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Is there anything I'm missing? (Covid long hauler)


busymama7
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Ugh. I know the answer.  I'm on FB groups and no one knows what to do and how long this will last.  I'm dealing with severe fatigue, daily headaches, muscle aches, heart racing with the minimum of activity/movement, dizziness and weakness/shakiness. I tested positive November 9th.  My case was pretty minor, just like 4 days of feeling pretty sick.  2 days of coughing.  I am not feeling chest pressure/pain or much breathlessness for the last few days so there is that but also things have come and gone so who knows if it will be back.  

I am taking:

Vitamin D

Vitamin C (liposomal at least 5,000mg)

Zinc (50-100 mg)

Calcium/magnesium/potassium

Mentholated B complex

Quercetin

Turmeric

I am doing nothing but resting.  I'm reading a lot or knitting etc. Today I went downstairs for a little while but mostly I'm literally in bed.  My kids haven't really done any school since the first week of November before I got sick.  I'm trying not to panic but I have no idea how to get back to school.  Well I could probably function if I took ibuprofen around the clock for the headaches and body aches. I do not want to do that.   Except if this is inflammation, maybe that would be ok?  At least for a time. I guess I'm going to do a tele heath appointment just to see if there is anything else to try but I'm not feeling hopeful. No one is really getting any help from their doctor. It's just too new and no clear treatment. No covid clinic in my city. 

 

 

 

 

 

 

 

 

 

 

 

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So, I did some reading on chronic fatigue syndrome earlier in the pandemic, and that seems like it might be helpful. Have you taken a look there? 

From what I've seen, it would NOT be a good idea to push yourself and could make recovery slower 😞 . But I also don't know whether that's true or that's just what people say -- the problem is that since people have never found biological markers for CFS, it hasn't been sufficiently studied 😞 . 

I'm so sorry you're still not feeling well. 

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36 minutes ago, matrips said:

I would recommend getting your heart looked at.  There are common issues with the heart after covid.

I think ibuprofen even for a couple months would be fine.  
 

What about taking NAC?

What is NAC? And yes I am going to call a cardiologist Monday.

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5 minutes ago, kellebelle said:

I haven’t had covid, but I have the symptoms you described because of low ferretin. Could you possibly have low iron or low ferretin? I hope you feel better soon! 

Ok that is something I haven't done yet.  Apparently it is common post covid. Thank you.  I think I have some iron I can take at least to start 

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1 minute ago, busymama7 said:

What is NAC? And yes I am going to call a cardiologist Monday.

I'm glad you are calling cardiology. 

NAC is N-acetyl cysteine. It's safe and I think it would be worth trying. Take it with vitamin C.

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Here’s a little chart of how doctors treat covid. I don’t know if anything on there will be useful to you as I don’t really know what some of the stuff is.  Like I see ivermectin on there, but I have no idea what that is. But maybe that is something that would help? I just don’t know, but here’s the chart in case it leads you somewhere: https://www.evms.edu/media/evms_public/departments/internal_medicine/Marik-Covid-Protocol-Summary.pdf

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Dr Yo!, Dr Patterson (Bruce? First name ? Maybe), and Dr Been all have put out Long-Haul info.

Yo! And Patterson the most. 

Dr Been who I most follow says he has often found a short course of steroids useful iirc.

I have a CFS type thing and it sucks — I hope you will get totally all better and soon!!!

 

 

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Just now, Pen said:

I’d suggest u get your actual vitamin D level checked  - it may be low even though you are taking it 

It is monitored every 6-12 months for the past 5 years.  I know it is over 50 but I can't remember exactly what it was last time.  

 

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3 minutes ago, Pen said:

Dr Yo!, Dr Patterson (Bruce? First name ? Maybe), and Dr Been all have put out Long-Haul info.

Yo! And Patterson the most. 

Dr Been who I most follow says he has often found a short course of steroids useful iirc.

I have a CFS type thing and it sucks — I hope you will get totally all better and soon!!!

