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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.

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Jimm_Alumni

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_Alumni

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.

kiwicherry8

Hi! Not sure if this is of any help but, I have got a few health problems and one is I need sticks to get around and they are painful on my wrists so, I use a Rollator. You can get indoors and outdoors ones.

Jimm_Alumni

Thank you for letting us know! My partner has EDS and she's been having more knee pain recently so we need to look into what we can get. We're thinking just knee braces for now.

tomato_soz

v-EDS here. I can't use a walking stick, it hurts my wrists too much. The OT gave me wrists splints and have expensive crutchesand sticks for around my home but outside and more than a few metres hurts a lot. I use a powerchair. It's an NHS one. They are aware I can stand and move a couple of metres but as I can't do so safely I was allowed a WCS powerchair.I've had one for 10yrs now.

Things I've bought myself:

-ring pull opener, jar opener, bottle opener - Argos have all 3 on a deal for £10 at the moment which is the cheapest I've seen.

-JML leg buddy - inflatable wedge shaped pillow for £15 or something that helps me to stop getting DVTs which is my main vascular problem

- rolling gardening stool

- various wheelchair accessories and medical alert things bought on Etsy because they look nicer than navy blue or sludge brown in millercare

Medication organisers, blood pressure monitor, pulse oxomiter etc recommended by hospital

Continence products because my bladder doesn't work properly and I frequently need to go urgently with no toilet in sight.

Things that "everyone" uses including...

a kettle with a handle at the top (like in the style of old whistling kettles) because a travel kettle is no good for us as a family but I can grip this bigger one with two hands and hold it like a bucket

Food processor left out for everything including grating cheese which kills my hands

Electric can opener

Dishwasher

Dryer

Basically lots of gadgets as I am dangerous in the kitchen

Joules ponchos for my chair because- again - they look nicer than actual wheelchair ponchos

Things provided by social services/forced my landlord to provide:

perching stool
Bed rail
Grab rails in toilet, bathroom and shower
Double French doors into my garden with level access so I can get to the car park at the back (previously only one door opened)
Air source heat pump and fully electric as I can't smell gas (no sense of smell any more)
The button for my smoke alarms is a portable handheld thing that flashes and i can turn them off or test them from sitting down. It sits in my hallway on a holder thing
Sockets at my level
Wet room at my old place but I missed baths which help with pain for me
Archimedes bath lift here but I didn't get on with that as it made a very shallow bath and I was never submerged so now my bathroom looks like one of those rotastak hamster cages with all the tubes... because there is a system of grab rails all around my bath so I can get out safely. It works for me.
Sock putter-onner thing, shoe horn
Radar key
Big handled cutlery for grip
Two handled cups
Tray on wheels

I've lived with things I find useful for so many years I'm probably forgetting lots of things! I'm always getting things that will help me more than the previous version because of how it was designed. Accidentally accessible. I think that if you contact your local adult services team they will be able to help you with a lot of things

Andi66

I've got Joint Hypermobility syndrome and copd. I find washing hair a nightmare as I can't lift my arms s up high due to shoulder and neck pain, I've got a long handle brush type for it but it's not brilliant, my knees are bad ,feet has osteoporosis and flat. Pain constantly I just on paracetamol which don't touch it, as the pain killers make me sleepy. I suffer from fatigue which is part of it and copd. Digestive problems, you name it . It's linked. Constantly coughing on a stronger steriod based inhaler for copd.