Fibro sufferer & on Pip

Fibro sufferer & on Pip

Hi everyone. Thanks for letting me join your group.

I am in the process of awaiting my PIP renewal that I sent off in December. I am so very nervous that I may bet refused, how does everyone else cope. I suffered 2 strokes 2 years ago almost which made my fibro flare like crazy. I also have OE and my mobility is very limited. How do you cope on little money and how do you deal with the pain xx

20 Replies

  • Pace your activities out,try different things to what works for one doesn't always work for everyone,valarian is good for relaxing both the nerves and muscles, goodluck with the pip.hope this helped a little.

  • Hi Georgie9

    Welcome! 😊

    Do you get ESA? I ask because you ask how we "cope on little money?" For normal living expenses, ESA is the benefit if you're disabled or too sick to work. As you're awaiting your PIP renewal, presumably you've been receiving it but hopefully not as your only form of income unless you're (sorry for asking) over 65 thus on a pension? Regarding the question of managing on little money, that's a tough one to answer!! It's so totally personal that it's impossible to give examples; there are so many methods that you'd be reading replies forever!

    Regarding the pain question; do you take any regular medication for it? Do you have any for 'breakthrough' pain too? Some other things to consider/try; meditation, mindfulness, pacing, massage, yoga, pilates, swimming, walking (anywhichway you can!) stretching, physio? distractions like art & craft, knitting, sewing etc, acupuncture, reiki............. allowing yourself to have 'rest days', 'me days', periods of solitude & crying BUT in contrast, activity days, social days & downright "IM NOT GIVING IN" days!!

    Now, I don't pretend to practice what I preach but I do do the most important and that's to pace my activities. It takes a lot of forward planning and can go totally awry but the intention is always there!! I still get flare-ups of pain for no known reason but also from not pacing properly; I'm no expert or angel by any means but it is what it is unfortunately.

    Hope I've given you some pointers/ideas.......

    RJC 😊

  • hi georgie9, welcome and hello

    I got my Pip last year and I presume that if nothing changes, like I suddenly can walk without any pain, no meds and in a straight line...if only... I presume that they will renew award.

    I know it is hard to manage...have you got a blue badge, and or a travel pass...making getting out easier. Friends and family are good, but sometimes we all need to unload without being judged. This place here is good to have a rant or even share a little fun.

    Life isn't all doom and gloom. Chin up, I hope everything turns out well for you

    hugs Liz xo

  • Thanks Liz.

    I can not go out alone, or unaided. I have a scooter, only a small one but then again hubby has to put it together for me. I am a happy bunny and run my own secret fibro group for caravanners. I have a a great positive outlook, but am really worried about the pip renewal as they are being so strict. Although I have always worked, I just physically cannot now. Anyway enough about me. I appreciate you reply and its good to meet new people Thanks xx

  • Liz be aware it's not as straightforwardness renewing it ........I had a fight with PIP after they stopped my claim saying I hadn't attended TWO interviews but I had only missed ONE (which you can do and they will allow u one more) the second one they were counting was one they had sent go to an assessment 50 miles away which was just not possible for me and especially not at the time thwy had gave all my friends were either working or had children to collect so noone could.have taken me anyway. ......I fought all summer 2016 to get it reinstated then got appointment for assessment got refused my.mobility despite having been in agony and on crutches due to knee and hip.pain......I was dropped off at door had a rep from support group and he said I gave very honest but good answers explaining my problems. They asked me.about shopping and housework and driving etc.....I had been in bed for FIVE WEEKS previous to interview with pain and fatigue and a reaction to a serous injection ....(i was onky one week out of bed before assessment) Anyway I was declined mobility yet I had standard rate previous to that and had less problems. I phoned to request reconsideration was told I had 28 days to get medical evidence in yet was sent a letter withing 7 days saying i hadnt told them what sections i wanted reconsidered so had based it on.previous info (from 3 yr previous) and I was declined it.

