What info to give doctor about possible CFS/long covid?
February 19, 2022 8:38 AM Subscribe
I've been dealing with extreme fatigue, can't eat/think, etc. for coming up on 3-4 weeks now. What should I have listed/ask about when I see my doctor Tuesday? Also, if you have this, how did you deal with it and/or talk to your doctor? Thanks.
I've been trying to figure out what's happening to me, it's definitely not depression or anxiety, it's very much something physically wrong with me.
Factors:
**Been changing ADHD medication, during the worst of the fatigue spells, I thought the medication was causing it. It isn't.
**Quit drinking after a long time of drinking regularly 3 weeks ago.
**I don't think I've had COVID but it could've been very mild, I'm vaccinated and boosted in November.
**I find it extremely hard to eat sometimes with this going on. Nausea, no appetite, stress.
**I started a job in late October that I love but also is stressful and I've been taking that hard, especially in January/February.
**Yesterday we went for a short walk and I got out of breath and had to lay down for 20-30 minutes afterward. I'm a healthy 38 year old guy so this isn't normal.
What I have been doing to try to help:
**Get enough sleep. 8+ hours in bed, it can be hard to fall asleep or stay asleep.
**Keep hydrated and eat. I got nutritional shakes (Soylent) for when I can't stomach food, I'm really trying to get enough calories.
**Talked to therapist, wife, friends.
Anyway, I guess I want to know if others have experienced this and how they talked to their doctor or any advice they have for me.
I've been trying to figure out what's happening to me, it's definitely not depression or anxiety, it's very much something physically wrong with me.
Factors:
**Been changing ADHD medication, during the worst of the fatigue spells, I thought the medication was causing it. It isn't.
**Quit drinking after a long time of drinking regularly 3 weeks ago.
**I don't think I've had COVID but it could've been very mild, I'm vaccinated and boosted in November.
**I find it extremely hard to eat sometimes with this going on. Nausea, no appetite, stress.
**I started a job in late October that I love but also is stressful and I've been taking that hard, especially in January/February.
**Yesterday we went for a short walk and I got out of breath and had to lay down for 20-30 minutes afterward. I'm a healthy 38 year old guy so this isn't normal.
What I have been doing to try to help:
**Get enough sleep. 8+ hours in bed, it can be hard to fall asleep or stay asleep.
**Keep hydrated and eat. I got nutritional shakes (Soylent) for when I can't stomach food, I'm really trying to get enough calories.
**Talked to therapist, wife, friends.
Anyway, I guess I want to know if others have experienced this and how they talked to their doctor or any advice they have for me.
I would emphasize that this is NOT anxiety/stress etc. (Unless you think it is!) In my experience of being diagnosed with a rare disease, doctors were definitely inclined to chalk up unusual symptoms in that direction and it really muddied the waters. If you are experiencing fatigue and or a brain fog I would also suggest bringing another person to your appointment with you who can help you keep track of what is being said and also cue you if you’re leaving something important out. Good luck!
posted by jeszac at 9:53 AM on February 19, 2022 [3 favorites]
posted by jeszac at 9:53 AM on February 19, 2022 [3 favorites]
Go in, tell the doctor you don't know what's going on, but [symptoms]. Have a paper list of what you've tried to alleviate the symptoms. Include a timeline. Be complete but succinct. If you can't remember it all, ask someone close to you to help. Don't wait til the morning of your appointment. Start it now, because you'll remember things later, especially if you're dealing with brain fog.
Be taking a decent multivitamin. Be aware of getting enough vitamin D and supplement if necessary. Iron, too. If you can't deal with swallowing the huge vitamin pills, or they don't rest easy on your stomach, get the gummies. Just make sure you're taking the right amount. They're worth it if it'll get you to actually take the vitamins instead of skip them for fear of an upset stomach.
If you can, grab one of the oxygen sensors that's available inexpensively just about everywhere. Keep it with you, and check and record it regularly, so that you can check it immediately the next time the out-of-breath experience happens. I wish I'd done that sooner.
Try to keep at least a little active, with a short walk or walks.
Personally, I'd recommend not trying to self-treat the fatigue/brain fog with caffeine - it doesn't really work (in my opinion) on the Covid-related fatigue, and it'll just dehydrate you more and make your sleep pattern messier. (Spoken from experience.)
