Severe pain and exhaustion: Hi everyone... - Fibromyalgia Acti...

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Severe pain and exhaustion

deb26bie profile image

Hi everyone hope you are all keeping well. I applied for PIP and had my assessment over the phone,I had everything in front of me ready for the phone call. After an hour of the assessment and feeling totally mentally and physically exhausted it was over. I then had a letter saying I was not getting it. I have been signed off work since January,I struggle to walk and sit. I do not leave the house without having someone with me as I have had a few falls outside as well as indoors. They informed me that I am walking to and from work everyday!!!!!!! I have appealed and am waiting to hear back from them. I cannot do everyday things as it exhausts me and the pain in my back,legs,hips and knees is unbearable and I feel so embarrassed about having to ask for help eg....washing and dressing,preparing food,cooking,housework,paying bills its degrading for me. They had said that I had not informed the 'falls team' does anyone know who they are coz I don't. I have a walking stick that I have to use everyday in and around the house and outside. Trying to get up the stairs to the bathroom without having an accident is near on impossible. I feel I have had enough now with it all like the brain fog,pain,depression not being able to grip properly. Is there a light at the end of the tunnel????,coz I really hope so x

54 Replies

Hi sorry to hear .Hopefully there is light at end of tunnel for you

If you did not say those words

Id make 2 complaints 1 against dwp and 1 against the assessor if you have the energy

Its the only way to stop them doing this

And it should have a positive in your case they will look thorough.

Booe your pain eases a bit for you soon

deb26bie profile image
deb26bie in reply to Ajay575

Hi Ajay575 my son helped me to do the mandatory reconsideration as almost everything they disallowed me on was wrong,but we will see what comes of it but my son won't let it stop as he knows what I go through everyday. It annoys me when people get full daily living and mobility and don't need it. Thank you for your reply ,take care 🙂

Ohh love, i here every word you are saying! I am the same, sink your teeth in and dont let go,, they knocked me back, i went berserk, they have no idea whatsoever, i wish these healthcare professionals would get their heads out of their arses, i wish i could dump my symptoms onto them for a few weeks and i bet you wish that too, i feel your pain love, i hope you get things sorted xWhat meds do you take?

deb26bie profile image
deb26bie in reply to MagsMac

Hi I'm on Amitriptiline Gabapentin Sertraline Moloxicam(I think that's how you spell it) and Omeprazole. There's a lot of times I get food stuck in my throat and had to bang so someone can hear me,it's really frightening. You are right let them be in my shoes even for a day then they would understand and I think these assessors are not qualified to do the job they do..... rant over hope you have a chilled weekend x

Woodhouse16 profile image
Woodhouse16 in reply to MagsMac

Well said they wouldn't cope with a day in our lives they don't have a clue of our daily battles

Hi Debbie my dealings with pips and capita are exactly the same you are not alone. They totally ignored what I said in my assessment it was like someone else's report, they didn't have my medical notes. It's now been 10 months since I have applied for PIPS and been refused a mandatory reconsideration so I am at the appeal stage, so I have worked since I was 12 years of age joined the royal navy when I was 16 never been on benefits or out of work, in pain and fatigue and depression and just need help with my daily struggle in life having to beg which is very degrading.DON'T GIVE UP!

Morning,it makes me feel like I have failed as a mum and a wife. People that don't have it or know someone with it have no idea what it is like to try and walk in our shoes.

The only people who have failed is PIPS and CAPITA in not recognising our difficulties we have to deal with on a daily basis.

I don’t think that PIPS and CAPITA have failed. I think they are doing exactly what this government wants, restricting costs to the government. It happens far too often for it to be anything other than deliberate and I think they know that they are losing genuine claimants by their tactics of refusing (genuine qualifying) claimants who are already struggling to cope with life let alone the debilitating stress that comes with battling against a deaf and blind bureaucracy. Wishing you strength and luck and hope your symptoms improve and you get your rightful benefits. Shame on them.

👏👏👏👏

I was persuaded to turn to Navy charities for help. SSAFA have a support team, as does the British Legion, which can help you with claims, etc. I was embarrassed at first, but SO grateful now as they were able to show part of the cause dated back to my time in the Navy. You served your country then. It's time you got a little help in return. Also, the whole time I was appealing to the DWP, I felt as if they judged me a liar. As an ex-Service person, you will find yourself trusted. It was SUCH a relief to be believed. I hope things work out for you.Best wishes from another fish-head!,

dee

Ex HMS superb

I don't suppose you were old enough to be in Superb in 1981?

