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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Any doctors on here? Can’t do this anymore

79 replies

Cantdothis78 · 15/11/2020 08:58

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.

OP posts:
BambooWhoosh · 15/11/2020 16:59

Sneezing can be a symptom of non-allergic rhinitis which can be brought on by stress. A family member had this. It would come on before a stressful event and resolve just as quickly.

www.nhs.uk/conditions/non-allergic-rhinitis/

hettie · 15/11/2020 17:28

There is a race on amogst medics and scientific researchers to understand more.... This article explains...
www.google.com/amp/s/amp.theguardian.com/world/2020/nov/15/damage-to-multiple-organs-recorded-in-long-covid-cases
It doesn't mention neurological or mental health conditions but that is certainly what our various professional bodies are briefing about. Ask for treatment for the symptoms...It may well be causing anxiety in some people so it would be good to treat that

toconclude · 15/11/2020 17:48

@secretskillrelationships

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.
It's "ridiculed" because it doesn't work. It's not radical, daring and alternative, whatever you like to pretend. It's charlatanism and any seeming good results will dissipate in the cold light of testing. Because they always do. Grossly irresponsible comment.
Cantdothis78 · 15/11/2020 18:09

@doctorhamster He said that in May, when doctors were unsure, I was unsure, I had no idea what was happening to me. It’s not anxiety, I’m not anxious aside from when symptoms flare up/relapse, it causes anxiety.
Please don’t dismiss it as anxiety, thousands others have felt the frustration in the past when people dismissed it as this, thankfully, people understand more now.

OP posts:
Cantdothis78 · 15/11/2020 18:11

@BambooWhoosh I wish it was that, it’s part of it, many long haulers are on anti histamines, as am I, it seems to cause inflammation in the body.

OP posts:
Cantdothis78 · 15/11/2020 18:15

@hettie That’s a frightening report 😔
I had a head ct scan in May as I honestly thought I was developing ms or a brain tumour, it was clear thank goodness. Most recent was a chest x ray and eco in July, all was ok. I certainly hope things haven’t declined since then, I just want this to end.

OP posts:
doctorhamster · 15/11/2020 18:37

I'm not in any way trying to dismiss what you're experiencing op. Having suffered from anxiety myself I would never dismiss anyone who has that either. It can cause very real physical symptoms. All of mine were the same as you're experiencing, barring the sneezing. That's why I mentioned it.

BigMomma164 · 15/11/2020 18:40

@SeaToSki push them and nag them for what? Ridiculous!! There isn't a magic cure that they are hiding!!

2bazookas · 15/11/2020 18:40

@secretskillrelationships

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.
We have used homeopathy twice (unrelated disporders) with almost miraculous results. Both times on the NHS from fully qualified NHS doctors. Both times. for sick children; both times, when they had already been referred to experts who had said nothing more could be done by conventional medicine. Both made a swift and complete recovery within weeks of starting homeopathy.
   .
CovidHalloween · 15/11/2020 19:04

Homeopathy is a form of placebo.
If the OP has long covid as she thinks she does, she needs to get real medicine not a watered down form of herbal “medicine”.

RightYesButNo · 15/11/2020 19:13

I think what @doctorhamster may be trying to say is that we don’t know the neurological effects of COVID yet. I’ve been concerned for a while, since I’ve seen the articles that even people with mild or asymptomatic cases are having neurological effects. It could be that it’s causing a hormone imbalance for you, or something in your brain that can’t be read by CT yet (something in the pituitary gland, maybe) that’s causing a lot of overlapping symptoms with anxiety.

If it is something like the pituitary, the only thing you really can do is treat the “anxiety” symptoms (i.e. you don’t have anxiety, but a problem with COVID-affected chemistry is causing the same symptoms, like diarrhea, racing heartbeat, nausea, feelings of anxiety, etc). The sneezing to me is another sign that this is neurological; we have a “sneezing center” of nerves in our brain stem, so if you’re having some kind of neurological inflammation from long COVID it could affect that, too.

Here are my three ideas. 1. You could try treating the “symptoms,” a lot of which line up with anxiety, since we know COVID attacks us neurologically, and wait for it to go away or for us to know more. I know that’s difficult to say, and even more difficult to deal with, but that’s often what people have to do when part of their brain is affected (for example, often people experience anxiety from taking steroids - they still have to treat the anxiety, though). 2. You see a neurologist. Even if your CTs are clear, it seems most likely that your problems are coming from this level and medications that affect the way your nerves work may help (something like gabapentin or duloxetine, as perhaps COVID inflammation has affected your nerve fibers, etc.) 3. Instead of just trying specific vitamins, you speak to maybe a registered dietician about a low inflammation diet (if that’s not possible, try Google or Facebook groups) and see if attempting to lower inflammation makes a difference. Maybe it won’t at all, but it might be worth an attempt.

It sounds as though you’ve been blessed with fairly good health in your life and, as a result, this is particularly hard for you. This isn’t meant to sound cruel, but when you said you couldn’t take anymore, I thought you were going to say you were one of the people who can’t walk around their own house without experiencing lung pain and being short of breath six months later, who aren’t able to work or live or even go out, so I was a bit surprised when you mentioned the transient nature of your symptoms. BUT I also understand that what you’re experiencing is extremely difficult for you, and I know the frustration of ill health, how it can truly sap your hope, so I really do hope you either find a solution OR that it starts improving soon.