 

 

I'm kinda on information overload.  I keep reading and watching and reading and still don't feel like I don't know what else to do 

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7 minutes ago, sbgrace said:

I'm glad you are calling cardiology. 

NAC is N-acetyl cysteine. It's safe and I think it would be worth trying. Take it with vitamin C.

Ok thanks. I have a whole bed table full of bottles. Feels kinda ridiculous but what is one more? 

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10 minutes ago, Garga said:

Here’s a little chart of how doctors treat covid. I don’t know if anything on there will be useful to you as I don’t really know what some of the stuff is.  Like I see ivermectin on there, but I have no idea what that is. But maybe that is something that would help? I just don’t know, but here’s the chart in case it leads you somewhere: https://www.evms.edu/media/evms_public/departments/internal_medicine/Marik-Covid-Protocol-Summary.pdf

Ivermectin is a dewormer commonly given to animals but I believe it’s a script item for people.  There was a controlled study done (maybe Brazil?) that looked promising but from what I remember reading, the sooner you were taking it, the less damage done to the cell walls. 

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2 minutes ago, busymama7 said:

I'm kinda on information overload.  I keep reading and watching and reading and still don't feel like I don't know what else to do 


I would probably still check D unless it’s been checked since getting sick.  Fighting Sickness uses a lot afaik.

 

If you can’t cope with processing information there are some doctors who might be available for telemedicine- but they tend to be “conservative” and I know many on here reject anything with any “conservative” aspect.

I’m dealing with some irl stuff and may not be around Wtm a lot— the physician help I am thinking of is fIndable on lists with a group called Association of American Physicians and Surgeons 

 

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1 hour ago, busymama7 said:

Ugh. I know the answer.  I'm on FB groups and no one knows what to do and how long this will last.  I'm dealing with severe fatigue, daily headaches, muscle aches, heart racing with the minimum of activity/movement, dizziness and weakness/shakiness. I tested positive November 9th.  My case was pretty minor, just like 4 days of feeling pretty sick.  2 days of coughing.  I am not feeling chest pressure/pain or much breathlessness for the last few days so there is that but also things have come and gone so who knows if it will be back.  

I am taking:

Vitamin D

Vitamin C (liposomal at least 5,000mg)

Zinc (50-100 mg)

Calcium/magnesium/potassium

Mentholated B complex

Quercetin

Turmeric

I am doing nothing but resting.  I'm reading a lot or knitting etc. Today I went downstairs for a little while but mostly I'm literally in bed.  My kids haven't really done any school since the first week of November before I got sick.  I'm trying not to panic but I have no idea how to get back to school.  Well I could probably function if I took ibuprofen around the clock for the headaches and body aches. I do not want to do that.   Except if this is inflammation, maybe that would be ok?  At least for a time. I guess I'm going to do a tele heath appointment just to see if there is anything else to try but I'm not feeling hopeful. No one is really getting any help from their doctor. It's just too new and no clear treatment. No covid clinic in my city. 

 

 

 

 

 

 

 

 

 

 

 

I have no help, but looking at the list of supplements you’re taking, you might check out Leap2BFit. It might save you some $$ on those supplements. 

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One other thought... I haven't looked into this heavily, but quercetin down-regulates the thyroid.

I don't know how problematic it really is, but I wouldn't want to take it long without researching that aspect.

 Is that one more helpful in the acute phase or are long haulers finding it still helps? 

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20 minutes ago, sbgrace said:

One other thought... I haven't looked into this heavily, but quercetin down-regulates the thyroid.

I don't know how problematic it really is, but I wouldn't want to take it long without researching that aspect.

 Is that one more helpful in the acute phase or are long haulers finding it still helps? 

See this is the kind of thing that is making me crazy!!! I am already on thyroid.  And I didn't take it(quercetin)  during acute phase because I didn't know about it.  I added it in the last week in desperation.   So many conflicting things. 

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54 minutes ago, sbgrace said:

 Is that one more helpful in the acute phase or are long haulers finding it still helps? 

