Hi everyone.. Do any of you feel since being diagnose with fibro that you now live in a battle ground not only with your illness but with getting help with money?
I hate this illness and as I type this I'm having a bad flare up.. Pain is so intense.. Crying cos I just don't know what to do with myself.. I've seen so many GP's in my surgery it's unreal and they all say the same.. Give me more tablets and go and rest!! I have very bad IBS.. And OCD., and depression but the more GP says to take the more it upsets my IBS etc.. It's like I'm going round in circles..,
tablets =more pain in IBS and rest=going out my mind not being able to deal with my OCD so =my depression..I've had of these for yrs and yet I feel I'm no further forward.. Now I've got fibro and raynuards desease and I've been turned down for DLA!!! I get DLA for my depression an IBS but turned down for my fibro which I was advise to add to my DLA.. I've appealed and got turned down again so now I've appealed against the appeal panel.. If you what I mean?? Still waiting for the outcome of that yet.. I feel I'm having to fight for everything and even more so now!!
I don't know what I'm doing or who I can turn to.. CAB are ok in some things but they tell me to do this then do that.. Fibro fog kicks in.. Whoosh is all gone!! I feel such an idiot cos if I don't write everything down I won't remember it.. But it's painful to use my hands.. Circles again., I know there are others worse than me and my heart goes out to them all... But what am I doing?? Where am I going?? Who can I trust?? Sorry if I've rambled too..just so frustrated!!!
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Candyfloss67
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It will get better once they find the right medication, and sort out the money your entitled too. For the first 5 years I was lost in pain and depression, things will improve.
Dont let it upset you they turn nearly everyone down when you 1st apply it took me just over 2 years to get dla and I get higher rate mobility now but it runs out in Sept this year so will have to keep appealing again for it,twice i have had to go to appeal so dont fret keep at it hope you feel better soon things will improve for you. When your 1st diagnosed i think acceptance takes a long while as well.
Once you accept deep down what the illness is all about I think then you can get on with your life hope this helps xxx
I'm off this morning to an appeal hearing about ESA! I know exactly how you feel! Everything is such a battle. I'm not crying at the moment but guarentee you,I will be before I am in the courtroom! I'm scared of everything! BUT... Will not be bullied by bloody jobsworths!! Who seem to have little or no emotions with regards to peoples feelings! Hold tight(not too tight, cos it hurts) and keep going! Much love xx
Hi. Just thought I would reply to your communication. I have got the lot on the worse end of the scale that is possible. I have had the Raynards all my life, even had operations to try and sort out my circulation issues. Then the end of 2012 I got a very bad virus--got over that eventually with antibiotics/doctors/hospital after three weeks of extensive pain I have never experienced in my life. Back to work (now 2013) and two weeks later I went down with another virus even worse than the first, due to low immunity I was told. Same again as before with hospital/doctor etc but on a more 'grander' scale eventually trying to get back to work--but I just felt and new I did not feel right.
So I had to chuck in my very well paid job as I just could not do it.
Bringing right up to date after seeing god knows how many 'specialists' , doctors, blood tests for everything, pain clinics--you name it Ive been there and done it with no 'positive' results which in one way is good, but on the other hand 'they' all say you have got Fibro! Which of course I had already worked that one out for myself having 'ticked' all the boxes! Given that I had gone from a healthy chappie doing walking, cycling, swimming, motorcycling,etc etc ex-fire fighter and latterly in a labour and mobile intensive employment until I had to give that up. In fact I have all but given everything up as I just cannot do it anymore. FROM ALL THAT TO A WALKING STICK AND CRIPPLED HANDS/LEGS ETC ETC IN UNDER A YEAR! Fibro and Raynards sure do not mix well!
I have got ALL that comes with Fibro and yes it makes your life a misery, certainly not helped by the likes of DLA/PIPS/ESA and the battle to just get some finanicial help to which you are entitled. I too had to fight my corner, I just told it how it was, how it all affected my quality of life or no life as the case may be, above all write everything down and keep notes. Otherwise that Fibrofog cuts in!
