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

Well judging by the amount of times people get fobbed off by doctors even with significant physical symptoms i rekon you should keep asking for help. I work in healthcare and its amazing what gets dismissed.
It sounds like long covid.

@Tiredofthetired and @DrinkFeckArseBrick Nobody is saying that either Long Covid or other conditions like post viral fatigue are 'just' psychological.

But it's very limiting and very unrealistic to decline to acknowledge the fact that the brain dwells in the body. OP, for example, has been told she has PTSD. There have been fMRI studies done showing that trauma survivors literally have visible changes in their brains. That isn't some fluffy, imagined, dismissible thing; it's a big, big deal. Think how much a brain injury is known to affect people if it's caused by a one-off physical trauma... Our understanding of the physical impacts of PTSD is still in its infancy, but those impacts exist.

I'm not for one moment suggesting Long Covid is imaginary or fake, or that OP doesn't have genuine problems. But speaking as someone with very serious medical conditions myself - the reality is that your brain is part of the picture. Like it or not.

It sounds terrible op but you have to realise covid is such a new virus nobody really knows how it will behave in the long term yet. There's probably not that much that can be done for you at this stage , you can't get a doctor to see you round here for love nor money . It really is a sad situation for you and everyone else who needs treatment for anything right now

Not commenting on the main but but taking antihistamines twice a day for a year is not unhealthy. My daughter and I take them daily and have done for years.

Only you know what you have got but along side the Covid and ptsd it does sound like you are also struggling with intense anxiety which can cause many of the bodily symptoms you described. A traumatic event and ptsd can trigger it. Basically your body is in a permanent state of fight or flight mode now and is being prepared to run etc at any moment which won’t help with your tiredness or aches and pains. I would speak to your GP about anxiety medication and CBT therapy. It won’t solve the long Covid issues but will help you learn to deal with the stress and anxiety of having a long term condition.

I agree with this. I'm not discounting your possible long covid or that the symptoms could be caused by something physical but i have had ptsd, anxiety and depression and i was absolutely riddled with physical symptoms as well - some of which you've described. I had no physical illness but it bloody felt like it at times!

Have you spoken to your health insurance about treatment for the ptsd? EMDR and CBT worked for me. It's an incredibly serious psychological condition so don't let your search for a physical cause put you off also getting your diagnosed ptsd treated. If nothing else, at least then you won't have the ptsd to contend with as well as everything else.

So unhappy about all the posts saying that this is a psychological illness. Long Covid is real! Millions of people are suffering from this very real physical condition and dismissing it as a psychological condition is so harmful. People used to say the same about ME and it has been proved that they were wrong.

That's absolutely great, but the op DOES have a diagnosed psychological illness too, one that's incredibly well known to cause physical symptoms.

So unhappy about all the posts saying that this is a psychological illness

I don't think people are saying that. This isn't black and white - it isn't a case of either or. Physical conditions can be hugely exacerbated by one's mental state and vice versa. Poor mental health can cause a range of physical symptoms. Just because it may be partly or wholly psychological doesn't mean the symptoms aren't real or that the sufferer is malingering.

In any case... So what if the symptoms are all underpinned by mental health? It doesn't make them any less real, so I'm not quite sure why the op is so absolutely certain that her symptoms are long covid and not ptsd related. Surely the important thing is ruling EVERYTHING out? Not just dismissing the potential psych cause?

@BonnieGoWayward

There are so many people who 'had covid' in March 2020.

Considering testing wasn't that much of a thing in March 2020 meaning there were a tiny number of actual confirmed cases at this point, it's fascinating that so many of them tend to be MN users.

That's the point though - testing wasn't a thing back then so it's been widely recognized that there was likely a large number of people who had it but were never tested.

I had a flu like illness and total loss of taste and smell in March 2020 but those weren't yet recognized symptoms (only began to be reported as such about a month later). At the time I didn't think I had Covid as didn't have high temp or bad cough but I'm now fairly certain it was.

In any case I believe the OP had it. I don't have much to offer other than sympathy. I suffered diagnosed PTSD after an anaphylactic shock reaction and had both physical and mental effects from it. I also suffer from chronic idiopathic hives now (unrelated) as my body had an immune response to who know what years ago and now it's self perpetuating. Fairly mild and manageable though.

OP I hope you find the balance of what you need for your physical and mental health soon.

I believe what you're going through, and I believe it is related to covid. What you're experiencing with regard to getting treatment is what millions of people with long term health conditions have experienced for years. Yes, we are just being left to get on with it. It's shit, but this is the reality of life with disability.

OP, in terms of practicalities, I would suggest this - not intended as medical advice, just peer to peer guidance:

Don't pursue further testing and specialists in general, but do continue with standard preventive medicine (e.g. smear tests, vaccinations) and, obviously, seek urgent help if an acute symptom arises.

Set up weekly counselling with a trauma-informed counsellor - ideally, if possible, seek a personal recommendation from friends. Consider (with the counsellor's input and help) whether you want to try a course of EMDR or ketamine therapy.

See an expert in MCAS, clarify the exact nature of your symptoms/diagnosis, and optimise your treatment regimen.

Introduce meditation and build towards a daily routine - aim to reach 30 minutes per day, as this is the most well-supported duration (according to a doctor of mine who is a widely-published pain expert and works in a specialist centre in London).

Modify your diet cautiously, but not with excessive rigidity. Take effective probiotics/prebiotics (the ones most recommended by UK experts are Bimuno and Symprove).

Do not overdo it. Limit your activity while your body recovers and processes and heals from trauma. I'm not saying to be sedentary - but 'pushing through' is very hard for a hyper-reactive body to tolerate. Discuss with your doctor the possibility of rescue meds for situations where you are (both physically and mentally) overwhelmed and breaking down.

