I was diagnosed fibro in September this year after baffling doctors with the condition I have since I was 13. I am now 21. After years of being pushed to one side and being told there was nothing wrong with me, or it was growing pains I finally had an answer. In august I first applied for PIP and in September I was finally diagnosed. I've been through lots of different examinations and tests to prove or disapprove conditions, I have also been on a lot of different medications until finally I'm finding gabapentin is doing at least something to help. After waiting from august until now (December) I was hoping people would realize how much pain I'm in on a daily basis and how much help I need. But this morning came the letter to say the DWP does not think I'm entitled to PIP. They seem to think I can dress and undress muself , although I physically need someone to do this. They also think I am capable of washing although, if wasn't to have someone to help me into the bath, I wouldn't be able to wash.
Sorry for the rambling I'm just astonished people can apply and be successful in recieving PIP when they're in no pain, but because a test proves they have a condition, they are automatically given it. With us with fibro, its like no one believes we have it or the severity of the effects on our body's.
I'd like to hear a few peoples opinions on the subject and whether anyone's actually been successful in claiming PIP. I will be appealing this decision and hopefully something will come about this.
Hi there hun
i too am waiting a decsion for my dlaas i too have the condtion Fibro but i was already getting Dla for my other condtions but i have applied to have the Mobilty rate increasedsothis doesnt give me much faith now after reading your news, can i ask hun have you been refered to Pyso and who ever your speaclist was that diagnosed Fibro ask them to back your case because thats disgusting and you shouldnt have to deal with it on top of everything else my heart goes out to you and i wish you all the best with your appeal ill let you know when i hear a decsion but going by yours it will proably be the same sending love always
Cherl xxx
There are a couple of new papers on the relationship of Vitamin D3 deficinency and Fibromyalgia.
"Serum Vitamin D Level and its Relation with Clinical Parameters in
Fibromyalgia as a Neuropathic Pain"
this tells us "In conclusion, the study confirmed high prevalence of hypovitaminosis D and osteoporosis in patients with FMS than in controls. Furthermore, vitamin D was closely related with pain and disease severity."
"Vitamin D status in rheumatoid arthritis patients: relation to clinical manifestations, disease activity, quality of life and fibromyalgia syndrome."
"Special attention is required regarding vitamin D levels in RA patients with FMS and decreased QoL. Vitamin D should be corrected and supplementation considered"
There are other studies showing raising vitamin D3 level to above 125nmol/l ( 50ng/ml) provides the greatest reduction in Fibromyalgia symptoms/pain. Magnesium and Vitamin K as well as omega 3 DHA help vitamiin D to work effectively.
I'm afraid the situation with DWP and access to benefits gets worse year on year. I'm grateful I gut my chronic pain/tiredness more or less under control so I can manage. With the inreasing incidence of obesity, diabetes, demetia and cancer rates it's inevitable the system is going to be overloaded and won't be able to cope.
We have to take more responsibility for manageing our conditions ourselves.
I have heard a lot of people get are getting refused and its only when you appeal they actually alter the disision. I'm guessing they are banking on people not appealing so they don't have to pay out more money. Its unfair as I know so many people who don't need the mobility yet get it because they lie aabout they're condition. However for people like me who feel anxiety and extreme fatigue on a regular basis and on some days are bed ridden, it seems we are getting put to one side. I haven't had an sort of physio.. However it is so hard for me to move I doubt it will help much, I have been reffered to a pain clinic. I will get my doctor to write me a support note for my claim, he knows first hand how much this is effecting me, I just don't understand how a decision maker who has never met me should decide how 'disabled' I am 
Good luck for your claim. I really hope you receive it.
Steph xx
I have tried many different things. I take vitamin supplements including vitamin D. I understand managing our conditions ourselves. But surely our doctors are there for a reason and everyone deserves a healthy life. Just because there is an increase in obesity, this shouldn't mean sufferers of fibro should be forgotten about. I don't blame you for not knowing but I have folders upon folders of research into fibro. I know what studies have shown and I have tried to do everything suggested by researchers. I'm just at my wits end now. I'm not bothered about the amount of PIP I will recieve, its more of a fact that I want someone to recognize my condition, and after all these years of suffering without an answer I think that's the least I deserve.
Hi there again hun
thanks illlet you know i hope you do get some good news
love always
Cherl
I'm glad to hear you take vitamin D3.
To get most UK adults to an effective 25(OH)D level between 125 and 150nmol/l requires between 30 and 45iu Vitamiin D3 daily for each 1lb that person weighs. Somewhere between 5000~10,000iu is typically required. Only after you've kept your 25(OH)D above 125nmol/l for a year or more(while also ensure the necessary vitamin D cofactors are present) can you be certain that vitamin D insufficiency isn't a factor in your case.
@ surely our doctors are there for a reason
But doctors are constrained by consensus guidelines and these are set with the best interests of big pharma in mind, rather than the health of patients Doctors are not given sufficient training in nutirition and NHS dietary guidelines are largely responsible for the increase in obesity, diabetes, dementia and cancer. If we promote a grain based high carbohydrate low fat diet the results are inevitable.
