As A Result Of Your Fibromyalgia; Wha... - Fibromyalgia Acti...
As A Result Of Your Fibromyalgia; What Benefits & Services Have You Been Able To Access / Qualified For? Multiple Choices Poll.
TheAuthor503 VotersPlease select all that apply:
I have at this time been given a few weeks of ''Intermediate Care'' as I have been quite unwell and cannot really do all the things that I use to do to look after my wife. We have been assessed by both Social Services and the NHS and have been told they they are going to try and ascertain both a Personal Health Budget & A Personal Social Care & Support Budget to help us both live more independently and with dignity.
All my hopes and dreams for everyone
Ken x x
So sorry to hear you have been unwell. I hope both assessments result in you both getting the extra financial support to provide you and your wife with the means to live your daily lives as fully independent and comfortable as is possible. Age UK helped me to receive Attendance Allowance which has helped greatly. Thank you for all your hard work on this site and I wish you and your family all you would wish yourselves. best regards Sheila xxx
Yes Ken I wish you and your wife get all the help that is available. I received low rate Attendance Allowance which is a huge help towards my fibromyalgia needs.
Hi Joyia
Thank you so much for your kind words and sentiment, it is genuinely appreciated. I am delighted that you have received some financial help as it can help tremendously if you are feeling unwell. I want to genuinely wish you all the best of luck, and please take care of yourself.
All my hopes and dreams for you
Ken
Hi 41145
Thank you so much for your kind words and sentiment, it is genuinely appreciated. I am sincerely delighted to read that you have received some care also, it can be such a blessing if you are not feeling too well. I want to genuinely wish you all the best of luck, and please take care of yourself.
All my hopes and dreams for you
Ken x
So sorry to hear that Ken, i hope they manage to sort something out soon, praying for a speedy recovery xx
So sorry to hear that Ken. But I'm glad you are getting some help with it. Well done you for continuing all your wonderful support here on HU even when things are not going well for you.
HOWEVER, please make sure you don't overdo things though. The last thing any of us would want is for anyone else to make themselves even worse than they are by trying to help others.
Gentle healing hugs to you and yours. Margaret.xx
Hello Ken
I agree. You are very kind .
You have brightened up my day on many occasions and one knows that you never make anyone feel worse.
God bless you both.
Gentle hugs .
xx
Hi ukmsmi4
Thank you so much for your kind words and sentiment, it is genuinely appreciated. The care package that we are receiving has been such a tremendous help to us both, I do not think I would have coped without it.
I want to sincerely wish you all the best of luck and please take care of yourself.
All my hopes and dreams for you
Ken x
So sorry to hear you've been unwell, Ken, but pleased that you are getting the help you deserve. Take care of yourself.
I'm so sorry to hear that Ken. It can't be easy for either of you to accept but like you said it will help you both to live more independently and with dignity.
You still manage to help so many on this forum with your wise words and kind thoughts, that is inspirational.
My thoughts are with you both as you go through this tricky time ☺️🐸
Hi Ken
I'm very sorry to hear that you've been off and not well. You and your wife have a lot to cope with, my heart goes out to you both.
I hope things go well for you, my thoughts and best wishes are with you.
Take care.
Hi Fibropop
Thank you so much for your kind words and sentiment, it is genuinely appreciated. I want to sincerely wish you all the best of luck and please take care of yourself.
All my hopes and dreams for you
Ken
You have always sounded very knowledgable about issues affecting disabled people especially those with fibro/cfs/ME. I have been lucky enough to gain the help of a Welfare Rights officer who has fought against repaying tax Credits and won, who has help me complete forms for ESA and more recently for PIP and Housing benefit. I have another apt with her in 2 weeks as Housing have sent the most intrusive demands on my sons finances (just because he still lives with me at age 35). I was successful on ESA very quickly although I do have to go for a medical assessment in 3 weeks time.. Maybe you can find a welfare right officer who will do a home visit;I know mine has offered if I am not well enough to go to her office.. Good Luck with your fight for justice. Not sure how far you are from Manchester but they have a wonderful centre in the Royal Infirmary for people like us, maybe get second opinions on your illnesses and how they affect your daily life, I did and have moved on to getting help and treatments MUCH better. Bless you for all your help Ken. xx
Hi caz-54
Thank you so much for your kind words and sentiment, it is genuinely appreciated. We live in Derby, but we do have a wonderful OT who has been sorting everything out for us. She has now passed this on to the carers Association who paid us a home visit. We now have loads of help and will be getting a visit from Social Services and then they will help look at our finances.
I am so genuinely sorry to read that they have been prying so deeply into your sons situation? It does not seem relevant to me as he should not be expected to support you to save paying out benefits? However, I am delighted that you have been getting some great help and I sincerely hope that this continues for you.
I want to sincerely wish you all the best of luck and please take care of yourself.
All my hopes and dreams for you
Ken x
Sorry to hear about your health issues Ken. I do hope the help you get will make things much easier for you both. MariLiz 🙂
Sorry you have been so unwell Ken and you are such an inspiration, looking after your wife who is also unwell. I don't know how you do it I have a job to look after myself some days.