 

they need to figure out if they are long haul due to still have lurking viral illness, or due to being “run down” from having been sick, or due to organ damage, or due to inflammation, bacterial infection such as bacterial pneumonia, or other factors.

if the problem is inflammation Quercitin should help (but maybe not so much as a steroid)

if the problem is still having active lurking virus Quercitin plus zinc should help  (but probably not as much as HCQ plus zinc, or Ivermectin alone)

if the problem is bacterial infection after cv I don’t think Quercitin would help much

 

there are also other herbs possible to try ... and mushrooms

 

 @BeachGal might speak to mushrooms perhaps or to possibility of IV Vitamin C, ozone therapy ... 

 

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Ozone therapy?  You may have to hunt for a doc to do it, but my kid that could not recover after meningitis still speaks of ozone therapy as a miracle cure.  My doc suggests we come in any time we are sick for a treatment.  But I know not all docs have it in office.

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Were you on these supplements prior to covid? Or were you having all these symptoms prior to the supplements? I'm asking, because that's a pretty strong list of stuff you're talking. Depending on your genetics, you could be poisoning yourself. If I took that list, I'd be SICK AS A DOG. 

So you might want to take a break from EVERYTHING on that list for a few days, drink peppermint tea with lemon, eat yogurt, eat salads, see where you're at.

Even that zinc is really high. Seriously. Are you having nausea or irritability? The calc/magnesium is fine and the C is fine. How much D are you taking? Have you ever run your genetics to know your methylation status? Have you had labs on your D to know if you even need it? Even D can make you feel crummy if you're taking too much or if you have certain methylation defects. If you have a COMT defect, you might not tolerate the quercitin and methylated Bs, which would result in headaches and all sorts of symptoms. These are not universally good, benign supplements even if they are popular right now and a good fit for some people.

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1 minute ago, PeterPan said:

Were you on these supplements prior to covid? Or were you having all these symptoms prior to the supplements? I'm asking, because that's a pretty strong list of stuff you're talking. Depending on your genetics, you could be poisoning yourself. If I took that list, I'd be SICK AS A DOG. 

So you might want to take a break from EVERYTHING on that list for a few days, drink peppermint tea with lemon, eat yogurt, eat salads, see where you're at.

Even that zinc is really high. Seriously. Are you having nausea or irritability? The calc/magnesium is fine and the C is fine. How much D are you taking? Have you ever run your genetics to know your methylation status? Have you had labs on your D to know if you even need it? Even D can make you feel crummy if you're taking too much or if you have certain methylation defects. If you have a COMT defect, you might not tolerate the quercitin and methylated Bs, which would result in headaches and all sorts of symptoms. These are not universally good, benign supplements even if they are popular right now and a good fit for some people.

Thank you for your thoughts. I was already on the mentholated B's and the vitamin D.  I have continued to take them as I was before.  My vitamin D level is monitored by blood work at least yearly.  I needed B as well (I think B12?) as per blood work.   I opted for that particular choice as both my parents and one sister have tested for MTHFR and so taking synthetics was not a good idea.   Also it was my understanding that taking B's alone is not as good as taking them all together.  I have done well on these for 3-4 years. In fact my health has greatly improved since adding them.  

I took C during the acute illness as I always do.  I changed to liposomal in desperation to try to get something to help.   

I added the zinc 100mg when I lost my taste and smell.  They came right back as soon as I did.  I went down to 50mg for a time and asked my doctor if that was too high or the 100 and he told me that it was fine to take that much.  I usually take 50 but sometimes do 100 because I am so desperate for something to work 😭

I added quercetin after realizing it was on so many recommended lists and I hadn't taken it before.  

I just added cal/pot/mag in the last few days although I took it during pregnancies without issue.  

I havent gotten worse although I also haven't gotten better.  The best two days I had last week were after switching to Liposomal C and adding turmeric.  But then I slid right back to where I was.  

It is certainly an interesting idea to stop and see what happens.  It terrifies me because I can't imagine getting any worse. But it is possible of course that one or more is not reacting well for me.  I just can't pin pin point any change either positive or negative as I have slowly added them, other than those two days I thought the C and turmeric was the answer.  