Start keeping notes; what you ate, how much you slept, what you were doing, if you had to stop doing or couldn't do something because of it, etc. Things like carrying groceries, going for a walk, doing housework. This, too, I wish I'd done a better job of; the fatigue / brain fog made it really tough.
Seriously, start now, and keep a good log. Backdate & record as much as you can remember. Really. You may not need it, but just in case... it will help SO much. Include physical symptoms, both measurable and not. Make sure to note the impact. Record the impact this has mentally and functionally. Make sure to date the start of anything new.
Because I have other health issues, and am in my mid-40s, it's been tough to get medical professionals to take the drastic change in my health seriously despite how sudden and dramatic the difference was. It's been even more "fun" because I'm 1) female, 2) going from a VERY active on my feet job to lethargy due to Covid made me gain weight, despite eating almost nothing (and than each new doc assumes it's the cause, rather than a symptom, 3) Residual effects of childhood medical neglect often makes it difficult to advocate for myself.
If they suggest other tests (sleep testing, in my experience), cooperate so it can be ruled out. In my case, we've found ridiculously mild sleep hypopnea, like barely treatable, but just enough they're doing it anyway. The cpap itself changing nothing, but diagnosis and "controlling" that very low level has allowed them to go a step further with insurance and prescribe a medication that's helped some with the sleepiness/brain fog.
I don't feel like I'm getting very far, honestly. I've been dealing with this since the FIRST time I had Covid, in Dec 2020. I wish I had all those notes I recommended to you. Pretty sure I'd be in a better spot. I'm only just now realizing how helpful it would have been and following through with the documentation.
Hopefully, I hope you never need it. But if you do... it's priceless.
posted by stormyteal at 10:02 AM on February 19, 2022 [3 favorites]
Be taking a decent multivitamin. Be aware of getting enough vitamin D and supplement if necessary. Iron, too. If you can't deal with swallowing the huge vitamin pills, or they don't rest easy on your stomach, get the gummies. Just make sure you're taking the right amount. They're worth it if it'll get you to actually take the vitamins instead of skip them for fear of an upset stomach.
If you can, grab one of the oxygen sensors that's available inexpensively just about everywhere. Keep it with you, and check and record it regularly, so that you can check it immediately the next time the out-of-breath experience happens. I wish I'd done that sooner.
Try to keep at least a little active, with a short walk or walks.
Personally, I'd recommend not trying to self-treat the fatigue/brain fog with caffeine - it doesn't really work (in my opinion) on the Covid-related fatigue, and it'll just dehydrate you more and make your sleep pattern messier. (Spoken from experience.)
Start keeping notes; what you ate, how much you slept, what you were doing, if you had to stop doing or couldn't do something because of it, etc. Things like carrying groceries, going for a walk, doing housework. This, too, I wish I'd done a better job of; the fatigue / brain fog made it really tough.
Seriously, start now, and keep a good log. Backdate & record as much as you can remember. Really. You may not need it, but just in case... it will help SO much. Include physical symptoms, both measurable and not. Make sure to note the impact. Record the impact this has mentally and functionally. Make sure to date the start of anything new.
Because I have other health issues, and am in my mid-40s, it's been tough to get medical professionals to take the drastic change in my health seriously despite how sudden and dramatic the difference was. It's been even more "fun" because I'm 1) female, 2) going from a VERY active on my feet job to lethargy due to Covid made me gain weight, despite eating almost nothing (and than each new doc assumes it's the cause, rather than a symptom, 3) Residual effects of childhood medical neglect often makes it difficult to advocate for myself.
If they suggest other tests (sleep testing, in my experience), cooperate so it can be ruled out. In my case, we've found ridiculously mild sleep hypopnea, like barely treatable, but just enough they're doing it anyway. The cpap itself changing nothing, but diagnosis and "controlling" that very low level has allowed them to go a step further with insurance and prescribe a medication that's helped some with the sleepiness/brain fog.
I don't feel like I'm getting very far, honestly. I've been dealing with this since the FIRST time I had Covid, in Dec 2020. I wish I had all those notes I recommended to you. Pretty sure I'd be in a better spot. I'm only just now realizing how helpful it would have been and following through with the documentation.
