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

@Flowersinthefireplace But it hasn’t been thoroughly checked? I had an ecg and chest x ray back in summer 2020, I’m over a year on and still have pain there and an uncomfortable feeling, should I just leave that?

@SecretSpAD What are your thoughts about the origin of it and the unusual effects on the body?

@SunnyCoco That’s really kind, thank you 🙏 so sorry you’ve suffered so much, it’s really not fair at all, I hope you are able to have some help to live life with some ease xx

@Ranoutofnamesss Heart rate going over 100 when resting is not a big deal at all in itself - I know seeing an unexpected number is scary, but that is not actually high in medical terms (am not a doctor but have multiple issues affecting my heart, and see several cardiologists). It would be concerning if you'd just been injured, but just going over 100 by itself - this is very likely only a sign that you are deconditioned or have some kind of mild POTS-like condition.

I'm not saying you shouldn't complete this particular set of cardiac tests, since you're so concerned. But I'd definitely recommend you stop there for now - generally if the symptoms are staying similar then you don't need to get re-checked unless the doctor says so. Don't seek out further medical specialists beyond, perhaps, an MCAS doctor and/or a Long Covid clinic. I truly think that further investigations you are selecting for yourself will probably not be helpful - if something new arises, a big new symptom, then of course this might change.

There is honestly so much you can do to try and stabilise things. I can tell you're really struggling, but it can change, truly.

It's so interesting to see those who were able before being affected by long covid are being treated better than those of us who have been disabled and ill our whole lives. Not a dig to anyone, just interesting how society reacts to things like this. Will also be interesting to see if long covid is labeled a chronic illness and if treatment and research into it will be prioritised because of who it has affected.

Please don't be too quick to dismiss discussion around mental health. These symptoms from your opening post are all suggestive of a MH/stress/anxiety type response to something you were very afraid of.

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

I think you mentioned somewhere that you were ignoring all suggestions of a link to mental health, but why deliberately deny yourself access to treatment that may be the link to getting you better. People suggesting looking into this are trying to help you. Self diagnosis is not the way to go.

I hope you soon feel a lot better.

@Innocenta Yes after checking my heart I won’t test any further. If I could financially I would have the whole set of blood tests again, that I had at the start. It was a long time ago and obviously I still don’t feel well so something has to be amiss, but I can’t afford it, they cost into the hundreds

@Innocenta But what can I do? When not in relapses, I stay off the forums, try to push it to the back of my mind, try to stay positive, pace myself. I take supplements, dong drink, drink caffeine, eat healthily, low histamine, low sugar etc. I take walks, stay in nature, try to stay relaxed (with a crazy toddler it’s difficult)
What else can I actually do for myself that I’ve not tried

@Chaoplexatologist I’m honestly not denying links with mental health, the memories and feeling of fear have definitely had an effect on me, no doubt about it. It’s hard to explain what I’m trying to say, I realise anxiety has physical affects on the body etc, it’s hard to explain but I’m trying to say that from the start, the illness caused a physical reaction, adrenaline etc, something was very wrong inside, like my body was on high alert and needed calming

@Ranoutofnamesss I have to go to bed but I'll come back to the thread tomorrow and talk to you, I promise. Will try to figure out how we can talk via DM as I appreciate it's a bit public here - I'm sure this all feels very overwhelming as you've been through a lot in a short time.

Definitely will be back tomorrow to go into more depth

I would say it took three years to feel 80% there. At the one-year mark, I managed to go to college one short day a week ( our hours). The next year it was 2 and a half days and a part-time job at Christmas ( nearly broke me 😂). That third year I had sorted out my medication and treatment for the POTS and migraines. I was told my migraines were very 'interesting' and severe case in that pain was not the main symptom, fatigue was. I would guess I'm at 90% right now, I have the odd day where I just HAVE to rest. I've lost track of what normal is at this point though, I just know what I can deal with and what I can't. The good news is that does include a night out every month or so, a part-time job, a puppy. I actually ended up starting my own business as I knew I could control the hours, and if I was relapsing I would take less work.

In the world of M.E (which I do think are very much related, but not identical) It is normally very promising to be improving, even if it is slow. With M.E/ CFS the main thing is to not over-exert at any given point. One very big turning point was the neurologist giving me rules that I still stick to for the most part. It's worth trying even for three weeks and writing a diary of symptoms.

1. No alcohol
2. No caffiene, including chocolate ( the hardest one for me!)
3. 9 hours of sleep a night ( 8.5 as an adult)
4. I think he said 2.5 - 3 litres of water a day but I didn't follow that one religiously, I just drank a lot more.

When you quit caffeine you will find you feel like absolute shit for a couple of days, so do it when you have a few days you can rest more. I felt so so much better after three weeks of this. They're small but significant changes. I have no guarantee they will work for you, unfortunately, but they're good life rules for anyone to live by if they do!

I’m trying to say that from the start, the illness caused a physical reaction, adrenaline etc, something was very wrong inside, like my body was on high alert and needed calming

@Ranoutofnamesss I don’t mean to sound rude or dismissing but these are the very symptoms of a psychological based illness. When i suffered from extreme anxiety I could literally feel the adrenaline surge around my body. Have you tried SSRI’s?

