New Member/PIP Update/Feedback please

[Firefly1508]

Hullo everyone,

This is my first time of writing.

I was diagnosed with fibro with a mitochondrial blood test in 2010.

I lost my dla re application at that time due to being bed ridden and too ill to re apply.

However i re applied 24th april, of this year and as requested the assessor came to my home.

This am as requested i received a copy of that report and there is one major error on the mobility page.

I will call on tuesday to ask them to correct the error.

I am scared that this mistake will influence the outcome of my award.The assessor called last fri to tell me that i will have a response by this coming thursday.

IF i had a choice i would rather they award me on the corrected information

Will i call Atos or Dwp to cortect the information please?

Any thoughts on going forward in this situation is greatly appreciated.Thank you all for the great work that you do for the group,the information available and the participants.

Gentle hugs

Suzy.

[hamble99b]

there should be a phone number on your letter with a named contact to ask for.

I think you are right, I would definitely call them to correct the error.

let us know what happens.

regards,

hamble.

[Firefly1508]

Thanks Hamble

I will call them on tuesday.

I was in receipt of DLA in 2011,but after loosing my hair and voice,

then bed ridden for 2 yrs.My hair has grown back after2 yrs after much experimentation,

including changing my thyroid (T4) to T3,i am most days asymptomatic as far as thyroid symptoms go.

I was on high doses of cortisone for acute adrenal fatigue/cfs Diagnosed by my symptoms and salivary adrenal test .I am down to15mgs now. My daily supplements are greatly reduced these days,but its the calf and hip pain mostly which is a problem.

After 5yds I have to rest,and that brings me out of any Denial that I have this auto-immune disease for life.

I start a pain management course in June.It will be strange to be amongst like mindedpeople,as one of my grief issues is social isolation ((I live alone),as well as letting go of three careers.I have counselling when it all gets too much.I have to remember I am human and will have feelings that are very uncomfortable sometimes.

.Its hard to remember not to feel cheated out of a good standard of living.

My bread bill for the month is £24.00 as its wheat/gluten free.No sugar and no dairy,so lactofree items.are 1.39 a litre.

My food allergies were diagnosed on symptoms and vega testing.

I supported a house move last October,by using acupuncture and massage,but without Pip,I cannot have these treatments at present.Another grief issue,and the list goes on.

My housing benefit has been greatly reduced since moving countie,but I waited 6yrs for a 1 bedroom bungalow,with a very scats and one bengal who are my kids as i don't have any.mall manageable garden to put a bird feeder.

It feeds my Spirit and is balm to my Soul. If I cannot go walking in Nature,one of myt favourite pastimes,was walking/hiking(.I used to climb mountains at one point:)I brought nature to my doorstep.

I also have 2 Siamese cats and 1 Bengal. They are my kids,as I don't have any.and they

are soo mischievous,again they keep my Spirits up

Well, that's a little about my history.Fibro didn't come overnight,so it will take sometime to accept the debilitating effects of it.

I joined a fibro group a few weeks ago,and that helps.Someone comes and takes me to the meeting,which I am really grateful for.

Thanks for reading

Gentle hugs.

Suzy

[Serenity61 in reply to Firefly1508]

Hi I am sooty to hear of your experiences you seemed to have such a vibrant life. I myself have lost out on so much

I have been diagnosed with fibro in 2011 I have been on the. Holistic path of healing diet change and yoga and meditation which is helping me a great deal with regards to being in bed for stretches of time has been a lonely time for me waiting for pains to reduce to a degree where I can do small things.

I recently did a mercury test and found that I have metals in my body you see fibro to me is given that name when doctors see complex issues but cannot see a specific identified cause.

I know there are many different things that has caused me to develop chronic pain so I check out each one example full hysterectomy para protein in the blood I have looked at each one and decided to look at the causes I found that diet toxins lifestyle are the main causes and this is why I did the mercury test and the effects that causes all of the above. I thought I would share this as I believe all things a curable and conventional medicine only suppresses things and creates other problems.

Love and light

[TheAuthor]

Hi Firefly1508

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, and I genuinely hope that you find the forum as useful as I do?

I agree with hamble99b, you really should ring the number and named contact on your letter and set the record straight, as then there can be no comeback on you! I also want to wish you all the best of luck with your disability claim.

I have pasted you the link to our mother site, FibroAction below. It is full of really useful Fibro information:

fibroaction.org

I genuinely look forward to bumping into you around the site.

All my hopes and dreams for you

Ken x

[fenbadger in reply to TheAuthor]

You really need to control that chair Ken

[TheAuthor in reply to fenbadger]

I know, I am looking for some Dalekcanium to place around the sides!

