Hello all, many questions! Hopeful of... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Hello all, many questions! Hopeful of some answers from you good people :o)

bobthebroken profile image
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Hi there, my situation like most is not straight forward .... do apologise in advance for length and maybe not but as I see complex situation ..... so here goes ..... I am at the very start of this not so great phase of life ..... I was recently diagnosed with fibromyalgia ... and looking for advice ...... I have worked all my life in heavy engineering and oil, gas , petrochem etc as an engineer, so heavy work .... in 2000 whilst living abroad (lived abroad for 17 years) I injured my back .... it didn't settle pain wise after healing , it was diagnosed as secondary chronic neuropathic pain .... I was sent to pain management and prescribed tramadol, gabapentin and amtryptilene ... which after a time helped .... continued working .... returned to UK ... worked allover managing pain ... few flare ups ... took extra pain meds and managed ... was working on a very long term marine contract recently .... 8 miles a day walking and climbing etc .... went over on ankle .... off work 10 weeks (self employed so no income except ESA) ..... had it injected privately and it settled somewhat .... Nov 16' ankle again..... claimed ESA .... rejected as self employed??? .... Jan 17' whilst still off with ankle my contract was terminated!!! .... during 2016 after original ankle incident I started noticing other symptoms, joint pain in knees, hips, ankle, foot, my sleep had been bad for years but had become terrible (5 hours if lucky a night) noticed fatigue and tiredness .... signed on for JSA incorrectly when contract terminated .... then signed off last week .... made new claim for ESA for ankle ...... but have now been diagnosed with fibromyalgia .... so dont know what to do??? How this is going to pan out .... suffering anxiety .... and too add to the mix my father has been diagnosed with incureable advanced prostate cancer!!!!! Anyone got advice? As this is early days .... what do I do about ESA claim (contributions as have some cash from working) .... is Fibro recognised by ESA or any other benefits as an illness as the way things are I would struggle if not impossible to do y job .... as with most Ive got a mortgage and bills that just keep coming out with nothing coming in ..... any advice from you nice people would be very much appreciated .... hoe everyone is well as can be .... thankyou and hello all ..... Bob x

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bobthebroken
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TheAuthor profile image
TheAuthor

Hi bobthebroken

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 have pasted for you below a link to our mother site, FMA UK which hosts loads of useful Fibro information:

fmauk.org/

You could try applying for PIP (Personal Independence Payment), I have pasted a link from the GOV.UK below:

gov.uk/pip/overview

FMA UK also have a benefit adviser (Janet) and I have pasted a link to her contact page below:

fmauk.org/contactsmenu/help...

Under the way the disability benefits system is worked out these days, it is not the illness or disability that gets you the benefit. It is the way in which your illness or disability affects your day-to-day life that counts. It may be best to talk to a professional about benefits and see where this takes you. Hopefully Janet can shed some light on how the system works?

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 Bob, and welcome to the forum where I expect you will get a lot of support and advice. You sound as though you've been through the wars! I would think yours is a case for ESA...and PIP....though others may have more experience of these particular benefits than me. Anyway wishing you a pain free day as much as possible xx

Ramjets profile image
Ramjets

Hi Bob, welcome to the forum. I read your post and although I may not be able to offer any useful advice to you, I can share my experience with you as we have some similarities. I was also self-employed but had to stop work last April as I was feeling so bad. I thought I would take a break to try and get myself healthy so I started to live off savings as I did not anticipate being away from work too long. However by August I had not got any better and then was finally diagnosed with fibro. At this point I had also developed a frozen shoulder so decided to make a claim for ESA. As I had previously kept up with my NI contributions (and because my husband was working full time) I was awarded contribution based ESA. I did the claim over the phone and just had to provide a sick note from my GP who put fibro and frozen shoulder as reasons I was unable to work. I am still claiming it and have not had to attend any face to face assessments as yet just provide sick-notes from GP. Because I have a mortgage and I am on contribution based ESA, I am unable to claim any other benefits so we are struggling financially at the moment as our household needs 2 salaries and the benefit amount is a pittance really. I personally don’t feel I qualify for PIP but maybe you would be successful in claiming this. Also if you are caring for your dad there may be some carer-related benefits you may be entitled to? Like Ken said, I would seek some benefits advice from Janet but there is usually someone in your local CAB who can also advise and help you complete any forms. You do have a lot on your plate at the moment so it is no wonder you are anxious. I am sorry you're suffering through all this but you did right coming here as the forum offers support and information so is a great help when feeling anxious and lost. You’re not alone hun, take care and good luck. xxx

1Dog1Kid profile image
1Dog1Kid

Hey Bob . First you are not going mad even though the multpul symptoms will make you feel that way. In the begining I denied this disease and yes it has the official classification as a disease. How could I tell people that today I had sore elbows and migraine the next day knees hurting too,the next start to feel anxious then have a good day when only your original injury causing problems then back again. It is so hard for doctors to treat us especially GP,s they have to be jack of all trades and even if they have encountered fibro before other patients may present with a hole lot of different symptoms. You, like me are already taking the meds before diagnosis that would be a first line of treatment for fibro. I can only say that you will have good days again,good weeks and for some people good months. Find a GP that listens,be your own doctor,research everything,print off and take with you any information that will keep a doctor informed. They like you to be proactive and proof of self help too is good. If you find a doctor is intolerant,don't cause a fuss just pick another and keep going till you find the right fit. Good luck Bob and hope you find the help you need x best jayne

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