    I had right to appeal but was already dealing with stress of my dad being ill and then my mum.fell and broke.her arm so rhat was more stress worrying about her and trying to be there for her so my appeal went right to priority list.

    Don't get me.wrong I'd rather be fit and able I'm. Now referred to physio podiatry AND biometrics all for how can PIP possibly say I'm better than I was 3 yrs ago??

    Hopefully you will get a straightforward renewal but just be prepared that it ddoesn't happen very often.

  • Hi Liz

    Saw your reply to Georgie about pip. When you got the award it should have stated how long for . When that time is up they will write to you and ask you to re-apply. Hope that's helpful. X

  • hi Misty14

    Yes I know that. I got award for 3 years and they will not contact me before March 2018. I am taking nothing for granted. Every doctors/consultant appointment and result about my condition is documented for future reassessment for Pip. As my disability is my balance due to neurological changes in my brain, I can't see much changing as I am steadily getting worse. But by nature I try and have a positive outlook. Sure I do have my moments of despair that I am not the person I was. So I am doing all I can to challenge myself to be happy.

    hugs Liz xo

  • Hi

    I suffer chronic pain and depression and had to appeal ESA and PIP I won both and was awarded a low rate mobility as well. I am so grateful for the money I get as I have no other choices available to me. I do get down a lot but try and focus on how lucky I am charity shops and EBay help my budget as do offers shopping online. I also plan meals and have a change jar. If in want something big I save. I always worked in sales jobs business electric and gas for a big company I earned a lot. I will never be able to be financially well off but I have my life a roof over my head food in my cupboards and people who love me. Acceptance and adjustment was hard in the early days it got easier. Take each day on its own value bad day today aim for better tomorrow be realistic with your goals for yourself little things at at a time. Good luck

  • Hi... I must say I'm very upset I've tried everything to get pip but had no joy what's so ever I've even been to the court stage and still got turned down and I'm 49 female worked all my life in top paid jobs until 15months ago when I started to fall asleep everywhere and I mean everywhere I will give you a few examples..

    Walking down the street.

    Serving customers.

    Shopping in a supermarket.

    On the loo.

    Sat in the doctors waiting room.

    Having my nails painted.

    At a concert and missed all of it.

    Yeah these are just a few examples due to me falling asleep and it just happens I don't feel sleepy I just go like I have passed out and while this happens I could wet myself or sometimes even soil myself and this is very upsetting as this is not me so I went on this sick from work and was waiting to see a sleep specialist but due to the lists being quite long my employer sent me to see one of their doctors and they finished me on Ill health grounds so then I tried for other benefits and got turned down and got told try for pip been refused 2 times now I get no money what's so ever this has made me feel very depressed and very stressed out as I feel as though I'm putting alot of stress onto my husband as he works full time but due me not bringing anything at all into the house to keep a roof over heads he now works 7 days a week. Now 4 months ago I got diagnosed with fibromyalgia and my sleep problems have still not been diagnosed with what it is but they are saying narcolepsy and still going though tests and going on waiting lists to have tests done it all takes time. But still cannot get pip so if anyone can help it would be greathe cause due to money being very very tight now it's putting alot of stress on my marrage and I feel as though it's all my fault I've been married for over 25 years and feel as though it's all my fault even 20.00 a week would be better than nothing I have to pay for my prescriptions my dental care and my glasses I have already cancelled 2 appointments with the dentist cause I feel guilty cause we can't afford it is have been told that if I cancelled the next one I will be struck off and will no longer have a dentist.. sorry for the very long post but it's the only way I could explain myself...

  • hello green513 you can apply for an HC2. You get the application form at doctors, dentist or opticians. The form can be for all the family, it is to help low income families with costs or it can be a complete exemption of costs. I have one for myself. It last for a year at a time. Hope this helps.

