Does anyone here have M.E/CFS?

[Mumma02]

I am sick of going down so many rabbit holes with my health after 3.5 years - I just want answers!

Long story short; Had second child 3.5 years ago. Lost blood during delivery - was anemic for a while. Never felt 100% health wise.

After a year had some kind of flare of symptoms. Muscle aches, weak legs, feeling faint, breathless, brain fog, severe headaches, pins and needles in arms, fatigue, limb weakness (partiulcarly left arm), carpal tunnel that came and went in a few days, one episode of electric shocks shooting down arms. Symptoms all cleared within 4 months.

Following few months had odd symptoms pop up here and there. Had a few episodes of tachycardia and feeling like I was starved of oxygen even though I wasn't.

Got covid in Oct 2021 - que POTs symptoms.

Booster Vax Jan 2022 - Total autonomic meltdown. Temperature dysregulation, internal vibrations, brain fog/spaced out, fatigue, feeling weak, nausea...

Resolved for the most part after 6 weeks with some symptoms popping up here and there and the fun development of burningn feet which comes and goes as well as random sunburn/stining sensations all over which come and go.

Last 2 months - kicked off with awful daily nausea, fatigue, muscle aches, swollen and painful occiptal lymph node for a few days, feel like I have a sore throat coming on...totally fed up and going round in circles!

Does it sound like M.E? Really don't want to have it but feel like a diagnosis is better than none at this point.

I've had most of these post covid/vaccine but didn't have them before.

What I did have
Lightheaded/dizzy
Pins and needles
Muscle twitches
Muscle aches
Migraines
Chronic neck pain
Stiff shoulder
Weird disconnected feeling in eyes and sore eyes (like you had soap on them)
Burning skin on forehead and nose and upper cheeks (not red at all) felt like chronic sunburn

General feeling of 'off' (not suprising)

What I've still got (8 months later

Intermittent versions of all the above except the lightheaded thing has vastly improved and the pins and needles vastly improved too

Some days I will have headache, burning face and painful neck and maybe one spell of pins and needles for 5 minutes

Other days- next to nothing!! But a sore shoulder and sore eyes.

I've had blood tests, thyroid function tests, chest X-ray , - I haven't had an MRI (waiting on that)

I think basically covid and/or vaccine has certainly given a great many people the equivalent of ME/CFS/fibro to varying degrees -

I also think I've probably got some disc/spine degeneration which is contributing.

Do you think though you had strong levels of all these symptoms pre covid, pre vaccine??

@Crikeyalmighty no definitely not. I never had neuropathy, temperature dysregulation, POTs, low blood pressure, internal vibrations, sensory skin problems, coathanger pain...probably more I am forgetting before covid/vaccine.

It's utterly depressing. Have you actually been diagnosed with anything or been told there is hope of recovery?

Well I've had some stuff ruled out- but as there isn't really any specific treatment for ME/CFS/fibro or long covid there's no great advantage to giving it a title unless I was in a position needing to claim benefits- which I'm not.

Basically it seems my nervous system is fucked! Like you-I'm either cold or hot, neuropathy, pins and needles and weak muscles in arms and legs, shoulder and neck pain, migraines and weird hot skin burning (but no redness) - I'm told that's small fibre neuropathy. It sent my BP sky high .

Some symptoms have declined but not 100%.

To be honest I'm just working on the stuff I can change, losing weight, taking supplements, getting cholesterol down, light excercise and walking

I agree with you it's 100% depressing. I am on a forum for long covid support which helps, because you realise there are so so many out there of all ages and previous fitness levels and many have significantly improved but in many cases it's been 2 to 3 years.

I had Covid in June 21, pushed myself to be normal, my health continued to decline over the following months. I think government guidance at the time to keep trying to improve with exercise to improve fatigue had detrimental effect to my health. I am under the Long Covid Clinic. I have been diagnosed with PoTs and have now been referred to ME/CFS unit as I am now classed as suffering from Chronic Fatigue.

I use compression socks which relieves the burning sensation. You can buy cheap ones on Amazon to see if they help before paying for decent compression socks.

I had to push to get referred to Long Covid Clinic, have you managed to get yourself referred?

It’s true that getting an official ME/CFS diagnosis will not help you as there is no cure, however at least you will have an answer and know that you’re not going mad & imagining it, giving yourself the permission to accept you are ill, get the limited help available and to properly learn pacing.

If you are diagnosed with PoTs you can get medication to lower your heart rate and diet advice that is supposed to help.

I’ve found a lot of stuff online is conflicting, so I’ve stopped looking & carefully consider so-called expert advice.

The ME association & Dr Charles Shepherd I have found to be the only valuable source of information I have found so far. I was also recommend by aE sufferer, the workbook, Classic Pacing, for a better life with ME by IngeBorg Midsem which has really been invaluable in helping me get my head around the art of pacing.

Everyone is different and not everyone’s symptoms are the same all the time and you know your body the best.

Ultimately, you know what’s best for you & if getting a diagnoses is what you need, push your GP to get you referred to your area Long Covid Clinic or see if they can refer you to an ME specialist if your GP has already completed all the testing required to rule out other health issues.

Best of Luck on your journey