Anyone using wearable devices to track and manage long Covid?

Posted by ericy210 @ericy210, Jan 20 8:28pm

I had a neuro appointment at Northwestern U this week. Besides logging my symptoms every day, they can now link to Fitbit, Apple Watch, etc.
Some articles quote people saying it gave early warning signs or taught them to modify behaviors .
I’ve only used a Fitbit in the past to track jogging distance.
Dos anyone have experience with using a wearable device to help manage long Covid? Thanks- I’m just starting to research.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

I had considered this, but who would I contact with the data? Certainly not my doctor (PCP) he has no interest in it. After 9 months, I'm certainof the following:
1 – The GI issues are real, I leave evidence in the porcelain throne every day and the cramping pains remind me continuously. I take VSL#3 (Over the counter probiotic) hard to find but it has tamed the terrorist in my gut somewhat and I eat nothing after 4:00PM. Ask your pharmacist about the probiotic as it has to be kept refrigerated.

2 – I think my joint pain is inflammation of the nerves. Both my hips had severe pain that after 7 months turned to sciatica in both legs. It only flared up at night so I'm classifying this one as nerve damage. I sleep in a loose fitting back brace to keep light pressure on the nerves and it allows me to sleep a little longer at night and moderate the nerve pain.

3 Covid Tongue has been with me for all nine months, but when I wake up 2-4 times a night with the other pains, a mouthwash or toothpaste for dry-mouth helps.
4 – The headache, brainfog, numbness in my right arm from shoulder to finger tip and the loss of strength in my right arm are probably nerves too. Nothing seems to help them. Certainly not going to see my PCP.

So what would I track? pulse or heartrate? I'm so pissed with the medical industry's lack of concern, I'm sure that's the cause and the insurance industry is not going to let them become emphatic.

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@lbyrd02

I had considered this, but who would I contact with the data? Certainly not my doctor (PCP) he has no interest in it. After 9 months, I'm certainof the following:
1 – The GI issues are real, I leave evidence in the porcelain throne every day and the cramping pains remind me continuously. I take VSL#3 (Over the counter probiotic) hard to find but it has tamed the terrorist in my gut somewhat and I eat nothing after 4:00PM. Ask your pharmacist about the probiotic as it has to be kept refrigerated.

2 – I think my joint pain is inflammation of the nerves. Both my hips had severe pain that after 7 months turned to sciatica in both legs. It only flared up at night so I'm classifying this one as nerve damage. I sleep in a loose fitting back brace to keep light pressure on the nerves and it allows me to sleep a little longer at night and moderate the nerve pain.

3 Covid Tongue has been with me for all nine months, but when I wake up 2-4 times a night with the other pains, a mouthwash or toothpaste for dry-mouth helps.
4 – The headache, brainfog, numbness in my right arm from shoulder to finger tip and the loss of strength in my right arm are probably nerves too. Nothing seems to help them. Certainly not going to see my PCP.

So what would I track? pulse or heartrate? I'm so pissed with the medical industry's lack of concern, I'm sure that's the cause and the insurance industry is not going to let them become emphatic.

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My husband and I are taking part in the NIH long COVID study, RECOVER. Neither of us has had COVID yet. They did a battery of blood and other tests at the get go and we will be monitored for four years with follow up tests and surveys. For some people in the study, depending on your current status, you receive wearable devices to monitor symptoms. I imagine if/when one or both of us gets COVID, they will be all over us monitoring everything that happens from the point of diagnosis onward. You might want to see if they are still recruiting participants. There are other long COVID studies going on as well through Johns Hopkins and other institutions that may use similar devices.

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@kirstenlheld

My husband and I are taking part in the NIH long COVID study, RECOVER. Neither of us has had COVID yet. They did a battery of blood and other tests at the get go and we will be monitored for four years with follow up tests and surveys. For some people in the study, depending on your current status, you receive wearable devices to monitor symptoms. I imagine if/when one or both of us gets COVID, they will be all over us monitoring everything that happens from the point of diagnosis onward. You might want to see if they are still recruiting participants. There are other long COVID studies going on as well through Johns Hopkins and other institutions that may use similar devices.

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thanks for the info but I've been rejected by NIH, Johns Hopkins, Yale,
….. Apparently they don't want people who have had and continue to have
long covid. If you are over 6 weeks into long Covid – Tough Luck, If you
don't live in a close proximity – Tough Luck, If you're old, in severe pain
go to the emergency room as your doctor doesn't care.
I worked in DC during the mid 80's about 3 miles from the NIH Headquarters
in Gaithersburg MD so my Go To research entity is the NIH, My right hip was
replaced by a John Hopkins orthopedic in 1986. (Its the one that hurts the
most right now with long Covid) Did major hospital expansion projects for
Yale and UConn and reached out to all for studies, Long Covid Programs and
simple specialist and got nothing but rejections.

