Ehlers Danlos Syndrome & use of aids.

trashpanda

Hello, 

 I have Ehlers danlos syndrome and have recently started using a walking stick which hurts my hand something terrible. 

 I have had a distinct lack of support surrounding it, and was wondering how everybody manages their condition themselves, including the timing and use of aids. Have you paid for aids privately? 

 I have so many questions, sorry. I just simply don't know anyone else that has it. 

Jimm_Scope

trashpanda said:

Hello, 

 I have Ehlers danlos syndrome and have recently started using a walking stick which hurts my hand something terrible. 

 I have had a distinct lack of support surrounding it, and was wondering how everybody manages their condition themselves, including the timing and use of aids. Have you paid for aids privately? 

 I have so many questions, sorry. I just simply don't know anyone else that has it. 

Hi @trashpanda! I don't have EDS, but I know 2 people very close to me who do. I know they've used wrist and ankle supports before. Is it perhaps the type of walking stick that is the issue? There may be another design that is easier to use or better supports you?

I will ask both of them if they have any other aids at all  

trashpanda

@Jimm_Scope

 amazing thank you! that would be appreciated. 

 I am beginning to worry if i have underlying issue causing it hoping rheumatology can provide some answers for me as its getting expensive trying different sticks. 

Hyacinth64

Hi @trashpanda, I also have EDS, and it took several months before I could comfortably use a walking stick. The pain in my hand and wrist was very bad. I bought a wrist support online and I  think my medication helped . My physiotherapist adjusted the height of the stick, which also helped. The walking stick cost £14.99 from Argos so not expensive. 
For me it was a matter of trial and error and perseverance. I hope you can get to a point where you are comfortable using any aids that helps you. 

Albus_Scope

Heya @Hyacinth64, welcome to the community.

I definitely agree, changing the height of the walking stick really can make a world of difference to pain levels, especially with prolonged use.  I found a normal crutch to be more comfortable, but not as snazzy looking. 

chiarieds

Hi @trashpanda - I also have hEDS, & probably was a danger to myself, & anyone else nearby, especially on the cobbles in my nearby town, when I tried using a stick! I find a pair of crutches far easier. With either a stick, or crutches, it is essential to make sure they are of the right height. If you get them through the NHS a physio will make sure of this, & you'll be able to find the kind that suits you.

Otherwise I'd recommend looking at some of the adjustable height sticks with different handles here: https://www.completecareshop.co.uk/mobility-aids/walking-aids/walking-sticks-canes

Many of their products are recommended by Occupational therapists, & you can get VAT relief due to having a disability.