What help, support and benefits am I ... - Fibromyalgia Acti...

Fibromyalgia Action UK

59,444 members66,491 posts

What help, support and benefits am I entitled to?

LovelyLiz profile image
8 Replies

I was diagnosed with Fibromyalgia in February 2012, but have probably had it as long as 20 years, since age 15, following Glandular Fever and Post Viral Chronic Fatigue. I work full time in an office, but some days it's a real struggle and I'm so tired and achy by the end of the day that I go to bed very early - straight after eating a meal. I have an adjustable bed with a Tempur mattress and this really helps with the pain and poor circulation issues. I also pay for a remedial massage once a week, which really keeps me going. I've been on either Prozac or Citalopram since age 19, and regularly take Naproxen or Ibuprofen and Paracetamol. My question is, am I entitled to any benefits? I am only just managing at the moment. My condition is managed through lifestyle choices - no alcohol, no caffeine, no junk food, pain medication, low impact exercise everyday and lots of rest, relaxation and sleep. I also have Endometriosis but this is well managed with a Mirena coil. Take care everyone, sending lots of love and healing hugs to you all x x x

Written by
LovelyLiz profile image
LovelyLiz
To view profiles and participate in discussions please or .
Read more about...
8 Replies
webby profile image
webby

i await your answers as i would like to ask the same question xxx

poppy-03 profile image
poppy-03

Hi, to be honest it all depends on how your health is effected by your illness/disability.

the best people to get benefit advice from , as you work, is the CAB they are always helping people with their benefit enquiries.

there are certain benefits available if you work, but as I am personally unable to do anything with out the aid of carers so work related issues such as yours I have limited knowledge.

Hope this helps a little

hugs poppy xx

thenewmrsmills profile image
thenewmrsmills

I am waiting on a claim for DLA at the moment. I am unable to move around without crutches and rely on pain medication every day. I have only recently had a diagnosis also but it has completely turned my life upside down. I am amazed that you are coping so well and see this as an inspiration to me :) Like the previous said, go to CAB and they will tell you what you can claim.

LovelyLiz profile image
LovelyLiz

Thank you, I will contact the CAB on Monday. Sorry to hear you are struggling - it's really hard at times, isn't it? I'm going through career transition (downgrade of my job) at the moment too, the last year and a half has been very stressful which has not helped me physically either! I will hopefully be changing employers within the next 2 months - watch this space!

I haven't always coped so well with long term chronic pain - memories of my teens and twenties are a bit of a blur of pain and depression. However, I've learnt to manage better as time has gone on - it's been quite a journey.

My top tips are support socks for your legs, physio for your whole body and especially where you have most pain, an adjustable bed and Tempur mattress (receive VAT free for long term chronic health - and with interest free credit over 2 years), lots of vitamins, minerals and supplements, an extremely healthy diet, drink only water and natural juices, 30 minutes of low impact exercise everyday and loads of rest, relaxation and sleep. My sleep pattern is not great (about 4 hours at a time), but I've learnt to live with it.

Take care everyone, sending lots of love and healing hugs x x x

trekster22 profile image
trekster22

benfitsandwork.com is an excellent site which i used to appeal my DLA. It mentions how to describe 'fluctuating conditions' ie fibro and also how to apply for DLA, put in lots of detail about how badly it affects you, mention 'better days' and 'bad days' and describe what others can do to help and how things go wrong when you dont have help. PIP is due to begin summer 2013 so if you can fibromites get on the right level of DLA quickly.

trekster22 profile image
trekster22

If you can ask for an occupational therapy home visit. im my area you can self refer, then if you dont have a care package (or yours is a chocolate teapot) tell your OT about all your needs if possible overload them. Mine went back to social service and put me on the urgent need an assessment of need list.

Google 'fair access to care standards' and write down how you fit the FACS criterion. In the UK 'critical' is always covered and 'substantial' is normally covered. My combination of disabilities puts me in the substantial category. Yeah i know we are people not criterion for boxes but sometimes playing their game works. Good luck.

LindseyMid profile image
LindseyMid

The Direct.gov.uk site can help you work out if you are entitled to any benefits:

direct.gov.uk/en/MoneyTaxAn...

There is this information on the assessments and where to go for help on the FibroAction website:

fibroaction.org/Pages/Benef...

LovelyLiz profile image
LovelyLiz in reply to LindseyMid

Thank you x x x

You may also like...

What benefit may I be entitled to?

Hi lovely lot tommoro I'm hopefully getting diagnosed if I do would I be eligible to get a benefit...

Am I not entitled to a sex life?

Then fibro reared it's ugly head and in my bed amour decreased I feel, sometimes, that part

What are we entitled to?

chronic illnesses like this and they have certain entitlements like a card to allow them to go to...

Am I entitled to any help with bills etc if I lose my job through FM?

FM - Work - Support I have received and am receiving - hope it helps someone else.

more seriously. I am sure I would have been out a lot faster if I hadn't. I am also receiving...