Hopefully, I hope you never need it. But if you do... it's priceless.
posted by stormyteal at 10:02 AM on February 19, 2022 [3 favorites]
**Quit drinking after a long time of drinking regularly 3 weeks ago.
This can cause fatigue, initially - it's one reason people have a hard time quitting. You often don't feel the benefit until at least a month or so in (depending on how heavy your drinking was).
It also sounds like you're under a lot of stress - that could impact appetite (I've never understood 'stress eating' myself - when I'm anxious, I have a hard time eating too).
So, I'd lay out these symptoms to your doctor, but I wouldn't assume it was long COVID per se.
posted by coffeecat at 10:50 AM on February 19, 2022 [5 favorites]
This can cause fatigue, initially - it's one reason people have a hard time quitting. You often don't feel the benefit until at least a month or so in (depending on how heavy your drinking was).
It also sounds like you're under a lot of stress - that could impact appetite (I've never understood 'stress eating' myself - when I'm anxious, I have a hard time eating too).
So, I'd lay out these symptoms to your doctor, but I wouldn't assume it was long COVID per se.
posted by coffeecat at 10:50 AM on February 19, 2022 [5 favorites]
I've had long covid to varying degrees for close on 2 years and firstly, yeah, if you don't know you've had Covid, probably don't lead with that idea to your doctor - give them your symptoms and let them make a call. Once they've told you what they think, you can maybe say "I had wondered if it might be long covid, after a covid infection that was so slight I didn't notice it at the time, would it be possible to get the routine tests you'd do in that situation?"
The good/bad news is that if it is long covid, there's kind of f*** all they can do for you atm so it's not like you're missing out on some great treatment if they don't embrace the idea. Here in the UK the main things they do when it's suspected are a routine blood panel (including whatever the blood test is that can check for impending blood clots on the lungs or something of that ilk, which is probably a decent thing to push for if you're breathless anyway), a chest X-ray, ECG, and that's about it. In a lot of people with long covid, even those who are very sick with it, none of those tests show anything unusual, and at that stage you're kind of left with a shrug from the GP, and maybe if you're lucky a referral to a CFS clinic/pulmonary physio or some such.
That aside, you might find some of the suggestions in this recent thread on CFS useful. Most of all, if it's long covid/CFS, just doing absolutely nothing is one of the most useful things. For me, just lying down listening to an audiobook, doing some breathing exercises and not looking at my phone can really bring down my physiological stress response in a way that I don't get from watching TV/browsing the internet/playing daft games on my phone. Even if it's not long covid or CFS, that's a pretty good thing to do with yourself when your body is undergoing significant stress or illness.
As an aside, while I believe you that this is not depression or anxiety, prolonged stress can absolutely cause very real physical symptoms including deadening fatigue, brain fog and loss of appetite, so don't rule that out as a possible cause (I say this by way of good news, because if the deeply stressful period of acclimating to your new job might pass in due course, then things will improve without the need for treatment/medication etc.) One of the things emerging among folk with long covid is the role that stress plays in exacerbating our physical symptoms. Not necessarily serious stress, but even pretty mild stuff like concentrating for too long. There's a feeling that long covid does a number on the autonomic nervous system, leaving the body prone to moving too easily into the 'fight' part of the 'fight or flight' response, and getting stuck there, so heart rate remains high even at rest, fatigue builds, weird blood pressure stuff happens etc. So really working hard on being aware of even the mildest of stresses, and going overboard on the antidotes, can help minimise the physical suffering. A lot of folk use Garmin devices and find them useful to examine stress levels, heart rate, and Garmin's 'body battery' (a combo of stress, heart rate variability and sleep quality measure), enabling them to work out which activities help and which hinder.
posted by penguin pie at 12:53 PM on February 19, 2022 [5 favorites]
The good/bad news is that if it is long covid, there's kind of f*** all they can do for you atm so it's not like you're missing out on some great treatment if they don't embrace the idea. Here in the UK the main things they do when it's suspected are a routine blood panel (including whatever the blood test is that can check for impending blood clots on the lungs or something of that ilk, which is probably a decent thing to push for if you're breathless anyway), a chest X-ray, ECG, and that's about it. In a lot of people with long covid, even those who are very sick with it, none of those tests show anything unusual, and at that stage you're kind of left with a shrug from the GP, and maybe if you're lucky a referral to a CFS clinic/pulmonary physio or some such.
