By Samantha on Monday, October 02, 2000 - 09:58 am:

Hi!
I have been diagnosed with HMS. The pain comes and goes, but at times seems unbearable. I had to quit a job that I had held for five years and loved because it got to the point that I couldn't take the pain. I have tried to think of other jobs that I could do, but have not come up with anything yet. I was wondering if anyone had been declared disabled because of HMS. I think it has reached the point that I am going to have to consider this at least until I can get this under control. I would appreciate any info or tips anyone could offer me regarding how to go about beginning this process.

By jane on Tuesday, October 03, 2000 - 08:23 pm:

Are you in UK? If so phone the disability helpline find it in directory.It is important to do this now as your benefit will be backdated to the day you phoned for the pack & a decision can take 3 months. I am told that 95% of applicants are turned down on 1st application but you should then appeal with help of local/free law centre or phone your council to ask if they have a welfare rights advisor who can help. The forms are very depressing but hang in there & good luck.I am waiting to hear about my own claim.

By Tracy on Friday, October 06, 2000 - 03:03 pm:

HI Samantha

I have been declared as disabled with HMS and have had to fight to get any form of benefit.

Jane has given you some good advice there. One thing I would suggest is that you photocopy all your completed forms. It may cost a little but great if you have to go to an appeal because you can look over what you have put on the forms and then the info you give is always the same (just re-worded). It also help if you have to re-claim for any benefit - it just means you are being consistant and if there are any changes you can let them know. (Just don't use the same wording!!)

Be aware a lot of the questions are basically the same, so you always feel that you are repeating yourself, but that's the DSS for you!

Don't give up. It can take a long time but you will get there if you fight for it. The local Citizen Rights Bureau is always a good place to visit if you are unsure about anything.

Keep in touch and let us know how it goes.

By Samantha on Wednesday, October 18, 2000 - 07:45 pm:

Thanks for the information. I am not in the UK, I am in USA. My family Dr. has sent me to two specialists, but they don't seem to agree on much. The first one said osteoarthritis, bursitis, and hypermobility syndrome. The second one said that I was too young to have osteoarthritis, but did agree on the HMS. I am really getting discouraged. It seems like the doctors just kind of want to brush me off. Makes me wonder how to get the disabilty people to agree if I can't get the doctors to. Guess I will just have to set it in motion and see what happens from there. Thanks again!

By Deborah Gear on Tuesday, November 13, 2001 - 01:17 am:

hi!I live in Australia and have been diagnosed with Hypermobility and Fibromyalgia by 3 specialists but none of them would tell me much about about it and my doctor knowes nothing about this condition and doesn't want to treat me as he says,I have a weard and rare condition.Plus I can't seem to find a GP who knows about it and don't know how I can apply for the disability pension without a GP to support my applcation.What can I do?

By Erikamorales on Sunday, November 16, 2003 - 04:46 pm:

Samantha,
you need to see a genetic couselor for diagnosis any large hospital in your area should have one. i just recieved disability after 2 and a half years i was denied twice then finally approved.
Part of what helped my case go thru was the mental distress this condition causes. so you may also want to consider mental counseling to have your condition further doumented as to how it affects you. Good luck Erika