PIP, DLA and AA
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Pip and fibromyalgia

toni1979toni1979 Member Posts: 13 Connected
edited April 2018 in PIP, DLA and AA
Has anyone applied and been successful for getting pip payments and suffer with fibromyalgia?
Thank you; I'm all new to this!

Replies

  • lindadeniselindadenise Member Posts: 302 Pioneering
    I have fibromyalgia along with dystonia and spinal stenosis and inpinged nerve in spine.
    I only got low rate care 
    No mobility but i have done a Mandatory reconsideration.
  • toni1979toni1979 Member Posts: 13 Connected
    Thank you, I've just been reading people's stories and experiences on here, it's truly awful that we are not understood sometimes. I struggle to walk far and sleeping is out of the question. Fingers crossed I'll be ok and get awarded something x
  • lindadeniselindadenise Member Posts: 302 Pioneering
    Yes hope so i am the same under 2 nuerologists for my Dystonia and back cant walk any distance without pain. I feel we are being failed by the DWP they dont seem to know anything about our illnessess. Good luck hope you get something.
  • toni1979toni1979 Member Posts: 13 Connected
    edited April 2018
    Agreed! I hope it all goes ok for you too x
  • debsidoodebsidoo Member Posts: 327 Pioneering
    Hi toni1979
    I have fibromyalgia among other things and my pip application was successful. Please don’t be put off by all the horror stories you read each case is decided on its own merits so provide as much evidence as possible and good luck.
          Debsidoo.x
  • toni1979toni1979 Member Posts: 13 Connected
    Thank you! I will tell them everything and how difficult things are for me and that's all I can do. Really need to work part time as full time is too much but the drop in money scares me so any.thing would help x
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    @debsidoo good to know. I’ve got fibro and am applying for pip. This was diagnosed after I started the process and will be going on my written evidence. What astonishes me is all the other stuff on top of the fibro getting diagnosed. My gp has called my condition chronic pain for years and said no evidence to send me to consultants. So I went to another gp and he said I have fibro with other issues. It’s just the start of being properly diagnosed for me but reading stuff on here has helped me to realise there are other potentially treatable conditions on top of fibro that I’ve just accepted as normal. Every single health issue I have has been a battle for me to get diagnosed. It’s like if it’s labelled then the gp has to refer you on and for some reason mine is reluctant to do so. Happy to hand out meds though. I am not investing in getting pip but I am trying anyway. It’s such a stressful process and it takes a toll on health issues. Thanks and good luck all
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • newons2206newons2206 Member Posts: 2 Listener
    I cannot stress enough what has been said about evidence. I have ME/CFS which is similar to fibromyalgia in how the ‘outside world’ sometimes view it. But I provided evidence from my ME consultant and occupational therapist that I couldn’t work and needed a level of support on a daily basis at home and was awarded both elements at basic rate. Include documentary evidence of how your condition effects you from experts in the field - your fibromyalgia clinic, occ health, counsellor - they should all write to your GP to update them after your appointments and you’re entitled to copies of these at no charge. Also on the day of the assessment get dropped off at the door by a friend, don’t make a superhuman effort to move around, and refuse any rest if it’s too painful and say it’s too painful! Be very clear about what you can and can’t do but don’t try to be brave - they need to see the real you. 
  • newons2206newons2206 Member Posts: 2 Listener
    That should say refuse any TEST not rest
  • shaziershazier Member Posts: 82 Courageous
    Hi.
    I to have fibromyalgia arthritis depression agoraphobia  along with other conditions and  was awarded enhance rate for living and mobility, When being crossed over from DLA,  i was on the indefinite award but pip is different to dla.
    my cross over was three yrs ago and i have my review coming up in June, im worried sick to,
     reading other cases can scare us to death, i have started reading up things that  i have never done before, i m shocked at some of the storys i have read or listend to, m daughter showed me a clip on you tube from the bbc, i wish i hadnt of watched it now, i went on to look at other stories, some of the stories are disgusting, what im saying is dont concentrate on all the neg stories.