That aside, you might find some of the suggestions in this recent thread on CFS useful. Most of all, if it's long covid/CFS, just doing absolutely nothing is one of the most useful things. For me, just lying down listening to an audiobook, doing some breathing exercises and not looking at my phone can really bring down my physiological stress response in a way that I don't get from watching TV/browsing the internet/playing daft games on my phone. Even if it's not long covid or CFS, that's a pretty good thing to do with yourself when your body is undergoing significant stress or illness.
As an aside, while I believe you that this is not depression or anxiety, prolonged stress can absolutely cause very real physical symptoms including deadening fatigue, brain fog and loss of appetite, so don't rule that out as a possible cause (I say this by way of good news, because if the deeply stressful period of acclimating to your new job might pass in due course, then things will improve without the need for treatment/medication etc.) One of the things emerging among folk with long covid is the role that stress plays in exacerbating our physical symptoms. Not necessarily serious stress, but even pretty mild stuff like concentrating for too long. There's a feeling that long covid does a number on the autonomic nervous system, leaving the body prone to moving too easily into the 'fight' part of the 'fight or flight' response, and getting stuck there, so heart rate remains high even at rest, fatigue builds, weird blood pressure stuff happens etc. So really working hard on being aware of even the mildest of stresses, and going overboard on the antidotes, can help minimise the physical suffering. A lot of folk use Garmin devices and find them useful to examine stress levels, heart rate, and Garmin's 'body battery' (a combo of stress, heart rate variability and sleep quality measure), enabling them to work out which activities help and which hinder.
posted by penguin pie at 12:53 PM on February 19, 2022 [5 favorites]
This is just anecdotal because you asked us to share if we had anything similar. I had the out of breath thing start a couple of weeks ago over something as small as climbing stairs and it turned out to be COVID. I also had a loss of appetite fwiw.
I requested a PCR test from the NHS and they sent me the results last week, telling me to self isolate until late next week. I don't know what the equivalent is in your country but I would suggest you reach out to your doctor for clarification and peace of mind. I didn't need to speak to my doctor as it's all done via a website, so I can't help with a script but I agree with the other poster to not lead with the idea that it's COVID and let the doc reach their own conclusion.
I've had three COVID vaccinations (the two main ones then the booster in December).
The breathlessness is still present and it is coupled with mild fatigue, which is exacerbated by stress and external noise.
My strongest coping mechanism right now is to cut out any notion of multi-tasking. I worked from home on Thursday afternoon only and I was so exhausted trying to multi-task that I then had to take a sick day on Friday because of it. The constant emailing and online presence of other people made it worse.
Cutting out people, cutting out noise, cutting down tasks to one or two things per day (not just work but also whatever I do for fun/relaxation e.g. no binge watching), drinking lots of water and resting regularly all seem to help matters.
I'm hoping this goes away and I hope you don't have it. Good luck.
posted by ihaveyourfoot at 2:39 PM on February 19, 2022 [1 favorite]
I requested a PCR test from the NHS and they sent me the results last week, telling me to self isolate until late next week. I don't know what the equivalent is in your country but I would suggest you reach out to your doctor for clarification and peace of mind. I didn't need to speak to my doctor as it's all done via a website, so I can't help with a script but I agree with the other poster to not lead with the idea that it's COVID and let the doc reach their own conclusion.
I've had three COVID vaccinations (the two main ones then the booster in December).
The breathlessness is still present and it is coupled with mild fatigue, which is exacerbated by stress and external noise.
My strongest coping mechanism right now is to cut out any notion of multi-tasking. I worked from home on Thursday afternoon only and I was so exhausted trying to multi-task that I then had to take a sick day on Friday because of it. The constant emailing and online presence of other people made it worse.
Cutting out people, cutting out noise, cutting down tasks to one or two things per day (not just work but also whatever I do for fun/relaxation e.g. no binge watching), drinking lots of water and resting regularly all seem to help matters.