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1 minute ago, busymama7 said:

I was already on the mentholated B's and the vitamin D.  I have continued to take them as I was before. 

If you were on them well before and know they were good for you, I'd keep going. 

The Zinc if too high will give you nausea, so that's what you watch out for with that. As long as you're not having nausea from it (which will be very obvious, you may actually vomit), it's probably fine. 

The quercitin is a methyl donor, so if you have an MTHFR defect and were responding well to the methylated Bs then it's probably good voodoo. 

Well foo, it would have been nice to have a simple explanation. Rats.

How long have you sorta been over this? And it went into your lungs? Even just straight normal pneumonia for me is three months. It's astonishing how some people are completely assymptomatic and others knocked down. Did your doctor offer you any meds? Is there any research saying the hydroxychloroquine or any of the other treatments they're doing helps with some of this recovery?

Turmeric is amazing stuff. I don't know if there's any data on it for covid. I already take 4 capsules a day of a pretty strong version to keep my asthma down.

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8 minutes ago, PeterPan said:

If you were on them well before and know they were good for you, I'd keep going. 

The Zinc if too high will give you nausea, so that's what you watch out for with that. As long as you're not having nausea from it (which will be very obvious, you may actually vomit), it's probably fine. 

The quercitin is a methyl donor, so if you have an MTHFR defect and were responding well to the methylated Bs then it's probably good voodoo. 

Well foo, it would have been nice to have a simple explanation. Rats.

How long have you sorta been over this? And it went into your lungs? Even just straight normal pneumonia for me is three months. It's astonishing how some people are completely assymptomatic and others knocked down. Did your doctor offer you any meds? Is there any research saying the hydroxychloroquine or any of the other treatments they're doing helps with some of this recovery?

Turmeric is amazing stuff. I don't know if there's any data on it for covid. I already take 4 capsules a day of a pretty strong version to keep my asthma down.

Sorry, quercetin yes or no if I have MTHFR? I don't know for sure but have family history.

No nausea.

I was only sick a few days except for lingering massive fatigue.  Started with a headache nov 8-9th, felt normal 10-11th, achy 12th, cough and lost taste and smell on the 13th.  Coughed mildly only on 13-14th or so.  taste and smell back on the 16th.  I have asthma and expected it to go to my lungs but it never did.  When I say mild cough I literally mean if I didn't know I had covid I would have barely noticed it.  That shocked me because I am prone to bronchitis and pneumonia from allergies or colds anyways. 

 Fatigue gradually lessened and the first week of December wasn't so bad except for the racing heart rate if I walked around too much.  But then the headaches came back and added dizziness and so much fatigue 😭. I do not normally get many headaches so this is not at all normal for me.  Not only that they feel different.  Like my entire head is in a massive vice.  

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Oh and I have added things one at a time but haven't seen improvement.  Except those two days after adding turmeric and liposomal vitamin C at the same time.  I've continued them without having any good days though. 

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Just now, PeterPan said:

Is your mental health ok? Are you having symptoms of depression? I mean from the covid. 

Yes some. I'm trying to keep up hope but it is hard.  I cry at least once a day because I want to feel better.  I am able to do things that bring me joy like knitting, reading, reading to the kids and sometimes playing a game (even laying in bed). I don't feel like I'm severely depressed.  Just situational. 

I also have a family history of autoimmune issues.  And a mom and sister with fibromyalgia.   I was headed for a diagnosis as well about five years ago but treating my thyroid and getting my vitamin levels up (at least the D and B that my Dr tests for) as well as adding progesterone due to extremely low levels has improved my day to day.  I still very occasionally have a "flare" but a day or two if extra sleep/rest and then I'm fine.  This feels similar but so very much worse with no letting up.

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3 minutes ago, PeterPan said:

If you think the turmeric helped, you can take it up. The articles are saying these long haul symptoms are due to inflammation, and turmeric can lower inflammation. 

Is there any talk of using steroids for this?

Ok I can try that.  Some of the long haulers are using steroids but none have really said they worked. I did try a round of z pack around December 10th.  

