By Karin on Saturday, March 03, 2001 - 01:53 pm:

My name is Karin and I do suffer from hypermobility.I'm quite sure my story sounds very similar to alot of people reading this site.
So many of the messages I've just read discribe
ME!
I'm 45 years old and only after my last severe seperation (scapula from T-spine and posterior ribs) did anyone mention the word hypermobility.
Is the medical community clueless????
More importantly for me at this time is...Are the people that determine eligability for social security disability also clueless? I have a hearing this week and I'm afraid I'll be denied again.
I would like to download some detailed info re:
this condition of ours .Any site suggestions?
I'm new at this computer stuff
Feel free to e-mail me
Those of a feather SHOULD stick together
Karin

By Karin on Saturday, March 03, 2001 - 02:00 pm:

Hi Again!
After all that typing (with 3 recently dislocated fingers)EEEEEk
I forgot to leave my address
DrDuck@plateautel.net
P.s. I like Humor (we all need it)

By Rick Spear on Saturday, March 03, 2001 - 07:01 pm:

Hello Karin my name is Rick and I have EDS Type 3 I am very hypermobile and have some other problems related I would sudjest going to the EDNF Site at ednf.org it is a very informative site it should help. Humor is a good thing to have with this disorder hope this helps.
Have a good evening.
Rick Spear

By Beth on Sunday, March 04, 2001 - 06:07 am:

Hey, if you figure out how to convince them how debilitating this can be let me know. I gave up after a year and 3 turn downs.

I am currently trying a Vocrehab thing and if they can't place me in a job I plan on trying again with a letter from them

Hugs
Beth

By Karin on Sunday, March 04, 2001 - 10:28 am:

Hello to all
Thank You fot the info. I'm sure it will be of
some help when I run the S.S. gauntlet once again.
I've also been denied 3 times.Chronic pain does
not seem to be enough reason to be unemployed.
This time around I'm I'm gathering more arguments.
If I were to be honest(which I am)no one will hire
me.No one wants Workemans comp.problems Right away?
Then theres the question of being on the job while
takeing pain meds.I try to take as little as possible but records show a prescription each
month for two years.I was discharged from P.T.
because no more could be done for me and Voc-Rehab
did'nt even try to place me.I't probably won't
hurt that I am also sporting one new fracture
and one new dislocation for this hearing.
There are lots of other things I hope will work in my favor but at times it seems as if a person needs to be stone cold or in a coma to win with S.S.
If things work for me I'd be happy to relay the reasons why. The Why not If I lose may also be helpful.Wish me luck
God Bless
Karin

By Gwen on Sunday, March 04, 2001 - 11:27 am:

As far as I understand it, hypermobility of itself isn't a disability. If this were the case hundreds of thousands of athletes and gymnasts would be considered to have a disability. Did any of you notice the degree of flexibility of the gymnasts and one of the dutch women swimmers at the Sydney Olympics. They are all far more hypermobile than I am yet I doubt any of them would consider it a problem.

I was discussing this with my musculo-skeletal specialist. He said that the difference lies in a number of factors. Their hypermobility is a trained one. They have normal collagen so therefore still have the elasticity in their ligaments which enables them to spring back and retain joints in place. Also, and to my mind most importantly, their hypermobility does not cause them pain and is not allied with all the other symptoms such as irritable bowel, depression etc.

I don't know where you are Karin, but here in New Zealand employers have to have a certain ratio of disabled emplyees to able bodied ones. Although I didn't get my job under that clause my employers are aware that I have a chronic disorder and may not always be able to come to work. On the whole they have been pretty good about it even though I sometimes give very short notice because the pain has come on rapidly. Equally, there have been times I've phoned in sick and the pain has gone within an hour or so of putting down the phone but that seems to be the nature of the beast.

Have you considered consulting a lawyer about your S.S. hearing? Pick one who is used to doing appeals and is aware of the psyche of government departments. Do you know what is the relevant legislation that covers the department with which you are dealing. It really does help to be conversant with it and be able to quote chapter and verse when making an appeal.
Very best wishes.

By Karin on Thursday, March 08, 2001 - 06:24 pm:

I'm still not sure how to work this Bboard
Having much trouble (perhaps my server in the hinterland )
Thanks to you all for the info and opening my eyes.
I'm quite sure my S.S. hearing went well.
I'll let you know
I have gotten the answer from all you good people
Re; my original question.(is hypermobility a disability?) I now feel No ...But the consequences
without knowledge can and is disabiling for me.
Please excuse my english It is my second language.
Take care
Karin

By mandy on Wednesday, March 14, 2001 - 11:37 am:

hi karin, i have suffered for some time know. i am 29 and have suffered for 11 years. keep pushing your doctors see if you can go to a pain managment clinic. i am starting one soon also keep pushing for diability allowance i go tomorrow for a appeal keep fingers crossed i get it, i did last time. hope this helps mandy.

By Patrina on Friday, March 16, 2001 - 08:50 pm:

Hi,

Karin, I along with the others will look forward to hearing about your SS results. With all you've been through, and your persistent pain, you should be getting benefits for sure! Are you handling all this yourself, or using a 'specialist' lawyer?

Mandy, hope for the best for you too.

I finally had to give up working (gradually, over the last year & a half; guess I'm stubborn), and applied for SS not long ago. I just had a call (while I was out, wouldn't you know it . . . ) from my attorney & of course by the time I got home their office was closed for the weekend. Sigh . . . patience is not one of my strengths, but I'm practicing.

