Hello from the UK

[Alex529]

Hi everyone, I am from the South Coast of England and suffer with fybro. I do not have a formal diagnosis yet and was wondering if anyone knows the steps to take to get diagnosis in the UK. I have been suffering for nearly five years now. I diagnosed myself from the Info I found online. I then got a new GP who actually listened to me and agreed it was fibromyalgia. I have since seen a psychologist and physiotherapy who agree the symptoms are in line with fybro and can't be explained for any other reason. I also believe I have cfs too but only after reading about it here was I aware of this.
I find it very frustrating that nobody wants to give a formal diagnosis even though the gp has put it on my sick note. Any suggestions will be very helpful
Thanks

 

[JayCS]

Hi Alex, and welcome!
If you need a diagnosis for anything...:
You could print out, fill out and take the 2022 UK fibromyalgia guidelines checklist to your docs (rcplondon), and if that doesn't work,
get a private appointment with the fibro part of the London Pain Clinic (Chris Jenner) who will help with diagnosis and treatment recommendations. See their website and youtube.
If you don't need it, you could do that above checklist and/or the online test here (needs registration tho) on our main site just for your own confirmation and follow that up starting with sunkacola's advice post here, and listening on.
You'd possibly need a diagnosis if you believe meds might help a bit and not harm too much and your GP won't prescribe them without one. For things like PIP you don't need one, because that's based on how able-bodied you are, regardless of diagnosis.

 

[Alex529]

Hi Jaycs, that's some great advice thank-you. I will take the checklist to my next dr appointment and see what she says.
As for pip, I have just won a tribunal so all good there
Thanks again

 

[sunkacola]

Hi everyone, I am from the South Coast of England and suffer with fybro. I do not have a formal diagnosis yet and was wondering if anyone knows the steps to take to get diagnosis in the UK. I have been suffering for nearly five years now. I diagnosed myself from the Info I found online. I then got a new GP who actually listened to me and agreed it was fibromyalgia. I have since seen a psychologist and physiotherapy who agree the symptoms are in line with fybro and can't be explained for any other reason. I also believe I have cfs too but only after reading about it here was I aware of this.
I find it very frustrating that nobody wants to give a formal diagnosis even though the gp has put it on my sick note. Any suggestions will be very helpful
Thanks

Hi Alex, and welcome to the forum.
Diagnosing yourself with fibromyalgia, like self-diagnosis of anything at all, is unwise and can be dangerous. Reason being that there are many, many things that have similar symptoms, and if you assume you have fibro and do not get tested and checked out for the other things you could be missing the correct diagnosis and therefore not getting a treatment you need. Please don't make assumptions about your health, and get yourself thoroughly tested.

A psychologist and a physiotherapist cannot know what your symptoms mean, and they cannot possibly know there is no other reason for them. I personally think it's irresponsible of them to have told you this. A GP cannot know this either, just from what you tell them. Only testing and exploring all of the other possibilities in various ways can determine that.

You can take the self-test to a doctor, of course, and maybe that is not a bad idea. Just be aware that some doctors are not going to react positively to a patient coming in and essentially telling them what they have and asking them to confirm it. Some will be OK with that, but others will not, and if you get the latter type of doctor the result may be that they accuse you of self-diagnosis and hypochondria. I truly do not mean to sound negative, I am only letting you know so that you can make an informed choice about how you approach this and be forewarned.

 

[JayCS]

Yep, I agree fully with these additions of needing to exclude everything else and being wary of docs who might think we're narky if we come with a test.

Rheumatological, neurological, endocrine, orthopedic issues and more would need checking and it doesn't sound as if this has been done yet.

The problem with the UK guidelines to me is they omit the bit about needing to exclude everything else which is in the ACR criteria they are based on.

A psychologist and a physiotherapist cannot know what your symptoms mean, and they cannot possibly know there is no other reason for them.

Definitely, the wording makes it sound as if they might have been leaning out beyond their own expertise. Each expert for a certain area can only say: I can't find anything in my area to explain these symptoms. Any expert for fibro should base a decision upon many tests: exams, scans, bloods. Here in Germany I was sent to all these specialities by the GP and rheumatologist and on (because the GPs don't have the resources to do everything thoroughly enough). In Britain they apparently keep most centred around the GP, whether they have resources and expertise or not. What I'm not sure about listening to the lpc-video "Fibromyalgia experts" is when/where all these tests are done, I'd think before going there.

 

[PFG37]

Hi I’m 37 and from Thurrock, UK.

 

[pratchettfan14]

Hi Alex, not being able to ascertain a diagnosis is really frustrating. You have all my empathy. When I first came down with this 18 years ago, my doctor here in Oregon, USA, was extremely reluctant to make a diagnosis of fibromyalgia. Which meant that I couldn't get disability payments. I hope that here in 2023, you eventually have more success.

Good luck!

 

[pratchettfan14]

Hi Thurrock, Just joined this forum. I can't travel, but would love to here about your area of the UK. Can you direct me to any online resources, so that I can armchair travel?

 

[JayCS]

Hi Thurrock, Just joined this forum. I can't travel, but would love to here about your area of the UK. Can you direct me to any online resources, so that I can armchair travel?

Hi Fan14 - Terry I assume? (me Equal Rites, you probably everything?) - and welcome!

Not sure if you saw that PFG37 is in the area called Thurrock, not themselves called that. Interesting name, the wikipedia page is interesting too...

I'm chipping in cos they haven't been around for over 2 months, same as Alex, so may not answer. You can see this by putting the pointer over the avatar.

Hope you have and bring some Pratchetty-witchy-fun...!

 

[sunkacola]

Hi Alex, not being able to ascertain a diagnosis is really frustrating. You have all my empathy. When I first came down with this 18 years ago, my doctor here in Oregon, USA, was extremely reluctant to make a diagnosis of fibromyalgia. Which meant that I couldn't get disability payments. I hope that here in 2023, you eventually have more success.

Good luck!

Greetings.........
Just so you know, getting a diagnosis of fibromyalgia is not by any far stretch a guarantee that a person will get disability payments, and in fact it doesn't seem to be of any help at all the majority of the time.

It is simply very difficult to qualify for disability in the USA, and it also is dependent on many other factors such as how long you have been unable to work, what evidence you have to present, and other less qualitative things because the decisions are made by people who are overworked, overwhelmed with applications, probably underpaid, and may be affected by how much sleep they got the night before they review your application.
There are many people who have come to this forum who have a diagnosis and have had one for years and cannot get disability.