Ive rabbled on, but all Im saying is stick in there for your rights and dont be put off by the bulls--t that is fobbed off on you when you are told you are not 'entitled'. Its a very vicious circle because you can get very stressed and depressed with the constant battle,( believe me I do know), which of course does not help your (our) conditions.
But each time I had a 'rejection', yes I had that little curse again, but dusted myself down, 'licked' the wounds, tightned the boxing gloves and come out of my corner just that little bit stronger and 'willing myself' to fight my corner as I knew in my heart I was right--in the end I 'won' and got my just entitlements financially.
It makes 'life' just that little bit easier, but it still does not take away the pain we are all suffering one way or another. But its a real hard job convincing those in medical/authority what a curse the fibro and all that other 'conditions' that go with it are like and how it takes away your 'normal' life.
Hang in there and If I can help you in any way with letters/appeal please do contact me--I'm sure there is a method via this site that you can get in touch 'privately' , I just cannot remember how that works, Im sure someone will explain.
Hi Candyfloss67, I know how you feel!! I appealed my DLA decision and got low rate care, which i am not happy with as it doesn't support my mobility issues. So i am awaiting tribunal for that, so not looking forward to it my nerves are awful. Secondly i got made fit for work by my medical with ATOS for ESA. So I appealed that and went to tribunal and had to explain that the report was nonsense and full of lies! I won the appeal, but not too excited about it as i am only claiming £9 a week and too think of all the stress i went through for £9 a week, yet alone the cost to the gov for the tribunal. Stupid system if you ask me. I fought my case because i think its important for ill people to get what they are entitled too, not because of the money. However with the DLA claim its a much larger amount and that would make my life so much easier. Depression and IBS just get worse with stress and no amount of CBT can help me out of the DWP stress roller coaster. So i am with you on all counts, wishing you good luck, CandleLight
Yep those ever decreasing circles! The less you do the less you can do as you become weaker then its too exhausting to do anything, meaning muscle wastage and more fatigue. Problem is, pain prevents us from wanting to move. I do force myself most of the time but lately and not for the first time, insomnia has taken hold and im too tired to do anything. I hate my body!
I am with you here i too have insomnia and its driving me crazy i don't do much during the day and the muscle wastage is probably there i have said i want a new body to the drs but they don't have a sense of humour. I have osteoarthritis and have been trying to get something done with it but its just so difficult my fingers are now so painful but my gp will not refer me back to a rheumatologist he just won't listen to me I had to beg for steroid injections in my thumbs as my hands had become too painful i couldn't turn a tap on or anything but he said the steroid injection was just a plaster in the end i literally begged him and it has left my thumbs pain free now for three months i mean who in there right mind begs for injections that are so painful unless they think they will help if the dr gets the right spot. just wish they could do something with the rest of my fingers as i am typing this they are killing me. they lock in place and i literally have to use the other hand to crack the finger back. I force myself to do things but then suffer afterwards but sometimes its worth it. my daughter took me to London for the weekend in November and we went to see a show but the walking round killed me when i got home i was in bed for days because my hips and knees had gone the pain was so unbearable with the osteoarthritis. Its that vicious circle that i don't think the Drs understand and sometimes the label of fibro means they will not do anything. My Dr has now referred me to some team that supposedly attack things from every angle social, psychological and whatever else probably a complete waste of time but will see when i hear from them.
