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Benefits and Allowances for Fibromyalgia Sufferers

By: Jack Claridge - Updated: 28 Nov 2020 | comments*Discuss
Fibromyalgia Syndrome

Those of us who are unwell to the point where we cannot hold down a job or manage by ourselves can apply for help with additional benefits. The most current benefits open to those of us who fit these criteria are Personal Independence Payment (PIP). If you’re aged 16 to 64, the amount you can claim depends on how your condition 'affects' you. An assessment will take place through a qualified health professional who will work out the level of help you can get. This will be subject to regular reviews and PIP will soon fully replace Disability Living Allowance (DLA).

What is Disability Living Allowance (DLA)?

Disability Living Allowance (DLA) is a benefit given to those individuals who cannot work and find it difficult to cope by themselves. This benefit is split into three levels and each level is representative of the nature of your condition. There is a low, middle and high rate of benefit awarded and each rate was awarded depending on the nature and circumstances of the illness. You can keep getting DLA if you’re under 16 or you were born on or before 8 April 1948 and have an existing claim. You’ll continue getting DLA until the Department for Work and Pensions (DWP) invites you to apply for Personal Independence Payment (PIP).

What is Personal Independence Payment (PIP)?

Personal Independence Payment(PIP)is similar to DLA and is only given to those individuals who qualify. In order to qualify you must complete a medical assessment which is carried out by an independent doctor once your application has been received and processed. This examination will determine whether or not the information you have provided in your application is correct and will also assess at what level you may qualify for assistance.

You can claim Personal Independence Payment (PIP) if you are under 65, have a disability of a physical or mental nature and are unable to walk – or if your condition is severe enough that you need assistance when it comes to looking after yourself. There is a daily living part of the claim and a mobility part. Whether you get one or both of these and how much you’ll get depends on how your condition affects you.

What is Mobility?

Mobility is the second component of the Personal Independence Payment (PIP)and is paid at two rates – either what is described as the lower or higher rate, depending on your condition. This addition sum is paid on a weekly basis and may be paid if you need assistance with travel. You or your carer might also qualify for other financial help, for example Carer’s Allowance, or help with housing or transport costs.

Am I Eligible with Fibromyalgia?

As we have already discussed Fibromyalgia – along with Chronic Fatigue Syndrome (CFS) – is a difficult illness to diagnose so it may take some time initially before your doctor reaches a diagnosis. You should expect a lengthy wait as – although Personal Independence Payment (PIP) does cover this illness there are more rigorous assessments to undergo before agreement is reached.

If your application has been turned down then you should make grounds for appeal as soon as you can if you feel that your case is justified.

