How to obtain fibromyalgia diagnosis -GP's are useless

[BernardButlersBra]

For the past few years l have been having pain in my elbows and shoulders on and off. Sometimes in my wrists but that is rare. It went to my GP summer 2023 about this, they referred my to rheumatology and l had a few appointments / tests with them. They don't think it is a rheumatology issue and instead think chronic fatigue or fibromyalgia so referrals to those services. They send 3 letters to my GP asking them to do this but they don't do it. I have 3 appointments spread over about a month and in which appointment they agree to do the referral but either don't or include the wrong blood results. Eventually they do the referral correctly to the local chronic fatigue / fibromyalgia service towards the beginning of this year and it is accepted. Over 18 weeks go by which is the time limit set out in NHS constitution and l then contact the local chronic fatigue / fibromyalgia service who say they most likely won't be able to see me until 2027. GP's agree to refer to my to another local chronic fatigue / fibromyalgia service, l get a phone appointment and attend it but it actually rheumatology at a different hospital and they haven't bothered to include any test results. That was nearly a month ago, l have chased the GP's about an alternative provider, today l got a snotty e-mail back telling me to source my own NHS provider! Also to source the referral form.

There are lots of other twists and turns with ball dropping by my GP but this is a summary. I am unsure what to do next. Obviously l have a complaint open at my GP's due to the terrible service. Why would l be sourcing the alternative provide?!

What do you expect the diagnosis to give you? I’m not being flippant, but you get a diagnosis and then zero help, support, or meds that work, and don’t count on it leading to a successful PIP claim, there are days I’m bed-bound and don’t qualify. 😞

Rheumatology diagnosed me with fibro then discharged.
CFS team diagnosed CFS then discharged.

The GPs have referred you, you have had a telephone consultation and are on the waiting list for another service to be seen next year, what else can they do if you are wanting a referral outside their usual pathway?
Im confused as to why they are providing test results also, this isn’t usual on a GP referral unless really relevant and the tests were requested by the GP.
As the tests were done through your rheumatology appointments they won’t be on the records at your GPs anyway as test results aren’t shared in that way, unless mentioned in a letter from rheumatology-which you would have a copy of as patients get a copy of all letters sent to the GP.
Contact your original rheumatologist secretary and ask for a print out to send or take with you?

We don’t have a fibro service. GP diagnosed when they couldn’t find anything else. Prescribed gabapentin. Then nothing else.

I was finally diagnosed by a private rheumatologist consultant after years of begging the go for support because I was in so much pain. In the past 5 years it has gradually become so debilitating that I can no longer reliably work and am exhausted most of the time. Diagnosed. Letters sent to gp and those have been ignored. I found out by chance I can self refer to our pain clinic but it’s an 18 month waiting list.

im 52 and can’t get out of bed some days. It’s o utterly miserable

NHS Rhem diagnosed me after a load of blood tests, then GP gave Gabapentin and then nothing else can be done

I'm not sure they can positively diagnose fibromyalgia I don't think there are any definitive tests for it. And it's mainly a case of treating the symptoms anyway and hoping it may go into remission.

It is very difficult. Go private if you can afford. I had 9 visits to hospital CFS team over a 2 year period and still never saw a rheumatologist.
My diagnosis counts for nothing and I can't get PIP despite it being disabling.
30 years for me now with suspected FMS/ME.

Over 18 weeks go by which is the time limit set out in NHS constitution and l then contact the local chronic fatigue / fibromyalgia service who say they most likely won't be able to see me until 2027.

It isn't reasonable, but I am not sure that you can complain about your GP in that respect. They have referred you and the waiting lists are the waiting lists. Someone I know has waited (and is still waiting) for a hip replacement (and literally cannot walk without it) for four years - three cancelled this year alone. Someone else with suspected scleroderma is still waiting for his first appintment after five years. Whilst I really do sympathise how debilitating this is (I am disabled too) 18 weeks is unfortunately nothing in waiting list times.

If you aren't happy with your first referral route then actually you do need to use Choose and Book if it is available for this service; and if it isn't you do need to find somewhere that will accept an NHS referral from out of area (not all will) - that isn't the job of the GP surgery. They can give you access to Choose and Book if available, but then you do the booking (and it may not improve waiting times). Otherwise your only real alternative is private.

Rheumatology diagnosed with fibro and other things but we went private as the wait was 2 years. But there’s no treatment or follow up for it

Don’t understand why you want a diagnosis it doesn’t change anything.

CFS services can be useful - my DD accessed them many years ago - but they want a load of stuff excluded first and I expect they are over run these days.

try a private pain consultant.

I'm so sorry to hear this. Presumably Rheumatology have ruled out an inflammatory arthritis with blood tests, imaging etc? Fibro can be very painful and can sometimes mimic inflammatory arthritis except there is no swelling of the joints in addition to the stiffness/tenderness. There are certain "trigger" points with fibro that tend to be affected. Not very scientific, but if you google "widespread pain index calculator" it will bring up tools that may help you ascertain whether you have active fibro. The treatment is GP-led, mostly medication such as Gabapentin or Amitriptyline. In my area there is a service with a multi disciplinary team which can help. I'm afraid Fibro is a diagnosis of exclusion although more is being understood e.g. that it's an exaggerated pain response in the brain, and not a made up condition as was previously assumed!!