I'm hoping this goes away and I hope you don't have it. Good luck.
posted by ihaveyourfoot at 2:39 PM on February 19, 2022 [1 favorite]
High blood pressure, or an irregular heartbeat will make people tired. Afib will do that, if you are taking Metformin, in combination with illness, but you are not really diabetic, it can give you such low blood sugar you feel awful.
posted by Oyéah at 2:44 PM on February 19, 2022
posted by Oyéah at 2:44 PM on February 19, 2022
I would lead with short of breath after a short walk.
That will generally get the doctor's attention.
This could be due to a number of reasons besides covid.
But it's something that can checked simply at least initially.
posted by yyz at 3:09 PM on February 19, 2022 [2 favorites]
That will generally get the doctor's attention.
This could be due to a number of reasons besides covid.
But it's something that can checked simply at least initially.
posted by yyz at 3:09 PM on February 19, 2022 [2 favorites]
To get a workup of your symptoms I suggest pitching this in the way that doctors are trained to think and avoid suggesting possible causes to them. That can inspire some defensiveness or annoyance that may become a barrier to getting the care you seek. Prepare yourself that 3 weeks is not a 'long time' in doctor thinking and none of your symptoms appear on the surface to inherently indicate a dangerous process. So this IS important and you SHOULD seek advice, but IMHO you may get better results when you can understand how the provider is thinking about this stuff.
Agree with above suggestion to write down what you want to cover and bring that to the appointment. Keep your notes very focused think bullet points like you made above, but create two lists:
1) list of your symptoms leading with the shortness of breath. Emphasize that this is very different than your baseline.
2) list of what you've tried already.
They will likely ask what has changed in your life, and you have that list already above. I suggest attaching specific dates to that list so you can concisely say, "I changed from X to Y ADHD med on January 2nd, but fatigue started February 1st" or whatever.
I would expect blood work as a first diagnostic step including the labs already named in previous answers.
posted by latkes at 5:10 PM on February 19, 2022 [1 favorite]
Agree with above suggestion to write down what you want to cover and bring that to the appointment. Keep your notes very focused think bullet points like you made above, but create two lists:
1) list of your symptoms leading with the shortness of breath. Emphasize that this is very different than your baseline.
2) list of what you've tried already.
They will likely ask what has changed in your life, and you have that list already above. I suggest attaching specific dates to that list so you can concisely say, "I changed from X to Y ADHD med on January 2nd, but fatigue started February 1st" or whatever.
I would expect blood work as a first diagnostic step including the labs already named in previous answers.
posted by latkes at 5:10 PM on February 19, 2022 [1 favorite]
Hello there - CFS/ME and Long Covid patient here, both diagnosed by medical docrtors.
Here's what I did to get them to listen to me. YMMV, but it worked for me:
1. Try to write all of the different symptoms down, no matter how varied they may be. If fatigue/brain fog is an issue, definitely enlist a friend to help with this.
2. Try to describe the fatigue in as much detail as you can. What were you doing befor eyou got fatigued, how does it feel when you are fatigued, how long does it take to recover from the fatigue, etc.
For instance, in my case: "Yesterday, I took a 30 minute walk. I woke up today with a fever of 99.3 degress, I felt flushed all over, and I can't clearly think. I got up to brush my teeth, and got a dizzy spell; had to lie down on bathroom floor. After 10 min I was able to brush teeth, but then returned to bed for 4 hours."
3. Try to document every time this happens, in order to establish a pattern. I was able to prove that my fatigue was due to CFS/ME, because I'd always be seriously fatigued the day after I did anything that required a lot of physical or mental exertion. And then, when that happened? I'd be down for the count for that day. The phrase that describes this is "post-exertional malaise".
4. If you think that you have had Covid in the past, you may be able to get an antibodies test. Though a negative test doesn't mean that you didn't have Covid in the past.
5. Take a multivitamin. It may sound basic, but it turns out that part of my fatigue is also caused by a lack of iron; this has been verified in my lab results. To, taking a multivitamin with iron added has also helped me.
