I rested my way to recovery from long Covid. I urge others to do the same

BrightCandle

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The NHS Is just committing widespread crimes against humanity at this point as it tortures very ill people. It is doing so knowing full well the effects and the criticism of the worlds medical community and it does it anyway.

Glad you improved from rest. My friend who was also just long hauling got quite a bit better after their first vaccine shot and I seemed to get a boost from that too.
 

xebex

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Rest is of course very important and should be recognised by the medical establishments BUT some people are so ill that just living brings them out of a resting state.

I'm "only" moderately ill, but I have a child, and just tending to her brings me out of any resting state I might achieve. It's not possible for me to rest with little me shouting mummy mummy mummy all day long - oh joy at the thought of the summer holidays!

True resting really isn't an option for most people.
 
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Thing is surely they have PVFS if rest gets them well? Even if it takes 12 months. ME is - you aggressively pace, you relentlessly rest - it makes zero difference. In my case it helped my dizziness and the pervasive muscle fatigue that took over every cell in my body gradually got better until I just had fatigue that recovered if I sat still.

The first 10 months was me resting and never ever improving the fatigue in my muscles. The next 12 months was me being able to recover muscle fatigue if I rested for time.

I was taking siberian ginseng throughout the whole period anyway which I am still convinced has some sort of immune modulating effect.
 

Boba

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The NHS Is just committing widespread crimes against humanity at this point as it tortures very ill people. It is doing so knowing full well the effects and the criticism of the worlds medical community and it does it anyway.

Glad you improved from rest. My friend who was also just long hauling got quite a bit better after their first vaccine shot and I seemed to get a boost from that too.
I didn’t get better. I quoted the title of the guardian article. I was pretty good until my therapist animated me to exercise stating that I was healthy and my headaches & heavy legs would go away with riding my bike every day for 10 km. My life is over because of this advise…
 

ljimbo423

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Thanks to my doctors and therapist who told me to exercise!!
Thanks for the link. This is a quote from the link. 89% of the long covid patients experienced PEM-

In December, the Patient-Led Research Collaborative – which I work with as a long Covid patient advocate – published a study of 3,762 long Covid patients who first became sick between December 2019 and May 2020.

The researchers found that 89% of respondents reported experiencing post-exertional malaise, with physical activity and stress listed as the most common triggers for crashes, followed by exercise and mental activity.

The study also found that “pacing” was listed as the most common treatment that patients found helpful.
 
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What baffles me with that advise is that it doesn't make any sense. A researcher who's also a member of PR told me the other day that it's actually a real disease. SHe did give it a name now which I can't for the life of me remember. But apparently for some people (none of them are post viral) exercise gets them better. Although how they haven't been able to distinguish between the two is equally bad!
 

xebex

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Thing is surely they have PVFS if rest gets them well? Even if it takes 12 months. ME is - you aggressively pace, you relentlessly rest - it makes zero difference. In my case it helped my dizziness and the pervasive muscle fatigue that took over every cell in my body gradually got better until I just had fatigue that recovered if I sat still.

The first 10 months was me resting and never ever improving the fatigue in my muscles. The next 12 months was me being able to recover muscle fatigue if I rested for time.

I was taking siberian ginseng throughout the whole period anyway which I am still convinced has some sort of immune modulating effect.

i do believe that resting helps but it's not viable for many people, I mean they have no choice but to rest, but you just can't rest enough.

I've had ME for 11 years, the first 6 were mild but about 5 years ago I started to go downhill till suddenly moderate/severe. I'm now a strong moderate and that has been achieved partially by resting and pacing but I can never rest enough.
 

