What constitutes a permanent disability......? Apparently I don't have one despite having been diagnised since 99......so its obviously not a time thing. Theres no cure.....so its obviously not that they are expecting me to recover. So is it because this is an intermittant condition?
I applied for a Disability Registration card from my county council. They have written back to say my GP advises I do not have a permanent disability and therefore don't qualify.
My diagnosis has been verified by an ME clinic and the Fibro was diagnosed by a neurologist. I also have cervical spondylosis, which a car crash doctor said was severe, but GP's call wear and tear.
My GP allowed me to have a disabled car blue badge, so I really don't understand.
Stepper
16 Replies
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You can't register anymore as being disabled, our Government in there
Wisdom said it was not needed.
They are short of lots of money as more people are claiming disability and
The government has not allowed enough that's why so many people are being
Turned down.
If you read the equity and human right act which if you are interested its on my
Blog or question that I put last week, I found them very helpful and it's a free
Number they will explain to you, I believe a disability is some one who has been
In constant pain for over a year.
They are very helpful, for you I think you are unlucky try again and again it's all
To do with money although I doubt they would tell you that, just keep trying. They
Will get there new budget again in April so will have more money to spend.
I know what you are thinking disgusting I agree with you. I know there are lots of
People who are very disabled and are not getting money for care.
thanks for the information regarding the equilty and human rights act which i did not know about, will have a look at your blog later as having a really bad day today
It wasn't this government that scrapped being registered disabled. I worked as an advocate in 2005 the registration of disabled people had already been disbanded.
I was under the impression at that time that the disability rights movement had lobbied for it as they felt they should not be registered. Many local authorities stopped this but only a few councils still do today.
I am one of the lucky ones who gets dla but NOT for my fibro they give it me for my arthritis.. So in my experience arthritis is a permenant disability fibro is not ....although we all know differently
Well the NHS consider fibro as a disability ,, so what's going on . If I don't get the right answer first time found I allways push again, Ive become unpopular because of this, but I would try again , can you put a letter in writing ,, you have a good argument .
I get DLA ! Lowest rate but get it. Expecting to lose it when PIP comes in.....then I can't afford my monthly treatment.....
sometimes i think it is who we see and how they see it as.
they are clamping down so much as more and more are claiming disability!
i have other conditon so not sure yet as far as Social services and Blue badge were concerned when i went and told them my health issues they instantly were telling me about adaptions etc when i need them (so to me means i wil be needing them and its permanent) not 'if' you need which is what i put to them they instinctively said to me no! when you need them these are numbers you need.. yet on decent days its a guilty feeling as you think hmm do i really.. but yes because it is soon as doing things provoke things..
there are certain conditons classed as permanent but fibro to many is contraversial (am i rite saying that ) not quite sure .
I have BHMS/EDS type 3 plus cervical cord root compression and told nothing can do as one the 1st is what i was born with and i feel blessed i got this far without much requirements of disability aids but now i do !
i think we have to fight together to prove what the conditions do to us all. ..think they need to read these sights alone to see the publics daily struggles !!!!!
FMS is not a condition that should limit your capacity to undertake work in some form therefore will not qualify you for DLA. Arthritis is also not necessarily a condition that limits your capacity to work as the majority of the time it can be effectively managed. This is why the government are changing what qualifies for benefits.
Oh really? I haven't been able to work since 2006. I've tried to ho back a couple of times but only last a couple of months and crash. Post exertional malaise finishes me off.
I'm sorry to hear you have struggled to return to work. The focus of my comment should be "some form" of work. That is to say work in a different capacity or role with variable or reduced hours and also a structured lifestyle management and exercise programme. The challenge is of course finding a role that can accommodate this flexibility and I understand that in the real world this is not always possible. However from a purely medical view point for those diagnosed with FMS continuing with appropriate work/employment is encouraged. The malaise you describe is not a symptom normally associated purely with FMS but more with ME or CFS for which the advice/management would be different.
Hope this helps clarify my comment, I didn't mean any offence.
Slightly confused by the comment re. malaise post-exertion, as most people on here seem to experience malaise or extreme fatigue after exertion. I certainly do! I'm one of the lucky ones who is still managing a full-time job, although I must admit to wondering sometimes how well I am coping, when I often have to take a nap in my lunchbreak. I think it's the nature of this condition, and the many co-morbidities that seem to often occur alongside it, that some people will find themselves more badly affected than others, and that some will find that the condition progresses, whilst others will remain static.
There is an acknowledgement in the Equality Act 2010 that fibromyalgia is a long-term chronic condition that may classify a person as having a disability, and certainly some people on this site would not be able to return to work in any form, much as they would like to. xx
I have read the Equality Act which seems to lump FMS in with several other condition, which I don't agree with and is a poor way to develop effect management. The malaise and chronic fatigue you describe as I mentioned is more associated with ME and CFS as I mentioned, conditions with which I am not as familiar.
I think the point I am trying to promote is being specific about what FMS is as a medical physiological diagnosis. In terms of the physiological changes associated with FMS they should not limit an individuals potential to undertake some form of work as changes do not cause permanant structural changes with the mechanics of the musculoskeletal system but instead are changes in neural sensitivity that can be modulated by the correct stimulus; I do not mean that everyone should hold down a full time job, or be able to work regardless of their current symptoms but instead take a positive view that working in some capacity will help both physical fitness and mental wellbeing (this could even be such a temporary or voluntry work as symptoms allow).
My Rheumatologist has stated that I will not be able to work in any capacity due to both physical and issues of forgetfulness , speak problems etc . I have been assessed by the brain injury clinic who agree with the rheumatologist. I cannot see how anyone can say that people with fibromyalgia could work in any capacity as this horrid condition leaves you never knowing how bad your symptoms are from one hour to the next. After 40 years in public service I know I've done my bit.
Lol no offence taken at all.... X
Yes I have cfs as well
Got an app. With the go next tues. We'll see what she says x
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Adult disability Scotland 
FIBROMYALGIA IS PERMANENT ??? ISN'T IT ???????
Permanent
fibro Vs disability