Some say inflammation, some say histamine overdose or something.  Treatments are different.  I am adding tons of veggies to every meal as that can't hurt as well as two blended lemons a day and other fruit. 

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3 minutes ago, Ausmumof3 said:

Are you able to get time outdoors at all?  Sometimes that helps here with general feeling run down

No. I could at least sit in the backyard. I've been afraid to walk outside because of the racing heart and it makes me feel so dizzy. 

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14 minutes ago, busymama7 said:

No. I could at least sit in the backyard. I've been afraid to walk outside because of the racing heart and it makes me feel so dizzy. 

Sounds like might be best to get the cardio stuff checked out first and once you’ve ruled out anything serious you could try.  Sorry it’s feeling so difficult.  What are the online school options like if you can’t manage?  

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42 minutes ago, busymama7 said:

Yes some. I'm trying to keep up hope but it is hard.  I cry at least once a day because I want to feel better.  I am able to do things that bring me joy like knitting, reading, reading to the kids and sometimes playing a game (even laying in bed). I don't feel like I'm severely depressed.  Just situational. 

I mentioned on the boards before an analogy that I  heard from a professor of pulmonary medicine that some people with Long Covid find helpful.

Imagine that you had been in a car crash, patched up and sent home. Your body has sustained damage to multiple organs and it will take a long time to heal itself. With Long Covid you do not have scars, but you may still have multiple areas of damage - you will be feeling exhausted while your body repairs all that.

But yes, see doctors for check ups.

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As long as your kidney function is okay then there's nothing wrong with taking ibuprofen around the clock for awhile to see if it helps. Personally, I'd feel much safer doing that than throwing tons of random "natural" stuff--which as others have pointed out isn't always harmless and can in fact sometimes do quite a lot of harm--at it. Lots of people with chronic pain issues take ibuprofen daily. It's not exactly an uncommon thing to do.

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I’m so sorry you’re feeling rough. I’d definitely call the doctor tomorrow and see if you can be seen and if you need a referral to a cardiologist, get it so you can be seen. I also wouldn’t hesitate taking ibuprofen if it helps (but I’m not a doctor!). 
 

My niece (15 yo) had a mild symptom case of covid mid-Nov with similar symptoms as yours. She still has a racing heart and fatigues very easily. She isn’t bedridden, but definitely gets winded and tired too soon for her age and athleticism. They sent her to the children’s hospital for a heart test (echo? I think) and her heart looked perfectly fine. So far there has been no explanation for the racing heart (other than covid obviously). I’m not sure what the next step is for them, as that’s where it stand now. 
 

I hope you find relief soon. I’d say getting outside would be good if you can. A friend of ours who has covid wasn’t prescribed any of the medicines, but his doctor told him to walk outside as often as possible. I’m not sure if that was lung related or heart related or just overall good-for-you though (he’s had 2 open heart surgeries and is only 50yrs)

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7 hours ago, busymama7 said:

Yes some. I'm trying to keep up hope but it is hard.  I cry at least once a day because I want to feel better. 

I'm so sorry! All of this sounds awful. 😞 From an inflammation standpoint... gluten and dairy are both very inflammatory, so you could try  a couple weeks off them and see how things go. 

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7 hours ago, busymama7 said:

Yes some. I'm trying to keep up hope but it is hard.

I asked because there seems to be a pattern of the covid causing depression afterward. I'm not quite up on what the brain mechanism is, but I think it would be very appropriate to ask for it to be treated. If it's not like you to be depressed, maybe that symptom is from the damage from the covid. And is it possible the meds would also help the malaise? I don't know. 

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I’m so sorry to hear that you’re still feeling so poorly! This is just a shot in the dark, as your symptoms sound so close to mine, but maybe you have developed POTS (Postural Orthostatic Tachycardia Syndrome). Although it is more common in teens and women in their 20’s, it can definitely come on in the aftermath of a virus.

I was quite ill starting in late February of this year with some yucky virus, and although there was no testing then, I suspect it may have been Covid based upon symptoms and how long I was sick. I had major cold symptoms through Easter, and then I finally got better.

