ME/CFS Diagnosis UK

[Lululemon22]

I have a diagnosis of Fibromyalgia but believe I also have ME. I am struggling to get anyone to diagnosis me or even consider it. My GP dismisses me, my physio said she would write to and ask for me to be referred to a specialist team which apparently has a very long waiting list. My question is 1. Why do I need to be referred NICE guideline say GP can diagnosis thus removing my very long wait 2. If I went private what kinda Dr / do I need ??

[Dancer2021]

Hi

I'm in a similar position to you. All my tests come back normal but I'm constantly fatigued and my joints seriously ache. Every time I get a test result that us normal they drop my case and I have to keep pushing when I don't have the energy to. For you I suggest start with Rheumatology to see if you have the RF factor. I didn't have the RF factor so once again was discharged even though I have Fibromyalgia which does comes under Rheumatoid.

[bookish]

Hi, I wonder if you might find this useful, although it is American and so some of the testing is less appropriate to us

mecfscliniciancoalition.org...

You will see that vit B12 barely gets a mention in the Tier 1 stage, but homocysteine and MTHFR variants do get another mention in Tier 2. Serum B12 testing may rule in a deficiency but cannot rule one out, and a homocysteine test can help to identify a 'hidden' B12 (or folate) deficiency. B vitamin testing is far from straightforward and may need persistence and research. Deficiency can be strongly familial. Some suggest that B12 and folate in the appropriate forms for the individual may help considerably (which has been my own experience). The vitamer used can make an enormous difference, but always test first and start low and slow. Some with genetic SNPs around one carbon metabolism do well with more methyl groups and some very much do not. There are 4 supplementary forms of B12/cobalamin (and I now use 3 of the 4) and three forms of folate, of which I've tried two - one works really well for me, the other doesn't.

ncbi.nlm.nih.gov/pmc/articl...

I do not have an ME/CFS diagnosis but had postviral fatigue for some years after EBV. I had pre-existing fibro from childhood, restless legs, gluten related disorder, then small fibre neuropathy, vitiligo and familial tremor, mast cell dysregulation etc.

You could try doing some testing for yourself if you have the £.

Best wishes

[cyberbarn]

Sorry to hear that you are having trouble getting support for ME/CSF and for fibro.

I am afraid that in the UK rheumatology no longer deals with fibromyalgia. They will only accept referrals from GPs if there is a suspicion that there is another inflammatory condition involved:

rheumatology.org.uk/Portals...

Your best bet is to find out what the local pathways for ME/CSF and fibro are. Google for your ICB and ME/CSF and or fibro and that should come up with the pathways that your GP should be using. If that doesn't come up with anything useful the next step is to contact your local PALS office. They will be able to tell you what the local pathways are and make sure you are getting the support you need.

[Lululemon22 in reply to cyberbarn]

hi, thanks for your reply. I was diagnosed with fibromyalgia by a rheumatologist in 2023, I went to see them privately

[loopy-lee]

Hi

I am also in a similar position to you, I started having all over joint pains back in 2019 accompanied by fatigue, upset tummy and sometimes just feeling "crap" as though I was coming down with Flu, I did have some xrays which showed mild osteoarthritis in my neck but then my symptoms seemed to settle down so I was just referred to our practice physio, but then six months ago the pains came back ten times as bad, upset tummy, crushing fatigue, joint stiffness and the flu like feeling but all my bloods came back clear. My physio suggested I may have fibromyalgia but my doctor has referred me to Rheumatology because you can have something called seronegative rheumatoid arthritis and this requires completely different treatment to fibro and can only be diagnosed by a specialist. As the waiting list is so long I am also thinking of going private because if you don't start treating rheumatoid arthritis early on it can lead to severe joint damage which I find quite worrying.

My first point of call will be a private consult with a Rheumatologist.

Good luck getting a diagnosis x

[Konagirl60]

I would see a neurologist and a rheumatologist.

[PainConcernHelpline Moderator Community Champion Pain Concern]

Hi Lululemon22

I am a forum moderator at Pain Concern and have just been reading through your post. You have had some great support from other forum users.

I have included a link below to the Self-management |Navigator Tool. It is designed to help you navigate healthcare appointments.

painconcern.org.uk/the-navi...

Best wishes

Pain Concern