Finally!: Hello fibro family! Today I... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Finally!

CushMonkey profile image
13 Replies

Hello fibro family!

Today I finally got diagnosed with fibromyalgia.

Obviously it's not great news but it definitely will help going forward!

If any of you have any advise on what benefits I can claim to help me out as I can only work 16 hours a week. I would be most greatful x

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CushMonkey profile image
CushMonkey
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13 Replies
Dionne0208 profile image
Dionne0208

Hi, it depends on how much it affects you but you can claim pip, it's 2 different rates standard and enhanced, I'm not to sure what other benefits you can get when working part time but there's lots of brilliant people on here with much more knowledge who I'm sure will reply, all the best to you xx

ClareCrip profile image
ClareCrip

Eligibility for the current main disability benefit, PIP, depends entirely your degree of impairment. It is not based on the name of your condition. So you will be assessed on what help you need with things like getting up, washing, dressing, preparing food and eating, continence, etc etc. the distance that you can walk is also assessed. There is a lengthy form to complete and that would almost certainly be followed with a medical. There are issues in many parts of the country because there are delays in getting the medicals done, and many people have had a bad experience.

If you are able to work and have anything like a "decent" income, then you would be unlikely to be eligible for means tested benefits, or indeed if you have a partner in work. If you become unable to work then Employment Support Allowance is the benefit to claim. That also involves form filling, a medical, and sometimes an appeal!

You would be well advised to talk to either the CAB or your local DIAL, who would be able to look at your precise financial position and advise you, and help with form filling if needed.

If you are having difficulty managing at home then you might want to get an assessment from your local occupational therapy service, usually via Social Services. They can help with small household items, grab rails, bath lifts and so on, and if major works are required to make your home accessible, there is means-tested help. Councils are desperately cash strapped though so provision is becoming more restricted, same goes for home care which is generally only available in pretty dire circumstances these days (speaks from experience of having to try and get help for an elderly mother-in-law with dementia!)

Hope that helps, the system isn't exactly generous, but if you don't ask, you don't get, so it's always worth asking! Good luck.

Fibrofoggiest profile image
Fibrofoggiest

Hi CushMonkey,

I hope I'm right in saying that as I understand it you are allowed to work up to 16 hours a week on a "permitted work" basis and still be entitled to ESA, which you will have to apply for through the jobcentre. ( they will also be able to tell you exactly the number of hours just incase I've got it wrong). The best advice I can give to anyone dealing with job centres and the DWP is to be completely open and honest about everything and then they will treat you well, well at least that's what I've found.

Then there is PIP which is not means tested and will again require form filling and again this can be obtained from your jobcentre or either of them from the CAB. I always keep two copies of each form I've filled in so that it makes any further form filling a bit easier. You can get a huge amount of help from your local CAB with the filling in of all the forms and they know how to achieve the very best outcome for you.

Could I also suggest that you take a look at our mother site fmauk.org where you will find information about benefits as well as a lot of other information you might find interesting being newly diagnosed.

Wishing the very best 😀

Foggy x

How long have you waited ?

CushMonkey profile image
CushMonkey in reply to

Since about 14 I have been having problems but in record 2 years. I am 23 years of age x

in reply toCushMonkey

Well you got a long road ahead Be happy honey You would most likely to be the youngest member on here Keep in touch Are you in the uk ?

CushMonkey profile image
CushMonkey in reply to

I know it's a long road ahead, today has just been one step toward people around me actually understanding. I will keep in touch, this website has been my solace on days when I was about to just give up <3 x

in reply toCushMonkey

Know don't give up , you can't do that Iv got Fibromyalgia and Tinnatas What I do is try to be happy still have fun crack a few jokes with the other members Keelybee is a nice girl What medication are you taking ? X

CushMonkey profile image
CushMonkey in reply to

I was on a cocktail of medication but I am no longer taking anything. I use vitamin D spray, eat healthy, go for walks and have epsom salt baths and use magnesium moisturiser now and again. I have started oxygen therapy and that helps with my fatigue and a bit of the pain (also gives me a nice tan if the sun is out)

I have two ladies around me that also have fibromyalgia and I know they are there for me to.

I am happy most of the time and enjoy a good laugh.

My rheumatologist is advising my doctor to give me duloxotine which i asked for months ago and got refused because it was for 'diabetics' x

What do you take? are you in the uk? x

in reply toCushMonkey

Well it looks like you got it well sussed out and good girl you are staying of the hard medication which takes some will power to do so well done , I take Lykra , Nortriptylin and loranzapam I don't really like taking the loranzapam because it's a cedative but I'm hooked on it now Yes I'm male and I'm in the uk , I might try that vitamin D spray Can't you sleep tonight ?

CushMonkey profile image
CushMonkey in reply to

No i've been having a rough couple of weeks with this flare, I know why it's so bad at the moment just can't find rest. You can get it in holland and barrat along with the epsom salts for pain relief. Are you having a rough night to? x

in reply toCushMonkey

Ok thanks Yea my legs and arms are really bad and my feet are numb so I'm laying in bed looking at the ceiling fan go round , I want to the cinema tonight , watched a film call no escape in think that's what it was called , anyway it was a good film ,I eat healthy too , but tonight I went in the Harvester , wrong one the food was cr@p How long you going to last out tonight will you get some sleep xx

TheAuthor profile image
TheAuthor

I am so genuinely sorry that you have Fibro, but as you say it may be easier to move forward now. I have pasted below for you links to the tow main benefits that everyone has mentioned so you can read up on them.

gov.uk/pip/how-to-claim

gov.uk/employment-support-a...

I want to genuinely and sincerely wish you all the best of luck.

All my hopes and dreams for you

Ken

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