hi everyone, I was recently diagnosed with cfs, my GP has suspected this for a while..was recently referred to a CFS/Pain clinic, where I was told I could have fibromyalgia aswell..IM now waiting for a follow up appt, where I will get a treatment plan..To be honest life has been pretty bad for well over a year.. I was fit healthy active and was thinking abt going to college, I loved my job but wanted to learn something different.. This was put on the back burner though when I was diagnosed with breast cancer..big shock but I got through it and still worked... Then out of the blue came the chronic fatique,, the pain, memory loss... Got to the stage I couldn't do my job,couldn't even make it onto work some days...Going up and down to doctors for months..was desperate and worried I would lose my job.. Finally got a sympathetic GP, who said you have classic symptoms of CFS.. Anyway I ended up losing my job,I have just been referred to a specialist cfs/pain clinic, and was told that I have fibro aswell..im now waiting for a treatment/management plan... So finally got diagnosed, just wish it would have happened while I was working...Esa refused, cant work full time, would like to think I could work part time, but how would I manage..How do You manage? I'm broke and bills are piling up!!!
Cfs possibly fibro also. Claimed esa,... - Fibromyalgia Acti...
Cfs possibly fibro also. Claimed esa,failed medical assessment..what do I live on? I'm single, live with my teenage daughter.. So worried..
So sorry to hear that. I went through the same thing on my job😔 but was blessed to have short term, and long term disability.
It sucks hey....I've just had to go back to work as my sick pay has run out. I am really not ready to go back.You apply for benefits and it takes months before you hear back....
I would suggest that you appeal against the decision. I had to do this last time I was off sick.....it took a while but I got paid in the end. Gather evidence for your appeal from your gp and any specialists you've seen. Have you thought about working part time with working tax credits ?
Hello and welcome to our friendly fibro forum where you can find advice, support, help and understanding. Have you seen our Mother Site fmauk.org ? Here you will find a wealth of information including guides and links.
You have been through a very difficult time and I can understand your worries about your health and money.
Do ring the DWP and ask for a Mandatory Reconsideration, ask for a copy of the report too so you can see where they refused you.
Citizens Advice should be able to help you, there may be a bit of a wait so don't delay in ringing for an appointment. We have our own Benefits Advisor Janet who can be reached through the mother site.
Have you considered working part time? There is government help to get back to work but may not be suitable for everyone, however it is worth taking a look. : gov.uk/access-to-work/eligi...
This link may be helpful if you are struggling with money: gov.uk/national-debtline
I do hope you get something sorted out very soon.
Kay
I apologise if I am not doing this right, not used to these forums but Thank you all for your advice,relief to know there are people that are experiencing similar problems, I mean people that understand my situation..sorry!!
I was thinking about appealing the esa decision, but plan on speaking to my GP first
hadn't thought of tax credits, have just had a quick look, and I could work 16 hours and claim tax credits if I have a disability..but how do I prove a disability if I'm not receiving disability benefit? I cant seem to find the answer, ..
It really helps a lot if you get some assistance to fill the forms out from somebody who knows the system inside out so you don't miss anything....
For tax credits you need to be on a disability benefit such as DLA or PIP to qualify for 16 hrs.
Hi shortandsweet14
I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I am so genuinely sorry to read of your situation and you do not mention if you are in receipt of PIP (Personal Independence Payment?). I have pasted you a link below to the *GOV.UK cache on this benefit:
PIP is payable on how your disability affects you day-to-day life and is payable regardless of whether you work or not.
I want to sincerely wish you all the best of luck and please take care of yourself my friend.
All my hopes and dreams for you
Ken
Hi, Its such a relief to find a site like this,it makes a big difference to me as I have no idea how the benefits system works, its so confusing.
I do not claim pip, when I lost my job in December I claimed esa because I thought that was the only benefit I could claim because I was ill and unable to work, I was signed off sick when I was dismissed and panicked, it was near xmas and i had no money, i wouldn't be able to pay my rent or bills, so i claimed the only benefit i had knew about..ESA.