Boba

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Don’t you guys think, that one can avoid chronification by resting after the infection? A lot of long Covid people with PEM do get well again by avoiding exertion by any means.
 

dylemmaz

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I didn’t get better. I quoted the title of the guardian article. I was pretty good until my therapist animated me to exercise stating that I was healthy and my headaches & heavy legs would go away with riding my bike every day for 10 km. My life is over because of this advise…
same thing for me. been sick 4 years and my doctors just told me i had anxiety and had to exercise and ignore my symptoms and stop looking stuff up. biked the whole time i’ve been sick and progressively got worse. wasn’t able to make the connection because my pem was very delayed. now i’m so sick and my life is over as well. it sucks
 

Boba

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same thing for me. been sick 4 years and my doctors just told me i had anxiety and had to exercise and ignore my symptoms and stop looking stuff up. biked the whole time i’ve been sick and progressively got worse. wasn’t able to make the connection because my pem was very delayed. now i’m so sick and my life is over as well. it sucks
The very best thing one can do is look stuff up online. I was told not to as well… Big mistake
 

dylemmaz

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Don’t you guys think, that one can avoid chronification by resting after the infection? A lot of long Covid people with PEM do get well again by avoiding exertion by any means.
i’m almost positive i would be well today if my original advice i was given was to rest and pace. the only thing that has ever made me worse was over exertion and exercise. i had mild cfs to begin with. if not cured, i would at least be thousands of times more functional than i am now
 

xebex

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Don’t you guys think, that one can avoid chronification by resting after the infection? A lot of long Covid people with PEM do get well again by avoiding exertion by any means.
I think early recognition and acknowledgment. that rest is very important would go a long way but when you’re mild and you CAN do things it would be very hard to to not do the things, judging from experience. Also if the culture changed and doctors said very urgently you need to stop what you’re doing right now and rest people wouldn’t listen they would be like “I’m fine!!! Plus I need to work!” And then fuck themselves up.
 

Boba

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So sorry man. I only had weak legs and headaches after Covid... I wasn't resting properly as advised by my therapist. It is a big scandal and nobody is interested...
 

Boba

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I think early recognition and acknowledgment. that rest is very important would go along way but when you’re mild and you CAN do things it would be very hard to to not do the things, judging from experience. Also if the culture changed and doctors said very urgently you need to stop what you’re doing right now and rest people wouldn’t listen they would be like “I’m fine!!! Plus I need to work!” And then fuck themselves up.
I would have followed that advise. I visited so many doctors wish one had told me to rest... My financial situation was fine had no obligations. Total rest might have helped.
 

xebex

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I think the number one thing is that doctors tell you to rest and if you take that advice then great.

When I first got sick I think if my doc had demanded I rest and urgently written me a sick note for work id have listened. I’d have hoped that it would have gone away 100%. I was however able to live fairly normally for 6 years so I thought I had it under control. Why would I get worse if for 6 years I was managing it fairly well?

Also how do we know how long to rest? 6 weeks? 6 months?

Maybe you’re right though, if the docs were more insistent on rest rather than telling me there was nothing wrong with me I may have listened and not be where I am now.
 
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Boba

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I'
I think the number one thing is that doctors tell you to rest and if you take that advice then great.

when I first got sick I think if my doc had demanded I rest and urgently written me a sick
Note for work id have listened, I’d have hoped that it would have gone away 100% I was however able to live fairly normally for 6 years so I thought I had it under control. Why would I get worse if for 6 years I was managing it fairly well?

also how do we know how long to rest? 6 weeks? 6 months?

Maybe you’re right though if the docs were more insistent on rest rather than telling me there was nothing wrong with me I may have listened and not be where I am Now.
I'm so sorry that you declined. Did you know about your illness while you were mild? The whole psychologisation made so many people worse. Not following virus related illnesses for decades is such a big shame...
 

dylemmaz

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Maybe you’re right though if the docs were more insistent on rest rather than telling me there was nothing wrong with me I may have listened and not be where I am Now.
being told there was nothing wrong with me was one of the most damaging parts. my body knew i was sick and i would naturally pace the times that i was able to convince myself of it. but it’s difficult, with all of the gaslighting. one begins to doubt that they are truly sick and the natural instinct to pace when you feel unwell vanishes. when i caved not to how my body felt but how others (doctors) told me to feel, that is when i got worse. it’s hard being a 19 year old that is sick standing up to the authority of many doctors and specialists and the public telling you that you are fine and healthy. you naturally start to distrust yourself and your illness

doctors telling us that nothing is wrong is almost certainly a big problem in many of the stories that i’ve heard
 

xebex

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I think that if we remove the word fatigue from when we visit docs then they might listen more - of course things need to change so that alarm bells (rather than eye rolls) ring for them when someone says fatigue. But I’m 100% sure when you say that word they stop listening.