I'm assuming you live in the greater DC area and the baseline test you are
getting should have been given to all several years ago when the pandemic
first broke. Now they need to recognize the disease, provide care to
mitigate the symptoms, warn the public on the side affects of the vaccines
and actively treat it (Long Covid). They know what blood test to take,
scans to perform and how to treat it – they might not have the cure but to
ignore so many as they are doing now is unconscionable.

REPLY
@lbyrd02

thanks for the info but I've been rejected by NIH, Johns Hopkins, Yale,
….. Apparently they don't want people who have had and continue to have
long covid. If you are over 6 weeks into long Covid – Tough Luck, If you
don't live in a close proximity – Tough Luck, If you're old, in severe pain
go to the emergency room as your doctor doesn't care.
I worked in DC during the mid 80's about 3 miles from the NIH Headquarters
in Gaithersburg MD so my Go To research entity is the NIH, My right hip was
replaced by a John Hopkins orthopedic in 1986. (Its the one that hurts the
most right now with long Covid) Did major hospital expansion projects for
Yale and UConn and reached out to all for studies, Long Covid Programs and
simple specialist and got nothing but rejections.

I'm assuming you live in the greater DC area and the baseline test you are
getting should have been given to all several years ago when the pandemic
first broke. Now they need to recognize the disease, provide care to
mitigate the symptoms, warn the public on the side affects of the vaccines
and actively treat it (Long Covid). They know what blood test to take,
scans to perform and how to treat it – they might not have the cure but to
ignore so many as they are doing now is unconscionable.

Jump to this post

I am so sorry to hear all this but not surprised. The way we have handled or really failed to handle this whole situation is close to criminal as far as I'm concerned. From day one, I was even more scared about getting long COVID than dying outright and couldn't even get my own family to agree on how to navigate the pandemic, and I am a public health expert, so, dammit!!!! I knew what I was talking about. To say I am heartsick at this point is the understatement of the century. I hope that by participating in this study, we can contribute in some way to helping people like you who already have long COVID.

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I just got an Oura ring. It gives a TON of data. (My husband has one). I became interested in tracking because I had an overnight oximetry at Mayo which showed crazy variations in heart rate and oxygen levels which I guess is common in post-Covid. I’ll report back. It comes in a few days.

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@kirstenlheld

I am so sorry to hear all this but not surprised. The way we have handled or really failed to handle this whole situation is close to criminal as far as I'm concerned. From day one, I was even more scared about getting long COVID than dying outright and couldn't even get my own family to agree on how to navigate the pandemic, and I am a public health expert, so, dammit!!!! I knew what I was talking about. To say I am heartsick at this point is the understatement of the century. I hope that by participating in this study, we can contribute in some way to helping people like you who already have long COVID.

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Thanks Kirsten, I'm a senior manager in the EPC industry (Engineering, Procurement & Construction) and my assessment is similar to yours – Criminal.
We are 3 years into the pandemic and we (US Citizens) can't simply get a diagnosis and treatment freely without someone trying to deny it.
With estimates of 45% of all Covid survivors experiencing some form of Long Covid we are talking 100s of millions of potentially affected people in the US and as it continues (Uncontrol of the virus) it will only increase as have the deaths. I know we rushed the vacines out, have not yet actually approved them (FDA) and I'm certain the government has held them harmless from legal recourse and the bill to treat the potential Long Covid patients could dwarf the money spent on the vaccines. We are looking at $Trillions to treat all the current and future Long Covid patients. While it might cost $500 for 3 vaccines and two boosters – to treat someone with serious organ damage from long covid the bill could easily be 100X or $50,000. We are talking 10s of $Trillions.
Clearly someone has done the Risk Analysis and have decided to ignore the problem.

REPLY
@lbyrd02

I had considered this, but who would I contact with the data? Certainly not my doctor (PCP) he has no interest in it. After 9 months, I'm certainof the following:
1 – The GI issues are real, I leave evidence in the porcelain throne every day and the cramping pains remind me continuously. I take VSL#3 (Over the counter probiotic) hard to find but it has tamed the terrorist in my gut somewhat and I eat nothing after 4:00PM. Ask your pharmacist about the probiotic as it has to be kept refrigerated.

2 – I think my joint pain is inflammation of the nerves. Both my hips had severe pain that after 7 months turned to sciatica in both legs. It only flared up at night so I'm classifying this one as nerve damage. I sleep in a loose fitting back brace to keep light pressure on the nerves and it allows me to sleep a little longer at night and moderate the nerve pain.

3 Covid Tongue has been with me for all nine months, but when I wake up 2-4 times a night with the other pains, a mouthwash or toothpaste for dry-mouth helps.
4 – The headache, brainfog, numbness in my right arm from shoulder to finger tip and the loss of strength in my right arm are probably nerves too. Nothing seems to help them. Certainly not going to see my PCP.

So what would I track? pulse or heartrate? I'm so pissed with the medical industry's lack of concern, I'm sure that's the cause and the insurance industry is not going to let them become emphatic.