What is Superb and I would have been a teenager in 1981

A royal navy submarine

Joined as a baby cook Feb 91- may 94 what a blast

Sorry to hear your plight, as we know most of the assessors lie, because am sure that is what their companies encourage them to do, when l use to walk as a district nurse before my conditions got worse, falls clinic is a clinic we use to refer our elderly patients who have had falls while walking so that they can be given hip protective pads not to fracture their hips when they fall( this is over 14years ago) most GP’s don’t know about falls clinic and so don’t refer their patients, the assessor used that as an excuse to deny you, which is wrong, don’t give up, appeal and follow it through l did and won against them, l dread my next assessment but l hope to fight it through also if need be, though it is a draining experience, get someone who knows and sees how your condition affects you to also write as part of your evidence. So sorry, goodluck

deb26bie profile image
deb26bie in reply to 030973

Morning, yes you are right they do lie as they said I walk to work everyday and I haven't worked since the beginning of the year. My son is very good at putting words across in a way that I can't do but he won't let it go for me. Thank you for informing me of who the "falls team" are as I did not have a clue.

This is awful. These damn assessors. I am one of the very grateful fortunate one's as I got full PIP for both parts and I am massively grateful. I was truly dreading my assessment and became more unwell because of anxiety of the wait for both the assessment and the outcome. Definitely appeal. My friend was utterly exhausted by the entire process and after being awarded zero she literally took to her bed, ended up with a DVT and it took a fantastic new GP to motivate her to appeal...which she did and she now has the full PIP award.

But......its a complete disgrace the way the system is outsourced to the businesses who just want to make more money!

Keep.going...xx

Yassytina profile image
YassytinaFMA UK Volunteer

Hello, I am sorry to read of your struggle , keep plugging away , some really helpful advice from other s ,like people say if they lived in your shoes they might understand more, good luck , keep us updated xx

I used to get DLA but had to go to appeal stage to get it. I even had hospital staff attend the hearing and a doctor at my surgery got into trouble, may have actually been sacked because of lies they wrote in my report that were easily proved false, I don't know but their name was taken off the surgeries list.

When the system moved to PIP everything was taken away after a reassessment. I knew it would be because they only asked questions that were impossible to answer in the way that would remove points. I couldn't fight it, I went through hell last time I just couldn't bear it, especially if I'd have to keep going through it year after year.

So thank you for fighting your case, I hate the fact they've won and me not fighting will make them view disabilities negatively, we need people like you who fight!

deb26bie profile image
deb26bie in reply to Cat00

Thank you 😊

Hi did you submit medical reports from your GP about your conditions as the DWP wont chase for them. Big hugs and take care

deb26bie profile image
deb26bie in reply to sueshepy

I had given them names and numbers of who I have seen eg back specialists and physio but i am still waiting to see the pain clinic.

Woodhouse16 profile image
Woodhouse16 in reply to deb26bie

That's another thing I'm glad you mentioned still waiting to see pain clinic as I am too my first appt was March 31st 2020! Oh I think that's when we had our first lock down wasn't it lol. Don't these assessors know that all face to face appts clinics ect got rightly so at the time canceled so now we are facing months and months of backlogs on these things and that only people with life threatening conditions rightly so again are getting the treatments they need. People like us are still having to wait so no we probably some of us don't have the appropriate ammunition if you like to put forward that doesn't mean to say we suffer any less does it!

sueshepy profile image
sueshepy in reply to deb26bie

You really need to get the reports and submit to the DWP as the DWP rarely contact GPs or anyone else. I have PIP and I submitted many reports of the conditions I have. The assessor gave me Nil points so I submitted an MR and I awas awarded 10 points within 2 weeks as DWP could not argue against the medical reports. I still appealed and the Judges enhanced the points and I did not go to Court. x

Farmerboy profile image
Farmerboy in reply to sueshepy

Your right the DWP or the assessment company will not contact the claimants health professionals unless they feel they need to. It’s up to the claimants to supply all the medical information and evidence required as asked for on the PIP application form. Having a GP write a letter on your behalf confirming your medications and medical conditions is pointless if you have had hospital assessments tests diagnosis then you should have confirmation letters that should be copied and sent with the application form. The GP will not know only be what a person tells them how their conditions affects their daily lives unless they are with you 24/7.

I think that you are probably wrong about GP letters accompanying your assessment. AgeUK arranged my assessment. They sent someone from the DWP (I think) to my house where it was done. I failed my first assessment, of course. And I was going to give up but my GP insisted that I should do it again and that she would write a letter of support. I did all this and my application was successful this time and I have been given the full amount of assistance. Try to get help filling out your form. If eligible, ask AgeUK for help. I think that the CAB can also help with this. Don't give up yet.

sueshepy profile image
sueshepy in reply to Trappedmoth

Hi I would have thought you got the points from the letter your GP wrote up

Trappedmoth profile image
Trappedmoth in reply to sueshepy

Well, that's not the case. The person sent to my house to fill out the forms knew how to answer the questions. She was excellent.

sueshepy profile image
sueshepy in reply to Trappedmoth

Oh I quite agree that CAB are excellent and it is how you complete the answers as to how your disability affects you and the things that you cannot do any more.

What I am saying by submitting medical evidence is confirming your illnesses and how this affects you in day to day living.

Hi, sorry to hear about this but keep going with it, have you gave them doctors/specialist reports or diagnosis proof as they won’t go by just what you tell them, it can be a long process but it’s worth it in the end, good luck x

So sad and angry to hear your story. These PIP Assessments over the telephone are hard enough to deal with and yours gave you a negative reply. It doesn't surprise me. The system is so wrong. It should be scrapped and a more caring one in place but if you believe in flying pigs that will be the day that happens.

Hi Debbie I have my pip assessment over the phone at 10.00 and after reading what you have been through I’m scared and very nervous that there going to say no too.They don’t know what pain we are going through, hope you get sorted and good luck

Persevere I did but know how extremely waring and exhausting that is as been through the same myself.

deb26bie profile image
deb26bie in reply to Woodhouse16

I will its exhausting mentally and I feel very stressed and anxious its horrible x

This happens many times mainly because claimants assume that they are eligible for PIP and apply with little supporting information or evidence. Both Ajay and I will advise claimants to take a self test of PIP reading through the descriptors questions and answer brutally honestly and if the results are favourable then as long as you have the supporting information and evidence your most likely be awarded PIP. I have had 3 PIP assessments 2 face to face and I was awarded the correct award each time I didn’t expect an higher award and felt I was assessed fairly and correctly. On reading my assessment reports I was surprised on how much information they write about myself from observations only. On my first assessment the receptionist offered me a cup of tea or coffee, I declined knowing from my own observations that there was a camera in each corner of the room and had I carried a cup and saucer in the waiting area this would have been used against me in the assessment report. At my third assessment over the phone the assessor assumed or Pre’s that as I used mobility scooters and drove an automatic car I should be able to cope manage the descriptors. On receiving my assessment report my award would remain the same so having nearly 8 weeks before my award letter I produced my MR ready to sent a 10 page A4 printed MR once I received my award letter. I phoned the DWP informing them I was requesting a mandatory reconsideration, I was offered an over the phone conversation but I declined and sent my MR recorded delivery. I waited a few days phoned to make sure they had received it and was informed yes it was being uploaded onto their system. About 3 later I received my new updated award letter.

But what happens if you don't understand all of this stuff you've said about? Reading your article you might as well have been writing it in a foreign language and I mean that personally to me as I have difficulties knowing what things mean as in digesting things in plus live alone with no one to help me understand what's required how I go about it ect. I've had this problem all my life now being over 60 and find all of today's requirements on issues like this just totally confusing and makes my confusion even worse which makes me totally switch off..

If you can't understand the best place to go if a friend or trusted neighbour are not available to help is Citizens Advice Centre. These maybe by appointment only once initial interview has taken place. Doing the o line PIP assessment will have all the questions about the PIP descriptiors.

Ring up AgeUK. Explain your situation and ask for help. Ask them, if possible, to arrange for the assessment to be done at your house. That worked really well for me. They sent a very nice and well-informed woman who interviewed me and filled out the forms. She knew a lot about fibro. All I had to do was answer questions and sign the form. Also, ask your GP for a letter of support. Try to be positive, and good luck.

It's absolutely disgusting the lack of recognition empathy and understanding we get with this debilitating extremely painful chronic illness of fibromyalgia!!. Do these people honestly think we relish in feeling this way constantly with no let up with many of us suffering this for numerous amount of years!!.. it changes the person you were before this dreadful illness struck and with no known cure not to mention the things you can no longer do but those you can causing extreme pain also not knowing when or how in every day its going to be at its worst it is so unpredictable!.. how it makes my blood boil how now people who have suffered covid and don't get me wrong I do sympathise with them not to mention the unacceptable deaths its caused but those suffering from long covid are experiencing most of our symptoms we've had for years but without empathy and recognition for it!!.. I would love to see us being noticed out there by the daily battles we have to endure and be treated with some understanding and not be made to feel like we don't deserve some help financially ect.

Well said 👏👏👏👏👏👏

I did get on my soapbox there didn't I lol not physically of course as you will know that's pretty much impossible for us! But that aside we should get more recognition be treated with more understanding dignity ect as with myself and feel the same way about alot of people I've read about with this illness is that it's changed our lifestyles completely and what we could do before this to what we can do now is an entirely different matter. I used to pride myself on having a high pain threshold I was until recently a self employed domestic cleaner and living alone had to work the amount I did to pay all of my bills myself ect but have worked with cracked ribs moving furniture lifting hoovers upstairs ect all with 2 cracked ribs because if I didn't work there was no money coming in so grit my teeth through that I'm not afraid of hard work or should I say I wasn't until this illness hit me like being run over by a steamroller lol. Also before that I used to go to the gym and do a body pump class twice a week so to go from being pretty active to how I am now has been life changing so makes my blood boil when these assessors ect do not give you any understanding hope or dignity to carry on the best you can with financial help too!!..

I do think that the government are in breach of their own laws the EQUALITY ACT 2010

👍👏

Hi my names Lynn I applied for esa then pip before my fibromyalgia diagnosis. Most ppl get refused and have to appeal then possible take it to tribunal but I believe and someone who deals with and helps clients apply ect told me that majority of people get it when they appeal or at worst take it to mandatory reconsideration or tribunal they get it. Sorry for long message government basically refuse people's first application hoping they will give up up on first try as I did once but now on Pip and ESA I hope this helps. Ps also hope 🙏🏻 you start getting some good day's virtual hug 🫂 and sending healing vibes your way Deb.

Hi Lynn thank you for that reassurance x

Hi deb26bie What you said with your pains are very much alike with my self but I did get pip but I don’t want it!!! I just want to be well so I can work again. We are made to be like beggars and this is so wrong. I hope you can find the strength in side to keep fighting and appeal the decision as like I said before life’s hard for us and you do deserve this just keep going and I’m sure this will be payed back dated. Please listen to the nice people on this site as they make a lot of sense with hearts ❤️ And understanding. If there’s anything I can help you with please message me. I’m new on here and have come a long way listing to kind people who no what this is like for us. Love Dukes xx

Hi deb26bie, I feel for you. Had my PIP Review on Monday 01st November, and on Wednesday 03rd November, DWP sent me a SMS Text, saying that they received the Written Report from Capita, and that I should receive a letter from them, once a decision has been made, which is currently 8-weeks. My Sister suggestion I take a look on the following website “fightback4justice.co.uk” . They helped her out, when she felt that she was wrongfully dismissed, due to, amongst other things, having MS.

I must admit, although it cost me £11:99 pcm, there was a wealth of information that was very useful to me.

I’m not sure how many people know this, but it is strongly advised that anybody who attends a PIP assessment, and possibly any other assessment for that matter, telephones CAPITA when they receive their Appointment Letter, and requests the interview to be RECORDED. So I requested this, and so there couldn’t be any way the assessor could complete the form, with information that I didn’t say (and with things I DID-say).

It’s great that your SON is helping you out, as so many young people get nothing but negatives and getting blamed for everything bad that happens. Your SON sounds an awesome guy, it’s good you have him to help you, and that HE WANTS to help you.

Take care deb26bie - bye-4-now :) 👍

My son is just amazing as whenever there is a form to fill out or a letter to read he will call in on his way home from work and read it all through and tell you what's going on. He said that they should have assessed me at home not over the phone so they could see how I struggle on a daily basis and that I am now a completely different mum to what I was before I had FM and OA, but knowing that all 5 of my children are all there at different times for me makes me know that I am loved and not a burden to them x

Hi Deb I can only say I feel your pain , I could have written your story .

I don’t know what Falls Team is either .

I don’t know if there is any light at the end of the tunnel , for now it’s dark on some days dimly lit.

To anyone else I look fine , I wear the sunflower lanyard if I remember as we have a hidden disability .

On a very good day I can go out to dinner or someplace with a friend or family , but hidden in that what they don’t see is I sit down frequently, then I may have a leg shake while sitting & the next two three four days will be bad days , I’ve gone a bad day trying to hide my pain , suffering in silence because I’m embarrassed, because I’m fed up missing out but oh my do I pay the price for it . I spoke to my physio he said ‘ you have a choice , and if you chose to go out to do something nice you know you will have hangover pain ‘ so true

so chose carefully , well you have to look ahead in case you have a hospital or doctors appointment because you know if you chose to go out because also including the thought ‘have to go out for your mental health’ you have to remember how many days you may have to be at home to accomplish this one day of gentle frivolous activity .

