Any doctors on here? Can’t do this anymore

[Cantdothis78]

I’m on month 8 of long covid and I can’t see an end to this or any hope. I’m on the boards here but it’s not a massive help, I’m not in the uk so no long covid centres. The doctors don’t understand and can’t provide much help. It’s never ending, constant...I don’t know how much longer I can live like this.

@Mummydoctor Manage the symptoms how though? I haven’t been helped with anything, just tested a few times and given that ‘Look’ as though ‘There’s nothing we can do’ I can feel something wrong inside my body that needs treating..somehow. I’m trying to research on the groups etc and many people are treating themselves and coming up with more info that the doctors it seems. It’s a scary situation to be in as you feel so vulnerable, it really does feel like we’ve been left to it.

So sorry you're having to deal with this.

Since you say the problem is related to your hormonal cycle, maybe it helps finding a smart gynecologist? One who is willing to think outside the box (which can be difficult of course)? They could try putting you on the pill if you're willing to do that, or just try whether methods used to mitigate PMS or similar help.

I have a friend with long covid who feels similarly abandoned by the medical profession. I think with so much acute illness going on, doctors lack the bandwidth to deal with fluctuating and recalcitrant symptoms like yours. And they just don't know a lot.

I'd say try and don't expect too much of yourself. Please don't despair, and focus on limiting the effects on your mental health. All the best.

[quote Cantdothis78]@RightYesButNo I don’t feel I can take much more, no. I can’t work and have had to stop. It’s too much with caring for my toddler too.
I do have chest pain, breathing difficulties, heart pain, aching all over, tingles in the body, diarrhoea, hot flushes, sore throat, grasping feeling around my throat, heartburn, headaches, stinging eyes, dizziness, tinnitus, numbness, nausea, fast heartbeat, tremors inside, high high anxiety, feeling, crying and for the last two weeks have barely slept with a very bizarre, feeling almost asleep but wide awake. These symptoms all do the rounds again and again..and again. ‘Better’ days are when I’m aching all over perhaps and a tight chest/sore throat. But it’s everyday and it never ends. I get through the day with my Dd, because I have no choice, but I’m in no way living my life right now.[/quote]
I apologize that I’ve misunderstood then as in your other comment you said, “I don’t generally have fatigue/tiredness, on ‘Good’ days, I’m a little achy with possibly a tight chest. On bad days or relapses, I have fast heartbeat, diarrhoea, internal shaking, headaches, sneezing, high anxiety, nausea.. then it goes, I feel much better ...and back it will come around again.” I think perhaps you downplayed your symptoms a bit (or maybe a lot) in your first comment, which is understandable as a lot of us are engrained not to “complain,” maybe don’t even realize we’re doing it, as we’re often trained not to as women and as mothers. So now it sounds like even your good days are bad (your aching is much more severe, you have twice as many symptoms, and it never stops) and you never feel much better. Yes, going 24/7 with no relief, then you’re pretty well a chronic pain patient. Sadly, that often comes with feelings of hopelessness and situational depression, and it’s not fair one has to deal with that on top of all your physical symptoms. In fact, it’s complete shite. I’m very sorry.

I still think a neurologist may be a good place to start since there are so many people experiencing neurological damage from COVID and so much of what happens neurologically doesn’t always show up on a CT unless it’s to the severity level of a tumor, especially now that you mention headaches, tinnitus, dizziness, and numbness - all can be nerve-related, and we know that viruses like COVID can attack the myelin sheathes around nerves or nerves themselves.

Have you had your thyroid levels checked? Some of those symptoms can be caused by an overactive thyroid - fast heartbeat, anxiety, diarrhea, insomnia, tremors

@RightYesButNo Yes, sorry I was trying to say that the aspect for me isn’t really the strange fatigue aspect that lots experience, more almost like an active infection which others have, I feel like I’m almost being reinfected again when a relapse happens.
The ‘Good’ days aren’t good, but in comparison to the very bad/relapse days they’re good, if that makes sense..but there’s basically never a day without something.
Lots of people have the same symptoms neurologically but don’t seem to have got that far, what could they give that could help?
Inflammation has been talked about a lot, I’m still taking anti histamines and following a low histamine diet. It’s hard to know what, if anything helps tbh.
I really felt strong progress was being made until around 4 weeks ago, I’ve no idea why symptoms would suddenly worsen 🤷🏻‍♀️
There’s most definitely a hormone element too, as most relapses happen around ovulation and the first few days of period (if my period arrives that is, they’ve been almost non existent aside from last month.
My hair seems to be coming out a little less now, strands would just come out in my hand when I ran my fingers through my hair. I recently starting taking iron, so hoping that is what may have helped.
My main worry is, will this actually stop? How?

