Possible long covid? What to ask doctor?

[Bloogie]

Looking for some advice about what to ask doctor next week. I had Covid around 3 years ago at the same time as burnout/breakdown due to chronic stress. I was unwell for 3 months and then got better but not back to normal functioning. Fatigue, aching, breathlessness that comes out of nowhere, a heart rate that shoots up to 115 if I just go upstairs. Weird numbness and tingling. Frequent colds and flu that wipe me out for weeks. I’ve also had an episode of vertigo and problems with the vision in one of my eyes. I have ADHD so remembering the details/dates etc is tricky but I want to go into the doctors with all the relevant info so I can hopefully start getting some answers.

Could it be long COVID/cfs/me or something autoimmune? This is just not going away by itself and I don’t want to get fobbed off! (P.S. I did have low B12 and D after covid but this was fixed with B12 injections and supplementation - most recent blood test results all ok). Any advice about what info to bring and what to ask would be very gratefully received. Thank you so much.

How old are you? If 40 plus it could be peri. Tbh a heart rate of 115 after going upstairs isn't that high.

Have you tried all lifestyle issues like omitting alcohol and caffeine, keeping hydrated, losing weight, lots of activity to promote good sleep and mood?

If all bloods are ok try not worry too much, there's been lots of nasty colds around so recurrent illnesses not that unusual

Do you think anxiety may be playing a part here? The more you worry the worse you feel with stress hormones soaring so even trying calming apps may help.

Thanks for coming back to me @Janiie You’re right I am anxious about it and I’m sure calming apps would help with the stress but it’s been 3 years now and no matter what I do I can’t get back to feeling fully well. I’m post menopausal (full hysterectomy). I have tried really hard to get better and it’s just not working.

Sounds like you've had a very rough time, I know I'll be stating the obvious but have you considered hrt? It does sound related. If all lifestyle issues have been addressed to improve quality of life it might be worth a try. If already on it get a review and see if dose needs tweaking.

It's possible these could be long COVID symptoms - they sound very similar to mine (blood tests all fine too, which has ruled out anything else causing it). Anxious feelings can be part of it as the nervous system is out of balance. I found this a useful guide when I was trying to work out what was going on https://www.rdash.nhs.uk/services/long-covid/long-covid-information-for-patients/

I would write down a list of everything you're experiencing so you can ask your GP (I did this and she basically went 'yep, yep, yep' down the long COVID checklist!), and rough timings where you can - definitely mention this has been happening since you had COVID. Good luck.

I should say now I know what it is, there are things that help - lots of rest, more rest than you think you need, and anything that calms your nervous system (have a look at vagus nerve advice - breathing exercises and cold water/ ice packs help me).

Thanks @martha79 will have a good look at that information before my appointment. Really appreciate it.

I will ask about my HRT as well 👍

Sounds like long Covid. Check out CFS recovery (Miguel) on YouTube. Brain retraining works for this. Also medical medium (Anthony Williams) also very useful

Yes it sounds like long Covid or ME/CFS. But there are other things it could be. Have a look here
for info on both conditions. There is a helpline too. I’m pretty sure there is some advice on how to approach your GP. By the way, most GPs know very little about ME/CFS so make sure you are well informed. Thee is also a list of ME and long Covid NHS clinics on this website.

https://meassociation.org.uk/

Thank you so much @ThatKindPoster and @dizzydizzydizzy I will have a good look at everything. I honestly feel like my whole nervous system is out of whack and I just can’t get back to normal functioning. Sorry to anyone going through similar. It’s very debilitating.

Re ‘nervous system out of Whack’ that is typical for ME/CFS. I recommend meditation. I use the Headspace app. It has a beginner course within in it, which is good if you have not done it before. The other thing which helps is breathing exercises, such as what is commonly done in yoga classes.

this might help:

I’m using Headspace to help me stress less, and I wanted to share my 30-Day Guest Pass with you: https://headspace-web.app.link/iz2Vaj5WT1b

Thank you 🙏 that is so kind

My pleasure. I’ve had this for a few years. Any more questions- feel free to ask.

Incidentally, the jury is out, but long Covid and ME/CFS might even be the same thing.

Thanks everyone for the advice and support 🙏. I wrote down all my symptoms and saw the GP today. Blood tests booked for next week but assuming they don’t show anything significant then I will be referred to a specialist chronic fatigue/long covid service for further assessment and support. GP doesn’t think anything autoimmune but has asked me to keep a diary of anything that flares up. Has also suggested increasing dose of HRT to see if that eases some of the other symptoms. Really pleased to have been listened to!