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

Look up the online Long Covid groups. It might be worth checking them out - particularly international ones, where knowledge from all over is shared.

Rheumatology good idea if possible inflammatory issues - inflammatory arthritis, other autoimmune.

@Lullaby88 I got it in March 2020, before vaccines

Also might be worth finding yourself a consultant in your main symptoms… hormones? Gynecology?

Also, I’m experiencing similar weird symptoms which keep ‘cycling’ that might be peri or menopause. I don’t think Covid. I am also finding it hard to know which tests / scans to ask for, I was initially reluctant to have anything. But my GP referred me as my symptoms were ‘worrying’ and I had a consultant. Like you, they couldn’t find an obvious reason so I’ve basically been left.

But they keep recurring! So I’m left wondering what the hell to do now.

I think one positive for you, is that they are linked to Covid. So an ongoing response. So hopefully, unlikely to be another serious condition. Maybe looking for ‘a condition’ is not the right way?

Just give in to your body for a while, and give it what it wants. Don’t be alarmed when the symptoms repeat. But take some hope that they do go away, and on the whole, post viral conditions do get better over time.

So in that way, you can feel some hope. I also find, even now with myself, we have to find a way of living with these weird symptoms, with uncertainty, and a lack of clarity. That’s just how it is. I find that I am massively better when I am ‘super healthy’ but also distracted a lot from myself - so friends, enjoyment, getting lost in being a mum or our work. That seems to really help the body.

@Tealightsandd Thank you I’m in all the groups on Fb etc, many in a similar situation
I’m not sure what to say to a rheumatologist or what they could do? I just have the arthritis in my neck

@Ranoutofnamesss Debilitating exhaustion after any exercise, physical or mental; breathlessness at the slightest exertion (think tying shoelace); painful joints; sore burning patches of skin that won't go away; atrial fibrillation, permanent pins and needles in arms and hands; insomnia (despite the exhaustion -infuriating); bad headaches; dizzy spells; diarrhoea. A right little bundle of joy I am.
I did have brain fog but that seems to be lifting.
The big issue for me is that nobody seems to want to address this as a holistic problem. They keep trying to tackle individual bits (fruitlessly so far). But as it all turned up in a lump post-COVID - without a word of warning - I think, probably like you and many others, I am hoping in vain for a holistic solution.

So sorry to hear about this, Op. I had ME/CFS with a significant chronic pain element and POTs and quite a few sensitivities and was really ill for about 8 years. Had to stop working and stop doing pretty much anything that resembled a life. It was a nightmare.

Doctors were clueless or actively unhelpful. Things like supplements, osteopathy etc helped a bit with symptoms but nothing really moved the needle. Luckily, I finally managed to get myself better reasonably quickly once I realised what was driving it all - after much internet research and piecing together various research studies. I’ve been recovered for 6 years now and live a normal life without any of my old symptoms. You may well have a great chance at retraining your mind and body back to health like I did . Look up ‘central sensitisation syndromes’.

Hope you find good support with the groups.

The arthritis could be inflammatory related. Have you had inflammatory marker blood tests?

If you see a rheumatologist, explain your symptoms (maybe write a bullet point list) including the arthritis, and ask to be checked out for possible inflammatory or autoimmune issues.

Endocrinologist could be useful too, for example if you think it might be thyroid related.

Have you had your hormone levels checked recently?

Is it possible you could be peri menopausal?

Not making light of long covid symptoms but perhaps it's overlapped or Covid triggered something as a lot of the symptoms are similar.

Lack of follow up on long covid makes me doubt the validity of any research on the issue.

My GP reception called to offer me vaccination a few days after I tested positive - I'd emailed to let them know. "would you like to book a covid vaccination, oh no you can't, you're positive" - they'd have rung off at that point if I'd not started interrogating them as to when I could have it - but I was stunned that they didn't attempt a cursory "how are you feeling?" - even if they really didn't give a flying fuck.

I think I had long covid symptoms for about six months, and still not really 100% nine months on. Seeing the GP for some stuff, bit it's not really being looked at holistically.

@ThinWomansBrain the receptionist doesn't ask people with any serious ongoing illness how they are feeling. This is standard for anything.

I'm really sorry you're going through this. COVID is horrible, and its long-term effects are very real and still not well understood.

MCAS is also not widely understood, so I'd definitely recommend seeing a specialist. There are medication options which could help manage your symptoms and give you back some quality of life. A rheumatologist may well be the best specialist to start with, as MCAS would fall within their field of practice. They could do some specialist assessments and discuss management options with you.

There are long COVID clinics being set up, so you could also ask to be referred to one of those if one's available in your area. It's worth bearing in mind, though, that because this is such a new virus the evidence base for treatments can be limited, so it may be a case of trying things to see if they help.

There's a strong interplay between physical and mental health, and you've been through a lot in a short time. I wonder if it might also be worth speaking with a psychologist or counsellor about what you're going through and how it's making you feel. They may be able to help you develop your psychological coping mechanisms and to process some of the trauma you've been through. Even if that doesn't help alleviate your physical symptoms, it might help you feel better in yourself, which may in turn help boost your capacity to cope with your physical symptoms. Quite a lot of rheumatology services have specialist psychologists who work with patients with rheumatological conditions, because of how distressing and complex these conditions can be.

I hope you're finding the groups helpful.

The arthritis could be inflammatory related. Have you had inflammatory marker blood tests?

If you see a rheumatologist, explain your symptoms (maybe write a bullet point list) including the arthritis, and ask to be checked out for possible inflammatory or autoimmune issues.

Endocrinologist could be useful too, for example if you think it might be thyroid or type 1 Diabetes related.

You've been through a really stressful time - and stress is linked to inflammation. As well as conventional medicine (not instead) you could look at various diet changes and also relaxation techniques. I like massage, but everyone is different. Whatever helps you.

