Hello I've fibromyalgia for 4 years I'm a 67 year old

[Cazruby]

Hello I've had fibromyalgia for 4 years ...my legs hurt so much I get locked knees and they get hot all legs and in so much pain soon I'll have to get a wheelchair...I applied for attendance allowance but they said no I can't even walk to the bus stop ..plus allthe other problems I have with fibroanyone else had DWP say no to them thank you 😊

[Cat00]

Yes several times. I have chronic migraines, Fibromyalgia, Bladder Pain Syndrome,IBS, bad Insomnia, Hypermobility, Pain Attack and Anxiety disorder, Social Phobia and they still said No. It seems that Disability is only reserved for the bed bound now, but I'm so grateful I'm not bedbound that I haven't attempted to fight the DWP.....

[Cazruby in reply to Cat00]

Hello kat ..I think your right..I've never asked them for anything in the past for anything ...I can't even walk to the bus stop anymore its like my legs are so stiff and every night they burn so I get no sleep ..they say I don't meet the needs .24 hour car just how ill do you need to be ..I'll need a wheelchair so disability scooter soon .do have to die first ...

[SunshineBear23 in reply to Cazruby]

so I now use a powerchair and waking frame. Part of reason you they may have said no is because you walk fast or unaided. Sadly it’s not about if you can cannot walk it’s complex it’s about if you walk with aides and how far you can walk without them. Depending on how far away your bus stop is it’s a no. This is all related to dwp mobility I’m assuming you have pip and we’re asking about the mobility element. I have been successful it challenging and claiming. It’s worth challenging them as more than 65% decisions are overturned when challenge but you have to prove you can’t walk unaided or for a certain distance it’s about HOW your disability impacts you not what your disablity is

[Pixix]

I have fibromyalgia, polymyalgia, hypermobility, Essential tremor, bad osteo arthritis, Raynaud’s phenomenon, sciatica, trochanteric bursitis & a benign spinal tumour, but haven’t ever had attendance allowance. I also had my blue badge taken off me! But I can get up, I’m not in bed all day. To be honest, those are the folk who need it, & perhaps there’s not the resources available to widen the number of people who receive it! I suspect there have been a lot more people trying to get it recently…think if all those with long Covid, maybe? I don’t know…but look how hard it is to get a doctor's appointment in many surgeries? The system isn’t working well right now!

[Cat00 in reply to Pixix]

I know what you mean, in many ways I feel if I fight the DWP I might jinx myself and end up bed bound which I know isn't logical but I just can't be jealous of people who are even worse than us.

Really people like you and Cazruby absolutely should be getting help though.

[Pixix in reply to Cat00]

no! I can’t speak for Cazruby, but there are many more disabled than I am. As a result of a medical issue I was paralysed from waist down for six weeks. We had a trial weekend at home…old cottage, wheelchair wouldn’t fit through doors, onky upstairs toilet…that’s the folk who need it imho! Plus I have a husband who is becoming good at putting my sox on! I have a friend who has free carers, but she keeps saying I need to go to bed early, the carers will be here at 9!! Or they turn up late, or not at all (not bad mgt, mainly Covid absentees). It’s not as great as it sounds, & I will fight to keep my independence! Thanks, though, that’s kind of you! If I could lose any of my diseases fibro would be the last to go as it’s the easiest to manage, & affects my daily life less than the rest. I don’t count fibro as a disability, personally!

[Cat00 in reply to Pixix]

Yup me too, my other conditions are worse than my fibro, it seems to be very individual. I have migraine over 50% of the time for the last 25+ years but if I could make a wish about which condition I could get rid of it would be my insomnia I'd vote for. Being able to choose when I could loose consciousness would be a dream, excuse the pun......

[Pixix in reply to Cat00]

oh, I’d forgotten that…I average four hours sleep a night, but it’s pain that keeps me awake, or wakes me up, so not ‘real’ insomnia! But yes, one or two luxury nights of 6, or 8 hours would be bliss! My Mum had migraines, they usually lasted 4 days. I inherited it slightly & have had about 20 in 60 years, though not all have gone through all stages! First one I was 13 & paralysed down one side & vomiting, at school, & a very worried Mum came to pick me up…until she heard about the vision problems that are always my first sign! Sympathy to you, that’s appalling!