But I was left with a set of symptoms that seemed to come on suddenly at the end: dizziness/wooziness, extreme pressure/pain in my head, especially in the back of my skull, a feeling of weakness in my muscles, heavy legs, a racing heart rate, tightness in my chest, and extreme fatigue. All of this continued for weeks and was very debilitating. I was basically couch-bound for most of the day, as every time I tried to do much of anything, my legs got so shaky and I felt so dizzy that I thought I was going to fall over.

i went to my doctor a couple of times and got extensive bloodwork done, but nothing looked out of the ordinary. My doctor was stumped, and he said that if it continued, I should probably see a neurologist (we both thought MS might be possible, although not likely).

I continued to have symptoms through the summer, and the heavy legs thing got worse. I did a bunch more internet research and settled on Chronic Fatigue Syndome as a real possibility. And as I researched that, I stumbled upon POTS, which I had never heard of before, but which seemed like an even better fit. 

I used my pulse ox reader to do a poor man’s tilt table test. POTS is primarily diagnosed by a change in heartrate upon standing of 30 bpm within five minutes. I sat on the bed with my feet up, and let my heart rate settle down as slow and steady as it would get. I then stood up with my pulse ox reader still on my finger and just stood still, not moving at all, which I discovered brought my heavy legs on very quickly. And within less than a minute, my heart rate went up over 40 bpm (to over 120). It stayed there as long as I stood there, but if I moved, it slowed somewhat (but still stayed fairly high). If I stood still again, it would speed back up. The only thing that would slow it all the way back down was sitting or lying down, with my feet up off the floor, but if I did this, it would slow back down in less than a minute. I repeated this off and on for the next few days, and it was always the same.

I don’t want to say more until you have tried it (do you have a pulse ox reader?), but I could have literally written your recent posts. I can tell you what has helped me if this sounds to you like what is going on.

(((((Hugs)))))

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7 hours ago, busymama7 said:

fibromyalgia.

Were you doing things for it before that you can't do now? Massage can help fibro pain and is good for health overall. If you have money lying around, you might try getting it 1-2 X a week and see if it helps any. It would be a more passive form of what you used to do before.

Also, this is just way out there, zero clue if it would do any good, but you could see if you could get access to a steam room. https://academic.oup.com/jid/advance-article/doi/10.1093/infdis/jiaa703/5959851  So in general a steam room just feels good and is good for what ails you, good for pain, etc. But the experience, if there's enough steam, causes your body to make *heat shock proteins*. I wondered if it would help inflammation, but in this study (that I'm sorta not reading very well and may not be understanding) it's linking the *anti* heat shock proteins to damage. So then heat shock proteins (via steam room) would undo that, right? Zero clue, but if you have access to it why not, kwim? 

Our Y has a steam room, but it's closed. There are steam rooms and steam baths businesses in the US, usually in major cities. It would be something way out there to try. 

https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(20)30373-2/fulltext  Here's a study, and again I don't quite understand it, but it's talking about a situation of low symptom covid followed by guillaine barre type symptoms. So then any of that research on GB treatments might apply. I'm still not understanding what they're saying about bullous this and super antigen that. I was throwing out the idea that maybe upping heat shock proteins would reverse anti heat shock proteins, but maybe that's all wet, dunno. 

I know I wish my Y had the steam room open because it makes me feel a lot better, sigh.

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13 minutes ago, caayenne said:

POTS, which I had never heard of before, but which seemed like an even better fit. 

I used my pulse ox reader to do a poor man’s tilt table test. POTS is primarily diagnosed by a change in heartrate upon standing of 30 bpm within five minutes. 

So just because I assume op will ask and I'm curious, what was your treatment? Or you still have the symptoms but you have an explanation?

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19 minutes ago, caayenne said:

I’m so sorry to hear that you’re still feeling so poorly! This is just a shot in the dark, as your symptoms sound so close to mine, but maybe you have developed POTS (Postural Orthostatic Tachycardia Syndrome). Although it is more common in teens and women in their 20’s, it can definitely come on in the aftermath of a virus.

