To think people like me are just being left to get on with it

[Ranoutofnamesss]

Had covid early March 2020, wasn’t terribly sick but slept through most of it and it was a strange experience. 6 or so weeks later I started with the oddest symptoms of my life, now have Mcas, most likely ptsd from the frightening experience it was and am not back to myself and wonder if I ever will be.
I can’t drink without a scary reaction, can’t drink coffee either, not much sugar, certain foods, feel easily tired, crazy depression and sadness at times…my body and mind isn’t my own..it’s 19 months now. I’ve had every blood test under the sun, chest scan, ct head scan, ecg..all ok. I, like many others, am not ok. I’m better than I was, but not ok. I feel as though I’ve just been left to my own devices, have had to research it all myself, am constantly booking my own procedures-heart eco end of the month as I still have a strange soreness around my heart area.
I have a toddler Dd and have to sit down after doing 3 minutes dancing with her.
Is this it for life now?
Can anyone help me at all, anyone medical or any positive news about this situation 🙏
Feel so alone in this, no one understands

Sorry for the stupidity but I had all my hormone tests at the worse point of my illness-June 2020 and they all looked ok, do I check again, surely if I wasn’t peri menopausal then, would I be now, symptoms were worse before

@Ranoutofnamesss yes I was on the Long Covid threads on mumsnet too for months. Unsure if they're still going.

Do you do lots of breath work?
I don't have MCAS like you but do try and eat an anti inflammatory diet.
It's grim but I refuse to give up believing that we'll recover fully in time,

@willstarttomorrow That’s what scares me, I worry my heart could be in bad condition or somewhere else, I have a young dd to care for, it’s a frightening thought

@ChequerBoard 1&2 is true, I just need the testing, doctor seemed pretty certain, but yes can’t guarantee until I have tests, whatever those are, as it seems pretty width washy on that front

No @chequerboard you jumped down my throat because I suggested she look into mast cell stabilisers, you said that was incorrect because she doesnt have a confirmed diagnosis of mcas. But if a diagnosis of mcas includes investigating the response to medications such as mast cell stabilisers, then it doesnt seem like a stupid conversation to have with her doctor. But you do seem to be jumping to an awful lot ofassumptions from my comments.

OP, I have long covid too. I caught it in March 2020 and still have a runny nose, racing heart, brain fog and fatigue all the time. But, I'm slowly getting better. Had to take months off work but am now back. Self-employed and lost a lot of income. I had a chest xray - normal. I had breathing difficulties for 10 months but that's been OK since Jan this year. I've had to give up dance classes etc and feel as if I'm living a half life. Could go to a covid clinic in big city but don't have the energy to travel there!
I can only say - get plenty of oxygen. Breathe deeply. It's supposed to be a bit like divers' bends, or altitude sickness. Look up inflammatory foods and avoid them. DH caught it when I did and he has just about recovered his energy, so there's hope :)

@ranoutofnamess i suggested cortisol tests be ause a collegue had some similar symptoms and it was cushings. Its probably not, but given you arent at the bottom of what it is its just another avenue that could be explored?

I'm committing the cardinal sin of only reading part of the thread here but...I'm a GP and I currently work in long Covid services. You are not my patient and I can't give you advice but...it sounds like long Covid to me and I believe you. Lots of us out there are aware of the physical problems associated with the condition.

My recommendation is to go to your GP and ask for a referral into a long Covid assessment clinic. They will then refer you into whatever pathway you need - from secondary care specialists to supported self management, it will be specifically for your needs.

We are aware that viruses can cause ME/CFS but we are seeing patients with long Covid present with symptomology similar to, but not the same as those conditions. It doesn't mean you have it and doesn't mean you won't eventually get better.

Mostly, you need to listen to your body and rest. Good luck. Xx

@Norugratsatall I don’t as it’s not really my breathing/chest that’s largely affected, more other parts of my body.

I’m the same and generally a positive and strong person, I was getting better, I thought, the last couple of months things have returned, I’ve seen a lot saying the same at the same point in being ill. I don’t understand that also, why so many have relapses on the same number of months in-eg-relapse at 9 months, 18 months etc. What’s happening to our bodies that at certain points things get worse, then better again. I wonder if the doctors know this and the patterns etc

Sorry to hear you’re going through such a tough time. A few years ago I had a really bad case of strep throat, it took me about 10 days to recover, I’ve never been so ill, I had fatigue for several months after, I was constantly tired and struggled with daily life, luckily after a few months and daily vitamins, I started to feel better.
Do you take Vitamin B tablets? I was recommended this and it helped.

Goodness, you are getting a hard time from some on here OP. My husband has long Covid. He works in mental health so can recognise when it's "all in your head". Covid didn't touch the edges of my exercise = a little toddle and a cream cake lifestyle. It crushed his always on the go, sporty lifestyle. He has had every test under the sun and luckily, in our area, we have a Covid team that dealt with him. They have no cure, because there isn't one at present. They did have some tips and tricks that make it more manageable.

@Flowiththego So sorry you’ve been going through similar. Yes, I had the runny nose for months, especially in the mornings, not sure if the anti histamines have killed that, are you on any treatments etc? Had the racing heart too, back near the start, it was very scary, I still constantly use my oximeter and pulse thingy, perhaps shouldn’t but it’s almost ingrained in me to check all is ok
I really hope you get better ❤️‍🩹

Hi OP I got ME/CFS after a mystery virus that went to my liver and gall bladder at 17, your post really resonated with me. The fatigue was crippling. I couldn't walk up my stairs. Days where I couldn't eat dinner. I threw up bile every night for hours for six months (or a year??it's a blur), had POTS, still (7 years later) get migraines that needed to be treated by one of the best specialists in the country just to be awake in the day. I dropped out of life, out of everything. I wasn't even offered CBT. I got nothing and I'm so angry they're not doing enough even now. The only reason I could go to the neurologist was my parents having insurance and us going private. Even on this thread, I can see that some people are finding it hard to have empathy. It's a struggle.

