Long covid? Not feeling well since covid a year ago.

[CornishPasty101]

I've had covid twice - first time in October 2021 and then again in Feb 2022.

I haven't really felt "well" since then. It's not that I feel desperately ill; I don't. But I just don't feel well. I have loads of kind of non-specific symptoms like nausea (not ideal as I'm an emetophobe) and upper abdominal pain, occasional diarrhoea, some weight loss and lack of energy. So there's nothing really "wrong", but I just don't feel right.

Is this long covid? Is it just age?! (I'm 43). I really want to feel well again but early nights, gentle exercise and vitamins aren't making any difference. What can I do?

I went to the GP and they did a FIT test which was fine.

These are just my thoughts on what you've described, OP. I think it possibly is long Covid, partly because you say these symptoms began after having Covid. Also because the digestion appears to be affected in many folk. I had Covid recently and it took quite a few weeks for my digestion to normalise again.

If you don't feel right, then there is something amiss, I doubt it's your age (you are still young!). The digestive symptoms seem post-Covid related, so something is out of kilter there. Since you have tried vitamins, exercise and generally looking after yourself, maybe you need to think about whether you may have become intolerant to some foods? Maybe try eliminating wheat or even gluten generally for a few weeks just to see if it makes any difference. Or perhaps dairy. Don't try to do both at once though.

I do sympathise. Although I cleared Covid pretty quickly, I do have autoimmune thyroiditis and there always seems to be some annoying symptom connected to that that makes me feel sub par most days. If doctors can't help, then you learn to start being your own walking experiment! Perhaps seek out forums where there are other people with long Covid who may be able to provide their own experiences and what has or hasn't helped them. I hope you can feel better soon.

What is a FIT test? It sounds possible OP, but there may also be something else wrong. See your GP again and say you're not improving. There may be other tests they can do or at least get you into the referral process to a LC clinic. My appointment was four months from referral, but don't know how long it is now.

A FIT test is a test for bowel cancer. Yes I will try and get back to the GP but the appointments are pretty difficult to access at the moment.

What symptoms do you have @TurquoiseBeach

I'm guessing LC might be a diagnosis that gets made once other things are ruled out?

Thanks @CrunchyCarrot I'll have a look at diet and see if there seem to be any patterns and maybe start eliminating foods to see if that makes a difference.

Yep took me about two years to feel ‘well’ (was 29 when I caught covid in March 2020). Just took time, some respiratory physio and pushing myself a bit exercise wise.

Hey OP, I can sympathise as since I had covid I’ve had a real flare up of IBS and generally not feeling well, tired and fatigued, and my CFS symptoms have started to reappear. I’m suspecting long covid now as well, though it isn’t disabling me currently. It sucks, doesn’t it?

I had similar symptoms for a while after Covid last Christmas.
In July, after no improvement, I suggested ovarian cancer to my GP, and he arranged an ultrasound which identified a cyst. Things moved fast, and I am now recovering from a hysterectomy! It looks like the cyst is benign but it might have been cancerous, in which case early diagnosis would make all the difference.
Ask for an ultrasound is my advice.

Some days I feel 60-70% like my normal self for several hours. Some days I feel like 20% of my normal self all day. I often feel like I am coming down with something, but covid screws with your immune system. Occasionally, I have weird symptoms I sporadically had during covid e.g. toothache on one side of my mouth that suddenly appears for a while and then disappears, hearing loss in one ear which then partially reappears, nasal pain etc. It's not linear. Exercise is a trigger, so I've stopped that - I can walk at a v moderate pace, but some days I can't walk a (previous) 10 minute walk without stopping several times to catch my breath.

Worst (and constant) symptoms are excessive fatigue and lack of energy which I cannot push through, brain fog (varies from really bad to mild/moderate), memory loss - find it hard to recall some things, nausea (mostly mild, nagging but sometimes more). I seemed to get better for a while over the summer, but not sure if that's because partner took some time off, so I could rest when needed.

