How do I approach my gp about this ? I think I have ME

[Nospoons]

I’ve got an appt tomorrow and I’m sore I have chronic fatigue syndrome. I can’t work anymore and I barely go out. This has been going on for 2 years now and I just want an answer-I feel I’m just left with no explanation for being so unwell and I’m sure it’s ME / chronic fatigue

*sure

I expect you know already but it’s a diagnosis of exclusion. So I expect your GP will want to take bloods to look for either reversible (like anaemia) or serious causes (like cancer). So the answer may take a little while and that can feel frustrating when you are desperate for some certainty to allow you to plan your life to be as good as possible within limitations. I hope your appointment goes well.

You don’t, you go and specify your symptoms- how long, how bad, what you’ve tried.
So it’s been two years since I felt normal, I need a nap every day but I’m still exhausted, I can’t walk more than x, y, z…

The GP will do blood tests in case there’s an easily fixed issue. A friend feels like a new woman with heavy doses of VitD and Vit B.

I sadly ended up on vitD, iron, no improvement, thyroxine… but no improvement. So I now have a diagnosis of fibromyalgia.

The thing is, it takes a while to rule things out and you have to keep going and saying ‘no improvement’.

Also, be able to say your diet is good, that you are attempting to be active etc.

This is what I’ve been doing - for 2 years and I feel like I’m being pushed back and forth with the same things ?

It was initial bloods , all ok just a bit anaemic . Put on iron and that was then ok ever since. Thyroid fine etc. told to repeat bloods in 3 months , all fine.

No better and ended up having some other tests (i think it was a FIT and calprotectin test which came back fine). Blood pressure etc all fine . BMI fine. Hba1c fine. but anaemic again so referred to gynae who I saw and had a scan and no issues and discharged.

More bloods, referred to neurology (that took 7 months to get an appt) all gone no issues found. Gp re referred me to gynae as said i was anaemic again and it must be gynae related but they said it was only just under the level it should be and not related to periods. Gp did hormone tests and has been saying peri menopause but all hormone levels fine, i even saw someone privately who said im nowhere near peri menopause yet (i wanted to make sure as I’m 40).

I’ve just been exhausted for 2 years I have brain fog, I’m tired but then sometimes I can’t sleep. I feel too tired to eat sometimes I have to force myself . I can have a 5 hour nap in the day wake up feel rubbish still then be asleep again an hour later 😭

vit d and b12 fine too

it’s like the gp wants to go round in circles and I don’t even know who I need to see is it neurology again ?

Rheumatologist usually diagnoses I believe.

all the best Op x

Ok, that’s good, you’ve done all that.
You can say ‘now what?’ Do we need to start thinking about things like CFS?

The thing is, I don’t think there are treatments that help, it’s just managed by lifestyle.

Are you in pain? I am medicated for pain, but it helps my sleep as well. I don’t sleep well due to fibro.

I had similar for two years and I think I had long Covid.

OP, you probably know all this but some doctors don’t even accept that ME is an illness. They’re convinced that it’s deconditioning and/ or depression.

So if you’re thinking ME is a possibility, it’s probably good to stress it’s not like normal tiredness AND you really want to be active (as long as that’s true, of course) . If you had active hobbies that you can no longer do because of feeling unwell, tell the GP that. It can also help to give specific examples: eg ‘I used to be able to walk a mile to work with no problem, now I collapse after walking to the corner shop’

Depending where you live, there may be a specialist Chronic Fatigue clinic that the GP can refer you to. I think the GP would have to rule out everything else first though.

I will tell them again as I literally hardly go out as I’m either too exhausted or if I’m not I go and then I’m bedbound for days after so it makes things worse. I just want to go back to how things were before this

Someone in my family got seen by an endocrinologist who diagnosed me/CFS after all the tests excluded everything else.
Ask to be referred for me/CFS diagnosis. You've been passed around the houses enough times now.

Unfortunately in our area rheumatology have stopped taking referrals for ?fibromyalgia ?CFS
after being inundated.

I can somewhat understand this - giving it has no specific rheumatology treatment but it’s shit for patients who would benefit from the diagnosis alone and for those few who it turns out to be an unusual lupus or rare rheum condition.

It may be that your gps hands are tied with regards to rheumatology and sounds like they’ve been good at investigating and referring your presenting symptoms.

It’s worth having a chat with your gp about options/next steps/ asking about CFS.

Also would it help you to have a trail period of using the management strategies for CFS and see how you feel?