I recently saw an article that applies to this; I'll see if I can find it & I'll post again with the web link.
Best to everyone, Patrina

By Patrina on Friday, March 16, 2001 - 09:00 pm:

Hi,
Here's the website; it's from the fibro/cfs site on about.com. There are also useful articles on immunesupport.com (fibro).

This particular article starts getting worthwhile at #2 where the author starts discussing chronic pain as related to disability. Hope it helps.

http://chronicfatigue.about.com/health/chronicfatigue/library/uc/uc_sdavispain.htm

By mandy on Saturday, March 17, 2001 - 10:50 am:

hi its mandy i did not get disability all this time but i am going to appeal as they are amitting they dont beleive us.

By Sheryl on Tuesday, May 15, 2001 - 02:29 pm:

Hello my name is Sheryl i'm 28 years old I have ben suffering with hypermobile joints and liguament laxticity since I was born although it didn't start getting painfull or a problem for me until I was 14 my legs would start to give way I would have a dull ache in my joints all the time and have to wear supports everywhere. My doctor at the time said I had growing pains and kept with that diagnoses for many years. When I had my daughter at age 18 I had very painful hips and back aswell as all other joints. It wasn't until my daughter ( who has also been diagnosed with this condition ) was a little older I showed my mum what my hips did they dislocated at the slightest movement this meant even walking. This became a big problem for me as i was a very active person, I did all sports including gymnastics and mostly trampolining which my doctor told me would not harm my joints boy were they wrong. I went to see a doctor again who sent me to physio this was not a sucess it made me considerably worse and in a lot more pain eventually after many different types of physio I was diagnosed at the age of 21 I had already been using crutches for 4 years and was now having to use a wheelchair also. I now live on painkillers 5 different types everyday just to ahave a level of pain that is still not always copable with but I have come to the conclusion that as there is no cure theres no sence dwelling and get as best I can. After reading most of these messages I feel I am quite lucky regarding the dss I have been awarded DLA for the past 6 years although 5 years ago I had to go to a tribunal and again as it is due for renewal they are sending out a doctor again to examine me but this is what caused the problem with a year long fight last time unfortunatly this condition is still not widely known about and these assesors at the benefits office do not know what this condition is and in my case it is very disabling I have gone on long enough but obviously there is loads to say. I am actually after some written info on this condition I did have a booklet that I picked up from the hospital but I lent it out and didn't get it back and I think if I had this and sent it to the dss it might help my case when they decide my awardment this time. feel free to email me at address below with any info thanks

By Sheryl on Tuesday, May 15, 2001 - 02:31 pm:

I didn't put my email address at bottom so here it is sheryl.ian@casie.fslife.co.uk

By Beverly on Thursday, May 31, 2001 - 06:59 pm:

Hi,

My name is Beverly, age 30, and I'm had problems with hypermobility all of my life. As a child (and to this day) I walked funny (very pigeon toed) because of my hips. As a teenager I experienced severe back pain. I joined the US Army at age 18, unknowing that I was hypermobile and suffered from spinal bifida. I immediately experiences problems. I was deployed to the Persian Gulf War and continued to serve my country (in severe pain) for eight years. I can't possible describe the phenomena I physically endured: eyes (Adies symdrome, photosynthesitivity), TMJ, migranes, sublaxations, muscles spasms, numbness, nerve pain, sacrolitis, IBS, hyperpigmentation, undiagosed this and that.... It has been quite rewarding to review this site and see that others out there share the same symptoms as me. The Army was horrible at caring for my problems, especially the doctors. I'm more emotional scarred from dealing with them than my pain. Any way, the point of this is to discuss disability. The Veteran's Administration gave me disability based on each individual problem. For example, sublaxation of shoulders and petalla femoral syndrome. I'm currently rated at 50%. It could probably be higher, my back is worsening and I'm probably developing arthritis in my hands and feet. But emotionally I'm not ready to deal with it. Being a Gulf War vet adds additional stresses to the situation. Back to topic- I strongly suggest to those that are seeking disability compensation to consider the individual problems instead of the whole condition. If a person who was not hypermobile was injured and developed a sublaxed joint, they would receive compensation based on that injury. Why are we any different? Yes I agree we are but the medical community has thus far failed to adequately acccunt for, diagnose, and treat persons with HMS. That's there fault not yours! If you would like to contact me, my email is marbi2001@yahoo.com. Please put something about HMS in the subject line or I will delete it! Thanks.

By Robyn on Wednesday, June 06, 2001 - 07:34 am:

Reading everyone's messages make me feel like I've got it easy. Maybe, as someone was saying in another topic, the weather in Western Australia is warm enough to ease the worst of the pain. But that would be no explanation for the few separations and dislocations I've experienced. I'm currently on a Disability Support Pension, but the approval was probably more due to depression than HMS, even though, when I come up for review in a couple of months, it will be the HMS that will be the main reason for claiming DSP. But what if the Disability Officer or the Medical Examiner know nothing about HMS? Should I take along printouts from web-sites (even though some of them have disappeared - has anyone got any site addresses they can give me), or will they feel like their toes are being stepped on? Maybe I should wait until they reject my application before showing the information to the appeals officer.
I feel like HMS is a disability, because lately I've missed so much school and voluntary work, either due to the pain or the drowsiness from the painkillers.
Once again, any informative HMS sites will be appreciated.
My email is robynljennings@hotmail.com - PLEASE MENTION "HMS" IN THE SUBJECT LINE SO I DON'T DELETE IT.
Many thanks