I was quite ill starting in late February of this year with some yucky virus, and although there was no testing then, I suspect it may have been Covid based upon symptoms and how long I was sick. I had major cold symptoms through Easter, and then I finally got better.

But I was left with a set of symptoms that seemed to come on suddenly at the end: dizziness/wooziness, extreme pressure/pain in my head, especially in the back of my skull, a feeling of weakness in my muscles, heavy legs, a racing heart rate, tightness in my chest, and extreme fatigue. All of this continued for weeks and was very debilitating. I was basically couch-bound for most of the day, as every time I tried to do much of anything, my legs got so shaky and I felt so dizzy that I thought I was going to fall over.

i went to my doctor a couple of times and got extensive bloodwork done, but nothing looked out of the ordinary. My doctor was stumped, and he said that if it continued, I should probably see a neurologist (we both thought MS might be possible, although not likely).

I continued to have symptoms through the summer, and the heavy legs thing got worse. I did a bunch more internet research and settled on Chronic Fatigue Syndome as a real possibility. And as I researched that, I stumbled upon POTS, which I had never heard of before, but which seemed like an even better fit. 

I used my pulse ox reader to do a poor man’s tilt table test. POTS is primarily diagnosed by a change in heartrate upon standing of 30 bpm within five minutes. I sat on the bed with my feet up, and let my heart rate settle down as slow and steady as it would get. I then stood up with my pulse ox reader still on my finger and just stood still, not moving at all, which I discovered brought my heavy legs on very quickly. And within less than a minute, my heart rate went up over 40 bpm (to over 120). It stayed there as long as I stood there, but if I moved, it slowed somewhat (but still stayed fairly high). If I stood still again, it would speed back up. The only thing that would slow it all the way back down was sitting or lying down, with my feet up off the floor, but if I did this, it would slow back down in less than a minute. I repeated this off and on for the next few days, and it was always the same.

I don’t want to say more until you have tried it (do you have a pulse ox reader?), but I could have literally written your recent posts. I can tell you what has helped me if this sounds to you like what is going on.

(((((Hugs)))))

I have stumbled on this diagnosis as several on the support groups have gotten it.  I do have a pulse ox and will try this just to see what my readings are.  I knew about the tilt test but didn't think about trying it myself. Do you lay flat with your legs raised? 

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4 minutes ago, PeterPan said:

So just because I assume op will ask and I'm curious, what was your treatment? Or you still have the symptoms but you have an explanation?

I have a tentative diagnosis and am somewhat better after making a lot of lifestyle changes. I just want busymama to tell me what she thinks before I write another novel! 😊But I will share what has worked for me here in a bit. 

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Just now, busymama7 said:

I have stumbled on this diagnosis as several on the support groups have gotten it.  I do have a pulse ox and will try this just to see what my readings are.  I knew about the tilt test but didn't think about trying it myself. Do you lay flat with your legs raised? 

The best way I have found is to just sit on the bed with my legs curled up near me. Just don’t let them hang off the bed, because that seems to raise the heart rate somewhat. And just try to stay still and breathe regularly.

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11 minutes ago, PeterPan said:

Were you doing things for it before that you can't do now? Massage can help fibro pain and is good for health overall. If you have money lying around, you might try getting it 1-2 X a week and see if it helps any. It would be a more passive form of what you used to do before.

Also, this is just way out there, zero clue if it would do any good, but you could see if you could get access to a steam room. https://academic.oup.com/jid/advance-article/doi/10.1093/infdis/jiaa703/5959851  So in general a steam room just feels good and is good for what ails you, good for pain, etc. But the experience, if there's enough steam, causes your body to make *heat shock proteins*. I wondered if it would help inflammation, but in this study (that I'm sorta not reading very well and may not be understanding) it's linking the *anti* heat shock proteins to damage. So then heat shock proteins (via steam room) would undo that, right? Zero clue, but if you have access to it why not, kwim? 

