I have been suffering with fibromyalgia for nearly 20 years but have always managed to work a couple of days a week until recently, after being on furlough for a year I started back at work yesterday and by the time I got home I had such a bad migraine I had to go straight to bed, I had to ring in sick today as I still had it this morning. I get migraines a lot but mainly when I’m stressed or have to go anywhere, the pain is unbearable and nearly always in my left eye, and can last for up to three days, I take cocodamol which is the only thing I’ve found to be of any help at all.
I get pains all over my body my ankles are swollen and my feet are painful when I walk, I struggle to get out the bath or bend down now which didn’t use to be a problem, along with stomach problems as well life just feels like so much of a struggle now! I don’t qualify for any other benefits as I don’t pay tax as only work 14 hours a week and my husband works full time. I just don’t know what to do now as I can’t afford not to work at all, but feel like I can’t manage to work either! any advice from anyone who has been in a similar situation would be helpful thanks in advance
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Kathy63
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Thanks for your reply, I have tried the self test to see if I qualify for PIP but I am either too honest or just too determined not to rely on others for help that I wouldn’t qualify with the answers I gave sadly
When applying for PIP pain only plays a part in as far has how it stops you from doing things for your self. We all have pain. But it can be at different levels. But if the pain stops you walking for example, or your bed bound or need help help with day to day living then im sure its taking into consideration.
Dealing with pain is horrendous thats for sure but its how it effects your life everyday and the help needed I think is what they focus on xx
The thing about PIP is you have to be honest but not with the fine details. If you sometimes can't get in or out the bath then you have to put that you cant get in or out the bath all the time. If you struggle to put your shoes on sometimes them you don't say sometimes you just say I cant put my shoes on or off.You have to try and think of the worst times and then multiply them by ten and that's your answer.
If you have needed your husband or daughter or friend to help you with personal care then you just have to say you always need someone to help you with care and just cannot do it on your own
Being able to do all of these things sometimes when you really get all your will power together and force yourself means that the assesors will just say you can do these things when in reality there are days you just can't or you are in pain when you do.
I'm not asking you to tell lies as such if you have ever struggled with anything or have ever simply been unable to do something or have been stuck in bed crippled with pain from fibromyalgia then you are permanently suffering from this illness. So you have to put down on the application that you suffer all these problems 24 hours a day everyday.
Someone in pain with cancer who takes morphine to kill the pain maybe able to go for a long walk when the pain goes down with the drugs but it doesnt mean they don't have cancer.
With PIP mental health is also a big part and Fibromyalgia IBS etc will cause anxiety and vice versa. This can also lead to depression. When you're feeling stress or anxiety or even down which I am sure you're feeling all of these right now this is a medical condition quite possibly worse than most physical health conditions. You also have to say these are constant exhausting problems that make your pain worse.
If there are days when you feel too stressed to be bothered to get dressed showered or even get food ready then you're neglecting yourself but its not you thats doing it its your mental health and your other health problems are also a cause.
So apply for PIP again and again if you have to. Seek help and keep repeat prescriptions of meds that you're given even if they don't work for you. Dont try and gunfight this without the meds unless you just can't tolerate them. Tell your doctor to give you something else but if none of them help make sure you still keep the repeat prescription coming. If the DWP see your not on meds or nothing significant then they will assume you don't need them because you can manage. If you're on amitriptyline play on your doctor to increase the dose saying what your taking doesnt work well. You don't have to take extra but just get the increased dose so you and your gp can tell the DWP that you are on a strong dose and even then say it just eases the pain a little not completely.
Good luck but remember you've got an invisible illness but its real and its horrendous at times. You just need to say it horrendous all the time otherwise these jobsworth will reject you. As far as they are concerned you're entitled to PIP if you have an illness that is constantly causing you pain and mental health but that if you can manage to do anything on an odd day here or there then you're not ill enough to qualify.
