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.

I'm sorry to hear of your situation, I don't have much advise but wanted to offer a hand hold.
This is all new but so many doctors and scientists are researching it so hopefully there will be many appropriate medicines that come along to help
It's not on the news much but some people do stuffer long term after other viruses too. Also there are many other long term illnesses people suffer from.
Keep holding on, read as much as you can about treatments as news comes out and hopefully medicines will be recommended that can help you.

While it might be a bit radical, treating long Covid is being looked at by a number of complementary therapies including Chinese herbal medicine, homeopathy and acupuncture. While homeopathy is routinely ridiculed on these pages, the Indian homeopaths seem to be getting good results.

@Cuddling57 thank you 💐

It might be worth researching CFS (chrihuc fatigue syndrome) and pacing etc. Its a chronic condition often triggered by a 'mild' virus and main symptoms are fatigue, brain fog, and sometimes pain (I get migraines with it). I don't know if these are similar to your symptoms but it might help if they are. There is no treatment as such but CFS clinics etc focus on pacing treatment- it's all about recognising what depletes your energy and what you can manage, and pacing yourself to conserve your energy as much as possible before trying to build it back up. Sorry if I'm on the wrong track of how you're feeling.
Also might be worth trying acupuncture, mu acupuncturist mentioned she has treated a few people with long covid and it responds fairly well to treatment.

*chronic

What is your vitamin D level OP?

Yes vit d very important. Take a high dose - up to 4000iu.
I'll go get some articles.

www.healthline.com/health-news/what-to-know-about-vitamin-d-and-covid-19

www.healthline.com/health-news/what-to-know-about-vitamin-d-and-covid-19

It's not conclusive yet but you must consider it as a likely way forward to support your recovery if you haven't already. Good luck OP. It must be horrible to be trapped in long covid like that. I'm sorry you are feeling so low.

OP. Try Vit D, Magnesium, Iron and Zinc. Full RDA of Mag, Iron and Zinc and at least 4000iu of Vit D.

Then go tot he doctor for your other symptoms. Push them and nag them.

Someone I know has found huge relief from the pain in her lungs from long Covid by open water swimming, I appreciate that’s not very practical at the moment and I don’t know what she’s doing during lockdown but wonder if cold baths would have the same effect? The pain comes back after a few hours but it does give her a break for a while. She was on the BBC website talking about it a few weeks ago.

My mother had long term fatigue after a virus a few years ago. She says ginseng really helped.

I agree there's some interesting holistic medicine treatments being trialed.
If you're on fb join 'vit b12 wake up' and /or 'vit d & co factors UK'.

For anyone taking vit d,it's important that you also take k2 to direct the vit d towards teeth and bones and away from arteries and organs plus magnesium to fix it there.

Thank you everyone, I’m on a whole range of vitamins/supplements and have been the whole time-Vit D3, but C, zinc, magnesium, turmeric, iron, vit b3, anti histamines. I haven’t drank coffee or alcohol since April, I eat up to 10 fruit and vegetables per day, pace myself etc, it just won’t go. I feel okay for a short period (although not 100%) then all the symptoms come back around again to repeat themselves, like my body is stuck in some kind of cycle. I hadn’t even had a cold in 8 odd years, I’m rarely ill. I’m starting to think it’ll never go, I can’t see an end in sight.
They’ve done brilliantly working on the vaccine and hospital treatments, but I just feel totally abandoned by the doctors/system.
The last time I went was June, he mainly thought it was down to anxiety, so frustrating. More has been learnt now, but they still aren’t able to offer any help. I’ve had every blood test going, lung x ray, head ct scan, all ok, thank goodness, but still it remains.
My vitamin D3 and called high level and are 1000ui, is this still not enough?

@MuthaFunka61 I’m a little low in Magnesium so have supplemented for years (I get kidney stones if not) would I be safe taking a higher D3?

I’m sorry to hear that you are suffering from long Covid. The most constructive thing I can say to you is to learn to come to terms with chronic fatigue. That doesn’t mean it won’t ever go away, but for now work with it. Learn all you can about chronic fatigue, keep up your good diet and vitamins supplements, and be kind to yourself. If you feel that a course of anti depressants might help then try some. But be careful, some have long term side effects, so do your research carefully. Any doctor who dismisses your symptoms as anxiety in my books is not worth a second visit. You are your best chance of coming out of this well, so arm yourself with information! Best of luck and wishing you well on your journey . 💐

I had chronic fatigue for probably a decade post a nasty virus in my teens. What helped me eventually was cutting out sugar. Suddenly I went from needing to nap once or twice in the day to be able to work full time.

I am a low carb abs Keto zealot because of this. Everyone thinks fruit is wonderful, for me it’s terrible. Maybe try high fat, moderate protein, low carb in the form of leafy greens and occasional berries for a month and see if you feel like you have any more energy.

On your bloodwork, what was your vitamin D reading (number)? For an adult 3-4000iu is being talked about by researchers, but I think it's best to know your starting level.
Sorry, I don't know about the magnesium/kidney higher dose issue, but hopefully someone will.

Echoing what a pp said about sugar, on a FB group I'm in, many people with chronic autoimmune disorders have said that eliminating all sugar (including fruit) was the biggest breakthrough for energy for them.

What dose of vit d are you now taking @Cantdothis78?
It's the ratio of vit d to magnesium and k2 which're important

Apologies, I've read that you're on 1000iug per day.

Try doubling this to 2000iug of vit d which needs to be taken with around 18g of fat (it's a fat soluble vit)
K2, you'll need 500mcg and this is to be taken with the vit d.

Magnesium,you'll need 100mcg which is best taken in the evening as it has a propensity to induce sleepiness.

There's a growing school of thought about increasing b12 too so let me know via pm if you'd like info on this or you'd like links to recommended sources.

Take care 'n' g'luck

Sorry to hear your frustration. I am in a similar position - ill in mid March with likely covid, and I feel similarly fed up about my limited progress. I really need to make improvements to my diet but I find it hard because my weight is already low enough that I can't afford to lose any by cutting out sugar, and I can't eat high fat because of pre existing IBS. There is some helpful advice on here, so I am going to try to make some gradual changes and hope to see some improvement. Good luck with your recovery x

I'd recommend taking a complex with all of the B vits in it rather than just B3.

And if you can get this in your country, it's excellent for boosting energy and generally building you up. I prefer the liquid to the tablets, but it's not suitable for anyone who is coeliac/gluten intolerant. The tablets are.

Thank you so much everyone, 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..why?! 🤷🏻‍♀️
It’s definitely worse during ovulation and period/build up to period, so there’s a hormone element there, but I’m not a doctor, I can’t cure myself, I’m trying my damned hardest to research it all, but it’s really starting to bring me down now.
I’m so grateful it’s not like it was at it’s peak in May/June, which was a petrifying time, but I’m still not me.
Feeling a bit sorry for myself as wondering why I’m one of the ones who seem destined to never be in full health.

*back to full health

I can see why the GP thinks anxiety op. All of those symptoms you've listed, apart from the sneezing, are symptoms of anxiety. I'm not saying that's what you have, but have you tried anything that might help with anxiety? Mindfulness, meditation, exercise etc.