    We know two people having the same condition can affect both of them in different ways..and its based on your own experiences and the difficulties that you have.
    There are some peole that say, well i can do this or that and i have firo or arthritus, dont let people like that put you off. 
    this is your case and how it affects you not what the diagnoses itself

     pip form is all about if you meet the criteria so explain how for example on
      prepring food...if you have difficulties with preparing food to explain the difficulty you have and why...... if  you experience pain need to sit down due to pain or you may get dizzzy when standing to long. if you need assisitance, prompting or someone to prepare food for you, expalin why,
    can you prepare using an aid, how long does it take you, can you do it reliable and saftly and in a resonable timme
    , if you drop things say so , anything that causes you problem with thi activity., if you cut yourself say so .

     if your like me and find it difficult to put your difficulties into sentences ask for help.

    I havent been a member for very lng and very rarley go on the pc but, since joining scope, i have started to use my pc again.
    I cant  type for long periods of time nor can i concentrate for very long so it takes me much longer to than it would before i started with my problems, my spelling is terrible so im cheating and using grammar lol
    As other have said to me, try not to worry say miss stress head here, lol
    thi group is a wonderful group, they make you fell so welcome and that makes it easier to ask for the helpt you need.
    you are amongst friends. 

    Can anyone correct me if i have gotten any thing wrong here and not given the correct advise




  • toni1979toni1979 Member Posts: 13 Connected
    Thank you, that has been very helpful. I came across scope yesterday and I absolutely live all the support so far. I joined a few groups on fb but they're mainly American and things are quite different over there. I'm going to start writing notes and kept a daily diary so I don't forget anything!
    Thanks again x
  • sue66sue66 Member Posts: 124 Pioneering
    Its true if we dwell on all the negative outcome stories then none of us would apply. I must admit ive a sort of already made up my mind its not worth me even trying to get the PIP for M.E.of which i was given higher rate mobility when i applied for DLA like 22 yrs ago because of all the horror stories ive read about people losing their higher rate and their mobility cars with it.  Its always being said about how its not what you have but about how what you have affects you. Why then are people who are clearly finding life very difficult, need help with many things, cant walk far, in pain, feeling depressed, need help with personal things still coming away with 0 points. I have no social worker, under no consultant, not on any medication so my case is going to look very weak when i do get the application to apply for the PIP. . This is why i think why bother. Read from the outset back in 2013 that people with M.E. are one category that are finding it the hardest.  I will actually be glad when its over and done with, the letter comes through and then i will decide. 80% of me is saying dont even bother. Sorry folks but this how i feel this morning. Im just grateful for each morning there's no brown envelope in the post and at least i have state pension to survive on which is more than what some of you have. Losing your DLA, and then not getting PIP losing your cars and being working age must be horrendous and very worrying indeed and i really feel for this category. 
  • AlfieboyAlfieboy Member Posts: 4 Listener
    Please refer to my post regarding the illuminating conversations I have had with my Consultant Neurologist and the Health Professional who conducted my PIP face-to-face consultation.  It's not for the faint hearted I'm afraid…..!
  • iharris85iharris85 Member Posts: 4 Listener
    Hello, I have recently been diagnosed with fibromyalgia by my GP, I am a 33yr old male, who until about a year ago was fit and healthy, I now struggle on a daily basis getting up and down the stairs both at work and at home, walking, standing and even just resting as my legs, knees, hips, feet and ankles give me a great deal of pain. There have been a few occasions where i have needed to shuffle myself up and down the stairs on my bottom, as I haven’t had the strength or the pain has been so bad I am not confident in case I fall. (Which I have done) got the bruises to prove it. I am also finding it hard to drive, as I don’t have the strength to operate the clutch peddle or some this even sometimes change gear. As I don’t always have the strength in my arm/hand to grad and move the gear stick, my GP has given me co-codamol 30mg/500mg to help with the pain, but it’s not helping. I have recently put in my claim for PIP I am yet to hear anything back, I was asked to send off my ID which I have done, can the community give me some advice on the next steps and any general advice on how you live/cope with you fibromyalgia that might help me would be greatly appreciated. Thanks in advance. 
  • toni1979toni1979 Member Posts: 13 Connected
    edited July 2018
    I have suffered the exact same symptoms for the past 2 years. I applied for pip and recently had my assessment and have been awarded nothing! I'm really not happy with their decision so am appealing it. I don't think the descriptors fit in with our condition. Yes I check walk 200 metres but in absolute agony!! I don't think it's a fair way of judging us at all. I've had to stop working as a teacher recently and taken a desk job and less hours which os also a massive pay cut. I'm really struggling... I hope u have better luck than me x
  • sue66sue66 Member Posts: 124 Pioneering
    toni1979 said:
    I have suffered the exact same symptoms for the past 2 years. I applied for pip and recently had my assessment and have been awarded nothing! I'm really not happy with their decision so am appealing it. I don't think the descriptors fit in with our condition. Yes I check walk 200 metres but in absolute agony!! I don't think it's a fair way of judging us at all. I've had to stop working as a teacher recently and taken a desk job and less hours which os also a massive pay cut. I'm really struggling... I hope u have better luck than me x
    Your so right there Toni the descriptors dont fit  with our condition, Im dreading having to apply for the PIP, on burrowed time me now, at least i dont have to worry about struggling to work as 67 and have a small state pension coming in. i really feel for all those of still working age and fail to get the points needed to have to sort of income. and forced to work in pain all day x
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    The rule for walking is how far can you walk WITHOUT PAIN.  Yes, you may be able to walk farther than 20m or 50m IN PAIN but you are not obliged to 'walk through pain'.