I used to work looking after people with serious health probs so I know how hard this would have been for you
It's fantastic news that you have got someone to help you now and can have a well earned rest ☺
If you are given the money to do this it is good idea to find and employ someone yourself, so you meet them and interview them and get the right person for the job. Let us know how it goes.
I really hope you get it all sorted & sending you cyber hugs
Luv Jan
Thank you so much for your kind words and sentiment, it is genuinely appreciated. Thank you for the advice, it is what the OT suggested also, so it is fingers crossed that we are successful. I want to sincerely wish you all the best of luck and please take care of yourself.
All my hopes and dreams for you
Ken
Oh Ken, I'm really sorry u av bn unwell, I hope ur on the mend now, & I really hope u & ur wife get all the help u need.I really do appreciate all the work u do ere on HU, I don't no were we all would b with out u, u do a great job, Thanks 4 that. Please try & not 2 over do things, as u need 2 stay as well as possible. Gentle Hugs.x.
So sorry you've been unwell. Wishing you a speedy recovery. 💯💊🍎
Hope the assessments prove positive for both you and your wife Ken. Very best wishes to you both, Pat
So sorry to hear you have been unwell. I hope that with the help you have been given things become easier for you and Julie. I wish you both well. I don't come on here much at the moment as I have had several viruses one after the other and have been left with awful vertigo but I try to keep up with things as much as possible. Gentle hugs and good wishes Joolz.x
Hi hebden
I am so genuinely sorry to read that you have been unwell, and I sincerely hope that you feel better soon my friend.
Thank you so much for your kind words and sentiment, it is genuinely appreciated. I want to sincerely wish you all the best of luck and please take care of yourself.
All my hopes and dreams for you
Ken x
I wish you a speedy recovery and you get the help you deserve comes to you promptly also.
sending big ((((((HUGS)))))) for you and your wife
Kind regards oouch
So sorry to hear this Ken, I hope you both get all the help and care you both deserve. Wish you a speedy recovery take care and best wishes to you both x
None of my doctor think that fibro is bad enough to cause all the problems I have they just want to tag you with depression and anxiety. Then they can prescribe you drugs that causes me worse problem and then they want to have you admitted in physic ward
Hi lCllCl6
I am so genuinely sorry to read of the attitude of your doctors. FMA UK can send a Fibro information medical pack to your GP if you wanted them to do this for you? I have pasted you a link to this below:
fmauk.org/useful-informatio...
I want to sincerely wish you all the best of luck, and please take care of yourself.
All my hopes and dreams for you
Ken
I have to agree with this one, I just feel that going to doctors I feel worse when I come out having been giving yet more medication to try, I get so confused, gets harder that when I got to work and I am seen struggling they say I should back to doctor which doesn't help me as I feel like a fake, im on Flueoxetine, then Tramadol, now amatryptyaline, they just seem to fob you off with different meds so puts me off going back. I try and manage it myself but not easy. Ive got other issues so sometimes im not sure which pain is from which condition, fibromyalgia, osteoarthritis or underactive thyroid. I work full time and so frightened I may go off sick, at 60 it worries me as I need to work I know health more important but I need to keep roof over my head.
I don't receive any benifits at the moment, I am still on sick leave from work. I will be applying for pip in the near future though. Sorry to hear that you are suffering more Ken hope things improve for you soon and that you get the help you need without having to wait to long. Take care , kath
Hi Furry
Thank you so much for your kind words they mean a great deal to me and are genuinely appreciated. We are getting our meals cooked for us at the moment and any help with personal hygiene that we feel we need, so it is quite reassuring to have the care in place for us both.
I am so genuinely sorry to read that you are still off work, and I want to sincerely wish you a speedy recovery. I also want to genuinely wish you all the best of luck with your PIP application when you apply.
All my hopes and dreams for you
Ken
Hi Fury- Carol from Stockport, try for ESA first when your SSp runs out- its much kinder to apply for, not much intrusions, very quick and simple to apply for over the fone and a fast decision on getting it. I applied mid March , my SSp ran out 30 Apr, my first payment goes into my bank 3May! they THEN after initial help given send out further questions in a booklet and you can ask someone on their fone network for help, if they decide after this booklet is completed you need an assessment medically and then they decide you can,t have ESA you don't get asked to pay it back. You also get credits on your National Insurance contributions to protect your old age government pension from being short at retirement age.. Good Luck
Thanks for the info carol , I'll look into this, take care kath
Nothing, I live in the US and there is nothing available. I try to lessen the symptoms with proper diet and in regards to homeopathic or natural things I can take, I have tried many.
Did get the mobility part of pop but now they say I'm not entitled and have been granted the living bit under review at the mo as I called them and told them that it is getting worse and wondered why they thought I could suddenly move about a lot 😣 X
Hi Paula65
I am so genuinely sorry to read this and I want to sincerely wish you all the best of luck with getting this sorted out. Please take care of yourself. It may help to take seek some advice from a benefits professional? I have pasted you a link below to Janet, the FMA UK benefits adviser:
fmauk.org/contactsmenu/help...
All my hopes and dreams for you
Ken x
Didn't know about any type of help
Hi williejohson
I am so genuinely sorry to read that you were unaware that help is available to people who need it. I have just created a post for the forum about two different types of help available.
I have pasted a link to this below:
healthunlocked.com/fibromya...