I am so so much better than those first three years. I have a part-time job! A life! I thought I would never get it. Have you seen any improvement at all in the last 19 months? I was very very slow to get better until I saw the neurologist, but I was getting there. I had several relapses and still do. Each one has been less severe than the last and lasts less time.

The best advice I can give you is to forgive yourself. Do not get angry with yourself if you relapse. You are not a burden. You are worthy of proper empathy, love, and healthcare. You deserve to be listened to. Take the time to rest whenever you can right now.

Sending all my best wishes for the future OP, it's so shit to feel this way xx

@Toomanyradishes Yes, it could fit that also. I feel like it covers so many areas of my body, it’s insane

@SecretSpAD Thank you 🙏 it’s so strange how it’s such a mystery even to gps, my own is just gobsmacked by it all

@SparklingStars10 Hi, yes, I started to take them pretty early on after researching and worrying about having pale lips and hair loss etc

@Ranoutofnamesss we are all still learning about it. I wish I had a medicine cabinet of treatments for my patients, but I have nothing. I wish I wasn't constantly surprised by how they present and the sheer breadth of their symptoms, but I am. I am seeing a lot because of my current job, but most GPs won't be seeing this often and it's as new and scary to them as it is for you.

@Ranoutofnamesss I literally gave you a full list laying out the steps you should take. You are very clearly only responding to people who amplify your concerns, or if you can rudely dismiss someone.

I have lifelong medical issues. I have an established MCAS diagnosis among others. I also have PTSD. You are hurting yourself more by totally ignoring advice by those KF us who recognise that the mind and body are linked - which in no way means you aren't genuinely ill.

Please read the suggestions I gave you about avoiding Facebook, forums, etc, and seeking appropriate support instead. You have every chance of improving hugely but continuing as you are is taking you down a very harmful path. Over-testing is harmful.

[quote Ranoutofnamesss]@Flowiththego So sorry you’ve been going through similar. Yes, I had the runny nose for months, especially in the mornings, not sure if the anti histamines have killed that, are you on any treatments etc? Had the racing heart too, back near the start, it was very scary, I still constantly use my oximeter and pulse thingy, perhaps shouldn’t but it’s almost ingrained in me to check all is ok
I really hope you get better ❤️‍🩹[/quote]
Stop using your oximeter as a routine thing. If you are genuinely acutely ill then you need specialist help anyway. It will do nothing but activate your stress, affirm your underlying anxieties, and encourage you to fixate more on physical sensations.

If you want to track your heart rate to monitor that for activity / energy output, do it with something normal like a smart watch. Over-medicalising your life is one of the worst things you can do right now.

*clarification: sorry, I meant if you become acutely ill with new heart or lung problems, the oximeter is useless as you need real help. But day to day you shouldn't need it.

@flowersinthefireplace correlation does not imply causation

Indeed - and I think a good many people on this thread need to bear this in mind you’re right.

@ikeepseeingit Oh, that sounds horrific and at such a young age, that must’ve been awful to go through 🥲
So glad you’re feeling so much better, did it take 3 years to be better?
I definitely have improved in the last 19 months, I can barely think about the few months at first at the worst point, it was utterly bizarre, the range of terrifying symptoms & feelings. I can definitely see improvement, but it’s exactly as you say, it’s so incredibly slow that it often doesn’t feel that way and when a relapse comes along, it’s just back to square one. The relapses aren’t as bad, but I think the comparison with when you’ve been feeling better is more prominent, if that makes sense.
I just can’t wait to feel the way I used to, to run or dance or go out for two days on the run and not be achey and flu like for the next 4 after that, to drink wine..or anything, to feel stable in my moods again, the majority of the time, not just the occasional days here and there

That’s what scares me, I worry my heart could be in bad condition or somewhere else, I have a young dd to care for, it’s a frightening thought

Your heart has been thoroughly checked. Along with lots of other tests. Please step away from
Pulse monitoring and oximeters and seek some help for managing the anxiety. Having a child can really throw you, but there is help out there.

@Innocenta I haven’t been for tests in a long time, the majority were at the start when I literally did not know what the hell was wrong with me and was in a constant adrenaline state. I only have my heart test coming up, I feel as though I’ve just left things and it’s not sensible to not check in it when 19 months down the road I still have aches in my heart area
I agree about the forums, I’d not been on for ages but tend to head back when I have a relapse to seek advice, see it anyone is going through similar. Otherwise, I tend to just try to get on with my life and focus on my Dd, it’s when I relapse and symptoms return quite strongly that I feel like this.
It’s the same with the oximeter, I was until recently barely even using it, having previously slept with it under my pillow since the start. It’s hard not to do these things at times after having oxygen dip below 90 or heart rate go over 100 when resting etc

Hi op
So sorry you are feeling like this
I was struck down with an incurable illness 7 years ago and I really understand the feeling of constantly on a merry-go-round of never ending symptoms
It's awful and becomes all consuming doesn't it.

I don't have any knowledge of covid etc so I can't offer any help, but I just wanted to extend some sympathy and support as even though my illness is different, I completely understand the exhaustion and sadness of losing so much of ourselves and being in a body that just doesn't work properly.

I wish you well and hope that you find something to help you