I’m a 36 year old female and finally accepting my chronic pain, exhaustion, depression and brain fog aren’t just going to go away on their own. I’m also accepting that the three may be all connected and not ‘just’ long-covid or postpartum symptoms.
My GP last year suggested I have fibromyalgia after an online test she sent me. Does this count as a diagnosis? Rheumatology have rejected my referral for third time stating everything my Gp wrote correlates with having fybromyalgia. Has this happened to anyone. I keep getting told I should apply for PIP but I’m scared I’m not ‘sick enough’ and worry I don’t have enough extra interventions/reports from a hospital. Any advice?
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36andtired
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I was diagnosed by my GP, he also discovered had I severely low Vitamin D at the same time. I've never been referred to a specialist. It all made sense once I had the diagnosis though, I realised all the symptoms I'd been suffering from for 6ish years actually were something (previous GPs never put all my symptoms together to come up with anything, and said I was "too young" - early 30s, and "just working too hard" - which I actually was too!) 😁
Thanks for getting back to me. Yes, I was robber off for years with age been a huge factor in why I don’t think I was taken seriously. Have you applied for PIP with your doctors diagnosis?
Hi, any notes or paper work copies from doctors or specialist you may have seen . X rays or medication you take. Like a copy of your latest prescription for example.
A writen note from your husband/partner stating what help you need and when. This all helps them to get a better picture. I hope this helps.
No, I work full time. If I had a physical job, I wouldn't be able to do it full time.Although I struggle every day and need medication to ease my symptoms, I don't consider myself to struggle as much as some people. To be honest, I've heard people talk about PIP, but don't really know what it is! ☺️
PIP looks at how your symptoms/condition impact on daily living activities and mobility. Does pain and fatigue impact on your ability to cook, wash/shower, mobilize etc. The CAB website has good information on PIP.
hi there I’ve just been diagnosed too after 10 yrs of symptoms and got diagnosed by a nurse practitioner. I’ve also just been rejected for pip as I can dress myself and can make myself meals which I told the assessor I don’t do my partner does all the meals but still was found to be able to do this. They also stated there was no medical evidence for some of the pain I was feeling even though fibro can give you pain anywhere randomly. I am going to appeal but I’m not hopeful good luck if you apply x
PIP is always hell, but do it. I have won 2 tribunals, and the 3rd time the court threw it out and told the government to sort themselves out.
Yes its stressful, yes its tough, but you are unwell, and that money is to help you. Get a cleaner to take that off your plate for example.
I am 29 and I got diagnosed in 2018 - had issues since secondary school, so I feel blessed to have that early but you can work and recieve PIP, its not means tested like most benefits.
Apply for it, fight for it and remember you are allowed to try to have a nice life too!
Also benefits and work (online) i pay for annual membership and they have guides for benefits and its super helpful
ESA never make me fight, they can see i am unable to work, but I am desperate to not be a burden so is a very hard balance.
Oh this gives me hope. I’ve read such horror stories about trying to apply. I was off for 6 months from work with depression. Thought I was going crazy and couldn’t explain how I was feeling to anyone because I was scared to lose my kids. Physically my body just can’t do what it used to. I had variation surgery and I’m convinced it’s all just gone wrong since then.
It is a hard experience, the assessors take down a lot of detail, and then the DWP will manipulate and say nothing is wrong.
But fight it, it is definatel worth fighting, and they will back date it from your request of the form - call and ask for the form, dont do it over the phone, say you need to have someone help you with it. Its a long form, and if you have nhs app, print off whatever you can xx
personally I prefer on paper as you then return it signed for and they have to sign it to say they recieved it, online they can 'lose'
but idk if others have experienve with online submissions who can help there. But make sure to keep a copy of how you respond, I also scan my old forms.
include every diagnosis depression can impact memory as can fibro fog so theres lots of things i forget and add in later, idk how easy that is for the online submission
That is absolutely awful that you were afraid you would lose your children 😢I’m so sorry to hear this terrible condition left you feeling scared witless. I hope now with everyone’s advice and their support you are feeling much more in control and I pray that you get what help you are entitled to to make your life that bit easier. 💖and 🤗🤗xx
Tell your GP that you want an official diagnosis in writing. With PIP - they don’t judge the illness- it’s
HOW the illness affects you.
If it affects you more than 50% of the time
If you can do daily tasks: SAFELY, REPEATEDLY AND CONSISTENTLY.
there is a website called ‘Benefits and Work’ some advice on there is free but I paid a years subscription for £20. Well worth the money! They give you all the help and advice on line to apply for PIP and all other benefits, how to appeal etc.
Maybe get in touch with your local citizens advice bureau as they can help you with the application form too.
I am diagnosed with Fibromyalgia and on a ‘good day’ I feel great!But I am limited to what I can do because so many triggers cause flare ups which leave me housebound for weeks. It’s all about pacing yourself - doing little and often. I try to avoid processed foods and red meat and dairy- that’s not easy! 😂 we have to live!
that’s brilliant! Before you fill out the form- write down every single symptom and how it affects you washing dressing cooking walking etc. write examples of your brain fog and struggles to do things. Maybe contact cab and ask if they know of a charity that can help you fill out the form. Good luck 😊
Thank all of you, reading all this is sad but makes me feel less alone. Not easily explained to people who think you are depressed and should be able to put on a braver face. Not very good at taking too much, for me, medication as side effects make me more dependent and less able to be me. Good luck all and let us think of each other x
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Not sure if I've got fybromyalgia
waiting for diagnosis