All my hopes and dreams for you
Ken
Able at the present to manage to work.
I am lucky enough to have received pip before the new rules regarding the age 64 cut off poin for new claimants. I do have a lot of other health issues and I'm not sure I would have qualified if I had fibromyalgia on its own. I also have a sitter for 2 hours , twice a week, provided by the council free of charge. Pip helps with the extra costs of travelling to different hospitals in London several times a year and the other ones scattered about. My husband took early retirement as I was not able to look after myself when my spine was shattered. With pip payments now stopping at 64, I'm not sure how some people will cope. The health problems get worse with age. We get weaker and its harder to manage and this obviously includes our spouses who care for us. Its all a mess really. Anyway, the sun is shining, I had a really good night's sleep and I think I feel ok. I'm still in bed so I'll find out in a minute. There's the Russian grand prix on later so hopefully a good day ahead. Love to everyone and I really hope we all have a good day xxx
Hi janh
Thank you, I can genuinely understand where you are coming as I look after my wife who has MS. I am hoping that when she gets to 65, (a long time to go yet I know) that she will get Attendance Allowance in place of her PIP.
I want to sincerely wish you all the best of luck and please take care of yourself.
All my hopes and dreams for you
Ken x
I was retired on the grounds of permanent ill health almost a year ago. I've been in receipt of ESA (support group) for one year. I don't yet meet criteria for PIP and judging by what those here have to go through I'm unsure about it. I hope I can retain my ESA. I'm only 57 but of course the conditions we have age us don't they, prematurely. I get up every morning feeling beat before I start, ache all over and so fatigued. Oh well, such is life.
If you are in the support group u will fulfill criteria for PIP. Do some research or contact CAB / Welfare Rights. Their are checks online. Benefits&Work have one
Don't accept you have been told the truth. You have just been fobbed off from claiming & saving them £
You'll need more than hope to keep your ESA. Disability is now a full-time job.
You have to work to get the benefits you are entitled to or lose them altogether.
I used to receive DLA and had done since 1995 at the highest level. Last year they stopped all my benefits. When we appealed they said it was because I was able to bend down and pet my rabbit!
Could you do that "safely, reliably & repeatedly" i guess not. A one off action should not disqualify u from a benefit. You should go thru a reconsideration & challenge this. I was told that even tho i was in pain it didn't seem to affect me
They are just trying it on. Don't let them. You are entitled to these benefits but you must fight for them it seems.
PS never mention pets & hobbies. Thats just another way they can judge you fit for work. Its none of their business and not part of the assessment. Don't be fooled by the chatty manner adopted. Its a ruse to make you helpful & think they are ok people . They are not . They get £200 per session whether u get your benefit or not. Beware
As I am in full time work I probably wouldn't qualify, the thought of filling in the forms is very off putting if I do not qualify,
DLA/PIP are in work benefits so can be claimed if you are working. If you are unsure if you would qualify, ask Admin if they could send you the Benefits & Work guides that allow you to see what the criteria are for PIP.
You should still Apply, as you may be able to get what was WLA - the alternative to DLA - for people like you, living with ill-health, but Still Working.
You Never get if You Never Ask !
P & L, Kiéran
Still working with great difficulty. But we need the money and with the system taking so long to go through I'm worried I won't get any help and then we would be in financial difficulties. So I'm part time and just about managing but with no quality of life as I have to recover from work on day off and then it starts all over again. I manage on lots of pain meds but the fatigue is horrendous because of this I hardly see my family. Which is then a knock on affect of depression because I feel so bad about it.
Edited By Admin Try and get together with the CAB. They might be able to tell you how to transition from ALL Work & Worry, to Some Work for your employers And Some Time for yourself and Family.
Nothing is more important than Family and Good Health and your Health is always improved by even a short time together.
P&L, Kiéran
Hi lola65
I am so genuinely sorry to read this and I want to sincerely wish you all the best of luck. PIP can be claimed if you are in work or not, just in case you ever decide to give it a go? I want to sincerely wish you all the best of luck and please take care of yourself.
All my hopes and dreams for you
Ken
I know where you are coming from. I have to force myself self up every day to drive 45 minutes to work then work all day my pain is so out of control the tears roll down your face. My legs swell so bad and people think there is nothing really wrong with you because u can work. I have no choice other then doctors to put me in the mental institution just because I have pain every where. So I don't say anything or see doctors I am just here.
I've had to reluctantly stop working owing to my illnesses getting worse - I've qualified for ESA and am currently attempting PIP so I am currently in full 'brown envelope' anxiety mode whilst I'm awaiting their decision. These processes (hoops!) are so stressful, I think they are made especially difficult to deliberately dissuade people from applying. I was lucky to get a discount from my local council to help with my costs towards public transport, that has been such a big help. I would be isolated without that assistance towards travel. That too was really difficult to get (yet another questionnaire *and* a physical medical assessment!). I am sorry to hear you are so unwell - well done for getting through the system to get the help you deserve.
Just on that note - Anyone can apply for a Blue Disability Badge - it's Not just for cars. It can also be used for Discounted/Free Travel on Trains and Buses. And I know some of the better Councils can provide lists of Taxi Companies who do Disabled Cabs and there is also a Scheme for people who need regular hospital visits as well as Volunteer Drivers - Who don't get paid, other than for Mileage Allowance.