It's still very early days, and you have every chance of things improving hugely. But you do need to take action and modify your approach.

P.S. get far, far away from Facebook pages and forums about all this stuff. It will not help in the long run - there are of course normal people struggling, but there also tends to be a subset who are very damaged, competitive, and use these places to feed their egos and seek attention. This is really well known as a problem with any online chronic illness space, unfortunately. You are still you, and absorption in the 'sick world' will give you very little.

I had covid back in March 2020 too, was only confirmed by an antibody test in June 2020.
Started off with feeling tired, a week later I had anosmia and headaches, at this point anosmia wasn't a recognised symptom.
I never had a cough or fever so didn't get tested.
A week later I started to get a tight chest and struggled with my breathing, to the point I called 999 twice, they would check me over and because my ecg and O2 levels were normal they put it down to anxiety.

It was a scary time as like you I'd have lots of different symptoms come and go, my heart would race, chest pains and tingling/ pins and needles feeling.

I returned to work in early June still with symptoms but more manageable.
I could commute and do a full day of work and come home a make dinner.
I would literally do the bare minimum to get by and rest when I could.

I had my Covid booster 3 weeks ago and since then my symptoms have relapsed and I've not been able to work since then.
I was fine after the first and second dose so not sure why this has happened.
Like I said, I have not had a day off since June 2020 and since I had the booster I've relapsed.
I have had 5 PCR tests in the last 3 weeks and all are negative.
I'm basically at home just taking it easy and waiting for the symptoms to ease.
I'm so fed up.

@BonnieGoWayward

There are so many people who 'had covid' in March 2020.

Considering testing wasn't that much of a thing in March 2020 meaning there were a tiny number of actual confirmed cases at this point, it's fascinating that so many of them tend to be MN users.

Testing wasn't available in March 2020, I only know a couple of people who managed to get a private test. But I work with 7,000 people, many of whom travel on the tube every day, is it really so inconceivable to you that many people had Covid symptoms in March 2020 but couldn't get tested?

To really blow your mind - some people even had Covid symptoms in February.

Thank you to all of you with so much helpful advice and kind words, I really do appreciate it 💐
Feeling extra down this week, think period is approaching, the effect on hormones/mood has been crazy, I’ve never experienced days where I just feel so hopeless..this virus is the strangest thing

I'm so sorry OP.

There will be better days (although it might not feel like it right now).

I hope you have as good a weekend under the circumstances as possible.

They have done every test and found nothing physically wrong, which could indicate there is a mental health issue and that should be explored to help th op

Where did you get that medical degree?

You are aware there are many conditions that all the tests show nothing but they exist nonetheless?

Just a suggestion but could menopause have started? Perhaps even been brought on by Covid?

Sorry I see you've considered this. I also see you're taking vitamins and you've had thyroid tested. Vitamins and supplements can skew results of many tests so that's something to consider eg I see you've mentioned hair loss - if perhaps you've started taking biotin to improve hair this would likely give a false result on your thyroid test.

I hope you feel better soon OP.
It is scary.
Some viruses stay in our bodies for the rest of our lives, see varicella zoster, for example.
I found quite weird, from the beginning, that the antivody tests were stronger 15 days after infection, instead of straight away after fighting the illness.
Also, PIMS-TS peak appears around 3 weeks after the covid's peak, around 3 weeks after the child got covid, many of them without symptoms.
So I wonder if this virus lingers around for longer thsn we thought.
The cytokine storm will explain quite of the post viral issues, but why for so long? I do hope they find an answer soon, and hopefully alongside that, medication to treat it.
On top of the physical issues, we all also have lots of stress and trauma related to covid, just to complicate it more. But I am 100% positive people are not making this up, and it is infurating to see so early comments in that direction.

Op, I could have written all your posts. I have exactly the same symptoms and timeline. It is definitely physical and not related to my mental health. I did not have PTSD from my Covid, and my flare-ups have not been related to other stressful events in my life. I am convinced that it is related to my menstrual cycle, which stopped for many months after getting Covid and is now restarting, albeit sporadically. Every time I am due on, my chest tightens and I find breathing difficult. My whole body then feels inflamed. This is surely not due to perimenopause , but feels like it is a resurgence of my Covid symptoms as it is all concentrated in my lungs and chest area.

severe anxiety, shaking, sore eyes, severe dizziness, chest pain, aching in my body, swelling, hair loss, pale lips, low oxygen, sleep apnea, distressing nightmares, diareah and a whole other list of symptoms

OP I had all of these,except sleep apnea..and it was all down to anxiety. I had a cancer scare. I had all but one of your symptoms.

Stress and anxiety can make all of those things happen. Its a possibility at least.

@MushMonster I really hope it doesn’t stay in the system forever..that’s really how it feels, a cycle of things getting a little better and then returning all over again. I just don’t understand it, and don’t understand how some people are stuck with this, but the majority fine. What is it about our bodies 🤷🏻‍♀️

@Noapplejustcrumble So sorry to hear it’s the same for you, it’s just never ending isn’t it.
I can get the very tight chest etc too, mainly on the day I come on, I’m convinced so much is due to hormones and menstrual cycle etc. Do you normally have any hormonal imbalances or endo, pcos etc? I’ve struggled all my life with my periods and fertility, it’s the only link I can find as to why my body reacts this way. I also notice at ovulation time, I have strong symptoms. Are you able to get by in life? Have you been to the doctors/had any treatments etc

@Notimeforaname Sorry about your scare.

It isn’t anxiety.