Working and Fibromyalgia - do I qualify for benefit?

tobykim

No worries re the rant I know how you feel, mine is the same, although a bit better now that I nearly get a proper sleep at night and I think sorting out the thyroid problem has helped.
Now I have the problem of sciatica it seems to be one thing after another

shays_mum

I have been told by my physio i can't use a stick as this will de-condition my upper body muscles, also should i dislocate my elbows/hands/wrists the crash coming to the ground will hurt alot more as i have become reliant on the stick!!
Incidentally i was turned down by the dla ironically for NOT using aids, what a joke - seems like you can't win either way.
Is anybody else with EDS3 using any aids at all?!
Thanks x

ash4becks

shays_mum wrote: »

I have been told by my physio i can't use a stick as this will de-condition my upper body muscles, also should i dislocate my elbows/hands/wrists the crash coming to the ground will hurt alot more as i have become reliant on the stick!!
Incidentally i was turned down by the dla ironically for NOT using aids, what a joke - seems like you can't win either way.
Is anybody else with EDS3 using any aids at all?!
Thanks x

dla talk out of there a*s 90% of the time i swaer hope the appeal works as for the physio i could agree if she said that about a wheelchair full time, i always say do whats best for me if it helps afterall its you with the problems not them :mad: i no triania uses a stick , atm iam just hms but iam geting tempted to though

Indie_Kid

shays_mum wrote: »

Incidentally i was turned down by the dla ironically for NOT using aids, what a joke - seems like you can't win either way.

You can't be forced to use aids. No aids I use (I have a completely different condition, btw) will replace the need for help from another person. You need to explain this and why. IE - "if I use a stick, I risk my wrists / elbows / etc. dislocating because.... If I dislocate my joints, I may cause severe damage to my body because of the falling."

shays_mum

ash4becks wrote: »

dla talk out of there a*s 90% of the time i swaer hope the appeal works as for the physio i could agree if she said that about a wheelchair full time, i always say do whats best for me if it helps afterall its you with the problems not them :mad: i no triania uses a stick , atm iam just hms but iam geting tempted to though

I agree they do talk c***, i mean i have a genetic muscle disorder that effects all my joints, there is no cure & no magic pill to stop/lesson the pain to an extent that i can forget about it , yet i am still having to justify myself!

I know you have to do what's best for you, but i do feel the physio is trying to do the best for me, if you can't rely on atleast one of our 'advisor's' then there's no point going to the appointments & wasting nhs resources! & i know that none of us here are doing that x

Sh1305 your right, sometimes you can't see the wood for the trees , i am still living in a brain fog at the mo, its most disconcerting to read back text/posts etc i have written to make no sense at all . Having to re-check everything i write, not remembering the conversations i have had & calling people i have known all my life by other names is tiring in itself!!

Trialia

shays_mum wrote: »

I have been told by my physio i can't use a stick as this will de-condition my upper body muscles, also should i dislocate my elbows/hands/wrists the crash coming to the ground will hurt alot more as i have become reliant on the stick!!
Incidentally i was turned down by the dla ironically for NOT using aids, what a joke - seems like you can't win either way.
Is anybody else with EDS3 using any aids at all?!
Thanks x

I have EDS hypermobility and I do use a walking stick. It took a while to get used to, but now that I have, I find it's actually helping to condition the muscles of the arm with which I normally use it, to the point where my right shoulder is not dislocating as easily as it used to. So your physio may well be talking out of hir you-know-what...

The being turned down part is... interesting. I wasn't using any aids when I first applied for DLA, and I wasn't turned down. I've only had my walking stick for about the last 18 months. But I also have secondary fibromyalgia and a mental illness, so that may be why...

shays_mum

Lol Trialia, this is what i mean, one person says one things,another something else i am sure i am not the only one confused!
Yer i got the FM as well, being tested for pots soon.....!
Is it a normal stick or one of those adapted ones?
Thanks x

Trialia

shays_mum wrote: »

Lol Trialia, this is what i mean, one person says one things,another something else i am sure i am not the only one confused!
Yer i got the FM as well, being tested for pots soon.....!
Is it a normal stick or one of those adapted ones?
Thanks x

Adjustable folding metal one; I have it set as far extended as it will go, which is 34 inches or so (my legs are 31in, so that works well for me).

And yep. Don't I know it... *sigh* I wish they'd come to a consensus on the subject.

I have my first appointment with the physio at my (newish) GP's surgery next Wednesday; no idea if she knows anything about hypermobility or not, and neither did my GP, so I guess it's trying her out.

shays_mum

Cool x, hope your physio goes well hun, been going since May & it makes me think about how i use my body & the damage i could do if it don't shape up fast!!, give it a go, you never know - you might find an 'enlightened one' x

ash4becks

shays_mum wrote: »

Cool x, hope your physio goes well hun, been going since May & it makes me think about how i use my body & the damage i could do if it don't shape up fast!!, give it a go, you never know - you might find an 'enlightened one' x

girls i have a appointment with a physio that knows his stuff about hms/eds etc he deals with people with it all the time up newcastle way do you want me to ask when iam up there but dont no when that will be see what he says