I have MCAS, not covid related, just genetically unlucky, so I understand how exhausting it is, everyday starts with a cocktail of medications to control symptoms and reduce the risk of reactions. Only advice I can really offer is ensure you're on a strict medication plan, definitely get your iron levels checked as MCAS can cause issues with vitamin/mineral absorption, especially iron. There's no cure and you have to rely on those medications to enable you to live a somewhat normal life. Secondly, try a low histamine diet, personally it didn't help me but I know a few who've benefitted greatly so always worth a go. MCAS symptoms vary so dramatically between people so I'd recommend controlling your worst symptom first, for example if it's pain, get a pain management plan, if it's gastrointestinal issues, ask for a referral to a specialist, if you've developed POTS in addition to MCAS, see cardiology and try beta-blockers. It's a horrible condition unfortunately, I have a 3 year old and a newborn so mine has to be as managed as possible so I can be a parent, it can be managed and allow you to have mostly good days, it just takes some work. Always happy to answer any questions or help in any way I can, if you want to message me privately that's okay.

@Ranoutofnamesss I am truly sorry you are continuing to suffer,

The medical profession can’t really help if unable to identify anything specific that can be treated with medication or other treatment.

It is highly possible that the infection you experienced has wrought some damage, however, and all I can say is to take the very best care of your health and nutrition, rest and mental health. Cut out alcohol.

I can’t imagine that your health won’t improve with time, but I’m afraid it is a bit of an unknown quantity. I’m sure greater understanding and methods to treat will emerge.

Sounds like long covid

Mine was after covid, a blood test would show inflammation- you need crp measured. A scan would only show it if that prt of your body is effected by it, you need to see rheumatology for them to run specific blood tests.

I didn't see @Bluntness100 original comment on this post but I see her comment regularly on MN and I can't say she's ever nasty or vindictive. She's honest, which is uncomfortable for some posters but it doesn't make the things she says untrue. I've never seen her being deliberately spiteful or malicious in any way so maybe it's time to move on from all the attacks on her personally? She's explained her thinking and it doesn't sound unreasonable to me.

OP, I used to assess medical claims. What we found was that people with a physical condition, especially if it was undiagnosed, were massively resistant to the idea there could be a psychological component - but there inevitably was. That doesn't mean there isn't a physical cause too, but it's worth exploring whether the distress is exacerbating your physical pain.

It sounds logical if you think about it. We don't know much about Long Covid yet, or how it differs from normal Post Viral Fatigue Syndrome. But feeling unwell constantly takes a psychological toll - and this coupled with the worry about what might be going on in your body physically is bound to effect most people.

So what I'm saying really is that while you're continuing to explore any identifiable physical causes, and waiting to find out more about Long COVID, it might also help to have some psychological support too. It doesn't mean that there isn't a physical reason, but it's well-known that psychological distress can make physical illnesses worse. From the way you're writing here, and your descriptions, it sounds like a two-pronged approach is what's needed.

I don’t know if you’ve tried it, but EMDR is apparently a good treatment for PTSD and trauma. It might be there’s not ‘one’ thing thats the answer to you feeling better physically and mentally, and it might be helpful to do various things in combination, (like with M.E.). Hope you feel better soon. x

@Redredwiney

Not seen what Bluntness wrote as it’s been deleted, but she’s one of the few posters on here who doesn’t live in dreamland and provides a more logical point of view. Ironic that others are complaining about her when there is a mob mentality against her on here, verging on bullying… Pot, kettle, anyone?

OP - sounds like long covid. It is a thing that genuinely exists that doctors know very little about, which is probably why you’re getting no answers. I know that doesn’t help you, but there are others like you.

Bluntness would not be deleted if their posts were OK with MNHQ. So not about the mob mentality.

I think the issue with long Covid is the doctors simply don't know what to do. They will be wary of throwing treatments at you unless you are critically unwell, because they simply don't know how your body will react, they don't want to risk making anything worse.

Unfortunately it will take years for clinical trials/research to safely identify effective treatments, especially because while the symptoms are unpleasant and are wearing you down, they aren't critical/landing you in hospital etc and there's little/no budget right now

Maybe a better model would be to look at medicine differently. Medicine is very limited in what it can explain - there’s a lot we don’t know. It is very useful - because nowadays we can do tests to pick up many serious, progressive conditions. But we are still a long way off being able to explain all the symptoms and signs people experience.

Sometimes it can be helpful accept that our bodies are not back to normal. We have a new normal - and have to try different things to make the symptoms better. That’s NOT a call to internet search, try random supplements or quack treatments in a hope of a miracle ‘cure’ that will bring us back to our old selves (some of these things can actually do harm). It’s trying to see how we can alter our lifestyles to get the best quality of life we can. That could be- more sleep, healthy eating, exercise (as appropriate). I think PP and julieca had some good advice.

Of course if you get new symptoms or notice worsening, see a doctor. But mainly for the purposes of ruling OUT conditions (that modern medicine has knowledge and treatment for). The negative tests should give you more confidence that it is not a whole range of conditions that the docs have ruled out. Other than that, it’s a question of adapting life to make it more manageable - working with your body to understand its limitations.

I have stopped running and high impact sports to preserve my joints (even though I’m young), because I can feel the pain with certain actions. I am still active - I just need to do different activities.

I hope - as some others on this thread have experienced - that with time some of these symptoms may improve. But if they don’t, hopefully you can adapt your life so that you can get the best out of it.

There are different health systems in different countries. But in uk (as prev posters have mentioned), a rheumatologist or immunologist may be able to think about and do tests for problems that affect multiple systems. That’s not to say they will find what is causing it - just that they can rule out the known multi-system disorders that we know about.