@funkythighcollector hi, yeah, it was one of the first things the doctor tested for after checking for diabetes etc (One of my very first symptoms was burning/aching in the legs all night for weeks)

@Cantdothis78

Have you had your b12 checked?
Burning/pins and needles type sensations is often associated with low b12.
Since I've got both my b12 and vit d sorted I'm finding that many of my symptoms and mood is much better.
If you can join support groups they'll be able to help you the minefield of reading tests results and advising you on the best course of action as UK NHS levels are frequently set too low for many people

Have you had your thyroid checked? I was brushed off with anxiety attacks and it was actually an overactive thyroid with almost qll of the symptoms you describe. I went to A and E with a resting heart rate of 150 and was diagnosed there eventually. I really hope you find relief soon, I felt awful with those symptoms.

You need vitamin B12 to effectively absorb D3. There are more and more fatigue related services opening up now due to COVID now too but nag your GP.
I had PVF post viral fatigue for two years after a bad bout of flu and found he B12 D3 and Iron supplements helpful. The game changer was seeing a homeopath.

@Casschops I’m taking vitamin B complex, do I take vitamin B 12 separately also or does the complex cover it? Also on iron which seems to have helped with hair loss (I think!) going to get a higher D3 today.

@username1724 Yes, the doc checked that near the beginning and hormone tests etc, I was almost hoping for their to be a concrete answer as at least then I could take something and do something about it!

@MuthaFunka61 I’m on vitamin B complex, do I need a separate B12?

If you are low on b12 and many women are then injections are best (I self inject) as the b12 content in b complex tablets are pretty low. You can check this on the label on the back. Look for the RDA (recommended daily allowance) but keep on with the b complex tablets. B12 is water soluble so you can't take too much as you'll pee out any surplus.
A sublingual tablet or patch is best if self injecting isn't for you.

If you have good and bad days, it may simply be that you overdo it (unwittingly) on your good days and suffer 'payback' later. Pacing is a self-management strategy to avoid this and ensure you have energy left over which your body can put into healing. But it's incredibly difficult, because you may have to limit the amount you do on good days far more than you think.

For my own chronic illness I try to stick to a level of activity I can manage every day. I try to split up every hour into rest - physical activity - rest - mental activity. Someone might need 5 minutes rest each hour or 50. But the idea is that overall its possible to do the same (or even more) activity without provoking flare-ups. I had to learn what 'rest' works for me (think meditation or progressive muscle relaxation rather than TV). And how to make physical activity less 'physical'. (Like always sitting down to shower, even when I think I don't need to).

These books may help you learn how to do it:

Fighting Fatigue by Sue Pemberton and Catherine Berry

Classic Pacing for a Better Life with ME by Ingebjorg Midsem Dahl

(I'm not suggesting you have ME, just that pacing is actually very difficult and these are good guides. Eventually you will very likely head out of the woods and start to recover.)

Not read all the replies but a family member of mine had chronic fatigue, which appears to be the same as long covid. They did get rid of it and completely, it takes lots if rest, loads and loads of supplements especially methylated folate and vitamin d, salt baths, a focus on good diet and time. It will pass, they lead a normal life again now but for now rest and pacing yourself is very important. It will get better. Sorry you've been so poorly. Hang on in xx

(Methylated folate is an activated form of b vitamins which is much easier for the body to use; some people (quite a few) struggle to process b vitamins so taking methylated takes that step out and makes a huge difference, especially for fatigue).

There are some good pacing resources free online. (Science-based not alternative medicine , but much more than GPs will tell you) Just ask if you are interested, I can post links.

I was wondering if the autoimmune forum would be helpful OP. Long covid is much the same thing as what autoimmune sufferers get

[quote Cantdothis78]@Fouroclockonamarblemorning But riding it out for how long? This is approaching 9 months in December, do doctors really think that’s all we can do?[/quote]
I’m only at the two month mark, goodness knows how you’re managing. I think at the eight month mark I can totally understand why you’re tearing your hair out. I was told it can take months and months to recover.

It’s annoying when people dismiss It as being a bit of a flu and refusing to be careful or not distancing. I’ve certainly never experienced an illness so hard hitting.

@Junkmail I too have days where I feel reasonable then dip the next day, or I feel ok in the morning and deteriorate as the day goes on. Hope you and @Tootsey11 are soon feeling better 💐

Lots of people have the same symptoms neurologically but don’t seem to have got that far, what could they give that could help?