My go has even asked me at the last 3 appts if I think im depressed ??- well yes I am NOW but i wasn’t before !!! I was happy and feeling this awful has made me frustrated and depressed at that but nothing else in my life.

I was full of energy but I had got covid then had a mmc then got shingles virtually back to back - I thought I was getting better but kept falling asleep in the daytime, I allowed myself to nap thinking it was my body healing and the naps just got longer then each morning I was struggling to get up literally couldn’t wake up and stay awake and it got worse from there and that’s why im depressed !!!

I have CFS/ME and was diagnosed in 2015. As previous posters have said it's a diagnosis of elimination. Lots of blood tests etc. It's not easy and honestly a diagnosis doesn't change much in terms of treatment because there is none lol. However, if you plan on going back to work a diagnosis will help with reasonable adjustments.

Having those naps was the best thing you could do tbh. Plenty of evidence that the worst cases of long covid (which is, basically, CFS, but you know which virus caused it) - are caused by people trying to power through their symptoms instead of resting.

Also just to say I was diagnosed in 2015 but my symptoms started in 2007 after glandular fever! It was a long, long journey especially as I was young so they were doubtful that it was CFS (🙄). You might not get a diagnosis immediately and you should probably prepare yourself for that possibility.

So maybe your GP was trying to see if your symptoms were down to depression - and to be fair, depression can make people feel very tired.

You have put your finger on a crucial difference though, OP. Where you say when you’re not exhausted, you go out and then you’re bed bound for days.

This sounds very like post exertional malaise, which is the distinctive symptom of ME. Because in most illnesses you feel better from activity, or at least, not worse, or not much worse . But in ME you feel a level of fatigue that is out of all proportion to the effort of the activity - crushing physical and mental fatigue which may come on straight away, or have a delayed onset, and which can last for days, weeks….

I think it’s now mentioned in the new NICE guidelines on ME/ chronic fatigue so you could tactfully mention that to your GP if you feel it’s appropriate.

Is that not because ME stands for myalgic encephalomyalitis and it has been medically proven that there is no physical muscle or brain inflammation.
I believe most doctors accept the term chronic fatigue syndrome though. In fact I thought the term ME had fallen out of favour completely and been replaced with CFS.

OP, my guess is you have Long Covid.
Get a referral to a LC Clinic.

I have similar though I have worked up to doing some PT work.

I personally found the long covid clinic bloody useless. I’m already doing the lifestyle things to help.

good luck OP it’s shit. Do you have any support??

I have a fibromyalgia diagnosis and like others it’s a diagnosis of exclusion.

It definitely does sounds to me like CFS/ME do not be fobbed off with the usual “a bit depressed”

Also a lot of us with CFS/fibro have found that we have also been misdiagnosed with vitamin B12/vitamin D deficiency in that the levels are no where near high enough in this country (vitD) or in the case of vitB12 we can have loads in our blood but it can’t be used by our cells.

II just came across your post. Ive had CFS since 2019, Im older, not a Mum. Some say supplement work, Ive tried so many and even if they do, it’s impossible to know what combination. Low Dose Naltrexone “cured” me for 3 months I started it about 4 months after getting ill. The many positive benefits wore off, but it still helps and I believe I would be much worse without it. Last September I came across Nicotine Patches (primarily used for people with Long Covid) these were tough to start with, made me quite ill getting virus out of system, but then I had 6 months of feeling very well, this gradually reduced and not so many benefits from nicotine, but still better than I was so still taking them. If you are curious and on Facebook there’s a group called Renegade Research Nicotine something like that and you can find the information. Good luck.

There are lots .more tests that should be done before they diagnose ME. Don't encourage them to diagnose ME. Encourage them to help you work out what it is.

Not because I don't think ME isn't real, just that some doctors too readily diagnose it before making sure it isn't something else, that may be treatable. A lot of people with my condition Myasthenia (for instance, not saying you have it, just giving an example) are wrongly diagnosed for years before discovering they actually have something treatable. Once an optician suspected myasthenia my initial GP tests for it were negative, but thankfully I had a very astute GP who sent me to a neurologist who could do much more specialised tests.

Don't be fooled into thinking that they tests they order at the GP surgery can rule out any condition

However also don't let people make you think horrible crushing fatigue is "all in your head" or "just that time of life". I put up with being dismissed on and off for over 20 years before finding out I had something treatable

Sorry just realised this is a zombie thread that's been reopened to promote random cures

How are things?
I have cfs.
Was diagnosed last yr
By a private rhuematologist consultant