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Benefits and Allowances for Fibromyalgia Sufferers

By: Jack Claridge - Updated: 21 Oct 2019 | 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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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
The often insurmountable problem those who suffer FM will face with regard to being awarded benefits is that there are no empirical diagnostic tests to confirm it.The DWP are not interested in "opinions" and that's all FM sufferers have to negotiate with.Even a highly qualified Rheumatologist can only make an "opinion diagnosis" which often counts for nothing as far as the DWP is concerned, especially when all known "other" tests come back unremarkable (as in, nothing "physical" can be found).The other big problem I see is that Cognitive Behavioural Therapy is always a recommended treatment option,which will be taken by many as confirmation that FM is perceived by the medical profession as principally a condition of the mind as psychotherapy is not seen as remotely necessary for any other rheumatic condition.The switch from DLA to PIP was supposed to take into account that a "diagnosis" should be secondary to how any health condition actually affects the claimants day to day functioning but, in truth, this is not what's happening.It is no coincidence the majority of PIP claimants being refused or having their previous DLA awards reduced or ended under the new system, are sufferers of CFS, ME, Stress Disorders and FM.The DWP has clearly decided that If a medical condition cannot be scientifically proven, it either does not exist and/or can be easily faked by the workshy and they are not going to pay out in the vast majority of cases.
Jonesy - 19-Jul-18 @ 8:42 AM
I was diagnosed with Fibro 13 years ago by Professor Davies at Guys hospital, London.I tried twice to get some sort of help but have been turned down.
JIN - 18-Jul-18 @ 8:57 AM
A month or so ago I posted on here what my PIP assessor told me in relation to my FM diagnosis and how it is perceived with suspicion by the DWP.I have long term Parkinson's Disease (PD) and the first thing my PIP Health Professional/Assessor did when she saw me and my PD symptoms was apologise for me having to attend a face-to-face consultation in the first place.I have just received my PIP assessment scores and was awarded enhanced rate for both components as I was under the old DLA system.However, what I noticed from my assessment report was that I received zero points for all my FM symptoms.I recently read that the DWP recognise FM, but"recognising" it as a legitimate health condition but accepting it as a being sufficient entitlement to award PIP will not be the case for most.
Jonesey - 8-Jul-18 @ 10:29 PM
I've been diagnosed with Fibromyalga and Osteoarthritis i also have other registered illness Diverticulitis Asthma Angina and Barretts Esophagus. I'm still working but finding it difficult too i don't know about claiming for anything
Sheshe - 21-Jun-18 @ 4:10 PM
@Buddy - yes, its terrible I feel stuck between a rock and a hard place. Not ill enough to be bedridden (much of the time), but not well enough to work either because of the pain and the constant low energy levels. Feel like I'm existing in some hellish twilight zone.
JZ - 15-Jun-18 @ 2:03 PM
I have fibromyalgia and a pinched nerve in my neck. I was told by my occupational therapist to apply for pip to help pay for the treatments I have to have each month and the time off that I have to have when im in too much pain and are too stiff to move . Of course Iwas turned down as I actually work , but the only way I do this is by taking loads of medication which I also have to pay for . So I've been told by a professional that I shouldn't work as much as I do as it makes my condition worse. Why don't these assessors realise we're not looking for a hand out but we actually need help and our long term condition that we have got through no fault of our own actually costs us to have . If I could give what I have back and be normal and pain free again I would do it in a heartbeat .
Buddy - 11-Jun-18 @ 9:22 PM
Yesterday I had my PIP face to face.I have advanced Parkinson's Disease (I was diagnosed 15 years ago) but last year my Consultant sent a letter to my GP as my pain symptoms were inconsistant with Parkinson's and my GP diagnosed Fibromyalgia (FM).When I was filling out my claim form I contacted the DWPexplaining my FM does not significantly affect my day to day functioning as my Parkinsons was in a different league.I was told to be very cautious about mentioning FM as it is viewed poorly by the PIP assessment providers.I discussed this with the Health Professional conducting my assessment yesterday (who was wonderful by the way) and she told me that inspite of FM being championed by a minority of the medical profession it was gereally seen as a diagnosis that is "given to patients who won't leave their GP alone" and as no empirical diagnostic tests exist it can be easily faked by anyone who memorises the location of the tender points and let out a painful yelp when the GP touches them during an examination.I appreciate this will not be what PIP claimants with FM want to hear,but unless and until FM is recognised accross the board as an actual and legitimate condition that renders the sufferer genuinely disabled and unfit for work, it will continue to be seen as somthing of a scam.I have a chronic and progressive illness (Parkinson's) and a mountain of supporting medical evidence such as brain scan reports, Occupational Therapist reports, Consultant Neurologist reports, and GP reports and I am now sweating on what the outcome of my PIP assessment will be........ and my Parkinsons is beyond doubt so I would imagine many clamants with FM being their principal or only health condition will be disappointed.
Jonesy - 7-Jun-18 @ 9:19 PM
And I've been declared fit for work three times? Won each time! Took over a year to sort out all the benefits, just to win, get it all, then have it all taken away as I got married! All I get now, £55 pw PIP as the DWP feels my wife's wage of a supermarketcheckout £12k pa, enough to support is both? They just want me dead! I'm surprised government just doesn't gas us and be done with it?
Honeybun - 22-Apr-18 @ 7:30 PM
I've been in pain for so long now I don'tknow for sure? Maybe 11 or 12 years? I have had little or know treatment? I waited 7 years for a MRI scan? I don't know what causes it? Sometimes it's stress! Sometimes it's carrying shopping bags? Sometimes it's writing a letter? Sometimes, walking too much? Sometimes walking a little? Sometimes just sitting in a chair? I get three levels of pain! 1) Pain all the time but bearable! 2) Pain all the time that's unbearable! 3) Pain that completely immobilizes me! All I have had from my gp, is pills??? I am soooooo fed up! Just to have a diagnosis would help
Honeybun - 22-Apr-18 @ 7:19 PM
I have osteoarthritis after having a road traffic accident in 2006 I have suffered with an ever since I was given the higher rate of mobility by the DWP but got my car taken off me in 2016 she I 1st had to apply for PIP... I didn't understand the appeal process properly & didn't go to appeal.. in 2017 my health got worse & in September 2017 I was diagnosed with Fibromyalgia.. so I re applied for PIP to my surprise it got taken off me even though it was given to me I2016 which proves the assessments are not accurate! I am now in the process of going to appeal as my mandatory reconsideration notice was denied!! So I have the horrible task of getting all my evidence to take to a tribunal when most of my fibromyalgia is what I tell my GO in the 1st place. I will not give up this fight I will fight until I can no longer fight.
Chris - 26-Feb-18 @ 9:53 AM
I have been diagnosed with fibromyalgia 2 years ago and b4 that I am suffering from bowl obstruction, had major surgery in my young age. Also having back trouble and neck. Despite all this illness I have been rejected three times for PIP and mobility. Score given was 0. I am now in the position where not possible to work but to survive and to look after ur family you must have to work. Psychologically I have been broken down and this is thanks to the government intiative for PIP ruling dont know what to do.
YG - 11-Feb-18 @ 1:24 AM
elaneh - Your Question:
Just checking that you do know that DLA has been abolished and everyone has to claim Personal Independence Payment now.

Our Response:
Thank you for your observation, we have updated the article.
FibromyalgiaSyndrome - 8-Dec-17 @ 3:06 PM
just checking that you do know that DLA has been abolished and everyone has to claim Personal Independence Payment now..
elaneh - 7-Dec-17 @ 4:12 PM
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