Sound Familiar?

[iOwlface]

Hi everyone! Hope you're all well and apologies for the oncoming rant.

I've been having musings about potentially having ME for a while now but getting a diagnosis is proving difficult.

A few things I've noticed:

-I wake up groggy regardless of the quality of sleep I've had (good or bad, long or short.) After about 30 mins to an hour I want to do nothing more than crawl back into bed and sometimes have to sleep for an hour to get up and go again.

-I have IBS anyway, but I've heard this usually goes hand in hand with ME/CFS?

-I'm starting to not be able to get my words out. I've just started teaching an evening class and sometimes I cannot for the life of me remember what a certain tool is called or what phrase I need to use to explain how something is done.

-I'll be looking into something and taxing my brain then all of a sudden it's like I'm hit with a wall of overwhelm. Then the fatigue hits, mum usually sees my eyes starting to close and tells me to put it all away and sleep. The more I concentrate, the worse I get.

-I regularly get unexplainable aches and pains in my back, wrists, hips, knees and ankles.

-Recently I had a tumultuous week and stupidly kept going, got to the Friday night and I felt like I was starting with the flu. Barely slept the night so spent all day Saturday napping, nursing a slight fever and monitoring my asthma. Had a decent night on the Saturday and woke up feeling fine on the Sunday.

-I regularly get spells of dizziness and feel nauseous most of the time. (Mornings are worst and I regularly check for pregnancy.)

-Whenever I get a cold/covid etc it takes forever to recover and the fatigue lingers for months. I've been to the GP several times about this with bloods taken and no follow up because everything is 'normal'

-Exercise is a no go. Trying to walk anywhere fast just won't happen, I feel like I have tension bands around my thighs or I'm walking through sludge. I end up with a massive headache after any form of exercise and it takes me a few hours to recover.

-Light. I've always been sensitive to light - I wear shades throughout the year and often indoors. Sometimes if the room I'm in is that bright and there's no air circulating I feel like I'm going to pass out.

-All of these symptoms amount to a severe lack of motivation. My head wants to do things but as soon as I start, I feel like my body gives up. Some days are worse than others. My mental health has caused a fair bit of trouble over the last 10 or so years, It's manageable now and I'm no where near as bad as I used to be, but it's still there and probably always will be.

Apologies for the long ass message but do some of these if not all sound familiar? I don't want to be one of those that keeps 'pestering' an already stretched NHS system but I just want to find out what's going on and get on with my life. I understand a diagnosis isn't necessarily everything and putting a label to something shouldn't be so important, but I know there's things that can be put in place and I'll have somewhere to start managing this issue. If I take a letter like this, do you think it'l get me somewhere? This has been going on for at least two years if not more. I understand they ask for a history of 3 months?

Anyway, thanks for reading

[ALKT]

unfortunately many of your symptoms do sound familiar . i would recommend checking out science for M E website . they could point you in the right direction .

[peege]

In UK my CFS was diagnosed with may blood tests to eliminate anything else. Not any support from NHS "there's no cure, just manage it" according to the GP.

My son spent the best part of 18 months years sleeping , it was very hard on his wife & small son. I had wondered if it was CFS as he had glandular fever at 17, that or clinical depression or lymes disease (he spent some time in Cambridge & often in the Cam).

Long story short, he has been diagnosed with bipolar. Such a relief, now he's on correct dosage of medication & back to his normal after 3 months voluntary admission to a psychiatric clinic for endless tests, various antidepressants, seeing a psychiatrist every weekday going home every weekend & Wednesdays (to look after child) ........they live in France where most people have health insurance of varying levels - thank goodness.

So what I'm saying is see your GP for blood tests & it's not always ME/CFS. Good luck

[strongmouse]

Hi,

sounds like you are having a tough time and I can understand your wanting a diagnosis to manage your health better.

It is really important to discuss with your GP so that they can exclude any other potential diagnosis. There are other diseases which overlap with ME. Poor sleep can have a long term effect on our health.

As peege has said, there is no specific treatment for ME. Usually it just managed by your GP, especially for secondary symptoms, and with self-management such as pacing. You could keep a symptom diary for a few weeks to see how frequently they occur and when, alongside any activity you have done or potential stress factors.

If you would like to discuss with anyone then the ME Association and Action for ME have helplines and information about possible tests your GP can do to exclude other illnesses. There is no one specific test that can be done for ME - yet! There is research ongoing into the illness.

all the best.

[MayGodBlessYou]

yes sounds familiar, 17 years here, to varying degrees,

i think that if i had rested early on, i might've recovered,

just didn't understand the concept of a moderate life.

so more, as much as possible, i rest

also, i avoid covid injections or any injections. years ago, a friend's friend was improving from severe exhaustion, had a flu injection, and relapsed.

we just can't do as much as we want to

[Wheat]

hello iOwlface, ive had m.e. for decades. No help from gp. Getting worse for years. Recently diagnosed with P.A. Found out B12 injections are often beneficial for pwme as often B12 deficient.

The nhs/gp blood tests and ranges are often not accurate or 'normal' and mis interpreted..

Suggest you obtain your blood tests and post here.

I have hypothyroidism, that can also cause awful fatigue, brain fog.

Best wishes,x