Even getting out 1 or 2 days a week is a great boost to everyone's Mental well-being, and that has a knock-on effect on Physical Health.
Hi niretro
I am so genuinely sorry to read this, and I want to sincerely wish you all the best of luck with your claim for PIP. It may help to get some professional help and advice with your forms? So I have pasted you a link below to Janet, who is the FMA UK benefits adviser.
fmauk.org/contactsmenu/help...
I want to sincerely wish you all the best and please take care of yourself.
All my hopes and dreams for you
Ken
Although the ESA made everyone I told LoL - it was for £7:00/week. Then I had a letter from DSS:- As of 1st April (I kid you not !) I was getting a raise to....£7:50 !
Well we were jumping for joy ! We were on the slaptop looking for cheap flights to Australia to see our youngest girl n r wee grandson !!
Well a few days later our joy was complete when we got a letter from DLA. I was successful in my Claim for Mobility at High Rate And was Also awarded Low Personal Care !
" Miracles Will Never Cease !" we exulted !!
And then laffed our proverbial off at the next part which said :
"...your award is until .. 28/4/16, at which time you will have to make a New Claim for PIP. A successful Claim for any Previous Benefits does Not mean you will be automatically entitled to PIP and we may require you to attend a Medical Examination....."
So for a whole 4 weeks we'd beaten the System !!
ps. The £0:50 rise was, according to my CAB advisor/advocate, to take us just over the "..minimal amount available to make any Claim for ANY Other Benefit.... due to Josie getting £X amount from her P/Time job in Tsupermkt." The fact she is Permanent P/T makes things worse. To make ends almost meet, she has to take as many hours O/T as possible, which again keeps us ABOVE Benefit thresholds. If She drops to her Contact hrs, we will still be Above due to that super 50p raise. Edited By Admin
"What about her getting a Full Time job in Ts's ? " I hear you ask ! Well, apart from being full of metal screws, pins and plates due to various mishaps ! Which keeps her on the Records as "our Disabled Member of Staff" !! If she applied for Any other Post in TxxxxS, she would have to give up All her accrued benefits and Pension and SAYE - which we started when I was still working and by any means necessary She has kept going, even though it's dropped to the minimum. So she would start as a New member of Staff on a "Flexible Hours" CONtricked and, because we live a 5min walk, for her ! (15 - 20mins for me !) from said SuprMkt, she would be sent Home when the shop is Not busy, be obligated to Stay Home or miss out whenever they want her in because it's gotten busy - And then be sent Home Again to wait by the phone !
Apparently folks, we weren't looking when Someone turned the Clock for Working and Lower Middle Class People BACK to the 1920's.! And I am personally astounded and aggrieved that the Self-same B's are being elected, to Keep abusing Poor, Disabled, Vulnerable, Old and Badly Paid - who keep Voting Them In ! Turkeys Voting for Xmas !
Edited By Admin
Sorry Ken, I know that my mad ranting was Not what you needed to hear, but I sincerely appreciate all your work here and would ask the religious Members to say a wee prayer that you and your wife get whatever you need to make life a bit easier for you both. I'm sure everyone knows what ill-health means in their own lives, so for all the Good you do, given you and your wife's situations, no-one deserves it more.
Peace & Love to you both my friend
Kiéran.
Hi my friend, I once remember a member (about two years ago) had just qualified for DLA and there claim was up the day before that they received their award letter! The mind boggles!
I want to sincerely wish you all the best of luck and please take care of yourself.
All my hopes and dreams for you
Ken
For anyone in UK there is an amazing non profit organisation which can help with information and advice about benefits, here is a link to their website fightback4justice.co.uk/ They also have a Facebook page facebook.com/FightBack4Just... Ken Please remove this post if I am not allowed to post it.
I was diagnosed many years ago on my medical files with fibro but only found out I had it a few months ago through a conversation with wheelchair services after a referral from the GP.
Who Was It Diagnosed you ? And why were you Not Told - did they think it would Go Away ??
Have just asked my eldest who works with Drs (sorry, but she prefers I don't say more)
She said Ask for your Medical Notes from Just That Period of Time. Go to CAB and ask for a Medical Advocate or Advisor. They will best advise you, but you may, only may,I'm Not Qualified to Advise You, So please don't rely on Me ! But if you do Not have a Claim for Medical Negligence, at least get an Appointment with the Practice Manager, the Doctor involved and yourself and CAB advisor/your partner/family member or friend - to be witness. Ask Why You were Not given the chance to pursue a Medical Regimen which May have Slowed your illness enough that you aren't looking at starting life from a Seat Up !
I cannot express how aggrieved I - and anyone else reading this - am about the unforgivable treatment you have received. I am so sorry for you and the Pains You have endured through the years.
We All well know that FM Is A Syndrome, because it affects everyone differently. But there are Common Factors which Help lead Medical Professionals To the correct Diagnosis of Illnesses. The mere Fact of those Common Factors being visible enough for a GP to recognise as Symptoms OF Fibromyalgia, at a time when it was still a Rarity, should have had your GP starting you down the Medical road which may have been as Beneficial to your Health and Well-being, As doing Nothing may have been Detrimental. And the Only person to make such a decision IS You, or your family if you were unable to make the decision.
