By Sally on Wednesday, December 04, 2002 - 05:00 am:

Hi, I'm new to this group but I am glad I found you. I find it so frustrating that peolpe around me do not understand what I am going through - no matter how hard they try. The pain I have learnt to cope with most of the time (I was diagnosed at 9 so have had 14 years of practice)but it's the restrictions to life that really get me depressed - the pain then feeds the depression and its a never ending circle. I would love one day to be able to dry my hair without the weight of the haridryer pulling on my wrists, or to sit down and write a long letter without having to stop for rests every other line, to walk the street without falling over, ride horses again, and to have one nights uninterupted sleep. I know that you all must feel the same as me, and it is not sympathy I am after - it's understanding. Thank you for taking the time to read this, I wish you all the best and a pain free life (what bliss that would be...)

By Ian on Friday, December 06, 2002 - 09:28 am:

Hello Sally

A person with hyper mobile joints looks the same as others so there is often little understanding of their problems by others including uneducated doctors.

By sharing information there may be some help getting experience from others. This may be through a change in pain medication that has been good for others or support items for tired joints - for example there are elastic support items for almost every joint in the body that many have found successful.

And, of course, simply having another contact to exchange views with means that you are not alone with the problem. Best regards, Ian

By Roxanne on Thursday, April 29, 2004 - 07:57 pm:

Yes,I to am sick of pain and it seems like know one understands.I sometimes just sit and cry.I was diagnosed when I was 25 and on several pain medications.I live in a small town and seems know has heard of it not even my physical therapist at the time that I could afford to go to her,which I might add didn't seem to help.I was have stiffness around my shoulder blades alond with burning it felt like the muscles tightened up but wouldn't loosen unfornutely my husband and I got divorced 2 yrs.ago so there wetn my insurance and I was forced to work full time and take care of my daughter.I am a cashier at a gas station and within these two yrs.My spine has developed a very tender spot I scream or cry if any one just bumps it,my lower back now constantly feels stiff and my hip is totally messed up to. It has even went into my lower arms and hands which makes it difficult to type or write.Yeah I to am sick of living with the pain.I am now going on 32 with a 14yr.old and I feel bad that I am know longer the mother I once was.I am depressed and extremally sad all the time.I constantly am in pain if it's not one spot it's another or all and I am very tired all the time.I just want some help which I am working on now and hope to get some relief soon.

By Susan on Thursday, February 17, 2005 - 10:49 am:

Hi Sally, Ian and Roxanne, I understand exactly what you're saying. I have hypermobility syndrome, I'm 41 but feel 81, I'm in a lot of pain everywhere most of the time, some bits worse than others on different days, and absolutely knackered constantly,if I've been working (as a Secretary, typing for more than a few minutes is hell) I can't do the housework, or visa versa. My husband and kids try to help but I just feel as if I'm moaning all the time when I ask for help, I should be able to do it myself. I came to the descision that I don't want to go on long term sick leave, I had to try to find a job I can do until I can retire. But with upper body problems and previous lower back surgery, followed by arthritis, that has proved very difficult. I've just started a further education teacher training course, Life's manic at the minute with work, college, the kids, the husband, the house, but hopefully when I'm doing something that does not involve much physical exertion I'll feel better. I can only hope!!!!