Hi shortandsweet14
I would put in a claim for PIP as soon as you can my friend. FMA UK also have a benefit adviser and I have pasted a link to her (Janet) contact details below;
healthunlocked.com/fibromya...
I want to sincerely wish you all the best of luck and please take care of yourself my friend.
All my hopes and dreams for you
Ken
Morning,
I'm taking creative measures to get by, taken in two lodgers and cutting down to pretty basic outgoings as I am not entitled to any benefits.
Good luck. ☺
I'm sorry to hear your having so much trouble. ESA is a tricky thing but you could have appealed the decision and whilst waiting claim jobseekers , council tax benefit and possible housing benefit depending on your circumstances. I don't work but I do get esa on the higher level. There is quite a lot of info on this site which should help you. Good luck.
Thanks, I received a a copy of my medical assessment today,..I am so angry and upset, and I rang dwp and completely lost it, so not like me, I'm usually so calm and relaxed,..it stated the interview was 20 mins, and there was pages of questions that I answered, absolutely rubbish most of them she never even asked, app I visot my parents everday, use a computer everday, and sat for 40mins without discomfort, I do my own shopping, cooking, housework everday, all complete lies.. My daughter does my shopping, and most of the cooking because I forget things, the last tome I cooked,i forgot abt the pan and it set on fire...90% of it was total lies, the main thing was she said i left my job... Rubbish..I was dismissed due to long term ill health, and she didn't even ask me abt my job.
I'm fuming..when i rang dwp, i was in a terrible state...The woman was extremely nice though, and tried to calm me down, ..told me she note down how distressed i was, and told me to appeal....How can someone talk to you for 20 mins and and make a decision abt my health, and be so untruthful...
Hi again shortandsweet14 that is truly awful my friend, and I want to wish you all the best of luck with your appeal. good luck to you!
I do feel for you as the same thing happened to me, pure lies in her statement. I appealed but out of the time zone, so I got Intouch with welfare rights and they are some what helpful but very very busy so another waiting game. I've only just filled out my mandatory reconsideration form last week and sent it off. It's so frustrating and my anxiety is making my fibro worse. We re suppose to make life easier and with our benefit system over run how can we. It's so bad I really hope you get sorted soon. ❣♥️
I would definitely apeal!! I do all the work around the house, cooking, shopping etc (as I live alone and don't have anyone to help) and still qualify (I do make a lot of adjustments to do my chores an need to pace myself)
Next time when when you are going for an other assessment or apeal. Focus on saying the difficulties you experience. For example if they ask if you like watching movies say for example - yes but I struggle sitting for more that's 15 minutes so watch them in bed (otherwise they assume that you can sit for an hour and a half)
Or if they ask if you cook, explain for example that you cook but sit down doing it, use pre prepared veggies (as you can't chop and peel) or use ready meals and that on some days you are unable to cook and get out of bed at all
This are just some examples
Focus on all the adjustments you have to make to live your life
Don't give up!!! Keep going
And otherwise try tax credits, housing benefits and council tax benefits. There is help out there, try CAB
Good luck
Hello shortandsweet,,,so sorry to hear of all the stress you have gone through,,,have you asked for the esa to reviewed and for the support group?,,and have you applied for pip for both personal care and mobility,,,,and use all the support from your gp and referal doctors,,,get the forms in,,,if you get pip care, your daughter might be able to apply for carers allowance,,,,good luck,,,there is a benefit support person on HU,,and there is the cab and turn2us where you can find out what benefits you could be entitled too,,,also you must tell all those bill senders, what your situation is and get as much help from them as possible,, br brave and steel your nerves for the sorting out,,,good luck,,,ttfn from karen.
Thank you so much for your advice.. I am trying to sort my bills, and have spoken to them, so relieved that they are so understanding.
As for PIP, can I claim that, even though I failed my esa assessment..is it not the same department that assess esa?
Yes, anyone can enter a claim for PIP, as it is assessed on how your disability affects your day-to-day living. Good luck my friend.