[fenbadger in reply to TheAuthor]

Oh, man. They were selling dalek hemispheres at that convention last month! If only I'd known

Is it Ken or is it DAVROS

[TheAuthor in reply to fenbadger]

It would be dead cool to convert an electric wheelchair so that I looked like Davros! I would probably spend all day in my chair playing?

[Ginsing]

Morning Firefly, What a lovely introduction post you have pinned up. It so lovely to know a little about the person makes all the intro blurb much easier to give.

I love knowing about peoples pets and your three sound fantastic, I bet they keep you amused and give great cuddles.

My big heartted fellow volunteer The Author has given you some gen on were to look for reference material about fibro. We are the foremost site for comprehensive up to date information so do pop in to fibroaction.org. It is amazing as you learn about Fibro just how many aspects relate to our selves.

So fantastical to meet you and any time I can help you just shout (PM me) private messages are usual used for things you do not want the world to know.

See you about ytake care and keep smiling!

xgins

met to say I am up to date on allergies my daughter bless her has wheat intolerance and lactose intolerance and also Paprika that is the killer so we have to b very careful . Bye

[Hidden]

Welcome firefly So pleased to meet you.

I like you and most of the rest of us were all extremely active people and I personally think that is one of the reasons we come down with Fibro. That instead of resting after a trauma or illness we pushed ourselves too far too quickly.

I miss walking in the country side with hubby and dog. some days I struggle to do 3 or 4 steps and so we have just purchased a second hand motorised wheelchair. So far I am very good at scraping the paint of the door frames but the way the weather is Its the best i can do.

My poor dog is bored stiff as hubby is not too well at the moment and can`t take her and it`s too wet for her to be out side chasing the birds

see you around hugs sue xx

[Summervile]

Welcome firefly lovely to meet you . I am going threw a tribuneral. At the moment I'm having lots of help from citizen advice . Xxxxx

[tasha2]

Morning all i have just read firefly's post and i am confused i thought there was no blood test to diagnose Fibro??????? lots of question marks and before i forget which happens a lot these days i wish you all a relaxing sunday ,watch movies ,drink tea ,eat cake ,feet up,get some feel good factor if possible

[fibro10]

Hi firefly1508 it is worth ringing atos and also send it in wrighting send any other information with a letter explaining the errors to them and send it by recorded deliver or if you or someone you know has use of a fax machine ask if you can fax it to them and ask for the fax number I hadit done this way when atos said they didn't receive my papers if they say yes to the fax always ring next day to make sure they have added it to your file good luck fibro 10

[mimimouse]

Hi Firefly and welcome,I would definitely phone on Tuesday to correct the information. One of your responses mentions a blood test for fibromyalgia, I too did not know of a blood test for fibromyalgia. has anyone else any information about this. Elaine xx

[bwaite]

Suzie I hope things work out

in your favor. It's really ridiculous

We can't collect the money we

Worked for! Let us know how you

Make out! xxxxoxxx

[enirehtac17]

Hi may I suggest, you first contact D.W.P If still unhappy with response , contact your local C.A.B, or Welfare Wrights good luck

[fenbadger]

Welcome Firefly.

You do right ringing to correct the mistake. Now you're in a local group is there anyone who is willing to help with forms. They can be daunting even for fit people but when you're stressed and ill it's a real burden.

Lavender scented hugs and do feel free to join in or not, or just have a moan. Our support is here regardless.

[lilian68]

welcome firefly

it is always difficult dealing with atos & dwp hope it all works out ok for you.hugs xx

[Firefly1508]

Dear Everyoe,

Thanks soo much for your lovely replies to my question and introductoy e mail

I just wanted to clarify a point regarding my fibro diagnosis.

I had two yrs of worsening symptoms after shoulde surgery and a faall resultimg in the other shoulder fracture and knew that my system eas shutting down as my brain fog,temps/Bp were all below the radar.

No help from local gps except the offer of anti depressans,so to save my own life conactrd sarahmyhill.com,andhad all the very severe symptoms of cfs.

I paid for the mitochondria test, and staryed on her protocol.

I paid for a consultation with her and was told that other symptoms like very tender trigger poimys were conducive

[Firefly1508]

to fibromyalgia..I took the supplements as prescribed.I started slowly getting out of bed.More activities at home helped.Fast forward,and the pains in hips and calves are the most troublesome,all in good time.

I make sure if I cannot do 10mins of Tai chi 3 times a week.That I stretch my body for a few mins a day.

I would like to walk outside,but too painful most days.Sitting in the garden helps,getting all that lovely Vit D into my body

Regarding the PIP amendment.I enquired about faxing the info.No fax facilities.

I dictated the amendment to them.followed up with a snail mail letter.Hopefully the assessor.( sent it c/o her) hope it will affect the outcome,otherwise I will be appealing

Fingers crossed.

Thanks for reading.

Gentle hugs to everyone