Has anyone read the article in last weeks pick me up magazine?
I have also been diagnosed with hyparmobility syndrome and have been graded at a level 9 using the Brighton scale, can anyone match that? Please talk to me, it would be so nice to hear from someone who knows what im going through and to share experiences with.
hi sara hope you are ok.thanks for the replay so what grade are you if you hypermobility.I have a lot of joints that paly me up.and most of the time iam in a weelchair.but i have find this site really helpful.x.x.
I score 9/9 on the beighton score when I was diagnosed I also now have been diagnosed with Fibromyalgia last month, Raynauds, suffer with severe lower back pain constantly, Restless legs syndrome, diagnosed with Dyspraxia as age 5 and also have an auto immune disease laying dormant for the time being.
I lost my job due to my health deteriorating and have to use crutches to aid with walking and supporting me also have to use a wheelchair or mobility scooter if and when I go out. I am on alot of painkillers and have tried numerous injections in the spine and muscles all of which haven't worked.
I am now waiting to go to London.
I have alot of aids including thicker handled cutlery, electric bed, stairlift, mobility scooters, wheelchair, toilet seats, steering knob on the car and an electric bath seat.
I am constantly exhausted everyday and suffer with muscles aches and pains due to the Fibro. I also have support from an OT who has been really good and helped with giving me things like wrist, thumb supports, resting splints she is getting me other loo stuff.
I have tried and still under a physio not that it helps at all and still feeling broken from last weeks physio.
When were you diagnosed with Hypermobility Syndrome?
Another good site is the hypermobility syndrome association which also has a forum I am on that too.
It is nice to talk to others who are going through the same.
Sarah x
Dyspraxia Diagonsed age 5, Hypermobility Sydrome Diagnosed December 1999, Unknown Auto-immune Diease September 2007
hi sarah thank you for reply i was told i had the conditon about 2 yrs ago i am under rodney graham in london we dont find him very helpful coz i am graged at 9 and he is still learning about the conditon i have sublactions with 9 jonits on each hand my knees and ankles wrist toes and jaw i dont have any back pain like you beeen told they wont operate on me unless it is life threating i am full splited dueing day time hours i am totaly depend on wheelchaire when i am out
i live with my parents who do a lot for me i also get direct payments which i use to pay for a pa who has beeen trained to deal with putting my jonits back in as i cannot do all of them myself the rest of my care mt parents provided i have a 24 and consent care plan set up for me this does help to give my mum and dad a break i would like to keep in touch with you as i think we may have some of the same problems maybe we could exchang phone numbers maybe we could meet at some point
Hi Jodie no worris anytime. Prof G he is one fo the top professors in london there's still probably things he is learning though. Gosh thats alot of joints subluxing daily. I don't get many only occassionally. Thats the thing with hms because of the healing issues the risk of operating and scar tissue etc it is more risky and things like sedation and Local Anesthetics don't always work. I tii spend my days fully splinted during day time hours and have resting splints for wrists and hands for nightime.
Am due to see the Prof sometime next month. Thats good having a PA who has been trained to put things back in joint. I get DLA and incapacity due to not being able to work. The dla has been been a godsend.
Aww me too would love to keep in touch you can always email me too I have msn will email you my email address and phone number as not sure whether things like that can be put on the public board. Would definatly like to meet at some point.
Last edited by sarahh on Thu Jul 17, 2008 11:07 pm, edited 1 time in total.
Dyspraxia Diagonsed age 5, Hypermobility Sydrome Diagnosed December 1999, Unknown Auto-immune Diease September 2007
I have loose liagments and have had a lot of problems with my joints. Now I see a good sports physician in Melbourne that has helped me a lot. Rather than seeing a rheumotologist I would see a good sports physician/doctor. There is a great sports medicine clinic in London called Pure Sports Medicine. Their website address is www.puresportsmed.com
The thing I have learnt with being hypermobile and having loose ligaments is that it's important to do regular exercise. For me, going to the hydro pool, clinical pilates and a regular gym program have been a god send. In the end I needed surgery on both shoulders, knees and my left ankle. It has definitely helped a lot.
I share you pain and know what it's like living with this condition every day. One day I hope to write a book. Next year I am hoping to do a clinical pilates course and want to include some of those exercises in my book.
11/1996 - RK LR
07/1997 - LK LR
11/1998 - LK MPFL Reco
12/2005 - RK LR Repair
07/2006 - LK MPFL Repair
11/2006 - LK LR Repair
22/05/08 - LK Trochleoplasty
11/02/10 - RK Trochleoplasty
07/03/11 - RK Chrondroplasty
hi kjwilkin. hope you are ok i just like to thank you for tha website address,I thing it is a really good idea about doing you own book.how long have you had the hypermobility it is really nice to chat if you. Hope chat again.