Like I said earlier if you have cancer and can't do anything 6 days a week but then on the 7th day you manage a walk with your dog then as dear as the DWP are concerned you basically don't have a problem and pretty much dont have cancer even though you do
Advice I was given by the citizens advice because mine was a nightmare - which is a story and a half - is if you need help any of the time mark it down as if you need help ALL of the time. We're used to minimising our issues, it doesn't hurt that much, I can walk that far some of the time so it counts etc, but this isn't about making do, this is about honesty and getting help. So if you have a shower stool [which is a godsend] say you need help showering because you do. If you walk with a stick you can't walk that far unaided - even though you don't need anyone else. If you have to use the rolling position to get out of bed you do need help, if you can't sleep without a pillow between your knees - these ALL count and should be listed. It sounds petty because you have a hundred little tricks to help you and you don't think of them, but honesty is the key factor. Don't play down your problems - and you're not exaggerating them- you're being honest. You need these things so admit it. You'll be surprised how quickly the points rack up when you look at them critically.Good luck.
Thank you for your helpful words, I do play it down and thinking about it over the years have found lots of ways of managing without asking for help from anyone with things I can’t do, like wearing slip on shoes without any socks or tights on the days I really can’t bend down to put them on which is most of the time, or rolling around onto my stomach in the bath just to get back onto my knees so I can get back up from laying down, as we don’t have a shower, I’ve stopped wearing dresses with zips as I can’t undo or do them up on myself and when I get a migraine I just go to bed and sleep and don’t have any food until I am well enough to get up and make it for myself as don’t like bothering my husband who has health issues himself. I will have a rethink on everything I need help with really but don’t ask for so thank you for making me think differently
Hi lovely x apply be honest you have nothing to lose do you. Get as much information togethe, a letter from your Doc too. Migraines are disabling have you seen the Doctor about them and your other problems? Do you get an aura or warning before your migraine attacks? Taking sumatriptan / immigran just made me able to cope with mine and stopped them in their tracks when I felt one coming on.When your health affects your life and work you need help, please try. It can be a stressful journey but still worth a try.
There are new treatments out for migraine now, injections, I haven’t tried them yet but plan to ask my GP about them, maybe they would help you? In the meantime try a triptan as Calliejx advised. I use rizatriptan and it does help. Good luck
i'm suffering with the severe chronic migraines for nearly 20 years. only last year after numerous medications trials, was offered the injections.what a relief!! honestly. its not a cure, and you still have the occasional ones,but much lighter and more manageable. the injections don't work straight away, mine take about 2 weeks to kick in. as its on NHS you suppose to have it every 3 months x3 times during the year and 3 months off. Iam currently on "off"period but cannot wait for my new injection at the end of this months, as have migraines no stop during the month ( about 25-27 days of chronic migraine). also currently was diagnosed with fibromyalgia and really struggling as cannot walk or control my hands.literally severe pain from head to toes. at least look forward to my migraine injections soon.
so highly recommend them if you suffer from the chronic migraine, though still taking Sumatriptan occasionally. but be prepared that your face will change too.
as you've might heard its a Botox injections ( a dream fro some women). the doctor injects straights in to your head, above the ears, down the neck, hairline and sometimes forehead...i think its about 10-15 injections each time, depends on condition. you feel like a "voodoo doll" and its quite painful too, especially above the ears...ouch!
you'll see your forehead stretches, so with that effect the top part of your face kind of "slides down". eyebrows shape and height change, eyelids get heavy and eyes look puffier, and of course you will not be able to move the forehead or lift your eyebrows at all, quite funny but annoying and personally i do not like Botox' effect on my face as i like to express my emotions, which makes it limited. and of course any wrinkles on the forehead dissapear! but don't mind to have that as it helps me to relief the migraines.
as the eyelids get heavier, it makes it more complicated to apply a make up...