FWIW, I felt more or less back to normal a couple of weeks after covid, then did some moderate exercise and bang. My initial diagnosis was panic attacks, which was clearly wrong. Exercise caused collapse. Keep persevering with the GP and good luck.

Watching with interest but feeling too grotty today to contribute anything.

It's incredibly difficult to know if someone thing is long Covid because the symptoms are non-specific. Plus even if you do have long Covid, you could have something else which is causing the symptoms. It seems to be increasingly accepted that if you have some underlying 'weakness', Covid will trigger it.

I've had long Covid for 14 months. I was referred privately to a long Covid specialist (a cardiologist) as my brain fog and fatigue were so bad that I couldn't work. He did a barrage of tests (cost me a fortune!), including referring me to Harley St for autonomic function tests (£3.5k!!!) which confirmed that Covid has definitely affected my autonomic nervous system.

However, as part of the (bloody expensive) testing, it was also discovered that I had a tumour in my neck - which can also cause brain fog, cognitive issues, fatigue etc. I had surgery for the tumour and immediately afterwards, I no longer had heart palpitations, headaches or itchy skin. I'd thought the first two were long Covid and the last one was peri-menopause but seems not! This is a very simplified version but the morale of the story is that until you rule out almost everything else, unless you want to spend £3.5k, it's almost impossible to say that it's long Covid. It's important to get fully checked out. My tumour could have gone undiscovered for years.

@HundredMilesAnHour Do you mind me asking where in your neck you had the tumor? I'm being medicated for neck pain with post covid symptoms.

It was one of my parathyroid glands. So no pain at all but instead it causes hormonal/mineral issues. The giveaway is high levels of calcium in your blood/urine and/or high level of PTH hormone (obviously more complex than that but that's the simple version). If you have pain, it's not parathyroidism.

Thank you very much. I have been diagnosed with occipital neuralgia but its not consistently sore and I thought it was. I think I have a good bit of covid after effects tho. That was lucky you got the tumor spotted early.

@Onceuponawhileago I hope you can find a doctor who can help you too. Hopefully as they learn more about Covid, they will find ways to relieve all these awful problems that Covid causes or makes worse. It's cold comfort though when you have to live with it. I desperately want my pre-Covid self back but have to accept that it will probably never happen and I have to learn to live with this new sickly version of myself.

Thank you. I have struggled with fatigue, breathlessness, thought it was autoimmune, thyroid etc but seems to be covid. Palpitations nearly daily even though cardiologist has given all clear.
I hope you get well too.

@Onceuponawhileago
Palpitations nearly daily even though cardiologist has given all clear.

Out of interest have you considered you may have histamine intolerance? Having Covid seems to lead down that route for some folk. I have it (not due to Covid) and I do get regular palps from food, but if I didn't know it was from food then I'd think it was random. To prove it is, when I had Covid a couple of months ago, I completely lost my appetite and didn't eat for a week. All the palpitations stopped. They only resumed when I started eating again.

The best thing I can suggest is to optimise your diet, B vitamins are incredibly important, especially B2 (riboflavin) as it's part of a coenzyme for many reactions in the body (including those involving histamine) and you can't store it so need a good source daily.

Anyone who has gastric symptoms, may I recommend trying a combined probiotic/prebiotic/vit B12 supplement? They’re pricey but I’ve been on one for about 2 weeks now and my IBS is so much better already. They’re also v good for the immune system generally, of course.

Disclaimer: not a medical expert, just suggesting sth I’ve found helpful.

Have you had bloods as well as the Fit test? My digestion has been up the spout since covid - have had a barrage of tests and got an endoscopy next week.
I found a probiotic has helped (recommended by the gastroenterologist) and also being on a specific diet. Most of my symptoms have gone apart from reflux, hence the test.
All along the medical professionals have said it’s covid related but until you have tests to rule out other things you don’t really know.

@TurquoiseBeach the toothache! that totally puzzles me. I have this also (as well as tinnitus, up and down for 2 years)

No, haven't had any bloods done (other than my thyroid ones). I'll go back in the New Year I think. Started taking a multivitamin to see if that helps at all but it's only been a week so not much to report yet!