MCAS is really shit from what I have read. (and measurable physical. there is a whole load tests that can detect it)

[quote Ranoutofnamesss]@Chaoplexatologist I’m honestly not denying links with mental health, the memories and feeling of fear have definitely had an effect on me, no doubt about it. It’s hard to explain what I’m trying to say, I realise anxiety has physical affects on the body etc, it’s hard to explain but I’m trying to say that from the start, the illness caused a physical reaction, adrenaline etc, something was very wrong inside, like my body was on high alert and needed calming[/quote]
I get exactly what you're saying. I didn't want you to dismiss it as 'all in my head' stuff. I have a progressive neuro condition and registered blind so all too aware with the feelings we get when someone suggests mental health and stress.

I have found focusing on a hobby or sticking the earphones in and listening to audio books good ways to forget about the inevitable down mkkds illness can give us.

Hope you're soon a lot better.

Hi OP I have had many of the symptoms you describe related to covid, (have had MS etc ruled out.) Have now been diagnosed with FND (functional neurological disorder) which causes a lot of those issues (although not the swelling etc). Until recently FND symptoms were thought by neurologists to be purely psychological but its now known that they are not - but they dont show up on scans/MRIs. They are however related to conditions like PTSD in that they are related to how your brain/nervous system is wired up and what are essentially "software" issues according to my neurologist. It's a new area of neurology and not much is known as to what the exact physical cause is. Don't know if its relevant to you but here's a link to a good website he recommended to me, just in case you think any of it might apply to you:
www.neurosymptoms.org/en_US/
My symptoms have been completely debilitating too - I'm nothing like my former self. Brain fog, dizziness/memory problems/vision disturbances/balance problems/exhaustion/racing heart/prominent veins etc etc. For what it's worth I have been told that I'm expected to make good recovery, they just don't know how long it will take (8 months so far). I hope you feel better soon

I’m sorry it’s so tough for you.

My DH has long COVID and it’s been a struggle for 9 months.

In the last month he has been (privately) having hyperbaric oxygen therapy and it’s helped massively. Not totally cured but he is able to do more and exercise gently and has more energy. He can tell in his chest and breathing if he misses a session. He started to feel the benefit after about 2 weeks so it’s certainly worth investigating.

I had COVID in March 2020 and was in a terrible way. I have improved over time. Things that I feel have helped me were taking a multivitamin with omega 3, eating an apple a day (apples are supposed to be good for lung health), I took fexofenadine for a year, it helped calm down the weird inflammation issues. I took occasional low doses of flush niacin last winter which helped my circulation issues (there's some info out there on flush niacin and long COVID but best to be cautious and check with a doctor). When I had my first vaccine a lot of my symptoms improved suddenly and I was able to stop the fexofenadine. I still get some symptoms, burning windpipe, chest tightness, twitching muscles particularly round my chest and my circulation is very poor in the cold weather but the fatigue has gone, I'm able to function almost normally and I am so grateful. It's heartbreaking that people write this off and it took me a while to even be able to open this thread knowing that I'd read the same crappy comments over again. to you OP and all others affected, I hope you can see some improvement.

Sounds like postviral syndrome/ME which I was diagnosed with at 23

Hopefully with long covid people are taking it more seriously. When I was diagnosed my family said it was a 'nervous breakdown' and to stop being lazy, and doctors said I would have to sign onto benefits and 'lead a very limited life' (seriously).

With luck it will improve - I would do research into things that help people with ME (reducing inflammation etc)

I've sent you a PM, @Ranoutofnamesss

@Vispa So sorry you’ve been the same. Yes, at the height of it all, the doctor wanted to rule out Ms or brain tumour, the symptoms were so similar, it was terrifying. I also thought I was having a stroke at one point. I remember the visible veins too, I’m someone that the nurses always struggle to find a vein for vaccinations etc and suddenly they were so prominent. I remember going for a dog walk with Dp and just standing in the road in a cry and panic, showing him my veins, and him trying to reassure me they were normal, they weren’t, not normal for me, that was the difference. They eventually calmed over time. Have you found your symptoms easing? Are you getting any better?

@Runningshorts Hi, yeah I’m on Fexofenadine too. I tried the flush niacin after reading so much about it, but suffered a bad reaction, almost a high histamine reaction, which was strange and v scary, so I’ve not taken it since
So sorry to hear you went through similar and hope you’re feeling a lot better than you were

@EvonneGoolagong Thank you 🙏

@georgarina So sorry you went through that, are you better now?

@BlackeyedSusan Yes I think I definitely need to find out the tests needed for mcas for sure and take it from there. I just keep hoping I’ll get better on my own, but maybe I won’t

@Ranoutofnamesss I honestly don't know at this moment in time. Some people think that Covid is causing a dysfunctional inflammation reaction and some symptoms that I've seen do seem to suggest that. There's also a theory that the symptomology is different depending on mode of transmission so with upper respiratory transmission it's more neurological and lower respiratory more problems with other organs in the body. Truth is it could be that, or could be other mechanisms. We just don't know. Sorry.