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Over 20 years ago after mri blood test I was told I had fibromyalgia, I was working at the time until the pain got so bad I could no longer work.After loads of different medication i am now on 100mg go morphine, 100mg amitripaline, 100mg of cocodomol, a day not to mention a few.None of these now seem to be working anymore so going to have to take more pain killers. I recently claimed esa and was place straight into the support group with no assessment, I think about claiming pip but after I read how hard it is to get I won’t bother. They say that assessors have been given guide lines concerning fibromyalgia but because we have good days and bad days it can be very hard to pass an assessment. I say good luck to anyone who try’s to claim pip.
Clare - 28-Nov-20 @ 4:06 PM
I work part time and am a carer in receipt of carer's allowance for my hubby who is on state pension.I don't work enough hours to qualify for SSP. I also have fibromyalgia and my flare ups are more frequent now and when I need to take time off I don't receive any wages/SSP.What benefits would I be entitled to if I have to give up work.Any advice would be appreciated, thankyou.
Jenny - 20-Nov-20 @ 2:54 PM
I was diagnosis with fibro. The same time I had back injury. Which I got from my job. I damage my disc. I try doing different jobbutI was in lot pain. Afailedmedicals.I wason low disability as 40 % disabled. This change when it got call pip. I hadto go for assessment before cov lockdown.I struggleon the day my grandson took me.and went on own. After that assessmentI got my letter and against every questiona 0.i could not be leave it. So wrote letter andgot my notes from my doctor. In2013 I got diagnosedwith fibro from R Aclinic at the hospital. So I wait again for them to say no
Pixie - 3-Sep-20 @ 11:52 PM
Never Ever Go to An Assesment on Your Own! Also, did you know that the second half of the assesment, which is a physical assesment,you can decline at your gps request. The physical part can cause, hours, days or months of pain. In other words it can initiate a chronic flare. Make sure you have multiple medical documents to support your claim. A gp letter is not enough, keep all appointment letters and hospital letters. When have hospital tests, ask the specialist to CC YOU into any copies that go to your gp. Remember, your assesment is based on your worsed day, make it very clear what your worst day consists of. Finally, remember, how you word your pip form is crucial, always take a copy with you to the assessment so that both you and the assessor are on the same page.Never Ever send original documents, you will NOT have them returned. Instead send photo copies. Keep ALL medical documents in a file at home, you WILL need them for any future assesment. If you are awarded 0pts. You have one month from the date of your decision letter to place a Mandatory Reconsideration,do this the moment you recive your decision letter by phoning the pip number on the decision letter. If you are turned down at a Mandatory Reconsideration level,always appeal, 75% of people WIN their appeals. If you are struggling with your forms, contact your nearest Citizens Advice centre and make an appointment as soon as you receive your pip form, they can also assist with Mandatory Reconsiderations and the Appeals process. Hope this helps.
Smith - 19-Jul-20 @ 7:39 PM
I was diagnosed finally with fibromyalgia in Feb 17 after years of all over pain which got progressively worse. I gave up work in December 2015 because of my bipolar which I receive PIP for. But now as my pain is so severe, plus minimal sleep, confusion etc and my need for help with cleaning I applied for mobility part of PIP. I also want to be able to buy aids such as bath lumbar support, various cushions to help with sleeping and sitting but can’t afford. The assessment process was ridiculous. They asked me stock questions and checked my grip and whether or not I could stand unaided. This has nothing to do with my chronic pain. So mobility part got refused and my PIP for bipolar REDUCED!!! Even though I am in and out of hospital for suicide attempts. You couldn’t make it up
Emmaboo - 17-Jun-20 @ 8:33 PM
I have just been diagnosed but i have been in agony for years. I can't sleep . i have really bad headaches. Tired 24:7 . Using aids as in pain. I have applied and have a cover letter from my docs . i hope i done get 0 points
louise1985 - 29-May-20 @ 7:27 PM
I always thought that the stories about heartless monsters at DWP are exaggerated.I thought that too many people are trying to get benefits when they don't need them. Unfortunately I've learnt from own experience that this is true. I wasn't sure if I can get enhanced rate but the basic one was for sure. Then I've got the decision awarding me 0 (ZERO) points! I can't stand, I can't walk, I'm in pain all the time, I can't concentrate, I can't cook. How could they award me 0 points? Because Fibromyalgia "isn't real'?
EvaS - 15-May-20 @ 3:36 PM