    In other words, if you can't walk farther than 20m before the pain, or stiffness or fatigue, starts then you should qualify for 12 points PIP mobility.

    Yes, we might be able to do things but we have to be able to do them RELIABLY as well. Have a look at the reliability criteria on the Disability Rights UK site.
  • toni1979toni1979 Member Posts: 13 Connected
    Thanks for this. I will have a look now! X
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    I am becoming aware through this forum that you can do certain things that may improve your chances of getting pip etc when you have the evidence to support how it is affecting your daily life with your health issues. 1. You should  be looking for help and getting help with the descriptors you say you have issues with. 2. You
    should be attending all clinics etc available as regularly as possible so that you are being proactive and are able to ask for recent factual reports to back this up.3. You should consider keeping a diary of how your issues are affecting you daily, again as evidence. 4. You should try to build a rapport with the same doctors if possible so that they will know you and be able to report accuretely. There is probably lots more but thsts for starters. I only got pip recently and it was more for mental health and how it affects my moblity. I got zero for daily living although I have chronic pain now fibro. I only got 2 years award backdated nearly one so I could be reviewed again shortly which is very stressful.  But with the knowledge im gettting here, I can be better prepared hopefully. Good luck.
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • YadnadYadnad Member - under moderation Posts: 2,862 Disability Gamechanger
    Matilda said:
    The rule for walking is how far can you walk WITHOUT PAIN.  Yes, you may be able to walk farther than 20m or 50m IN PAIN but you are not obliged to 'walk through pain'.

    In other words, if you can't walk farther than 20m before the pain, or stiffness or fatigue, starts then you should qualify for 12 points PIP mobility.

    Yes, we might be able to do things but we have to be able to do them RELIABLY as well. Have a look at the reliability criteria on the Disability Rights UK site.
    That is why I made a recent post about the distance I walked - just under a mile. Yet when I was receiving PIP I was awarded 12 points for mobility.

    It was how I walked, what happened when I walked and what happened after I had walked that distance.


  • YadnadYadnad Member - under moderation Posts: 2,862 Disability Gamechanger
    debbiedo49 said: 
    1. You should  be looking for help and getting help with the descriptors you say you have issues with. 
    2. You should be attending all clinics etc available as regularly as possible so that you are being proactive and are able to ask for recent factual reports to back this up.
    3. You should consider keeping a diary of how your issues are affecting you daily, again as evidence. 
    4. You should try to build a rapport with the same doctors if possible so that they will know you and be able to report accuretely. 
    1. Impractical in the main
    2. Most long term disabled no longer attend clinics as there is nothing further that can be done.
    3. Good idea, but would the DWP take it at face value or suspect that there may well be 'extras' thrown in for good measure.
    4. GP's are extremely busy and todays surgeries are not for those who go in regularly just to keep the GP up to date. I go when I feel the need for help which maybe once a year or once every couple of years. Seeing the same GP is almost impossible.