I don’t really get any warning that I am going to get a migraine come on but know that if I’m in any stressful situation or go out all day I usually end up getting one either that night or the next day. I have seen my GP in the past but never really had much help from him he gave me some tablets that you had to take if you thought you were getting a migraine but they didn’t work for me, I asked GP for oxygen once as found that to be helpful on a plane flight i was on when I was taken ill with a migraine while going abroad but he dismissed it and said it isn’t usually prescribed for that
Hi, you should maybe speak to your GP about trying a preventative (beta blocker, topirimate etc.) alongside one of the triptans. I couldn't take anything for mine, vomitted for full day, in bed for 2! Now I can work through mine as they are less frequent & less severe, total game changer for me.
i suffering from chronic migraines for nearly 20 years and its about 25-27 days per month., literally ALL the time . i cannot walk, reacting to the lights, cannot eat, vomiting, loosing balance...tried several medications and the only one helped is Sumatriptan, it gives you pretty much an immediate relief. kind of "numbs" the pain, but you still have migraine. you feel a bit drowsy but after some time of taking this pills its not so bad.
but definitely injections help- will struggle without them. so to relief my migraines I have injections and occasionally Sumatriptan
I used to support people to fill in this form, I was always successful in terms of getting the support for others. Everyone is correct in saying we “get on with it” Fibromyalgia has taught me on thing it can vary from day to day. But it’s always there wouldn’t it be great if the pain went?You really have to be honest -as in fibromyalgia is there all the time, do you need help to pick things up, bend down, wash folding clothes, eating, cooking. Don’t pretend you can manage. We are very good at that.
You’re right Fibromyalgia is always with me, I am a very self reliant person so will do anything and I mean anything not to ask anyone to help me with things I can’t do even if I have to go without, like I would rather not eat than admit I wasn’t well enough to cook for myself or if I drop something I would leave it on the floor rather than ask someone else to pick it up for me, I know it’s not helpful being so independent
There's lots of help available to claim PIP. I keep an old post of mine up-to-date and you'll find it here healthunlocked.com/fibromya...
The key things to remember about PIP are:
1) It is not an out of work benefit. Lots of people who are working qualify. It is not taxed and it does not depend on being on a low income.
2) It is not about your diagnosis or illness. It is about what you can and can't do. They use a series of descriptors to award points. You have to make sure what you write on the forms and the supporting evidence that you supply, matches the descriptors.
3) It's about the help you need, irrespective of whether you get it or not.
4) You may be able to do something with a struggle, but for PIP the test is whether you can do it RELIABLY. This is defined as: to an acceptable standard, in a reasonable time, safely and repeatedly. So if you can walk 50 metres before pain stops you, could you do it again safely? If not, you are treated as being unable to do it.
5) For PIP if you say something affects you for less than half the time, it is treated as irrelevant. So 3 days a week or less does not score any points.
For each of the questions about PIP on the long claim form, it can help to separately break down the task into its component parts. For example, using a toilet. First you have to get to one before you have an accident - so is getting to it an issue? Then there's opening the door (pulling or pushing swing doors at work can be an issue for some people and door locks), then removing clothes, then the movement required to sit down on the toilet, tearing off sheets of toilet paper, cleaning yourself, standing up, flushing it, re-dressing, walking to the sink, turning on taps, washing hands with soap, exiting (more swing doors perhaps). Do you need to use any aids? A raised toilet seat perhaps, grab handles to help with steadying yourself when sitting down or standing up? Do you need to use moist toilet paper wipes? Are the taps adapted for you to use or a particular type? If you have accidents, don't be embarassed to say so - how frequently and what impact do they have on you? Do you need to wear pads or special underwear?
You need to get across to the assessor clearly, those things you cannot do or which you cannot do to a reasonable standard, safely, in a reasonable time or repeatedly.
It's worth knowing that after a certain age you can't apply for PIP unless you are already getting it. I didn't know that until it was too late, but I was advised to apply for attendance allowance, and I got the higher rate, just by doing what you say. I was really surprised to get it, after I had been refused blue badges to park closer to where I was going.