You have it rough! My hands have started to hurt on the joints but bearable at mo. My poor Mums hands are so mangled due to arthritis and I know I will end up the same. The future scares me. Hope the clinic thing works. Gpod luck x
yes I have intense shoulder pain myself at the moment feels like I've fractured my collar bone! buy yes its so hard having this illness and I take tablets to help me sleep better and to relax muscle spasms it hurts to touch my body especially in the trigger points - I work part time and went self employed recently as working in a office was tough and I was so chronically fatigued doing this job! Don't give up trying to appeal for DLA I have read somewhere that a person with fibro got a solicitor involved to help their appeal - I did apply once upon a time and was turned down straight away so I do keep as active as I possibly can now as it does help how ever hard it is honestly! It helps the good feeling hormone work, I have suffered depression for many years and it can be a very lonely place. I take antidepressants which help me and muscle relaxers together with pain killers. I know others can be much worse than me so I should feel lucky at the moment and work part time as a dog sitter so this helps me keep active as well as earning money. I was 16 when I first got this awful illness which used to come and go but by the time I was diagnosed it was spread all through my body - I didn't understand why I hurt and was called lazy as I had to sleep a lot from chronic fatigue but sites like these helps us talk things through and helps others to understand what it feels like for us as it is indeed invisible to the eye although I feel I can see pain in peoples eyes! As regard to writing everything down in order to remember I have to do the same I do forget and when speaking my words come out funny sometimes muddling up word which can be embarrassing at times but you are not alone! Be brave seek help, Never give up! big hugs to you and all with fibro
Hi there Candyfloss, I'm sorry you are having such a rough time at the moment, and I remember feeling exactly the same way myself when I got my proper diagnosis. One thing you mention though stood out to me and that is your depression, we all, I think, to some degree or another suffer with this as part and parcel of the condition, but if you can prove that depression is a big part of your life, DLA does take that into consideration. Could I ask if you have seen any mental health workers at any point, if so then it could help you if you could get a letter from them, that could help you in your application - it's just a thought !
I hope this may help in some small way, and I am sending you lots of positive healing vibes
aww, I know how you feel, I got low rate care in 2007 for lymphodema in my rt arm after mastectomy & lymph node removal after breast cancer, since then I have had chemo, radiotherapy, mastectomy on left side, bi lateral LD flaps, (they cut your lat dorsi muscle on your back & bring it under your arm to form new breast). This has left me with a big weakness, cant lie down or sit myself up. I have nerve damage in hands & feet from too strong a chemo dose combined with diabetes. I have both wrist in splints, from tenosynovitis, arthritis in my fingers. Fibro, depression, on top of all this I have a bladder problem, it isnt the usual with women of a certain age, I was born with it and had ops aged 5 & 10, now the urologist is talking a urostomy. I have a bnlue badge for the car, as I cant walk any distance.
I applied in 2011 to have my claim re looked at, I was turned down & told my circumstances hadnt changed????
My GP is fully behind me. I appealed & turned down. I have again tried in July last year but havent had a reply yet.
My OT has got us a stairlift, & my hubby has to do a moving & handling course to help with lifting me. I need a walk in shower room & a closimat toilet. \we have to put the first £21,000 ourselves as he works, we own our home and arent on benefits. The system is a joke, I always worked, even when I had my children. I know exactly how you feel, & wish you luck.
Have you had a referral to the dietician? If not please ask for one. I'm finding that eating a low FODMAP diet has been really helpful (shown up other issues but hey ho!)
So sorry you are having a rough time i know what you mean in some ways i may be lucky as i applied for my DLA etc a very long time ago and it may not have been as strict then as it is now as i know they are tightening things up although i remember being so stressed about it all. I am having flare ups all the time lately because of stress it makes everything worse. I have the fibro and also osteoarthritis and depression i hate it when the drs say that the depression causes the fibro as i know thats a load of rubbish its the pain that causes the depression and the inability to do anything. In fact i actually hate the label of fibro as when you go to the drs everything is put down to it. Have you tried juicing for your IBS and other things I did a 15 day detox and juicing plan last year after watching a documentary called fat sick and nearly dead it spurred me on to give it a go. It has been shown to help people with lots of different illness some have been cured by changing their diet it was suggested that when you stop juicing to just eat foods that have no additives or preservatives etc. trouble is i had to give up because it was just too expensive. But it did help me feel better in myself and i lost weight without even trying. Jason Vale has a good website which gives a lot of information as well as Joe Cross who was the person in the fat sick and nearly dead film he also has a website called reboot with joe packed with lots of information. Its just a thought especially for the IBS. But don't give up on the DLA i think we all have to fight them i had a letter this morning and my heart sank but it was just saying my income support is changing the usual yearly letter. I am waiting for my incapacity to be changed over toe ESA filled the forms in back in september so waiting for the lovely letter telling me when i have to go for a medical with ATOS. so i am stressing about that as if my money stopped i would be completely screwed as there is not way i could go to work. I wish i could at least then i would have part of a life instead of being so socially isolated i can be indoors on my own and not see anyone for a week. I hope you have some good news soon don't give up. gentle hugs to you.
