I think I might have ME / CFS … help/advice?

[Independant]

Hi
As the title says.
I’m going to see my GP in a couple of weeks about my ongoing fatigue which is often crippling to the point where at the end of the day once I’ve put my 2 year old to bed, I cannot do anything.
I struggle to do daily tasks for a long period of time (I.e cleaning or housework) and I find my job is truly exhausting although not physical (desk job). I have always had really good iron levels which got better through pregnancy (strangely). I take sertraline for some anxiety and have been taking this since 2018 ish.
I can sleep for 12 hours or 2 hours and I still feel just as tired, like my sleep quality is really poor. I don’t wake often in the night unless my son wakes me which is very rare these days. But I find it so hard getting out of bed each day. I don’t ever feel like I truly “wake up”.
I can’t exercise (I used to enjoy it and exercise often 5 ish years ago. Now if I go to the gym I am a write off for the next 48 hours!

I feel like people don’t believe me or it’s a “yeah me too” … I feel like no one actually understands how absolutely ball-bagged I am all the time. I wish I didn’t feel like this. I want to have tonnes of energy and go to the gym and keep on top of cleaning and be able to sit at my desk at work and not feel like I’m fighting falling to sleep all day.

Does anyone have ME / CFS and if so how long did it take you to get a diagnosis? And how do you manage it?

Thanks in advance.

X

I'm in the same boat as you OP. My dad had ME so I'm wondering if it's genetic. My symptoms actually started when he passed away, initially the fatigue was a combination of emotional exhaustion plus the fact I'd been awake at his bedside for 2 days and nights without sleep. 2 months afterwards I felt like the fatigue was improving a little, then lockdown one happened. I hoped the break would be the reset my body needed but instead I started with dizziness and brain fog.
Since then the body aches have got worse and the fatigue and brain fog are still there...
I havent really pushed to see a GP, it's a 2 hour wait to get through on the phone just to be told if its not urgent try again another day...
I need to do something though, its been 2 years now. I guess I'm also worried about being believed, until you've felt that debilitating fatigue it's hard to understand how much worse it is than just being "tired". My GP is lovely and I'm sure she won't be dismissive but a previous GP I had admitted he didn't believe in mental health issues, thankfully he retired several years ago now!

I was diagnosed with fibromyalgia about 15 years ago (by a rheumatologist) and have the same crushing, overwhelming fatigue that no amount of sleep relieves. I really don't know whether I have fibro, ME or CFS. I've found pregabalin to be somewhat helpful with energy levels. In my case I think it's exacerbated by perimenopause, so I'm trying to get on HRT (which has been a major bloody battle but that's another story). I think both hereditary and hormonal factors and especially stress play a role in my symptoms.

As for advice: in addition to pregabalin I take a large dose of a vitamin B complex every day - apparently B5 is especially important for fatigue. I've made major life changes including changing jobs to work from home to minimize stress. I accept that I need to rest a lot and that if I have a very active or eventful day, I will pay for it the next day. I get moderate exercise every day, either walking or running, but I can't do more than about 5k or it will wipe me out the next day. I try to accept my limitations and go with the flow, as frustrating as it is. Sometimes things just have to wait until I'm able to tackle them. Sometimes I will have unproductive days.

I've found that awareness has improved, or at least all the health professionals I've mentioned it to seemed to have some understanding of it as a recognized neurological condition.

I think it tends to be a diagnosis of exclusion.

Hopefully they'll rule out a number of other things such as hypothyroidism, low iron, b12, vit d and folate etc. As your symptoms could be that.

I also thought crippling fatigue after other things were corrected might be ME that has really been going on since I was 37 after my first child, but I've been amazed at how much hrt has helped energy too. I was diagnosed with hypermobility which can cause a lot of fatigue but even that's improved a lot on hrt.

Thank you everyone. I have a GP appointment on Thursday that id booked for another issue (which has since sorted itself out) but I’m going to go to the appointment and talk about my symptoms and ask for some tests to get closer to a diagnosis.

I am currently off work since yesterday due to a horrid virus (not covid) and it’s absolutely wiped me out. My fiancé has also had it but has gone back to work today feeling relatively well. I still feel like I’ve been hit by a train.

Something isn’t right… I’m in my twenties I should be abundant with energy and I just feel so lethargic all the time. It’s making me feel so down. Work is stressful at the moment and it’s just exhausting. It’s getting to the point where I can’t face the thought of going back at the moment until I can sort out what the hell is going on with my body. I’m contemplating asking my GP to sign me off for a couple of weeks to see if that helps. I don’t know if it will but I feel like I just need the world to stop spinning for a couple of weeks..!

I was diagnosed with fibromyalgia 2 years ago after lots of similar issues with nothing showing on blood tests.

A delve into google will get you symptom lists for the illnesses you suspect and may assist you with narrowing down possible outcomes. IME, most GPs these days are open to sensible patients doing their own research.

I figured I had fibromyalgia when I ticked 95% of the symptoms listed, some of which I hadn't connected were part of it. It was also helpful having it to hand when speaking to the doctor as one of my issues is memory related!