I’m recently diagnosed , have been signed off for almost two years , don’t go out unless I’m with a friend /family because I have fallen inside & out , and in case my back goes into spasm & I can’t move.Let alone I may have a panic attack. Have put on weight as not walking at all or very far with my little dog , her main exercise now is running across to any one of my neighbours to say hello because she probably bored being inside with me . I have trouble dressing , cannot wear a bra as can’t put my arms behind to put it on , unless I cause myself to have a piercing pain going down my arm that will last , well who knows how long?

I also applied for PIP & had a health assessment over the phone & my best friend was on the line too In case I forgot what to say or ask a question that I may miss , afterwards feeling sick , shaking , upset & very drained of any energy I may of been saving to lift the saucepan onto the hob . . And yes , you’ve guessed it I was rejected too. My condition is ongoing , I have letters not received as yet , from a surgeon & physiotherapist to prove my diagnosis of fibromyalgia, I say prove as it’s like I’m not telling the truth , I wish I wasn’t because this pain is unbearable & I wouldn’t wish it upon anyone.

My chronic back pain & oesteoarthiritus is also ongoing more letters to be received from results of the third MRI this year. Unfortunately I suffer depression , anxiety & panic attacks also. A great combination but all to qualify you would think for PIP .

I did get another call from someone saying they were an assessor asked me a few questions this time with no one to help me and I can’t even think if it was pip or dwp but anyways he was calling from Belfast again no video call or face to face assessment.

Albeit I heard someone sitting waiting in the job centre for the disabled lift to take them to their health assessment!

I walked into the job centre the other day because they called me for an appointment, not my usual over the phone call.

When I got to them I was seen by a very good person who on hearing my case believed me , his sister has fibromyalgia it made it easier to talk about although I did cry , I think with relief . I arrived walking with a fancy walking stick so as not to look old fashioned with just a plain one as I’d seen people around with them , because that day was a really bad day , & a trolley (like what your nanna would have) but now in fashion , because I could not carry the amount of paperwork that I went with for proof for the DWP the section of Universal Credit that is a separate department & nothing is known of it from your work coach . He asked me why I was there I said I’d been called in , disregarding the fact that I also have a fit note until December . He spoke to his manager , was very helpful , said I shouldn’t be having to come in in my condition & booked me a telephone consult with my actual work coach because whoever booked this one made a mistake as he was shocked by my arrival some 60 minutes earlier . Yes I do ramble sometimes but I’m trying to make a point .

They have certainly made a mistake & im genuine , I cannot sleep tonight as I’m in so much pain , I’m sorry but how can you gauge that over the phone not even a video call ,they can’t see you wincing at each breath you take or shuffle as you try to get comfortable. & actually see the paperwork strewn across the table so nothing is overlooked only to find out that piece of information you can’t see in front of you because by now you are panicking & can barely see anything through the tears in your eyes is the one piece at that time that says diagnosis Fibromyalgia, & from your rhemotologist I could of said anything it would not of mattered because I received a standard letter (I was told by my ‘work coach for that day’) saying declined and that I could do some type of work . And do not send any more fit notes ( when before and online I am asked to provide details and keep original in case they need to see it )I beg to differ …… what job would have you 1 day if they were lucky , then have you back 4 days later because you’ve overdone it & youre too tired to move from your bed . One day good three days bad or sometimes one day good two days bad , I could go on but you get my jyst . They would say I was lazy , I would say I wish you had fibromyalgia then you would see how wrong you are .

FYI, this has taken about two hours at least of using a screen pen and my alternate fingers , stopping & flat on a surface because I can’t hold my phone for too long before experiencing the chronic pain we all know about .

My pain now in both legs front traveling to my feet and back up again , my hands to tips of my fingers my neck throbbing pain going down my left arm , my neck to my jaw , I empathise with you all & hope you won’t get too many nights like mine , oh and I’ve taken all my medication.

Take care everyone , keep safe.

I’ve just looked at the time on my phone I correct myself it’s more like 3 hours I don’t expect it will take that long to read .

Hi,OMG it seems like I am looking at what I feel everyday I don't need to say no more,people don't have a clue. There were things that I forgot to put down but you done it for me lol,I feel for you .....have a restful day x

Hi , wow , although we are in pain it’s good to find out we are not the only ones . Just getting frustrated & confused with all the paperwork. Thx & Take care , have a Good day today x

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