I still need blue badges but most of the time I drive my partner and he has them because he is blind. For the last year, I haven't needed them so much because I haven't been going anywhere without him. And to be honest, sometimes the disabled areas are no closer than other spaces.
Your advice is very relevant. I also had the advice to think how long it takes to go to the loo - not for the action itself but from the moment you think of it, struggling to get up and get to the bathroom etc. I use a shower stool in the bath and it is very helpful; I can wash my hair without bending down and it stops me from falling. The allowance will help to pay for all the things I have bought in the past to help with the pain, and now to pay for home help. It doesn't feel right when you're filling in the form but you have to put down how it is on a really bad day otherwise it can be a waste of time.
Hi, You may be eligible for PIP payments if you are under the State Pension age, and aged over 16. PIP payment applications stop at the time you reach the State Pension age, which is currently 65-years-old. However, if you start receiving PIP payments before State Pension age, the payments will continue indefinitely.
I'm sorry, I didn't take note of it because I am 76 and way past that date. I think it may tie in with pensionable age. I'm sure it will tell you on the form.
Hi Kathy. My wife has FM and at her last assessment, she had her PIP rescinded. The assessor didn't put many of her problems and ailments in the report and it was due to this that she lost her benefit. I insisted that she went to the GP and ask for a supporting letter from them. The letter costs £30, but it was £30 well spent. It detailed all her problems and ailments along with all the medication that she has to take. By doing this, her benefit was reinstated with full back pay. When you answer the questions, answer them truthfully, but answer them with how you feel on your worst days. I'd never condone anyone cheating the system, but if you genuinely need financial help, then go for it. My wife can never work again and I'm a factory worker. Without her benefits we'd be well and truly scuppered.
Ask for a referral to the pain clinic. I had several appointments and the consultant decided to give me injections into the back of my head. Have to say no migraines for 3 months. Waiting now for it to be repeated. You can also go down the occupational health assessment route too. I fought against it but have to say my employers were right and the report has helped me remain in employment. New chair, ramps, handrails, car parking space right by the door, modified uniform so that I can actually dress myself (before if I was too hot/cold one of my colleagues had to help me put on/get out of clothing. Modified hours so that in winter I work less hours (can't drive in the dark) but in the summer I do as much as I can.
Apply for PIP as you have nothing to lose and something to gain
I would advice you to go to Citizens Advice for them to help you with forms . My friend filled them in herself and was refused so she got them to help with appeal and got PIP.They know how best to explain your application. Good Luck 🤞🙏
Hi Kathy63, I feel your dilemma. I had to finish work a few yeats ago because it was just too much to force myself to be ok every day.I applied for PIP a few months ago but got nowhere with it. Just how ill do you have to be to qualify?
My fibro is awful most days like many other sufferers. Maybe I was too honest with my answers as some days I can do things. The worst symptoms are the fatigue, headaches and nausea and not sleeping. Living with this condition is a battle. I wish you luck xx
Hello PIP is a state benefit to help with your daily living activities and mobility issues. May I advise you to take a self test on the Benefits and work site, being honest and realistic in your abilities when doing the test. Any information about your inabilities you submit on your application form will have to be justified at you Face to Face or phone assessment. Keep a diary of you daily life in relation to the PIP descriptors. Have you got up to date medical information, diagnosis health professionals reports that support your inabilities. Having an OT report on you home adaptions that are needed required to assist you. You have to be able to preform each activity/ descriptor safely, repeatedly and in a timely manner for over 50% of your life.
Yeah I don’t think I’d get it either, as some days are better than others and I’m a very determined person, don’t want to give in to anything, but the migraines I just have no choice but to give in and go to bed! It’s horrible ruining my quality of life as I’m sure it is for everyone suffering with fibromyalgia
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flare up
A positive mummy of 2 with Fibromyalgia who like everyone has bad days but has also found ways to stay positive and get the better of pain!
Any Advice? 
I’ve had enough 
Stress