Once I had stuff to hand my doc in terms of notes and such, he was able to start trying to diagnose me. He first started with common blood work, then uncommon blood work, and then a referral to an Endocrinologist, for them to also do blood work. I finally got a referral to a Long Covid Specialist in Seattle, and he doagnosed me with CFS/ME caused by Long Covid. (I can also recall when I've been sick with Short Covid, back in March, 2020. I couldn't get a test in time to diagnose me as such, but I had all the symptoms, and I had to have a long of taper of Prednisone afterwards, because it made my lungs so much worse.)
posted by spinifex23 at 6:29 PM on February 19, 2022 [2 favorites]
Here's what I did to get them to listen to me. YMMV, but it worked for me:
1. Try to write all of the different symptoms down, no matter how varied they may be. If fatigue/brain fog is an issue, definitely enlist a friend to help with this.
2. Try to describe the fatigue in as much detail as you can. What were you doing befor eyou got fatigued, how does it feel when you are fatigued, how long does it take to recover from the fatigue, etc.
For instance, in my case: "Yesterday, I took a 30 minute walk. I woke up today with a fever of 99.3 degress, I felt flushed all over, and I can't clearly think. I got up to brush my teeth, and got a dizzy spell; had to lie down on bathroom floor. After 10 min I was able to brush teeth, but then returned to bed for 4 hours."
3. Try to document every time this happens, in order to establish a pattern. I was able to prove that my fatigue was due to CFS/ME, because I'd always be seriously fatigued the day after I did anything that required a lot of physical or mental exertion. And then, when that happened? I'd be down for the count for that day. The phrase that describes this is "post-exertional malaise".
4. If you think that you have had Covid in the past, you may be able to get an antibodies test. Though a negative test doesn't mean that you didn't have Covid in the past.
5. Take a multivitamin. It may sound basic, but it turns out that part of my fatigue is also caused by a lack of iron; this has been verified in my lab results. To, taking a multivitamin with iron added has also helped me.
Once I had stuff to hand my doc in terms of notes and such, he was able to start trying to diagnose me. He first started with common blood work, then uncommon blood work, and then a referral to an Endocrinologist, for them to also do blood work. I finally got a referral to a Long Covid Specialist in Seattle, and he doagnosed me with CFS/ME caused by Long Covid. (I can also recall when I've been sick with Short Covid, back in March, 2020. I couldn't get a test in time to diagnose me as such, but I had all the symptoms, and I had to have a long of taper of Prednisone afterwards, because it made my lungs so much worse.)
posted by spinifex23 at 6:29 PM on February 19, 2022 [2 favorites]
Get your blood sugar levels checked.
posted by Namlit at 1:33 AM on February 20, 2022 [1 favorite]
posted by Namlit at 1:33 AM on February 20, 2022 [1 favorite]
Vaccination protects against long Covid to a great extent, and surprisingly helps clear LC symptoms when vaccination comes after you recover from the Covid infection. So, possibly more reason to doubt LC as a cause.
Brainstorming about possible explanations, my wife suggested Lyme disease and I thought of breathing bad air, especially air, e.g. carbon monoxide poisoning (but that doesn't explain shortness of breath while walking).
I agree with the advice to not suggest any explanation to your doctor. Let him start with an open mind.
posted by SemiSalt at 5:13 AM on February 20, 2022 [1 favorite]
Brainstorming about possible explanations, my wife suggested Lyme disease and I thought of breathing bad air, especially air, e.g. carbon monoxide poisoning (but that doesn't explain shortness of breath while walking).
I agree with the advice to not suggest any explanation to your doctor. Let him start with an open mind.
posted by SemiSalt at 5:13 AM on February 20, 2022 [1 favorite]
Vaccination protects against long Covid to a great extent, and surprisingly helps clear LC symptoms when vaccination comes after you recover from the Covid infection.
Do you have a cite for that, SemiSalt? It contradicts a lot of what I've read (and indeed my own experience), so I'd be interested to hear more if there are people positing those things. All the long covid forums I'm in still have people arriving into them with long covid as a result of post-vax infections, (and indeed a few who feel they got it as a result of the vaccine). I remember a slew of articles when the vaccine was first out saying a few people found it seemed to improve their long covid symptoms, but I've not seen/heard any evidence of that happening in more than a tiny number of people.
posted by penguin pie at 7:57 AM on February 20, 2022 [1 favorite]
Do you have a cite for that, SemiSalt? It contradicts a lot of what I've read (and indeed my own experience), so I'd be interested to hear more if there are people positing those things. All the long covid forums I'm in still have people arriving into them with long covid as a result of post-vax infections, (and indeed a few who feel they got it as a result of the vaccine). I remember a slew of articles when the vaccine was first out saying a few people found it seemed to improve their long covid symptoms, but I've not seen/heard any evidence of that happening in more than a tiny number of people.
posted by penguin pie at 7:57 AM on February 20, 2022 [1 favorite]
Vaccination protects against long Covid to a great extent, and surprisingly helps clear LC symptoms when vaccination comes after you recover from the Covid infection.