Is there anyone you can get to go to appointments with you to help you remember information? Fibrofog is horrid at the best of times but far worse when it affects important information. I had my DLA form filled out by someone connected to DWP ( I think I remember right). She also did my mum's attendance allowance. One thing she did tell me was to remember my worst days when I answered the questions. If you say you can manage one on one day but not the next, they only notice the one day you did manage and then they refuse DLA. Hope I explained that correctly.
Hi, saw your post today and thought I would drop you a line. I have had trouble with applying for DLA. I got ESA (cont based) for one year. That stopped in April 2012. andever since then I have done appeals/tribunals for ESA. And I am waiting for a DLA tribunal! And I am applying for PIP. But this has already taken nearly two years, and that doesn't help when you are trying to pay the bills. I have fibro, but also have asthma and heart disease. I had to retire in 2009 at the age of 42 from the civil service. I have only my pension, and a bit of housing benefit.to live on now. But there are some places you can get help. For financial help, the energy companies have trusts, where you can apply for help towards your bills. And most councils have hardship funds if you are having trouble with paying rent and council tax. On this site you will find alot of help and good advice from all the members. I am still trying to find out myself how to get the dwp to believe I am actually ill enough to get benefits. Still don't think they believe people with fibro are ill at all!! Anyway I wish you lots of luck with everything, and feel free to contact me if you have any questions. Lots of love, cutebird x
Wow.. Thank u! Thank u to each and everyone one of u for ur info and sharing ur experience with this awful..dragging condition that we all have.. I was in tears to read some of ur stories of what u have all been through and my heart goes out to each and everyone of u
Hi candy I know exactly where ur coming from summer 2013 I had to fight for my benefits I had to go to a court tribunal and my social worker spoke on my behalf cause I was answering to wrong questions thank god I won and judge saw how bad things are in my life but job centre tore me down to feel like I was a fraud the practise in my town to seek help is so rubbish even getting a proper conversation from the GPS there is frustrating I've changed my docs 3 times I'm looking into home care soon big meeting happening in April thanks to my social worker and support worker pushing for it as just exisisting in my flat do u have any other support around u Hun I know this sounds stupid but I'm only heard and listened to when my mum gets involved which is awful to see I'm in a big fight to get the gp to listen and others to believe in me I have severe case of fibromyalgia and m.e with two kinds of personality disorders due to my childhood and my specialists are the ones who get me totally but can't always see them so of course you should feel happy going to see GP or other docs but I never do so much stress occurs with the negative rubbish thrown out their mouths what a stigma these come with the very hospitals told me not to go see them cause it's no accidents it's on going illnesses can't help my mum is angry cause I've had many times full body paralysis and left lying there until found gentle hugs to you I hoped this was a blessing finally diagnosed 3 yrs ago I'm 32 yrs old getting answers but sadly very severe case complicated care plan if I lose my benefits I lose my care team looking out for me my mum bless her can't take care of me my step dad has terminal cancer so mum phones me when can I'm hoping and praying the funding doesn't stop so can recieve the care we all deserve thinking of u candy hugs my name is KEZA x
