Am I going mad?

[Sim80]

Hi there, looking for some advice and some direction. Years ago after going through endless hospital and doctors appointments, pains clinic hypnotherapy, physiotherapy was told it was fibromyalgia and no treatment to cure and that it’s something I have to learn to live with and off I went, managed my symptoms kept up my vitamins and exercises etc etc as years gone on I’ve had support from friends and family occasional visits to the doctors, was on antidepressants for many years, my work have made adaptations for me to help as time times gone on I’m a bit older now and gradually finding keeping up normal life is getting harder, someone mentioned I may be able to apply for pip to help ease the financial incursions, when I looked into it it asks for my details of doctors and visits that relate to my fibromyalgia only to find I was never actually given an official diagnosis they struggled to find any mention of it in my medical records and it’s left me feeling quite list and frustrated, I feel like I’ve been making this all up in my head and with my fibro fog my memory is a bit vague with dates and places, it’s made my anxiety and depression escalate and I don’t know what I can do, and feel like I’m back at the start again feeling like a hypochondriac when I try to explain all my symptoms to new doctors and I just don’t know what to do, any advice would be appreciated has anyone else been in this situation? I feel like I’m going mad

 

[sunkacola]

Hi Sim, Well first of all you are probably not going mad. I say probably because it doesn't sound like it but I don't know you so I cannot say for sure. (Just a little light humor, here).

This is indeed an unfortunate situation. I am not familiar with PIP (are you in the UK? I am in the US). But if you need an official diagnosis, I don't know of any way to get one without going to a doctor to get it. Do you have a regular doctor you see just as a primary doctor? If so, maybe you can ask that person, who must be familiar with your problems and pain, if they will give you a diagnosis for this purpose.

From what you say, however, I am not certain an actual official diagnosis is absolutely required. You said they need doctor's visits that relate to the fibromyalgia, so maybe the ones you have already had would do. Perhaps the best approach is to go back to one or more of those and tell them you still have the same issues, and ask them if they would log the visit and write down fibromyalgia on your record.
If all you need is one or two doctors to do this, you can accomplish this.

Try not to let this get you too upset. There is a solution to the problem and you can find it.
Hold firm to your own knowledge that you are not a hypochondriac, and just do what you need to do.

And before you do anything, maybe you can talk to someone who is very knowledgeable about pip, either someone at their office or else there may be a liaison office or other place that can advise you...there should be some agency set up to assist people with disabilities or elders....and ask them if they can tell you the exact things you need to apply. If the first place you call says they don't know, ask them who to call next to get the info you want. Once you get the right person on the phone they can advise you what steps to take.
Best of luck!

 

[Sim80]

Thank you for your reply yes I’m in the uk, I’m just n the process of tracing my records, I’ve recently moved to a new area so my doctors are all new to me and they’ve had issues with tracing back records from my previous gp, I’m currently back with physio team they were the ones that did the original digging trying to trace back, just a bit frustrating as they said if they can’t find the info I’d have to go back to rheumatologist and go through the process of rediagnosis, I remember the amount of time I lost sitting around in various hospitals and awaiting results etc I’m hoping that the records they have will be enough to speed up the process, just felt a little crazy as I’ve lived and adapted my lifestyle for the last 10-15 years to be told they could find records of fibromyalgia other than my go signing me off for fibromyalgia symptoms about about a year ago just set off my anxiety and then the spiral of stress set off flares of my usually manageable symptoms again. Thanks for the reassurance it’s very much appreciated x

 

[Badger]

Hi sim80, I know pip can be stressful, I'm UK based and been through the hassle with them. Hopefully you will be able to get a medical history print out in time and not need a re-diagnosis. Physios can be helpful to speak to, they may put Fibro on record. Otherwise take your time and make notes of your experience so far. It will help to plan things out for a pip application.

It sounds like you have battled for a long while to manage life with Fibro. PIP can help to make ends meet, but it is not means tested so it will not help towards costs such as dental. The process can be tough, but it is worth seeing it through. Mine was taken from me in 2019. After appeal I was given standard daily living, but after outgoing bills was still £50 out of pocket. It took a couple of years with covid delays before I could take things to tribunal. Fortunately I was given high rate in both daily living and care. Chances are the next review in 2024 will be another battle.

 

[Sim80]

Hi there Badger thanks for the reply, I had an appointment today had a good chat about the situation, they’re having another look through my medical history so awaiting a call back, been advised to go citizens advice not sure how much help they’ll be with this issue, feels like a bit of passing from pillar to post like in the beginning but I guess it is what it is gonna be a long winded process which I was really hoping to avoid going through again. I’m glad to hear you managed to sort out your issue and I hope you get through the next part without having to do to much of a battle, I’m gonna suck it up and accept the challenges to come as I’m really struggling and that’s the only way forward. Fingers crossed they’ll find something useful in my records and maybe save a few tests/hospital appointments

 

[JayCS]

Hello there, Sim80 - I'm not in the UK myself, but read a lot from people about PIP.
The most important bits are always:
It is based on how difficult your daily life is and not on your diagnosis, so it's important to get to know the questions (on the web, and help from e.g. citizen's advice) and sort out the best way of putting the answers, not forgetting things, not understating etc.
And to always appeal, as it's highly unlikely (80%?) to not get it first time round, they kind of expect you to do it.
Is that correct, @Badger?

And as regards having gotten unsure about the diagnosis:
No problem at all, it's always good to get 2nd and 3rd opinions.
When explaining your symptoms again it's good to get the basics clear, the most important most severe symptoms, doesn't have to be a laundry list, that'll come again in time, but will also lose itself in all the records.
Looking at the 2022 UK fibromyalgia guidelines (patient and also doc versions) can help you with that on the rcplondon website. They're based on the ACR 2016 criteria (which I prefer).

 

[Badger]

@JayCS yes that is correct, it can feel their attitude is, if people are genuine, they will appeal. Many don't fight it, but it's important to see it through to the end. As Jay recommends, it is important to study the questions online. I remember reading websites that guide you through and keep it simple. This will help you to take your time and make notes you can have by your side. As they say when answering the questions, think of your worst day of the week. Atb