By Sal on Wednesday, October 23, 2002 - 04:36 am:

Hi,

I'm a fifteen year old girl with HMS. I am in constant pain and my friends dont understand my problem at all!! One of my really good friends who i have been friends with for many years told me yesterday that she didnt want to talk to me anymore coz my disease made HER depressed!! How the hell does she think it makes me feel?? Most of my friends dont even believe there's anything really wrong with me, even my best friend rolls her eyes at me occasionally. Because of this and the combination of pain, i think i am becoming depressed, I cry myself to sleep every night and I'm not as happy as i used to be. Does anyone know anything i could do to inform people about HMS without looking like i want sympathy and also does anyone else feel like this?? I have had to give up basically all physical activity and i think im putting on a bit of weight, so if anyone knows of any good sports that i could do that wouldnt hurt my joints or muscles could they please let me know?

Thanks
Sal

By Hamfist on Wednesday, October 23, 2002 - 11:03 am:

Dear Sal
A friend is someone who, knowing all your faults, still likes you. I would suggest that those you write about are not your friends as they would not treat you as they do.

You need to keep working on the pain situation and there will be something that will suit you that you can take - low dose amytriptyline (25-50mg) may be an option to try. It is an anti-depressant (but not at this low dose) but is a standard treatment for nerve pain and another sufferer wrote: "The only meds that have given me any relief are Oxycontin and Plaquanil I use Ultram 50 mgs. Ultram is Tramadol, also marketed as Tramol" - so get your doctor to explore what is out there until one works best for you.

One of the worst things a hyper mobile can do is put on excess weight because muscles have to work so much harder with excess weight. Do not do any jarring sport or exercise but resistance exercising is needed, Swimming is a best exercise for the back.

Whatever, do not go into your shell; be open about the problems and remember that even if so called friends are unhelpful the internet is a good way to meet people who do understand and are happy to discuss and share.

Best regards, Ian

By bree on Wednesday, October 23, 2002 - 07:33 pm:

I'm more than a decade older than you Sal, but boy do I have the same sort of feelings, and the same sort of responses from 'friends'. I haven't come up with any answers as yet, although I have tried the things Ian suggests. I had trouble with the amphitritpiline in particular, because it made me put on even more weight. I found the tramal much more promising, but I've heard that other people find it hard to take. It's a really individual thing, and hopefully, as Ian says, you do have a doctor who'll be willing to go through these options with you. I wish I had some ideas to help you, but I at least wanted to let you know that I know what you're feeling.

By Sharon on Thursday, October 24, 2002 - 07:27 pm:

Sal,
You need to see someone if you are depressed, as this can spiral out of control. You need better pain meds to manage you pain and you need someone to talk to who understands (I know how hard it is, I have had joint problems and pain for as long as I can remember and spent a lot of time in hosptial, on crutches and in braces so always felt a bit different to others at school as I couldn't do what they did). At 12 I dislcoated my pelvis and hips and sepnd 2+ months in hopsital dn 1 1/2 years on crutches. I was still undiagnosed at this time and told there was nothing wrong with me, it was all in my head, I had just pulled a muscle, and no have a prmanently dislocated pelvis (it can't be put back in without breaking my pelvis).
I have only been diagnosed since August 2001, and I am 31 now.

By Emily on Tuesday, December 02, 2003 - 10:10 am:

Hiya Sal! I am emily i am 16 years old and i have got HMS too, if you ever want anyone to talk to or if you ever want to email me or add me to your msn or anything please do because i would love to chat my emial is madthing2001@hotmail.com i am sending you lots of painfree hugs, loads of love form emily xxxxx p.s another good website for hms teens that i go on a lot if www.hypermobility.org/teenweb1.htm

By Natalie DeAngelo on Sunday, February 20, 2005 - 06:07 pm:

I am soo sorry to hear about ur fiend
alot of my friends dont get it either. one of them even sometimes kicks the back of my knee as a joke and laughs at me when i scream in pain and yell at her. no one really seems to get it. just think that it is prolly her loss; i am sure u are an amazing person. i only have one friend who really tries to understand and i am soo thankful. i am sorry i was not very helpful, but i hope you feel a little better very soon.
best of luck to all of you.
~Natalie