add me my msn is madthing2001@hotmail.com
Keep smiling chuck
*painfree hugz*
XXXXXXXXxxxxx em xxxxxxXXxxxxxx
:-) :+) !Smile! :+) :-)
;)