  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    @yadnad perhaps I should have added that I meant for when it comes to tribunal, as was the case with me. You have to fight for every piece of help you can get despite the serious lack of resources. You can make the choice to do this or not. I know how bad it can be believe me but if I want to get pip at review I will be trying to do this.
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • YadnadYadnad Member - under moderation Posts: 2,862 Disability Gamechanger
    @yadnad perhaps I should have added that I meant for when it comes to tribunal, as was the case with me. You have to fight for every piece of help you can get despite the serious lack of resources. You can make the choice to do this or not. I know how bad it can be believe me but if I want to get pip at review I will be trying to do this.
    You have to do what you want to do. 
    But the last thing I would do is to bombard my overworked GP with regular visits to tell him 'nothing has changed so this is an update'.
    I do know how bad it is and because of that I refused to play anymore of their games with PIP. I'm too old and too ill to put up with it any longer.


  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    @Yadnad so please could you offer constructive sdvice for those people who would like to try to get the benefits they are entitled to rather than put them off? You may not win at first with dwp etc but you just might with tribunals.Some of us have to fight on.
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    71% of tribunal appeals win - so it's definitely worth appealing as long as you're confident that any current award is safe from reduction or removal.
  • littleruthie123littleruthie123 Member Posts: 490 Pioneering
    HI got fybro .I think the difficulty is it can be a fluctuate. I had my home visit and had too be honest and say I was having a good day .even though I was still in pain .I explained that further on in the weak tasks washing showering become very difficult .she did say she thought I'd explained ithat well as many don't. I was also honest and said I went too a cancer support centre once a week!.but that's it .not sure if that will be used against me .will see .will let you no .but yes you can define get p.I. P for fybromalagia. Good luck x
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    To qualify for PIP your disabilities have to affect you only 50% of the time, i.e. at least four days out of seven.
  • YadnadYadnad Member - under moderation Posts: 2,862 Disability Gamechanger
    Matilda said:
    71% of tribunal appeals win - so it's definitely worth appealing as long as you're confident that any current award is safe from reduction or removal.
    Absolutely!! If you have the strength and stamina go for it.

    As you say, any appeal carries a risk. and to this end you must be certain that the current award is safe.

  • YadnadYadnad Member - under moderation Posts: 2,862 Disability Gamechanger
    Matilda said:
    To qualify for PIP your disabilities have to affect you only 50% of the time, i.e. at least four days out of seven.
    Which is something that the claimant should be prepared to convince is the case. To be honest that rule is extremely difficult to substantiate. 
    It has to be a minimum of 4 out of 7 every day. I can't think of a situation that 4 out of 7 every week actually would happen. Yes it may be 3 out 7 some weeks then 5 out of seven for a week or two.
  • littleruthie123littleruthie123 Member Posts: 490 Pioneering
    Well I've just had my asseser report and looks like enhanced so worked for me !lol
  • littleruthie123littleruthie123 Member Posts: 490 Pioneering
    Yrs matilde your right .I have other things as well but mostly went on my fybromalagia and fatigue x
  • MatildaMatilda Member Posts: 2,616 Disability Gamechanger
    @littleruthie123