I have just been diagnosed with fibromyalgia after 30 years. I have been off work for almost a year and will have to go back in the next 3 to 4 weeks as my pay will stop. If I was deemed not fit for work by the occupational health I really don’t know what benefits I would be in titled to and how much I would get ?? It’s a really scary time, I’ve never been unemployed before, so if there’s any positive feedback ide love to hear it ??. Yours chronic
Chronic - 11-May-20 @ 9:37 PM
hi.i have had fm since july 2019.i was feeling tired and lethargic for a while but shrugged it off as a cold or virus taking hold as i was quite active.when i eventually went to gp i was sent for so many xrays and gave so many blood samples it was unbelievable.this was a waste of time as fm doesnt show up on any of these.eventually i was given a pamphlet to read on fm where i discovered i had most of the symptoms as follows..... constant fatigue muscle pain(especially in right arm,legs,and lower back) going for a wee up to 12 times a day inability to bend crouch or stretch unable to keep a sleep pattern and then waking up tired. it seems to me that certain government departments think that people with fm are telling lies.even when i attended a dwp assessment the interviewer only was interested in what i was capable of doing instead of what i couldnt do.then she sent a report to someone who doesnt know me or has met me to say whether i am able to work.!!WHERE THE HELL IS THE SENSE IN THAT??i can hardly put a sock on and have special laces in my shoex coz i endure great pain trying to tie them by hand.i cant walk far eg half a mile without getting tired.if i sit tor a wee while j get knee pain and if i stand for any length of time i get leg pain.any physical activity eg vacuuming leaves me fatigued and i cant stretch bend or twist my right arm without great pain.but dwp says i can do some work.YEAH RIGHT !!! i also have applied for pip since last november and only got notified yesterday that i am on their shortlist for an assessment.heres hoping. finally i would like to wish my fellow sufferers all the best in coping with this horrible and debilitating condition
jimbo - 2-Mar-20 @ 10:28 PM
Hi all I have read your posts and empathise with you. I attained FM from a routine procedure done by the NHS - I tried to make a claim but it got nowhere..as no proof of negligence. I have had little or no help for recovery other than being treated like a lab rat. I have always worked and after the fore mentioned procedure ..was left paralysed...the scariest thing that has happened to me .. the only sense I had was to hear ...my brain was in gear part of the time .. but could not get to grips why I could not speak move or see ... I work in the NHS ... how ironic I hear you say ..and have done for 25 yrs . I had no help at all except the normal process of line management .." when are you coming back" On seeing occy health I was told I would never work again ! I am a very determined person and certainly did not know what was wrong with me ... other than the symptoms ..of which people do not understand.. unless you have FM. I self helped ..had my husband/children to take me for a walk ..only a hundred yards or so ..it was agonising..but pushed myself constantly. I have had the condition now 4 yrs ..I returned to work after 4mths being off ..I continually push myself ..as think I have been in denial .. saying I am fine I can do it....I have now come to the point of exhaustion...and do not know where to go from here... I like going to work .. but it is so much effort..I have to think where I can park on every journey as can not walk far ..the fatigue hits me at anytime of the day ..and so exhausting trying to fight it...I have global pain Any advice?
Maria - 23-Feb-20 @ 10:54 AM
Hi I’m 17 years old and have been suffering since I was about 13 with horrendous pains in my back hips and knees mainly but I have pain all over my body which makes it hard for me to sleep or do anything. I have had many different doctors telling me it was different things that was wrong with me I’ve had xrays cats scans physical therapy to try and help find out what was wrong. Then October or 2019 my doctor told me to write everything. Down all my symptoms and everything and took one look at my list and said I have FM finally getting a diagnosis felt good it make me feel relieved as I finally had a name to my pain. The other week on my bad day I had sat down on the bus to get to collage and this lady told me to get up and move because I was a healthy young girl and she wanted to sit down when the bus was empty and I was finally able to say that I have FM and I’m finding it hard to stand. People who do not suffer from FM don’t know the struggle of it. I have to physically pull my self of bed in the morning. I have been diagnosed with depression too because of it and have been put on antidepressants to help with it all and to help me function like a human being it is hard on most days but in my good days I like to think what if this was how I was feeling all the time.
Midge - 5-Feb-20 @ 1:11 AM