I am Not a Praying person, but I know there's a lot of people here who are and I know you'll be the recipient of many a prayer today !
Peace & Love, Kiéran.
Hi Kieran,
I have had many problems since childhood and even though I'm not a complainer they were never taken notice of. I was diagnosed with early Osteoarthritis about 20years ago, along with Chronic Pain Syndrome, and was finally diagnosed with Joint Hypermobility Syndrome/EDS 3 three years ago after a stay in hospital. CFS/ME was diagnosed around 2 years ago. I'm not sure when Fibro made it onto the list. Unfortunately my internal organs are now suffering, although only recently taken seriously, so my body is very damaged now and my pelvis and joints too unstable for Physio. Pain cannot be managed as medications disperse too quickly to be effective and all surgeries and procedures are done under general anaesthetic as locals aren't effective. I am still fighting for help and support but local services have told me I'm too complicated so even struggle when I need to attend A&E. I'm also looking at medical retirement as I cannot even manage an office role anymore and averaging 2-4hrs sleep is taking its toll. I'm very angry at having to self-manage conditions by asking advice on forums etc. I mobilise between forearm crutches and wheelchair now. I do claim PIP, after a real fight to get it, but need the mobility part to be looked into again. The one thing I refuse to be diagnosed with is depression as my only mental issues are through pure frustration at a system that's got it so wrong for so long that it's left me with a debilitating condition that I can't bounce back from. If I tried to seek advice for negligence then I honestly wouldn't know where to start. It goes back too many years so probably wouldn't even stand now. I was relieved after diagnosis to know that it wasn't all in my head but diagnosis of any of my 20+ conditions have not been easy to get support for or with and I'll continue to fight a system until I'm heard. I have now created a medical report to give to any doctor I see as even my Urologist was only made aware of the bladder issues and had no idea of anything else. I really appreciate you replying to me and apologies for the long explanation. Xx
I'm in the process of PIP and am waiting to hear if my claim is successful
Well ALL our Best Wishes/Prayers and Whatever else might work go to You ! 👍
Just Not a " Lucky Rabbits Foot !" For as me daddy told me - "If it was so Lucky, then why's there never a Rabbit with 3 feet running around ? No Son, the Lucky Rabbits Foot you want are All still attached to 4 footed Rabbits !"
P&L, Kiéran. 🐇
I currently receive DLA with high mobility which allows me a car, otherwise I wouldn't get out but I am expecting to lose it as soon as I have to apply for PIP. so I guess I am making the most of the good days while I can get out, once I lose the car I'll be stuck indoors.
I was not aware until recently that one could claim for anything. I am now retired and had Fibromyalgia 19 years and worked until aged 60.
I have fibromyalgia and Sarcoidosis with a fractured back and they stopped all my benifits because I had good days as well as bad, this government will cost lives with the policies they have
If I may say Maverick, you Do Not have Good days and Bad Days !
Edited By Admin
So NO Maverick, You don't have "Good" days, Just days that you've Managed To Get Up !!
WE ALL have to Learn - That Lovely Wee Girl ! IS NOT Your Friend ! For an Extra £20 a Week, she'd Sign away everything you get -- Even if you crawled In the Door with NO LEGS !!
Please Don't believe ME, just Google "I was turned down DLA/ESA/PIP because.." And you'll find the Squadie with No LEGS and HALF an Arm, who was adjudged "Fit For Work" because HE had the will to Live Edited By Admin HE Was assessed as Fit because he'd had ONE Good Hand Left.
I normally finish with P&L - Peace & Love - but I don't know if that exists anymore outside of These Forums ! I wish I could pray to make it so.
Kiéran
actually i have other major illnessess but still lost. im about £260 worse off.
I haven't tried for any of these , I didn't know you could
I also get Mobility Allowance
The merry go round of medical assessments ! Got PIP for 2 yrs then had to re apply after a year then had it withdrawn altogether. Now appealing. Was i cured ? No my condition had actually got worse .
Meanwhile after another ESA medical got taken out of support group put into wrag & judged fit for work in 1 yr. My condition had got worse! Had to go thru appeal process & a supercession to get back in support group. Now am in support group with no PIP. How is that logically possible ? Because no logic to these benefits. Not designed to help the sick & disabled just to persecute.
Medicals are not to help us. They are opportunities to stop our money. Which is then wasted on the appeals process paying judges £100 per hour each.. Medicals should be done by GPs or Drs not occupational therapist s & physios who concentrate on what they see in less than hour. And get paid £200 for doing it.
This system needs reform if not abandoning altogether. People with mobility problems are now being targeted & having their cars removed. People with mental health problems don't even figure at all.
How much longer are disabled people going to put up with this? Iam now about to have my 4 th medical. I have a chronic illness that has no cure but has to be managed. Not necessary to be scrutinised every year.
Agree 100% with everything you say. The benefit system today has nothing whatsoever to do with assessing people's true situations and needs and everything to do with cost cutting regardless of needs.