Thanks, I have seen my GP and will definitely take your advice..he said I am ill and unfit for any work at all at the moment, I have his full support..
I am genuinely delighted to read that you have your GP's support, good luck my friend.
Thanks for your advice, I went to see my GP yesterday, and he was just as annoyed as I was, when I showed him my medical assessment papers.. He states I can not work at all, I'm unfit for any work at the moment.. Ive got tovgo see him next week and he will help me with my mandatory reconsideration, and suppy all medical reports etc.. I had seen a rheumatologist, neurologist etc in the past but wasn't aware I was still under the care.. Also he said I'm under 4 hospitals and 4 consultants still inc a cfs clinic where they are putting my management and medication together..ive just been given an activity chart and paperwork about pacing etc.. Iit has took 2years.. And I didn't put half of Thi in my medical form because I had mymedical assessment before I was referred to cfs clinic.
He also has referred me to the cab, they have in the surgery on a weds morn..so ill ask about pip aswell.
fingers crossed!! It goes ok....i just wonder how seriously disabled cope with all this.. Its stressing me out and I only started my claim in Dec..
Hello shortandsweet14,,,your gp seems to be taking on your case,,and doing all he and others can to get you the help from benefits you need,,,,always put everything in your applications,,and they can wade through the details,,,and to help with keeping things straight,,ask all the different consultants and clinics that you attend, for copies of all letters, reports and follow up letters and have this request put onto your file so that every one does this for you,,,I have this done, and I can keep a check on what is happening,,also you have got the proof of ongoing treatment you are receiving,,,,
I put in my pip application,,and asked if any special requirements needed for me to attend for the f2f medical/assessment from Capita,,,,well knock me down with a feather,,,the letter arrived and the day, date and time given,,10.30am,,what!!, venue at my home,,,is this a good thing,,,or what,,,debating about having the time moved to later,,my brain is not in full function mode,,,that early in the morning,,,,so wonders will cease,,,,,good luck and we are all here for you,,,ttfn from karen.
Thanks..My GP is brilliant, very supportive..mind you it took over a year of going backwards and forward to the surgery and talking to at least 10 gps before I got to see him, lucky for me as soon as he read my file he said "you got all the classic symptoms of CFS" and got me referred.
As for the benefits system, ive realised how sly they can be.They basically just made up the answers, because there was nothing on it that I actually said..I wont make the same mistake again..so will be asking for copies of all my medical stuff.
Hope all goes well with your assessment...Im not good in the mornings either, feel like I've been hit by a truck and aged 20years overnight.!!
wishing you well..Good luck
hi everyone, anyone been prescribed pregablin, the cfs the consultant as asked my GP to prescribe them...he said I had moderate/severe cfs/me, depression and anxiety..HADs score 17/21 can anyone explain this to me..
I didn't think I had depression, I was asked if I thought I had depression, I had said No, I'm just fed up with feeling ill, as I was once very active, and feel my life has completely changed for the worse, having to rely on my daughter and financial difficulties....I was not expecting to be diagnosed as depressed as well as everything else..
Got jobcentre appt tomorrow, as I failed esa assessment, told to claim jsa..I'm so worried, gp says I cant work, and just fed up with keep repeating myself to the dwp.
Stay strong it's really not easy and I too felt as you do, I'm still going through the benefit maze since October last year. I had to do a dept management with citizen advice and that helped towards financial worry. My sister and brother helped me with food and money over Xmas time. I'm appealing for pip and I now get ESA while I'm off work due to SSP running out. I'm on low income as only can work 16 hours a week but I'm laid up with a knee flare up anxiety disorder and I've only just been diagnosed with cfs/fibromyalgia even though I've had Symtoms many years. As long as ten or more. It's overwhelming hunny but don't give in.. I'm still off work since the turn of year don't feel I can go back as my knee so poorly and other annoying Symtoms. Good luck 💜
Angela 
Can anyone please help..I'm at the end of my tether
Is fibromyalgia the same as ME/CFS? I'm confused!
DLA -
