Fibromyalgia Action UK
39,236 members51,369 posts

hi all :)

sorry i havent been on for what must be years! its been not a very good time i lost both parents my father recently and that was heartbreaking to me as he was my best friend too but he was heartbroken and fought cancer like a superhero! i have been also deteriorating too im finding less days between pain no let up and now the worst i had to have an xray as my neck was really painfull doctor called me and said theres so much deterioration its not sure what can be done which im a bit annoyed about because when the rheumy diagnosed fibro she had also said there was scoliosis in my neck then why hadnt they kept and eye on it! so thats one more thing to have to put up with:( i called the dla / pip the otherday to inform them that my condition had got worse as the doctor told me to the question is what happens do they send a form to me? or do they contact my doctor ? just wondered cause ive had no form ? sorry for moan but there is a question there too! hope this post finds you all ok and coping with this damn fibro xxx

19 Replies

Hi fairytails

I am so genuinely sorry to read that you have lost both of your parents, and please can I offer you my deepest condolences. I am also so sincerely sorry to read that you have been struggling and suffering so much and I genuinely hope that you can find the answers that you so desperately desire and deserve.

I do not know how this works with notifying the DWP about your health getting worse. However, FMA UK have a benefits helpline that may be able to help you? I have pasted the number below:

FMA UK Helpline: 0844 887 2450

I have also pasted you a link to the benefits page of our new website:

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

All my hopes and dreams for you


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Hi I am so sorry to read of your bad times, My sincere condolences on the death of both your parents/ I am sending a huge comforting cuddle. I know just at the it seems nothing will help. One morning you will wake yp and every thing will have sorted it self and you will begin to feel better less zombie find. So take heart and hang on in there depending on what you believe they are just next door looking over you.

If that doesn't make you smile just a tiny one to start I don't know what will.


x ginsing


Sorry to hear life is so bad at the moment. Gentle hug, x


Hi fairytails. Really sorry to hear that you have lost both your parents and I can't begin to imagine how heartbroken you are. Sometimes for some reason known only to itself life decides to throw al the bad things at us at once. I hope you have luck with the dwp/pip and know that we are all here for you xx


totally saddened to hear ally outage going through . I have no idea about pip and lost my fight with ESA and tribunal ....

I can't begin to imagine how you feel with your health and I can't find anything that could take away your pain..... I am so so sorry for all you have been through and are still currently going through .. and I hope and pray you can get some resolution from the pain and help to your current health issues ...

all my love and big hugs and prayers ... xxx


So sorry to hear of your loss, life is hard take care of yourself.


Condolences and hugs too. Ken has given far better information than I have.

You need to moan, to get it off your chest. Don't feel you have to suffer alone, you've been through a lot. :)


I'm so very sorry to hear about the loss of your parents, especially the recent loss of your father, you are in my thoughts and prayers at this sad time.

I sympathise with your neck problems as I have the same - so agonising!

Hope you get your dla/pip sorted out soon.

Wishing you relief from the pain,

gentle hugs, Mim


My sincere empathy for your can be a bummer can't it? Allow yourself to grieve, even if other people avoid talking about it with you. You can always speak honestly on here.

An orthopaedic pillow (available on EBAY or appliance shops) can help a lot with sleeping and travelling...I have a U-shaped one with washable cover (Lanaform - Comfort plus, Thermoactive cushion) which has been marvelous in relieving the pain associated with scoliosis in neck and spine. Personally, I prefer to use this than to take too many analgesics and Ibuprofen.

Hopefully the PIP situation will not be too difficult to resolve - it is there to assist us after all !


thankyou looby xx just bought new pillows today see how they go tonight my body is just awfull atm i must admit the biggest pain imaginable ive ever had yet:( anyway hope ur feeling ok and well and thankyou again for answering my moany post!! :)

hugs xx

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Hi there Fairytails......apologies for not responding to your reply for a while. I caught a "bug" which affected my chest and breathing really badly - so very little sleep overnight...hence why am still up in the "wee small hours" just after 3.a.m. I do hope you are able to read this soon, and feel our empathy and support for you.

Like you, both my parents died within a short time of each other - and this may have contributed to the "trigger"for Fibro/Lupus type of symptoms. This was on top of a road accident which injured spine and neck.

All I can offer as a ray of hope to you is that there WILL be better days for you - it just takes a while to learn how to manage the pain, and to pace what you are able to do. Saving essential tasks for when your body allows this.

I am so fortunate, that after several years living on my own - after divorce in 1999. I met (in 2004) and married a wonderful man in 2007 - this was just after I took early retirement because of the fatigue and illness. Although he is not used to domestic tasks (especially cooking!) he has been so understanding and without him, getting to hospital appointments, etc would be really difficult. I also have great joy with our furry companions (two cats) who both seem to know when the pain is overwhelming, and are soothing companions.

Just out of Fairytails the name of the little dog in your picture?

Sending hugs xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo


I can honestly say that I know exactly how much pain you are in, with the loss of your parents and especially your father. My Dad was in Ireland visiting family with my Mum, when he had a massive heart attack and died. The funeral is on Friday and I am dreading the thought of my Mum being so "broken" and sad. Take care of yourself and reach out to the team as Ken suggested,to help you with your benefits!... Much love to you and your family.... Ninja....♥♥


Really feel for you.

Been ,21 years since my dad died suddenly and had to stay strong for my mom despite falling apart inside.I doubt anything I say will help as half of what was said to me drifted past me but thinking of you and your mom .Hugs and kind thoughts.


hi nanna im so sad to hear that news for you bless your heart and your mums i know exactly what you feel and for you it must be even worse saying have a good holiday and then that happens:(* its honestly cruel i hate death:( look after your mum with kid gloves ii know looking after dad was so hard sometimes as i knew that his heart was broken after mum died and i couldnt fix it for him:( i hope friday goes as well as it can and just be kind to yourself take time out and dont rush into things grief is a weird animal! im sending lots of hugs to you and your mum xxx

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My heartfelt sympathy for you and your family.


So sorry for your loss and the awful time you are having .I think others will probably put it better.

If you are still in receipt of DLA a change of circumstance will generate an invitation to make a new claim of PIP.If you are already in receipt of PIP notifying them of a change ,unless on enhanced rate of both,will most likely result in a new claim form to be sent to you approx two weeks from call and reassessment of whole claim.

Sending Gentle hugs and wishing you inner strength to help you through it all.


thankyou so much for your kind reply hugs and have a lovely weekend x

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I am so sorry to hear about your losses! My condolences. I will be lifting you up in prayers! Do take care, GOD bless you.


thankyou have a lovely weekend x


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