The application forms and procedures are rigid and inflexible and take a one size fits all approach which is absolutely useless, and would still be even if it worked. Yet when it comes to making decisions based on the one size fits all approach, the results seem so totally random that they may as well admit that all they do is draw lots out of a hat. There is no fairness or logic involved in it at all.xx
Thats exactly what they do - draw lots. Have recently participated in a students survey gathering info on disabled benefits. She confirmed that a friend of hers working for dwp had a quota of "fails" for the support group. All of which qualified according to their own descriptors but needed to be "culled"
I need only to refer to my own transcripts of each medical to confirm this. When descriptors have either been overlooked or just challenged by their own decision despite u providing evidence to the contrary.. This just adds to the number of appeals & explains why there decisions are overturned.
I am now no longer willing to participate in this farcical system geared towards removing benefits from those that deserve them. I think we have been far too cooperative in these procedures. Trying to be helpful only provides more evidence for the dwp to deny our entitlements.
Therefore in the future i will be treating these pseudo medicals as benefit fraud interviews. Not to help but to hinder my condition. I will take someone with me as a witness & concentrate on keeping my temper by keeping my mouth firmly shut in case i put my foot in it.
Hi Vivalaviv
I am so genuinely sorry to read of the merry-go-round that you have been on with benefits, and I agree with you that disabled people need some stability in their lives to be able to cope better, and try and live a more fulfilled life.
I want to genuinely wish you all the best of luck and please take care of yourself.
All my hopes and dreams for you
Ken
None
As I am 'able' to work full time I was deemed fit!
None. I always dropped into no-mans land, but the silver lining is - its a lot less stressful now I dont qualify for ESA!
My initial diagnosis was ME. For that I am now on ESA as I am unable to work. I haven't plucked up the courage yet to apply for PIP as I'm not sure I can face the hassle.
However, as I've now been diagnosed with Fibro as well I can't see things getting better so I am trying to gird my loins and apply for PIP too.
I guess PIP will be a gateway for other things too and given that my hubby has many health issues himself and is 60 I'm not sure how much longer he is going to be able to continue keeping things together for us so other things may well be on the horizon. Though whether we will get them or not who knows.xx
I was told that Fibromyalgia did not qualify for any benefits. Fortunately I do not need them so did not pursue
Just a quick reply Anandavajri1 it is not what disability you have, it is about how it affects you.
☺
Hi Anandavajri1
I am so genuinely sorry to read that you were told this incorrectly, and as Janet28 says, ''it is not what disability you have, it is about how it affects you.'' I want to sincerely wish you all the best of luck and please take care of yourself.
All my hopes and dreams for you
Ken
I was retired on ill health and I am on ESA, but because of osteoarthritis in my spine not Fibro.
I haven't applied for PIP so far. My application for ESA was in the first week after it was brought in and I had so many battles before I was put in the support group. The stress caused more pain etc. I'm not ready to put myself through that again.
So far I am still working and have not applied for any benefits
Hi
Sorry, I haven't tried to get any benefits.
Best wishes
Thank you Fibropop, I want to sincerely wish you all the best of luck, and please take care of yourself.
All my hopes and dreams for you
Ken
I am sorry that you are unwell at the minute Ken and I hope this respite care is giving you some relief that is much needed.
Look after yourselves
Hi Smilealot40 my friend! Thank you so much for that. It is really working out well for us at the moment with the care package that we have so we are both very happy about it. It also saves me a lot of work that I am not really fit enough to undertake my friend. Please take care of yourself.
All my hopes and dreams for you
Ken
None as I can't face the battle to try and get assistance while I still have the breath to drag myself up and out. It would be helpful though as I've had to reduce my working hours to accommodate the fibro and it's a struggle.
I have lupus, copd, degenerate disc desese,small finer pollynuropthay, and fibro. I have an Illness pension I live in Ireland so the system is different. My husband took early retirement he has uncontrolled high blood pressure and had a mini stroke last September. We have recently applied for a caters allowance I don't know if we'll get if we did it would make a big difference to us.
Ken I'm so very sorry to read that your having more health problems please do take care of yourself. I don't post often but read a lot of the posts and your always there giving information and support your a very kind person and I wish you well.
Hi copdber
I am so genuinely sorry to read that both you and your husband have ongoing multiple health issues, and I want to sincerely wish you both all the best of luck my friend. Please take care of yourselves.
Also, thank you so much for your kind words and sentiment, it genuinely means a great deal to me and is sincerely appreciated.
All my hopes and dreams for you
Ken
I now have a Blue badge but that is not just about Fibro as live with multiple conditions.
AWAITING APPEAL FOR PIP...
Had my tribunal for PIP last week, they still agreed with the atos report!
So now have no blue badge still, next step I'm told is to write to MP😒
Ken I do believe some if not all of my depression or anxiety come from FM for which I rec. full disability benefits.Just my thought.Peck☺
Hi peck
Yes, I am aware of people who get high rate disability due to their depression. I think it depends on what support you get from doctors and consultants on this issue? Depression is another invisible illness that it difficult to prove. NHS Choices also states that depression and anxiety are a part of Fibro.
All my hopes and dreams for you
Ken
Nothing
I discovered that ESA is realy a postcode lottery! First question asked was postcode followed by "Oh yes your area is offering ESA" so good luck with that one. PIP is very undignified, and intrusive..I was sent an appointment to travel 35 miles away from home for an assessment, I rang and refused and was immediately offered a local appt.!! If you are asked to attend an assessment take somebody with you who knows you and about your condition so that they can intervene if difficult and trying questions are asked.