Our Y has a steam room, but it's closed. There are steam rooms and steam baths businesses in the US, usually in major cities. It would be something way out there to try. 

https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(20)30373-2/fulltext  Here's a study, and again I don't quite understand it, but it's talking about a situation of low symptom covid followed by guillaine barre type symptoms. So then any of that research on GB treatments might apply. I'm still not understanding what they're saying about bullous this and super antigen that. I was throwing out the idea that maybe upping heat shock proteins would reverse anti heat shock proteins, but maybe that's all wet, dunno. 

I know I wish my Y had the steam room open because it makes me feel a lot better, sigh.

Treating my thyroid and vitamins as per blood work had pretty much eliminated any symptoms so I was never sure if I actually had it. No formal diagnosis just two doctors saying it sounded suspicious but the second is the one treating my thyroid etc and he was sure it would go away with proper treatment and it has. 

My husband has been doing a lot of massage for me because it really makes a difference.  I can be so achy and then even light massage in one area will relieve it everywhere but only while the massage is going on.   We just discovered this by accident a couple days ago. 

Also I had been eating well and had lost weight up until the lockdown in March when I just stopped caring all that much. The better food and no sugar etc had really helped me feel amazing.  Just in the last two days we have recommitted to fixing my eating back to what I was doing 12-18 months ago because if nothing else it won't hurt. Also I had lost 35-40 lbs but have put back on 15 so I need to fix this asap.  

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16 minutes ago, busymama7 said:

Treating my thyroid and vitamins as per blood work had pretty much eliminated any symptoms so I was never sure if I actually had it. No formal diagnosis just two doctors saying it sounded suspicious but the second is the one treating my thyroid etc and he was sure it would go away with proper treatment and it has. 

My husband has been doing a lot of massage for me because it really makes a difference.  I can be so achy and then even light massage in one area will relieve it everywhere but only while the massage is going on.   We just discovered this by accident a couple days ago. 

Also I had been eating well and had lost weight up until the lockdown in March when I just stopped caring all that much. The better food and no sugar etc had really helped me feel amazing.  Just in the last two days we have recommitted to fixing my eating back to what I was doing 12-18 months ago because if nothing else it won't hurt. Also I had lost 35-40 lbs but have put back on 15 so I need to fix this asap.  

Yes! My husband’s massages are sometimes the only thing that gets me through the day. I often feel like my muscles are literally all knotted up, especially in my neck, shoulders, and back. Anything he massages (or even lightly touches), feels better as long as he is doing it. I sometimes want to cry if he doesn’t have time to do it, because the difference is that stark.

Also, yes, dietary changes and vitamins are part of what have helped me feel better.

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1 hour ago, kand said:

I thought the POTS suggestion sounded like a strong possibility, and a web search turned up a ton of stuff on post-Covid POTS. You don’t happen to be near Johns Hopkins, do you? I see they have a dedicated Post Covid POTS clinic. This was a good article about the syndrome:

https://www.theatlantic.com/health/archive/2020/09/covid-19-heart-pots-myocarditis/616021/

That article mentions a recumbent bike. You can buy a stationary recumbent bike on amazon. I have no clue if it's what op needs, just saying it's out there. 

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I have had fibromyalgia for 30 plus years.  Massage is torture for me.  As in I am doing Lamaze breathing with the lightest touch that the massage therapist can possibly do.  And I'm in pain for days afterwards. 

I replied on another thread of  yours, but curcumin has been very helpful for me.  So has Quercetin.  Besides taking both individually, I also take Thorne AR Encaps which includes them as well as other antiflammatories (I'm pretty sure that the "AR" refers to arthritis so it's designed to work on inflammation.)

I strongly agree with the advice to contact a cardiologist and to have a cardiac work-up.  That really needs to be ruled out before looking at auto-immune (or in the case of chronic fatigue/fibromyalgia - it is now categorized as a central nervous system problem). 

IF you have been cleared by a cardiologist, and do have long term chronic fatigue, I will counsel you to get some very light exercise and movement.  I say this because I have gone over and over again into semi-invalid territory and it is extremely hard to counteract muscle atrophy after that.  It's a vicious circle that is extremely hard to break. 

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