Hi Keza.. Thank u for reply.. It's comforting to know I'm not alone wiv this and that so many of u get me in wot I say.. Right at this very moment I'm awake.. Can't sleep.. Legs are going totally crazy but my body just can't move even to keep my arm up to type this (on my phone) is hurting me.. It's been so cold that this stupid raynuards diseases is kicking in and hands and feet are one min freezing and look anaemic then the next they are in fire.. It's crazy!! I'm just getting over a relaps but each relaps is becoming more intense and lasting longer which has really pulled me down.. I have a lot going on in my personal life right now and I know that isn't helping.. I don't have anyone helping me with gettin help with my money and I just try my best to carry on.. I don't get any special help with my care needs and gp just hands out more pills.. I don't know who I can turn to let alone trust and who will believe me... I just feel my life has been turned totally upside down.. I'm sorry to read u are also having a rough time and my heart goes out to u.. I think in some ways it's been nice to know others like me are on here.. But fibro fog gets me down to cos i see a post/reply on here and think oh I will respond to that whoosh...., it's gone!!! They say stress makes our illness worse but it's people like GPs/specialist/DWP/DLA that cause us more stress by not believing us.. They are meant to help us not make us worse!!! I hope u get things sorted with u.. As others have said in their posts we must keep tryin but I'm all for that if I know where to start.. Gentle hugs to u.. Take care.. Xx
Hiya candy thanks for your reply sorry never got a chance to message back suffering real bad never ends up all the time until my body conks out then when it does I go into extreme fatigue canna lift my head or body I feel for u very much u can message me any time I'm having a lot of tummy issues too had bloods done to see why I'm suffering from nausea and nasty sweaty pain can hardly eat living on 3 rich teas a day to keep my sugar up so won't collapse I'm hoping I get answers real soon got to wait 10 days if no joy looks like tummy specialist canna live on rich teas lol do u have any animals I bought myself a jackadoodle he's so comforting lies with me cuddles into me first time puppy owner lifting my spirits his life is very different from other dogs I know due to my health but he's not minding at all love him so much he's the man of the house I can't be with anyone so friends and animals is my life and soon carer when that happens my life mainly him and phone calls or texts with once a week visitors I miss my old life had a lovely fella but sadly I'm too damaged and a waste cause of all my health mentally and physically 5 relationships I've tried since 16 and had enough now treated like rubbish then when I find a nice one he gives up on me too och men lol at least my pup won't leave me and run out on me im trying my best to keep my spirits up and trying not to worry about government stuff if anyone ever fancies a chat and has Facebook id love to make some friends through my fibro etc we understand each other gentle hugs KEZA x
Oh Sweetie, don't be sad it is horrible. I know exactly what you mean. I only left my job properly last week so have yet to begin the benefits fight, but judging by how horrendously my employment ended I'm not expecting it to be pretty. If you need any help I'm more than happy to take a look at forms and things for you, it's the kind of thing I've done for work before, and though I'm foggy too, two foggy brains are better than one. I have an interesting story which might assist in the future too, I worked for a government agency, and as you know the government rather favour Atos as there Occupational Health providers. In their attempt to sack me after absences for fibro (it was a hellish time which I may appear to underplay here to cut to the chase, but they nearly killed me through the unpleasantness) CFS and depression, in particular the physical limitations of Fibro, they asked Atos to prepare a report. Atos deemed me not only unfit to work in my current role, but in any role, for the foreseeable future, and recommended that I be considered for ill health retirement.
Soooo, when it comes to the supporting medical evidence part of the benefits claim, I am really keen to see how DWP and ATOS react to the 2 ATOS reports I will be submitting. This should be quite soon? Anyway, I still have those, I know what I said to Atos, and the questions they asked me, what they were interested in etc, so again, if it helps, I'm only too happy to help. Plus I have all the time in the world
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I hate my body!
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depression and fibro
Good news.... There's hope everyone!