Diagnosed with fibro by two doctors and the hospital but all PIP seem to care about is my depression. Have had xrays, scans and all sorts trying to discover the cause of my pains as well as heart checks due to severe chest pain and now awaiting MRI. Cannot sit or stand for more than ten minutes at a time until tiredness takes over and then I’m asleep for up to 15 hours at a time. The PIP assessors refusing a home visit, telling me that I have no reason not to attend an interview. System stinks as does the care the NHS offer.
Cap’n - 30-Jan-20 @ 3:03 PM
I havefibromyalgia and I would like to claim.pip I am claiming universal credit. From 22.9.2019
Meli - 5-Nov-19 @ 10:10 PM
Hi, I'm 61 and I was diagnosed with polymyalger and fibro myalgia. 2years ago. I had my own business but it got that I was in so much pain, then became chronic pain that I had to walk away from it. I've suffered from depression before but I feel that with the pain, the fatigue the fog which I battle with constantly are leading me down that awful blackhole which never ends. I'm on steroids, pregablin, anti-depressants. I've put weight on with the steroids and lack of getting any real excersise. This has effected my marriage tremendously which of course doesn't help with my depression. He doesn't want to know or even try to understand. Don't know what my future holds for.
Annie - 21-Oct-19 @ 7:42 PM
Im 36 this year & after smashing my head off a rafter beam in my attic, instantly I began suffering these horrifically terrifying & disorienting "fits" which came on suddenly & incapacitated me with such intense physical discomfort I was convinced I was suffering a stroke the 1st few times it affected me & lasted many hours sometimes. It was indescribable so I used to sketch out to doctors how I felt as if my right eye where I banged my head was being squashed or sometimes like it was being sucked with pressure into my head & my sight was blurry & the only way to telease the pressure from my eye was to give in to an overwhelming urge to rapidly shake my right fpot in spasm. The worse symptom I suffer other than the extreme anxiety & accompanying depression is a strange sensation stretching round my eyes across my nose & cheeks as if Im wearing an invisible heavy mask or goggles yet without answers from doctors who told me it must be in my head, I came to the conclusion that since I was still alive & invariably hadn't yet succumbed to a stroke I just had to roll with the punches but even though I had become accustomed to these awful expressions of an unknown seemingly psychosomatic illness, I found that in public, if ir happened, how much it was freaking not jist my friends but anyone who encountered me & sadly I still sometimes find myself subconsciously trying to cover up my symptoms because I do feel like a freak. Eventually through researching my worsening jaw which has locked up every morning since I can remember, I came accross a website which gave me a name to that condition Temporal Mandibular Joint Disorder ehich then to my surprise turned out to be listed along with many other accompanying symptoms of FM. After my discovery I went iff to my doctor to hopefuly get a diagnosis which he flatly refused to acknowledge as a real condition. That was years ago & about 9 doctors later, 2 MRI scans & a visit to barious dentists & evrn a maxillofacial surgeon who actually agreed, Im now 35 & still waiting to ne diagnosed. I found myself taking crack and sadly heroin to alleviate the pain but now im on methadone but since injecting the hell out of my veins ive developed peripheral neuropathy in my hands. I cant see an end to this. I hope this doesnt happen to others.
Sue - 4-Oct-19 @ 10:01 PM
Hi I have been diagnosed with Chronic fibromyalgia. It took just over a year going through different types of medication and tests before it was diagnosed. I applied for PIP, had a home visit on one of my good days, therefore My claim have been declined. Today I am in s lot of pain all over my body struggling to get up or even move,my hands, neck, arms, lower back, legs ankles toes are in chronic pain. Where is the assessor now?? I am crying for help here, I live on my own. Why can’t this illness be visible??? I I need help but don’t know what to do, they think I’m making this all up.
Sarin - 13-Aug-19 @ 8:51 PM
Hi guys. So glad I found this page and find people that can relate to me. I was diagnosed with FM two months ago and it is a HORRIBLE condition to have. I am 39 years old and have worked for over 23 years full time since I started working. I'm a single mom, struggling to make it. I was on short term disability with my job but stopped because they are waiting on paperwork from my doctors. STD don't pay much and it was just enough to pay insurance. I supposed to have surgery next week and another one next month. I was also diagnosed with possibly having Lupus. This has been stressful and my pain has been severe. My Rheumatologist basically told me to really change my diet and ignore the pain!!! It will go away. I wish people that don't have this that make statements like that to live one day in the life of someone who has FM so they can see how painful it is. I am a woman of faith and ultimately I am believing God to heal me but in the meantime, I wish that people would see this as a true disability and would allow people to get the benefits because flare ups could happen at any point and time and that could be very dangerous.