Many people with Fibromyalgia find eliminating gluten from their diet reduces their symptoms.You will be very lucky to find any UK doctor aware of the connection.
See "Clinical impact of a gluten-free diet on health-related quality of life in sevenfibromyalgia syndrome patients with associated celiac disease."
I'm not sure if you are aware of the website Benefitsandwork the guides they offer to Benefit claims are excellent.
I'm not saying we should not provide extra help for people with disabling conditions,
I'm simply pointing out that over the last 20 years things have got worse year on year.
With the increasing incidence of chronic conditions the progressive decline in availability of scarce financial resources is going to continue. Each of us must do our best to reduce our demands on an overloaded NHS and Benefits system.
If you think the current situation is bad then don't be surprised if in the future it is even worse.
Had my PIP assessment interview last week so awaiting the outcome. I have ME/CFS and Fibro. Looking at the assessment criteria I would of struggled to get much recognition for the Fibro alone I think. If I get recognition it will be the 2 conditions combined probably more tipping towards to ME/CFS.
There are many reports of needing to Appeal to win recognition. The brother of someone I know was a house visiting PIP assessor. He apparently gave up the job because he was criterised for approving too many cases. If that should be true, on the day of your assessment you need to hope there weren't too many bad cases along with yourself. Great system!!
Hi..I were diagnosed 3.5 years ago and applied and got turned down twice. I know of someone who was diagnosed in August this year!!! and had got the blue badge and just got full mobility!! and geting it back dated!!it is so unfair..why do they allow it for some people so soon, and for us that have and are still suffering for years get knocked back! I just don't understand..
Hi there
It does seem so un fair im still waiting to hear about mine ill proably get it turned down like everyone else but like everyone else i will appeal lol but life can be so hard and cruel to us all
Love to all
Cherl
Good luck with your outcome.
I also agree with that. They get penalized for passing too Manny cases as it means more money. They'd rather see people who are in need go without. I say again as I did in my original post, I know many people claiming DLA who really don't need it yet there cases are passed everytime. Its like a kick in the gut really x.
Feel the exact same way. Its so unfair. Hope your actually recieving something now?? If not I would deffinatly appeal.x
Yes that would be good but cant see it some how but who knows at the moment its taking them ages so doesnt look good my form went in August still not herd apart from we are dealing with it and it could take till Jan next year before a desion is giving so hey ho thats life , my hubby says if we do get it he wasnts a new car as i dont drive but im still not sure about things between him and me at moment so not gonna make any decsions yet xxxx
I'm so sorry sweetheart you got turned down appeal please can anyone give me any tips ive finally got my medical through 22 dec I'm happy it's finally here but also nervous and suffer anxiety and panic attacks so am worried I'll get knocked back im not confident at face to face confrontation I worry please any help or advice would be a great help thank you for reading im in sooo much pain feel so low im not able to dress myself or now can't make myself meals life is so unfair im no longer working as I was a carer and are not able to continue working xxx💖💖💖
I also put my claim in august. So hopefully your receive your decision soon? Have you had your medical ssesment yet? It only took about a week after my medical for them to tell me I wasn't entitled. But the lady who saw me wrote everything wrong down on the form, everything I Told her, she wrote the opposite.. Not to sound harsh but don't think of your hubby at this stage, think of what's best for you x be nice to add you on something like Facebook if you have it? X
I will be appealing. I worked out my descriptor points myself and know I have well over enough for the criteria. Don't worry about the medical hun, all that happens is they ask you questions the same as what was on the form and then ask you to do some excersises like bending down and things. If you can't do it, tell them as if your in pain they can't make you. Listen to there questions carefully as they have a tendancy of trying to catch you out. Good luck and let us know how it goes x
Awww so so sorry to hear that sweetheart I no what your going through im so worried I'll get turned down but like you I get the help I'll let you no what happens have you any advise for me now you been on the medical Hunny and thank you for the reply means so much to me 💖💖💖
Had mine last week and the lady was very nice. My hubby came with me (good if you can take someone). She asked me to explain which of my symptoms go with which of my conditions (I have a few). I got really stressed and light-headed part way through and had to lay on the floor. She offered to stop the interview but I asked to carry on. She did a few of the physical checks of lift each leg, squeeze her fingers. But she stopped it cos it was getting too much for me. A couple of mental checks re simple maths question, spelling a word backwards and remembering 3 set words.
She was really nice, but glad its over. Now just the wait for the result. Good Luck xx
Have i got any advice for the medical? i would just suggest staying calm. Try not to let things worry you, your there to tell them what is wrong with you and how the condition effects you. They are there to listen. If at any point you feel uncomfortable, or pained, don't be worried to say something to them, and stop the interview. Try not to worry hun, it doesn't last that long. I will be seeing the CAB sometime this week, so if worse comes to worse ill help you appeal if you like once i get some advice myself. Ive already wrote up some letters myself.
Good luck sweet xx
Aww thank you sweetheart for all your help and advise im a worrier I can't relax its part of my condition always tence thank you Steph means a lot 💖💖💖💖💖