Sounds like the GPs have done a fine job.

Seen you, assessed you, referred you to a specialist...

Presumably you've had scans and blood tests and had other things ruled out? I wouldn't accept a fibro diagnosis unless autoimmune disorders have been properly investigated with full anca and auto immune panels, scans and also other conditions such as mcas, pots, eds etc. being ruled out. It's possible you'd have to have this looked at privately with the nhs as it is.

Rheumatologist declined to diagnose. Said it wasn't a rheumatic thing and to go elsewhere

Sterling! Half a dozen appointments in 2 years. Lots of wrong bloods done (4 times), claiming they haven't got 3 letters from rheumatology, being told to "stop going on" by a GP, saying they are referring to a fibromyalgia / chronic fatigue service but actually refer to rheumatology again. Their organization, communication and attitude is a sight to behold...

It's not 18 weeks though. I originally raised it at my GP's in summer 2023 and l won't be seen until 2027 by fibromyalgia / chronic fatigue.
Not my fault the GP's faffed and dithered with the rheumatology referral e.g. 1st referral was done to a hospital 20 miles away which was declined as l was "out of area". They did know there is a hospital at the end of my road and eventually (lots of prompting from me!) l was referred there. It was in the autumn of 2024 the GP was told by rheumatology that they didn't think it was them. It took them until the start of this year to do the referral properly -they kept on ignoring the instructions on the referral so they were declined

I want clarity about what's going on, lm not especially convinced
But appreciate lm not qualified in that area so l am waiting for someone who is. I don't expect it to be the panacea for all ills and l know there is no magic wand. A way to try to mitigate (potentially) my symptoms would be helpful

I haven't had a telephone conversation with fibromyalgia / chronic fatigue service. I have had a telephone conversation with the 2nd rheumatologist at a different hospital. His logic was l hadn't long seen rheumatology so he didn't wish to tread on their toes. Plus the GP included no information in the referral so rheumatologist didn't even know what the appointment was for. They hadn't even included any blood test results

Our local fibromyalgia / chronic fatigue service will only accept referrals with certain recent blood tests done e.g. vitamin d levels, iron levels etc. or they decline the referrals. Im guessing that my GP assumes other services are the same? A mix of bloods were done by rheumatology and GP, it's the GP ones that they seem to think need repeating. The GP's also have the tests results of what rheumatology did -my local area uses ICE which my GP's cab access and they are on my NHS app

Sorry to hear this

No one ever seems to tell anyone anything. I only heard about the pain clinic recently from a friend -GP has never mentioned it and l was not aware of it

This is what my MIL keeps on saying: go private. But l don't really see why l should have to and money isn't exactly plentiful at the moment.

When I worked for the NHS we would occasionally get letters from MPs representing their constituents in various complaints regarding delays, incorrect referrals etc. Upper management used to instantly fix the issue if an MP got involved. Absolutely no appointments on a waiting list for years? Suddenly the consultant can work through lunch to see the patient. I would only ever use this as a last resort but it really does help to get your MP to kick up a fuss.

Pretty much. Rheumatology did blood tests / imaging and “think” it most likely isn’t inflammatory arthritis. But haven’t ruled out it possibly being in the prodromal phase? Or it being prodromal phased AND CF AND fibromyalgia. The lack of swelling is very much a thing with me. There is a multi disciplinary team in my area, that is who the bungled referrals have been to and who l might get to see in 2027.

A lot of people do seem keen to think it is made up and / or l have issues with my mental health! Ironically my mental health would be a lot better without the symptoms, tired and having to spoon food the GP to acknowledge 3 different letters sent from a specialist to them….

It was just a suggestion that I was given by the local ME/CFS support group. It was not an option that I was able to take - I'm unable to work due to my symptoms being disabling, so we couldn't afford private. My official diagnosis is still "probably" Fibromyalgia/CFS and I've given up pushing for more because it just became too exhausting and stressful.

I’ve been diagnosed with Fibro, hEDS & POTS. Partly via NHS, partly via private. Mine flares up and down from mild to moderate. To be honest I’ve found the diagnosis pointless as there’s so little support available on the NHS. I’ve found online research and forums most helpful in coping with it and educating myself on how to deal with the symptoms as best I can. I’m lucky I have the lifestyle to pace when needed, this has been key for me. Also avoiding stress which is a huge trigger. I was prescribed Pregabalin by GP during a flare, but refused to take it due to side effects. Also for me, keeping hydrated and increased salt for the POTS helps.

Sorry to hear about your situation. It is hard

I can see how you feel like that. I am worn out by the pushing for more and how unhelpful everyone is. To be honest this forum has giving me more info than anyone else! So not knocking anyone here

So Rheum aren't 💯sure. Unfortunately, with rheumatological conditions, they can sometimes take a while to be diagnosed especially in the early stages as you say. But even without a concurrent inflammatory arthritis diagnosis, Fibro is not all in the mind. The pain and fatigue are very real which can in turn affect mental health. I hope you get some answers soon, and don't have to wait until 2027!

MP letters really annoy me as a consultant tbh...

Last one i got asking to prioritise a patient got sent back asking which of their 15 other constituents on my waiting list they'd like me to de-prioritise.... Funnily enough never heard back.

They should be communicating with yhe ICBs, NHS england or the hospital execs.