I might not have done a great job explaining this.

So here’s what happens. Let’s say you have COVID (but any virus can cause this, like a bad flu, meningitis, a tropical virus, etc). The point is just that you had a virus. Once you have the virus, your immune system rises up to attack it. But many times this doesn’t work like it should; your immune system attacks areas it shouldn’t, like your nerve fibers, or keeps going after it should, so you still have autoimmune symptoms.

A lot of autoimmune disorders are triggered by a virus. Now, in your case, it’s special because the virus was COVID and we just don’t know much about it yet, how it works, the after-effects, etc. But what you do have are very classic symptoms of an immune system that is still attacking you after it should have stopped. If you had back pain, toilet trouble, blood in your urine, etc., we might think that it was attacking your liver or kidneys. Just an example. But since you have the symptoms you do, it seems very likely to be attacking your nerves (numbness, tingling, aching, all signs of this). So a neurologist is the person who handles this. One of two things may be happening. Your immune system might still be attacking your nerves when it shouldn’t be, or the virus may have made it so that your nerves, after being attacked, are now sending the wrong signals (aches, pains, tingling). Neurologists can prescribe the drugs for that and we do have drugs for that. I mentioned gabapentin and duloxetine, both of which target nerve pain and nerve dysfunction. They may work to stop or at least lessen the symptoms while your nerves slowly get back to normal after the viral “attack.” A neurologist may also be able to say if you need further studies or if this is more likely to be a certain autoimmune disorder, besides just long COVID. If it is nerves, though, to give you some hope, I know it feels like such a long time right now, but nerves can take a very long time to heal completely, up to a year or two. So if it is this, then there is still definitely hope for improvement, and you may be improving slowly right now, but it’s just in such tiny increments that it’s impossible to see at the moment. I know that’s so hard to deal with, though.

My son contracted ME in his teens - this was around the period of swine flu. It still causes problems years later. Maybe long-covid is similar. ME wasn't dealt with; it was treated as psychosomatic. I'm not sure why one outcome of a virus should be treated as important, when a previous one wasn't. I hope that people suffering from long-covid get treatments that are available. The after effects of viruses can have a massive impact on a person's life.

OMG you have POTS!!! Postural orthostatic tachycardia syndrome. Look it up. Many long covid people are now getting it!!! My niece has these exact same symptoms and was diagnosed with POTS. 100 percent this is what you have!

[quote Cantdothis78]@RightYesButNo I don’t feel I can take much more, no. I can’t work and have had to stop. It’s too much with caring for my toddler too.
I do have chest pain, breathing difficulties, heart pain, aching all over, tingles in the body, diarrhoea, hot flushes, sore throat, grasping feeling around my throat, heartburn, headaches, stinging eyes, dizziness, tinnitus, numbness, nausea, fast heartbeat, tremors inside, high high anxiety, feeling, crying and for the last two weeks have barely slept with a very bizarre, feeling almost asleep but wide awake. These symptoms all do the rounds again and again..and again. ‘Better’ days are when I’m aching all over perhaps and a tight chest/sore throat. But it’s everyday and it never ends. I get through the day with my Dd, because I have no choice, but I’m in no way living my life right now.[/quote]
My niece has these exact same symptoms, she has POTS. Postural orthostatic tachycardia syndrome, look it up. I bet this is what you have. Many long covid people are now getting POTS!!!!!! And before/around period she feels worse too!!! Google it

@Cantdothis78 how are you now ? Xxx

I'm languishing on a decades-long diagnosis of ME. Anti-histamines have made a huge difference to me.

As PP have said, pacing is the way to go. If Long Covid is anything like what we know of ME (and they may be essentially the same thing, just we know the name of the virus with Long Covid), then it's really important to avoid pushing too hard and crashing. Crashes can do real damage that takes years to pull back from.

BTW, understanding of the interaction between the immune system and reproductive system is also increasing in recent years. I don't know details, but they do interact, so if Long Covid is (at least partly) a condition of the immune system, it would unsurprising to see changes over your cycle.

I was also going to say Postural orthostatic tachycardia syndrome (POTS) you have all the symptoms and my daughter has it so I know more than most. She has started beta blockers.
Do you know how anxiety keeps coming up - because if your heart is beating fast your body is tricked into thinking its in a stressful life or death situation so you feel panicked. So its a fast beating heart creating the anxiety rather than anxiety creating a fast beating heart if that makes sense.
Can I please really encourage you to see an acupuncturist. I think your immune system has gone into overdrive and an good acupuncturist should be able to help you reach a stage of balance again. I am sorry you have been suffering.