    Congrats on your good report.
  • littleruthie123littleruthie123 Member Posts: 490 Pioneering
    Thank you matilde I pray the dwp go by the report .fingers crossed .I've had 3 reviews now both home visits worked out well.going too the assessment centre left me short of points .and dident have the fight in me at the time .so praying it adds up this time x
  • littleruthie123littleruthie123 Member Posts: 490 Pioneering
    Just had good read through report .even though points are good .she's really not a knowledge my mental health anxiety depression complex p.t.s.d and agraphobia why do they do that!.it really gets too me .can you give feedback on report?
  • iharris85iharris85 Member Posts: 4 Listener
    I had my assessment in september and the assessor seemed all understanding and concern he even helped me into and out the chair. BUT in my letter he said i was able to move unaided and when informally observed i was walking at a normal pace without any impairment. i sent my form back with a letter stating i didn't agree, but i am yet to hear anything. i keep trying to call them but i am always on hold for about 30 mins.... I am fed up. i can't walk or stand, and i cant even drive as i don't have enough strength in my left leg to push the clutch...
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    iharris85 said:
    I had my assessment in september and the assessor seemed all understanding and concern he even helped me into and out the chair. BUT in my letter he said i was able to move unaided and when informally observed i was walking at a normal pace without any impairment. i sent my form back with a letter stating i didn't agree, but i am yet to hear anything. i keep trying to call them but i am always on hold for about 30 mins.... I am fed up. i can't walk or stand, and i cant even drive as i don't have enough strength in my left leg to push the clutch...
    Do you mean you requested a Mandatory reconsideration? If so when did you request this?

    Not being able to drive because you can't use the clutch won't score you any points for PIP, i'm afraid. They'll most likely advise you to drive an automatic.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • iharris85iharris85 Member Posts: 4 Listener
    edited January 2019
    yes thats right I requested this back in october 2018. when i went to the assessment i was having a bad day my stammer was terrible, my mobility was was poor, my mum has to hold me up and walk slowly with me. the assessor seemed more concerned about his private life talking about his cats and other such things than listening to me or taking notice.  I have just come off the phone from the DWP PIP line and they have said I am to wait for the Mandatory reconsideration to be reviewed and I'll hear back in due course.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    There's no timescales for MR decisions but that's an awful long time to wait. Hopefully you'll receive a decision soon.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • YadnadYadnad Member - under moderation Posts: 2,862 Disability Gamechanger
    edited January 2019
    iharris85 said:
    I had my assessment in september and the assessor seemed all understanding and concern he even helped me into and out the chair. BUT in my letter he said i was able to move unaided and when informally observed i was walking at a normal pace without any impairment. i sent my form back with a letter stating i didn't agree, but i am yet to hear anything. i keep trying to call them but i am always on hold for about 30 mins.... I am fed up. i can't walk or stand, and i cant even drive as i don't have enough strength in my left leg to push the clutch...
    Do you mean you requested a Mandatory reconsideration? If so when did you request this?

    Not being able to drive because you can't use the clutch won't score you any points for PIP, i'm afraid. They'll most likely advise you to drive an automatic.
    And even admitting that you do drive is likely to cause further problems given the mental awareness and physical abilities that you must have in order to drive any type of car, automatic or manual.

    I went out over last weekend with my son in law. I was absolutely amazed of what he had to do with his car even before he set off. It was just like what you see on the television inside an aeroplane cockpit!! Seriously he had to set up the suspension, ride height, engine power levels, which wheels he wanted to be powered  etc all on the screen in front. Then the satmap, then the internet hotspot something. How people now manage to drive is beyond me. You will be needing a pilot's licence next!
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Yadnad said:

    Seriously he had to set up the suspension, ride height, engine power levels, which wheels he wanted to be powered  etc all on the screen in front. Then the satmap, then the internet hotspot something. How people now manage to drive is beyond me. You will be needing a pilot's licence next!
    Not every car has this level of spec, mine certainly doesn't!! I have a physical disability and drive an automatic car, this has never gone against me.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • YadnadYadnad Member - under moderation Posts: 2,862 Disability Gamechanger
    Yadnad said:

    Seriously he had to set up the suspension, ride height, engine power levels, which wheels he wanted to be powered  etc all on the screen in front. Then the satmap, then the internet hotspot something. How people now manage to drive is beyond me. You will be needing a pilot's licence next!
    Not every car has this level of spec, mine certainly doesn't!! I have a physical disability and drive an automatic car, this has never gone against me.
    There is a lot of speculation at the moment it seems on claiming for certain levels of impact that would normally rule out being able to drive a car. The DWP seem to be going for this in a big way. The same is also happening where PIP claimants are also claiming to be carers.
    Why else would my last assessor make a big thing about me still being allowed to obtain my driving licence and to continue driving.
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