The truth of the first part is unclear at this point, and at best, that second part needs to have a pretty important FOR SOME PEOPLE inserted in there. It's a big enough portion of folk that enough people have heard of improvement after vaccines that I'm sick of being asked if it helps, but it doesn't even seem to be most people that see that improvement. Like Vaccines are good, but after a couple of times of having people doubt that I was either vaccinated or really had Long COVID because I didn't get better after my jab, I feel like we probably shouldn't keep including "helps with LC" as a reason to get the vaccine.
That said, I really agree with everyone saying to just go in with a detailed list of symptoms with times and stuff like what you're eating/how you slept the night before/any exercise you've done recently. I had to go back and track all that stuff (Which btw SUCKS because if you're super fatigued than writing down everything seems like so much work), even though I definitely had had COVID and all my symptoms were clearly linked to that.
posted by Gygesringtone at 11:33 AM on February 20, 2022 [1 favorite]
The truth of the first part is unclear at this point, and at best, that second part needs to have a pretty important FOR SOME PEOPLE inserted in there. It's a big enough portion of folk that enough people have heard of improvement after vaccines that I'm sick of being asked if it helps, but it doesn't even seem to be most people that see that improvement. Like Vaccines are good, but after a couple of times of having people doubt that I was either vaccinated or really had Long COVID because I didn't get better after my jab, I feel like we probably shouldn't keep including "helps with LC" as a reason to get the vaccine.
That said, I really agree with everyone saying to just go in with a detailed list of symptoms with times and stuff like what you're eating/how you slept the night before/any exercise you've done recently. I had to go back and track all that stuff (Which btw SUCKS because if you're super fatigued than writing down everything seems like so much work), even though I definitely had had COVID and all my symptoms were clearly linked to that.
posted by Gygesringtone at 11:33 AM on February 20, 2022 [1 favorite]
Source for my remark about vaccines and long Covid was here. Dr. Griffen provides a link to this paper.
posted by SemiSalt at 2:28 PM on February 20, 2022 [1 favorite]
posted by SemiSalt at 2:28 PM on February 20, 2022 [1 favorite]
Response by poster: Thanks all for the responses, I'm still going through them. I want to clarify that this started before I stopped drinking completely and was a catalyst to my stopping so I don't think it's withdrawal. And also is really up and down. Somedays I'm almost normal until I realize just standing has made me very tired and some days I can't really leave bed.
I needed jumping off points/things to gather beforehand and you've all helped me immensely. I made a full history of what was happening when, what my symptoms have been and what I've tried. I'm going to start keeping a log of what I do, how it affects me and how long it takes me to recover.
posted by OnTheLastCastle at 3:51 PM on February 20, 2022 [1 favorite]
I needed jumping off points/things to gather beforehand and you've all helped me immensely. I made a full history of what was happening when, what my symptoms have been and what I've tried. I'm going to start keeping a log of what I do, how it affects me and how long it takes me to recover.
posted by OnTheLastCastle at 3:51 PM on February 20, 2022 [1 favorite]
Response by poster: If anyone was curious/feeling the same way, my doctor was fairly confident I have the after-effects of Delta and a blood test will show if I have had an infection. They're checking the other stuff too. Thanks again, everyone. I was sick for a few days months ago so it could've been that. It wasn't serious enough that I went and got tested because my wife and I were just isolated anyway.
posted by OnTheLastCastle at 7:16 AM on February 22, 2022 [2 favorites]
posted by OnTheLastCastle at 7:16 AM on February 22, 2022 [2 favorites]
This thread is closed to new comments.
posted by DarlingBri at 9:03 AM on February 19, 2022 [10 favorites]