Shaed80 - 7-Aug-19 @ 5:18 PM
Hi , I’ve just been diagnosed with FM about 3 months ago and also haveosteoarthritis in both knees . I feel like within the last year or maybe more my life has changed dramatically . I am in constantpain and stiffness most of the day , can’t walk any distance at all , can’t stand for long all I want to do is lie in bed . I am a self employed beautician and can hardly work at all , I live with my husband who is now working part time to help me as I can’t do a lot of things like getting in and out shower m standing to make food , putting clothes on . Recently I have had 4 falls , one resulting in me getting the back of my head stitched , this is due to my leg going into spasms , all I do is worry about my future , can anyone tell me what benefits I may be entitled too , thankyou Francess x
Frankie - 17-Jul-19 @ 6:06 PM
I have suffered with FM for 23 years! I’m now 40 years ago and only FINALLY got officially diagnosed yesterday! I have 2 children who have only ever known me to be in pain. So many mis-diagnoses, so many different prescriptions. Seeing endless specialists and doctors! I feel like I’ve not slept in 2 decades!!! I’m now going to start hydrotherapy as instructed by my doctor, who recommended for de-sensitivity cold then heat (baths and saunas). I’m really hoping that it helps because I’ve tried everything else possible.
Cookie - 27-Jun-19 @ 12:48 PM
I suffer baddly with FM i am 25 and only now my drs have put me on the correct medication it took 3 years arguing with my drs to get an apt with pain clinic the specialist done a two min physical on me and said i have FM only now i am getting onto the correct treatments sleeping is a nightmare anything and everything hurts i get it bad in my hands on my palms i cant even pick objects up
Tbrinky - 12-Jun-19 @ 6:42 PM
I have fibromyalgia a tumour in my spine which they say is benign but it causes me so much back pain because it’s pressing down on my nerves.I also have sciatica.In my feet I suffer with Morton neuroma and plantar fasciitis.I already had two operations on my feet but I’m book to have the third very soon.I’ve had to cut my hours at work as I’m in agony but I’ve been told I’m not entitled to pip or any other benefits
Kimball - 22-May-19 @ 3:00 PM
I have been struggling with FMS since I was 23. I am now 54, in May. I have tried to make the best out of my life. I have worked and worked and worked. Raised kids. Did all I could to be a part of society. But now I just cannot do this anymore. I have got to the point where I had to leave my job because of the flareups. It was either me leaving or they kicking me out. So I chose to leave and keep good ties in case.... People look at me and say...You don't look sick! No, I don't. FMS has taken 30 years away. I have lost 4 babies (connected to FMS), I have lost my job, my independence, everything I loved doing. I used to climb mountains, now I barely manage to walk 400 yards with a stick. I used to skate. Work out. Now the most I can do is walk... Some days I am fine, I am not a victim. I feel good. But I also have learned that, in any given moment, I can swing from being fine to being seriously fighting with a flareup. And my day of wellness can become a week, a month, a year, of pain that will not stop.But I still get the "you do not look sick" PS to the person asking about the sleep issues.... 31 years later still trying to figure that out... love and blessings
MCK - 28-Apr-19 @ 8:54 PM
Hi guys, I’m so sorry to hear about your problems I understand how you are feeling because my mum suffers from FM and other disease in her body and it very hard to see her like that.... but I have got some tips to help with PIP Go to limehouse project and get some legal advice because they will able to shine some light on the steps you can take to get pip and most importantly always have someone by your side for support
Unknown - 16-Mar-19 @ 11:50 PM
My girlfriend has severe FM & other issues but still has to work & can’t claim pip. She is only 40 yrs old & if she carries on she will be in a wheelchair hooked on morphine & gabapentin for the rest of her life, we have children & it is affecting her life, the children and our relationship hugely. She is in so much pain but can’t get pip or housing help etc?? Perhaps moving away from the uk is the only answer. Any advice very appreciated from anyone, John. P.s. if she was depressed she could claim pip but we tried to be honest only to score 0 points for pip????
Fatkat - 15-Feb-19 @ 11:15 AM