    Liz xo

  • She probably won't be able to get if her husband earns over £16/17 grand a year. But can apply for prepayment certificate (nhs) which is worth considering if you get more than 2 prescriptions a month but would still have to pay for dental and opticians.

  • I already have one of these...ive had it for years

  • can you not claim ESA?

  • Nope.....even went to the court stage and got knocked back.....

  • That is so bad!! I couldn't claim ESA on income based because of my husbands earnings, but because I'd always worked up till becoming ill got it through my national insurance contributions. Because I get this I still get NI stamp toward pension for retirement age. So not only is it making it hard for you now but you may not be able to claim state pension when time comes. Don't know how long you've been out of work and I know how awful it just thinking about having to fill out forms to make claims but I'd encourage you to try again and tell them to look at your NI contributions from all your years at work.

  • Get husband to register as your family unpaid Carer with GP ,consultants and social services(Adult Care) He can join Carers UK(free).They have a good website and advice line Problem is if you dont shout to get what you are entitiled to and dont know what is available, you dont get.If you cant do something sometimes-you say you cant do it, as all these assessments are 'tick box'.

    How do you know you fall asleep or could you be passing out with a Transient Ischaemic attack or TIA Has any one observed it. It can last only a minute or two.TIA is better understood and is classed as a minor stroke due to the blood not flowing properly and can be treated.

    Keep a detailed diary of what happens day to day.try and keep going, be positive as possible and good luck

  • You are having a very hard time, Greeny. I feel so very sorry for the situation in which you find yourself. I have no advice to offer you other than to hang in there and persist. There are some advocacy groups around and legal advice is available - although I am not sure how widely.

    One of the many problems with this government 's so-called reforms is that they are, in fact, counter-productive as people who are receiving benefits will be extremely reluctant to return to work if they ever improve as they will anticipate serious problems of ever getting it reinstated. In the meantime there are huge numbers of people like you who can't get the help they desperately need. It is really quite immoral! Not that it helps you at all.

    I am fortunate, I suppose, that since I was over 65 and receiving the higher mobility rate of DLA when the rules changed, I have stayed on DLA, which in turn means I kept my right to a car on the Motability scheme. It is a tremendous help as my mobility is limited. (And the pain horrendous)

    I do hope that you manage to access the help you need . Oh, and I assume you have tried the Citizens Advice office?


  • Hi jen.... no I've not tried the citizens advice due to you have to go first thing in a morning and sit and wait in a queue... my fibromyalgia don't help in a morning and neither does my suspected narcolepsy so mornings are really a no no plus I would need someone to come with me due to this. I'm one of those people who won't ask due to myself respect.... so now your probably thinking oh well it's my own fault then.....but I don't like in conveyancing anyone at all its not right.... I had welfare rights helping me when it went to court and they was brilliant but now I didn't win the lady was in shock and not heard off her since then....I should really pulls my finger out and try again now....thanks for your reply it helps julie ☺

  • I also have fibromyalgia, Julie, and find both mornings and evenings difficult. However. I believe in asking for help if necessary- on the basis that I am always willing to help someone else if I possibly can. There is no shame in needing assistance. Everyone, even the healthiest, needs help once in a while.

    Do contact the person who was helping you previously. She probably feels that it was somehow her fault -or that you blame her - for it not going as planned before.

    We are all struggling together on this site, so none of us judges anyone else for their reactions etc.


  • Have you heard anything back from them since you said you sent your renewal back in December?? I received a letter from PIP around 10th of January saying it needed to be sent back by 1st of February which I thought was a renewal but must of been them needing an update as original claim said I should of been getting PIP till end of January 2018. I received a phone call from them and I'm now getting it till 2021 as everything is in letter says from what I've told them corrisponds with doctors reports. I'd get in contact with them if you've not heard anything just to make sure they recived your renewal. But also like you was very worried they wouldn't award me anything as it's happened in the past with DLA were i was getting it then deemed well enough to not recive it even though my disability had gotten worse.

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