I will post again with the results of my ordeal next month. I would say to everyone trying for help and benfits to find yourself a Welfare Rights officer somewhere nearby as he/she is so knowledgable on what you can and can,t ask for- they will also help you thru any refusals given too.
Aww hope you feel better soon big hugs take care
Even though I had to give up work need help arround the house and when I go out l was told I am not entitled to any benifits
As I'm only eighteen months in from diagnosis I think my symptoms aren't as disabling yet. It does worry me that I read on here that people are having trouble accessing the help/benefits they need. What will things be like for me further along this painful path I wonder?
I live in the US & all I get is Social security Disability because of my Fibromyalgia.( I get some money from the Government once a month which isn't enough live live off of.) I can't work because of all the pain( I get serve temple pain & eye pain as well as many other physical pains) I have family but they say I can't live with them( complicated story) so I have to stay in a very stressful environment with my boyfriend whom I have been with for 11 years. He is very unsupportive of my condition which puts us at odds with each other( constant arguing..etc.) I have to stay living with him because I have no place to go. I live in Massachusetts & There is isn't a decent apartment for rent that is less $550 a month & that is usually without utilities included. I don't get any help with money from my family or boyfriend so as you can see I am in a no win situation. There is low income housing here but there is a Huge waiting list that is years long. You have to apply & once you apply they tell you how long the wait is. I got a letter back saying that they are interviewing applicants from 2003. I applied in 2015. So, at that rate I would get an interview until 2028!
Iv been took of PIP from a tribunal as they said I wasn't in enough pain too receive any benifits. I was getting standard rate care and low rate mobilty. Now won't receive anything. I also have APS syndrome and thrombosis and have had 3 blood clots in my leg and has left me with blood reflux. I also have hip and shoulder arthritis and degenerative changes in my back. But all that still isn't enough to receive PIP acordidng to them. Not very happy now.
Happily I'm not as ill as some.
I got 2 sessions of Physiotherapy
It's comforting this poll has shown how much we appreciate your activity on the forum Ken
ESA refused me, said I'm able to work, lol, doc doesn't agree.... no income living of savings, but that will soon be gone
lot's of other heath problems too
that's what's so wicked. I hope you find a way through.
Hi Sleepybutawakeallnight
I am so genuinely sorry to read this and I was wondering if you could appeal their decision? I want to sincerely wish you all the best of luck, and please take care of yourself.
All my hopes and dreams for you
Ken
Thought I'd give you an update. I have been given PIP at top rate for Care and Mobility. Has my condition has worsened I'm going to reapply and see where I can go from there
Hi Hidden thank you so much for the update. I am so truly sorry to read that your condition has got worse and I want to sincerely wish you all the best of luck, and please take care of yourself.
Hi Ken, I'm sorry, sometimes I forget your in the same boat as us with all the illness and symptoms for you and your wife. I see you as the strong steadfast Captain of our boat with always a greeting, so polite and friendly to all. Looking up links and sharing knowledge and experience as well. I don't think I've properly said thank you before, but I'm sur I'm not the only one who has an immense amount of Grattitude for all your work and help on top of your personal load. Thanks Ken 😊
Patrick
I didn't even know you could apply for benefits when you have fibromyalgia
Lowest rate Attendance Allowance
Didn't no I could claim
Not had any assessments for fibromyalgia, yet!! Was awarded all my benefits before being diagnosed with fibromyalgia, was award dla high rate indefinitely and middle rate care indefinitely 4yrs ago due to osteoarthritis and depression was placed in esa support group as well for this. So I have not yet changed to pip. I was diagnosed with fibromyalgia and narrowing of spinal cord cervical stenosis and lower lumber stenosis shortly after all my benefits so I'm dreading the big Brown envelope coming through my letterbox. As I have a mobility car which is needed for my hospital appointments also my daughters hospital appointments as she has c.f. but I will just have to try and do my best and appeal appeal appeal, fingers crossed.x
Erica50
Thank you so much for your kind words and sentiment, it means a great deal to me and is sincerely appreciated.
I also want to genuinely wish you all the best of luck for when the time comes to claim your PIP, and I sincerely hope that you achieve a good award. Please take care of yourself.
All my hopes and dreams for you
Ken
So sorry to hear Ken that you have been unwell I hope both assessments result help you get all you need to help with all you pain and help to make you both comfortable you have done a wonderful job on this forum and are an inspiration to us all thanks Ken. God bless you xx
I have only managed to claim pip after suffering for 18 years with fibro , m.e & hypermobility of the joints. Hopefully it won't be like that for many. Good luck everyone x
Where do I get the packet for my GP, I don't know how much longer I can keep forcing my self to work and be safe for everyone.
Hi lCllCl6
Here is a link that takes you to the FMA UK page for the GP information pack.
fmauk.org/useful-informatio...
I want to gneuinely wish you all the best of luck.