Fouroclockonamarblemorning · 15/11/2020 19:31

I’m not a doc but I’m on month 2 post Covid. Still feeling breathless, exhausted and generally unwell. I seem to feel so so first thing in the morning and then deteriorate as the day goes on. By the evening I feel like my windpipe, throat and inside my ears are swollen and sore again. My breathing is still quite crackly. My gp said there’s nothing she can give me, it’s just a case of riding it out.
I really feel for you and hope you feel better soon.

im5050 · 15/11/2020 19:40

OP if you have ever suffered to any type of gastric problem, stomach ulcers, stomach surgery gallstone kidney stones biatric surgery

I would recommend taking vitamin sprays and not tablets
For some reason if you take tablets you might as well be taking M&Ms
Vitamin sprays are much more effective than Vitamin tablets if you have suffered from stomach problems.
So if your taking tablets you could try taking better you D300 spray from Holland & Barret or Amazon it’s about £7 and will last 6 -8 weeks
Also try a company like blue horizon or thriva
Get your bloods checked and include your vitamin D levels and iron levels & B12
That way you will know exactly where you are in terms of taking vitamins
I get mine tested every 4 months as I suffer from very low iron and B12 so like to keep an eye on my levels

CovidHalloween · 15/11/2020 19:40

www.theguardian.com/world/2020/nov/15/damage-to-multiple-organs-recorded-in-long-covid-cases

This might be of interest to anyone with long covid.

Mummydoctor · 15/11/2020 20:04

As medics we are still very much learning about long COVID and how to manage it. As mentioned earlier the symptoms are variable and often similar to a chronic fatigue picture. Apart from excluding treatable complications (such as blood clots/heart failure/vit deficiencies) the main stay of management is helping to support patients manage their symptoms and to learn to manage their symptoms as best they can.
This website has been useful to direct patients to:
www.yourcovidrecovery.nhs.uk/
We are also starting to have some access to long COVID clinics locally, but the waiting times are already very long.

furloughandfallow · 15/11/2020 20:11

Look on the ms society website. They have a great/free resource on fatigue management that I've heard is very helpful

Junkmail · 15/11/2020 20:17

I have nothing to say that would help OP except to sympathise deeply because I’m in the same situation. Although my current symptoms aren’t as bad as yours—some days I feel okay but then I have days where it comes back. The crushing fatigue is the worst but I also get aches and tightness of chest. I also still cannot taste or smell anything and have been like this since around April. Morale is low. Especially as it has worsened the eating disorder I was already wrestling with. It’s really hard. I’m taking a lot of supplements too and nothing seems to help. I really feel for you because I understand and especially as there are some days when it feels like it’s coming to an end for it all just to pile back on. I feel there needs to be more research into long covid because this is not the “two weeks of bad flu” we were told that most people would experience.

TheAdventuresoftheWishingChair · 15/11/2020 20:41

Please don’t dismiss it as anxiety, thousands others have felt the frustration in the past when people dismissed it as this, thankfully, people understand more now.

It sounds so horrible OP. I just wanted to say anxiety can make you physically very unwell (with 'real' symptoms) so please don't yourself dismiss that anxiety can a loop of then recurring physical symptoms. It can make you so ill.

Anyway, it must be absolutely dreadful to still be struggling so badly so I hope it eases up. All you can do for now, I think, is take really good care of yourself, rest up lots and be patient and hopefully your body will find a way through it. The body is capable of healing from all sorts over time. There is hope.

Tootsey11 · 15/11/2020 20:44

Op, I can understand as I am the same. I got CV before original lockdown and am still not well.

I don't think anyone can really understand unless they have been through the same. I have good days and bad days, my worst symptom at the moment is back burning. It has increased greatly, but I am also still short of breath, chest pain, and every day so bloody tired. I feel like the virus will never leave my body, it will remain there in some form.

I have a physical job, I have reduced my hours and tried to pace myself. I am conscious of the fact that I need to keep eating regularly and keep hydrated. The only vitamin that I was low in before this was b12, so I've started them a few months back.

I am 45 with a long list of chronic conditions, this has really taken its toll and I'm as fedup with doctors like you, who say there is nothing wrong. It is not damn anxiety.

We can only hope with time they find a way to treat all those who have been left suffering with this.

mayflowerapplepie · 15/11/2020 20:49

The doctors can’t help because this is all new. However much they want to they don’t HAVE the answers. Long covid sounds awful and I have huge sympathy. I don’t think anyone had any idea that it would be this huge shadow epidemic behind the disease itself

TheChineseChicken · 15/11/2020 20:57

Have you had it confirmed that it’s long covid? If it’s been 8 months that would have been before testing was widely available. I only ask in case it’s something else that there are known treatments for. Sorry if a silly question.

Cantdothis78 · 15/11/2020 20:59

@Tootsey11 @Junkmail So sorry you’re both feeling similar too, it really is never ending isn’t it 😢I can’t see an end to this just recently. When I was teaching the 6 month mark, things felt as though they could be improving, after a bad month now, I can’t see when they will. The anxiety thing is damn annoying and so frustrating, I’m trying to ignore people who think that as I find it so upsetting. It really is truly difficult to understand unless you’re in this position.

OP posts:
Cantdothis78 · 15/11/2020 21:01

@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?

OP posts:
Cantdothis78 · 15/11/2020 21:01

@Fouroclockonamarblemorning So sorry you’re experiencing it too.

OP posts:
Cantdothis78 · 15/11/2020 21:08

@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.

OP posts: