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

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'm sorry you're still so poorly. We have just started long Covid multidisciplinary assessment clinics here and as there is a huge spectrum of responses to the virus and therefore we have physio, chronic fatigue, chronic pain, psychology and rheumatology input. The psychology input is because of how living with such debilitating symptoms impacts your life so badly and therefore your mental wellbeing takes a hit, not because it's all in the mind. So far treatment tends to focus on symptom management rather than actually being able to stop long Covid at this point if that makes sense.

@Bluntness100

Nope not getting it at all

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

Why do people act like mental illness is something to be ashamed of

It’s not.

Mental illness is nothing to be ashamed of at all.

But we also shouldn't jump to the conclusion that someone listing symptoms has a mental illness just because doctors can't figure it out.

There is so much that we still do not know, and doctors are human, they don't know everything. Particularly when it comes to Covid - there is still so much we do not understand about this virus.

OP, I hope that you find some answers soon.

I totally get it OP as I'm in exactly the same position. It was a scary time as we were so ill but GP's etc literally closed their doors and for the most part we've been left to look for answers ourselves. My life literally changed overnight. I can't do a lot of the physical things I used to be able to do. I too have a lot of symptoms but scans etc reveal healing. I think mast cell activation is little understood and our bodies are still experiencing inflammatory responses.

Research is ongoing and I hope that eventually they'll find out what happened to our bodies and ways to prevent it in those who get Covid.

Have you had your thyroid looked at? Some of your symptoms are classic and it can be triggered by other conditions.

I hope you feel better soon op

It sounds like C19 my have made tour immune system dysregulated. Take a look at low dose naltrexone it's been a lifesaver for many with autoimmune conditions. You can get it on private prescription. It modulated immune system reactions. Good luck. Xx

I had an illness a few years back (obviously not COVID) & everyone said I’d be back to normal in around 6 weeks.

It took me 2 years to feel normal again. I also had small children. I know it’s bloody hard.

Doctor’s passed it off as mental health issues -it wasn’t. Not by a long shot.

I found a charity specialising in my illness and it helped to chat to others that had suffered through what I had & come out the other side. Just knowing I wasn’t alone & that the conversations I’d had with doctors where they passed it off as anxiety were the same ones they’d had.

I think (some) people are giving more attention to post viral after effects now. There are some things you can’t just get over in a few weeks.

I'm sorry to hear what you're suffering. I have MCAS too (not related to covid). It is possible to get it in remission but as a poster above said, you need a cocktail of anti histamines, mast cell stabilisers, and supplements as well as a low histamine diet. If you look at the facebook groups for mcas there are files if useful information you can download including details of doctors who know what they're doing. Also look at Dr Bethan Myers' videos on YouTube - she talks about long covid and mcas.

Before I got my diagnosis and treatment programme I ended up in a stroke clinic because they thought that must be the cause of my symptoms! A couple of years later and I can work full time. So don't give up hope.

I wonder if there’s any research into the crossover/ impact of long Covid symptoms and the peri menopause.
Many of the symptoms are similar.
If it’s possible to detect ‘normal’ menopause symptoms and at least treat them accordingly that might help.
I hope you find something to improve life soon.

As soon as I read your post, I got transported to when I was 43. Exact same symptoms. It was the feet start of the perimenopause.

Then I read that you had a toddler, so thought unlikely. Then I read you were the exact sane age I was when it all started.

Just seen @UmpteenthTime mentioned it too!

The PTSD is not insignificant here. There’s a lot of research going on in the mental health field right now about the physical effects of trauma and how they manifest. Bluntness isn’t so far off the mark.

OP if you want a new avenue to try then I suggest you have a read around the subject of somatic experiencing and EMDR. Look at the work of Bessel van de Kalk, Gabor Maté and Peter Levine.

Don’t dismiss peri menopause either. A lot of the symptoms you describe sound similar. There seems to be a weird link between the virus/vaccine and menstrual cycles. I wonder whether it’s kick-started peri menopause in some women.

Hi all,

Thanks so much for all the feedback. All the things mentioned I’ve considered myself and have investigated.
I wondered about peri menopause all of a sudden, I had zero problems before covid, I’ve had all the hormone related blood tests at the start and all fine, covid has messed with many women’s periods and hormones, I wondered if it had thrown me into menopause but all tests ok. Had my thyroid checked back when at my worst, all ok.
I had blood tests that showed slight infection and inflammation but apparently wasn’t high enough to be an issue.
There is literally nothing they’re able to provide, so I’m doing it all myself, but it gets exhausting, I just want to live my life, so I’m generally in denial somewhat. I get on with things until relapses, I’m in a long one at the moment and that’s when the frustration comes back
Without strong anti histamines twice a day and all the supplements, I don’t know how I’d be.
The Merry go round of symptoms just simply returns again and again, it’s almost as if each part of the body it affected in turn or each system.
I don’t have anxiety because I’m worried about being ill. The illness causes a physical, anxious reaction. I clearly know the difference between the two. At the start it was like adrenaline running through my body all day, but coupled with exhaustion. It clearly impacted the nervous system somehow.
It’s the oddest thing I’ve ever experienced and didn’t feel like a normal illness in any respect. I could cry for life before March 2020

@TackyJewellery Please read all my posts, she is far off the mark in this case. Please try to listen when I and others experiencing the same know exactly how we feel and don’t need to be patronised. I’m very clear in knowing exactly how I feel. It really isn’t helpful, it’s just a wasteful point of view and doesn’t help at all, it’s very frustrating.
I’m really not interested in what Bluntness said, I’m not interested in if she’s nasty or normally a nasty poster, I have no idea. I’m here to see if anyone has experienced similar and/or has any insight or help to offer

@vivainsomnia I was pregnant at 39, had Dd at 40

Sorry you feel so awful. To me two things jump out ( I am not a dr). Long covid which has a variety of symptoms and drains the life out of you and early menopause. It can go on for years. The chest pains and weird feeling are like long covid..
Hoping you get help soon.

I have experienced similar and I’m offering my insight.

I work with patients who have PTSD and C-PTSD with acute physical symptoms and no medical reason for them. I’ve seen these symptoms improve when patients are treated using a trauma-informed approach. I didn’t see Bluntness’s original post to you. But I just wanted to suggest that you don’t discount the psychosomatic effects of the trauma aspect.

The mind and the body aren’t separate and distinct. They’re part of the same organism, of course they affect one another.

@TackyJewellery Yes, of course, but this in itself is different. Thank you.

@TackyJewellery I don’t understand why people can’t understand what’s being said, I went through a similar thing after covid, thankfully only for 6/7 months, I get where op is coming from, but can see what you’re saying, I still struggle a little to this day

Will probably be flamed for this but I think that the positive of long COVID is that it will mean that finally after affects for illness like COVID and meningitis and issues like ME/CFS might get more attention and more research.

I’ve been lucky in that I haven’t had COVID but I have had bacterial meningitis twice and 2 years on I’m still not myself. Long covid now may mean that people and bosses are more sympathetic and understanding about the long lasting affects of other illnesses

I am more cynical. I doubt anything will change.
People with chronic illnesses are just left to go on with it. Sadly pretty standard.

[quote Ranoutofnamesss]@Sunshinealligator No, it’s all physical, if that makes sense.
This is the frustrating thing for myself and many like me, trying to explain this.[/quote]

But it's not all physical as you state you have been diagnosed with PTSD which is a mental illness.

Do not underestimate the physical manifestations of something like PTSD. The mind and body and not entirely separate from each other - one is entirely capable of affecting the other in a myriad of ways.

If tests and diagnosis have been exhausted then I would advocate focussing on treating the PTSD and then assessing the impact of that on the physical symptoms in a few months time.

@Ranoutofnamesss

Hi all,

Thanks so much for all the feedback. All the things mentioned I’ve considered myself and have investigated.
I wondered about peri menopause all of a sudden, I had zero problems before covid, I’ve had all the hormone related blood tests at the start and all fine, covid has messed with many women’s periods and hormones, I wondered if it had thrown me into menopause but all tests ok. Had my thyroid checked back when at my worst, all ok.
I had blood tests that showed slight infection and inflammation but apparently wasn’t high enough to be an issue.
There is literally nothing they’re able to provide, so I’m doing it all myself, but it gets exhausting, I just want to live my life, so I’m generally in denial somewhat. I get on with things until relapses, I’m in a long one at the moment and that’s when the frustration comes back
Without strong anti histamines twice a day and all the supplements, I don’t know how I’d be.
The Merry go round of symptoms just simply returns again and again, it’s almost as if each part of the body it affected in turn or each system.
I don’t have anxiety because I’m worried about being ill. The illness causes a physical, anxious reaction. I clearly know the difference between the two. At the start it was like adrenaline running through my body all day, but coupled with exhaustion. It clearly impacted the nervous system somehow.
It’s the oddest thing I’ve ever experienced and didn’t feel like a normal illness in any respect. I could cry for life before March 2020

Can you get another blood test re the infection and inflammation?

I have found some doctors very much stick to the normal range of these things without considering the individual they are seeing as well as their symptoms. When I was having my thyroid investigated the first Dr I saw said it was normal, but I saw a different one for a review and they looked at th same results and said it right on the edge of normal. They gave me a low dose of medication and I felt so much better really quickly. If I hadn't seen the second doctor I'd probably still be feeling ill now.

I also had people saying it was in my head and I'm glad I didn't listen to them.

I definitely think it's worth revisiting that given what others have said about inflammation.

It's only hurting you to keep denying that your - yes, genuinely physical - symptoms are also linked to anxiety. It's not an attack when people say that! I'm speaking as a lifelong MCAS patient with an absolutely established diagnosis, multiple anaphylactic allergies also, and a host of other stuff going on. I also have MH problems and it has only helped me to recognise that it's all going on in the same mind and the same body. The mind = the brain. The brain is an organ in the body.

No mental illness is not also in part physical. Myriad physical symptoms can also be entwined with your MH. None of this means you are faking or it isn't 'real' or you don't deserve help, but you must try to get past seeing it in this narrow way, it will only limit you in participating effectively in your own treatment.