All my hopes and dreams for you
Ken
Have pre-existing conditions which already enabled me to qualify for additional aid
I have received absolutely no help. I have been told as I can look after my 2 children I am capable of going to work and have been pushed onto JSA. They have done this to me twice. Once before diagnosis, I had to go on JSA for 6 months, got my diagnosis went back on ESA had my 'medical' (what a joke) then again in November 15. I didn't sign on, living on my savings but then was told, sign on or we will stop your rent & council tax. They do not care I'm in pain 24/7, that I don't sleep, can't walk or stand for more than 10 minutes before I have to sit or any of the many other symptoms I have because of the Fibro and other issues I have. ☹️
Hi Julsie
I am so genuinely sorry to read this and I was wondering if you had spoken with a benefits adviser to try and get some help? I have pasted you the link for Janet, who is the FMA UK benefits adviser, maybe she can help you in some way? I want to genuinely wish you all the best of luck, and please take care of yourself.
fmauk.org/contactsmenu/help...
All my hopes and dreams for you
Ken
I get Pip and Esa have bad Fibro but also taken into consideration was my severe depression. Anxiety. Osteoarthritis stomach problems so wasn't just for fibro. My depression anxiety arthritis was very much taken into account.
I've just been denied pip,the woman had lied saying I said things that I didn't.
Not entitled to any because i don't have enough national insurance contributions in the last 2 qualifying years . Even though i have paid in 26 years! in previous years! i could not accumulate any because i was unable to work, my wife worked part time and got Tax credits so i thought i was doing the right thing by trying to support myself and using my savings. Not knowing i was not going to get better,, but in fact getting worse and when i try to get help now when i really need it . i am up a creek without a paddle and unable to claim ESA. I believe that you only need 10 qualifying years for you pension now! So, can i have my other 16 years contributions back? i don't think so! !!!
Hi chris24
I am so genuinely sorry to read this and PIP is not a taxable benefit therefore anyone can apply and be assessed regardless of NI contributions. It is payable whether you are in work or not. I have pasted you a link below to the GOV.UK cache on PIP:
I want to genuinely wish you all the best of luck, and please take care of yourself.
All my hopes and dreams for you
Ken
On JSA
Hi Ken,
I am sorry to read that you've been really unwell!
You do an amazing job on here keeping us all in check haha.
We really appreciate everything you do for us! and much much more.
Do take care my friend.
Sending positive healing hugs to you and Julie, pls take good care of each other
Soft and arm hugs,
Elizabeth xxx
Thank you Elizabeth your kind words and sentiment are genuinely appreciated. We are both being assessed for a medical care budget and a social care budget on Thursday this week. They are coming to us as social services have arranged it. We have a great deal of support and backing from our medical and care teams so fingers crossed!
I want to sincerely wish you all the best of luck and please take care of yourself.
All my hopes and dreams for you
Ken x x
Wishing you both the very best of luck on Thursday with your assessments my friends! This would certainly help to you make you and Julie's life a little more comfortable.
All our fingers and toes will be firmly crossed (as they say)
Pls let us know how you get on!
Lots of love and hugs to you both! xxxxxxxxxxxxxxxxxxxx
Hi Elizabeth, thank you so much for your kind message it is genuinely appreciated. We passed the medical budget assessment and now the medical team will discuss with us what they can do for us! We are absolutely delighted. They ran out of time for the social care budget so they are coming back Friday to do this with us. I am confident now that we will achieve this one as well as the lady said she is going to talk to social services about putting it all in place for us!
The two things that we really need are somebody to help me feed Julie as I do struggle on some days, and also help with cutting the lawns as the garden is very big. I think I can manage with everything else for the time being. They mentioned an art class for Julie and somebody to take me out to garden and aquatic centres as I enjoy that sort of thing!
I sincerely hope that you are well today my friend?
Ken x x
Hi Ken,
That's wonderful news my friend.
It's grand to hear that they have both your and Julie's well being and interests at heart.
These people and the services they provide can be a godsend sometimes!
Julie will love the art class and it will be nice for you to get a hand with the big tasks in the garden!
If I lived nearer to you both, I would have lended a hand (very good at making tea and coffee hahahahaha)
Sending you both lots and lots of soft hugs xx
Thank you my friend that is genuinely and sincerely appreciated, and please take care of yourself.
Hi Arymretep
I want to genuinely and sincerely wish you all the best of luck with your claim when you decide to apply. It is always worth having a try, as you say they can only say no? Please take care of yourself my friend.
All my hopes and dreams for you
Ken
I only claim esa .I did not know about other help i may be able to access i feel like a burden and just struggle everyday .my Daughter does her best i just feel guilty ,she has three children of her own .I think i might try for pip so she can concentrate on her family. PS this sight is the best its opening a new world for me thanks
Hi glynbo
I am so genuinely sorry to read this, and I have pasted you a link below on how to claim PIP:
I have also pasted for you links for the social care budgets and health budgets as these may come in hand for you:
nhs.uk/choiceintheNHS/Yourc...
nhs.uk/conditions/social-ca...
I want to sincerely wish you all the best of luck, and please take care of yourself.
All my hopes and dreams for you
Ken
ESA support group. Never had to have a meeting with them, thankfully and been on it for 3.5 years
Although I do get pip and esa I also have other conditions osteo arthritis and atrial fibrillation so probably helps, as I've had hip replacements and riddled with arthritis. After many years of both symptoms intermingle.
Can fibro sufferers apply for a blue badge?
Only managed to claim DLA then changed over to PIP. ESA Applied for but turned down