Reading all these comments is really upsetting. I'm so sorry for you all. and angry. I think the idea of 'disability grifters' is wielded by those in power to make the larger population suspicious of the disabled. Maybe one or two people carry on like this, but it is just not reflective of the larger population of people who are unable to work. I developed fibro only one year ago. I tried everything to continue working full time but it eventually overcame me. I am still recovering from pushing myself so hard. I am working part time now,16 hours a week. still in my field that I have trained for and love. I am really struggling to even maintain these short hours, and my self confidence is destroyed from the cognitive effects the pain is having on me. The money is not enough to survive on. I am eating in to the meagre savings I had stored up in order to pay rent and bills and they will run out soon. I am terrified of applying for ESA but I know I will have to. I was on it in the past for about a year. It was for extreme anxiety that had me housebound. I eventually overcame this, and returned to work. I was so proud of myself for doing so. I know how stressful and degrading the process of applying for it is. I was SO happy when I returned to work thinking I would never have to go through an ESA 'review' again. Seeing how badly fibro is viewed by the DWP from all your comments while it is destroying my life and future is just so bleak and scary. It does make you wonder how long you will be able to survive and really have dark thoughts abut ending it all. This is systemic and it is policy. We need to stick together and not buy in to this myth of people 'going on the sick'. It is used to dehumanise us. I love you all. We are all worth so much more than our productivity.
rosa - 12-Jan-19 @ 2:17 PM
Can anyone with fibromyalgia tell me what they do about sleep, I never sleep because fibromyalgia affects REM sleep and all I want is some sleep.
None - 29-Dec-18 @ 5:59 PM
Scored 0 points on pip assessment for fibromyalgia and scoliosis
Kerrie - 30-Oct-18 @ 9:56 AM
Fibromyalgia sufferer for 15 years. Lost job due to illness recently
Cruela - 13-Sep-18 @ 5:51 AM
If I were you I'd focus on your arthritis and lumber problems with regard to your ESA should you need to escalate to tribunal.It may sound like crazy advice put if it were me I'd play down your Fibromyalgia much as you dare as it seems to be the "kiss of death" as far as the DWP are concerned. As I stated in previous posts, I have Parkinson's Disease that is quite advanced now and 4 years ago the DWP called me to say they would not expect me to attend an ESA face to face which was decent of them and my recentPIP interview was very straightforward (the assessor could not have been nicer - the luck of the draw I guess!) and I was awarded enhanced rate for both to replace the higher rate DLA awards I was gratefully receiveing before their switch to PIP,but when the letter arrived I noticed to 2 PIP form activities that my Fibromyalgia significantly impact are "Mixing with others" and"Planning and following a route" and while I provided the DWP with a lot of details, I recieved zero points for both.Fortunately it did not effect my overall scores but it does highlight just how poorly Fibromyalgia is viewed by the DWP. I have since seen my GP and had my Fibromyalgia "diagnosis" removed from my records as, in truth, and in my experience, it is seen as something of a joke and is perceived by most as a made up condition that has replaced the "old lower back pain fiddle" adopted by the lazy and the work-shy out for disabilty benefits. I worked for 8 years after my diagnosis of Parkinson's and worked all my life up to that point and I don't want to be tarred with that brush. If you do go to tribunal make sure you are armed with a report from your rheumatologist stating that you cannot do the things you say you can't on the forms you have submitted and don't dwell on your Fibromyalga as that will do you more harm than good in that arena.
Jonesy - 5-Aug-18 @ 10:35 AM
Hi, I was diagnosed by a rheumatologist last year. I also have arthritis top and bottom of my spine,knees,ankles and feet. My arthritis was diagnosed about 8 years ago through various x-rays and blood tests. Three of my lumbar discs are completely flat leaving me with two that work. I get PIP at the standard rate. My ESA has been denied after having a face to face assessment. I have done the mandatory reconsideration via telephone call. Now waiting to hear to be turned down again. Then I will have to go to a tribunal. Today I received medical report from face to face and it is full of fabrications and test results for tests I didn't even do and was not asked to do. A second brown envelope also arrived with a new form for ESA saying that because I have been on ESA for a while I need to fill it in and get another sick note from my GP and send it all back by the 16th August. Now I am really confused. My ESA was stopped from 30 th July and was told on that letter that I wouldn't receive anymore payments. So I will dutifully fill in new form and send another sick note . Then wait to see what transpires. I might even call ESA and ask if they were supposed to send me this form. ESA taken away on 30-07-18 letter dated 30-07-18. New form dated 01-08-18.
Mazzy04 - 4-Aug-18 @ 6:22 PM
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