Jump to this post

You body sounds like it has a lot of inflammation. Have you ever tried a gut/liver cleanse to see if that calms your symptoms? Unknown to me when I did this, it worked. Crazy but a very strict high quality animal based diet for 6 weeks (like the one on Heart and Soil) did the trick. Very little to no carbs, no alcohol or smoking for that time period. You HAVE to stick to the plan, no cheating during this period to reset gut and flush of toxins in liver. Honestly in just 1.5 weeks my body had a huge transformation (along with hundreds others in the group that followed to a T) and I lost so much water weight and overall bloat. GI issues/pains totally gone. Gas totally gone. Bloat totally gone. Brain fog gone. Energy spiked beyond belief. Heart flutters started to subside. Mood and libido improved. Sugar levels stabilized – no more crashes and cravings. Hormones stabilized – cycle & skin improved. Tingles/numbness/weakness improved and after a year adding back in some carbs is dramatically better. Blood work is stabilized and iron/ferritin improving. Colon/endo normal/healthy and signs of healing. After 10 years of Synthroid, may no longer need thyroid drugs. Now I know what veg/fruit my body likes best and can even inteminate fast when I couldn't before. Honestly I'm in shock the results as something so simple but now I see the science and feel enormously better than I have since post P shots. I was a skeptic but desperate for anything and it worked for me to heal from post v issues along with some others. Might be something to look into since it sounds like your inflamed/having autoimmune responses, too. Gook luck!

REPLY
@healthnut77

You body sounds like it has a lot of inflammation. Have you ever tried a gut/liver cleanse to see if that calms your symptoms? Unknown to me when I did this, it worked. Crazy but a very strict high quality animal based diet for 6 weeks (like the one on Heart and Soil) did the trick. Very little to no carbs, no alcohol or smoking for that time period. You HAVE to stick to the plan, no cheating during this period to reset gut and flush of toxins in liver. Honestly in just 1.5 weeks my body had a huge transformation (along with hundreds others in the group that followed to a T) and I lost so much water weight and overall bloat. GI issues/pains totally gone. Gas totally gone. Bloat totally gone. Brain fog gone. Energy spiked beyond belief. Heart flutters started to subside. Mood and libido improved. Sugar levels stabilized – no more crashes and cravings. Hormones stabilized – cycle & skin improved. Tingles/numbness/weakness improved and after a year adding back in some carbs is dramatically better. Blood work is stabilized and iron/ferritin improving. Colon/endo normal/healthy and signs of healing. After 10 years of Synthroid, may no longer need thyroid drugs. Now I know what veg/fruit my body likes best and can even inteminate fast when I couldn't before. Honestly I'm in shock the results as something so simple but now I see the science and feel enormously better than I have since post P shots. I was a skeptic but desperate for anything and it worked for me to heal from post v issues along with some others. Might be something to look into since it sounds like your inflamed/having autoimmune responses, too. Gook luck!

Jump to this post

I agree with you, the GI track is a big part of Long Covid. I did a Gut Dump getting rid of all bacteria in it and starting over with new bacteria. We chose VSL#3 an over-the-counter probiotic and got significant improvements though not 100% resolution – I still have gut problems but I'm not tethered to the porcelain throne 24 – 7. The second inflation problems appear to be nerves. Hips, right side of my head, feet and my right arm and hand. All seem to be located at old orthopedic injuries except for the right arm-hand. It appears that either Covid or post covid vaccine immune system is attacking these areas. and resulting in debilitating nerve pain. I go from severe joint pain to sciatica. Thanks for the suggestion. My current diet is not eating anything after 4:00 PM so not to disturb the terrorist in my gut.

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I tried a bunch of probiotics and other diet changes but nothing helped like the strict animal based-diet I mentioned. Have you had your blood work done? Like CBC, Iron w/differential, Ferritin, Platlets, etc? Also parasites can cause similar issues in the body you mentioned.. Might be worth a look into that too.

I have suspected nerve damage in arms and legs – pain, tingles especially at night, numbness, sciatic pain (I didn't even know what that was), and pain after sitting. I didn't know what it was for a long time (over a year) and never originally connected the dots to covid until the last few months when stumbling across a few things online and seeing a hematologist and my PCP started seeing similar issues arise from other patients post covid v. I had already healed myself thru diet and then started taking vitamin b complex, vit d, omega, liver/bone marrow iron supplement, and the diet I mentioned dramatically changed things for me. And after a year now, I still have no to minimal flares with no GI issues anymore and I used to be so bloated I couldn't wear pants and I though my stomach was ripping apart from the inside. I just recently started adding back a probiotic but mainly find I find I don't need it anymore. It could be worth a shot to see if it helps? Another site that found helpful that you might for cleansing and resetting the gut/liver was from a dietitian -eatburnsleep. Either way, hope you can find some healing soon!

REPLY
@healthnut77

You body sounds like it has a lot of inflammation. Have you ever tried a gut/liver cleanse to see if that calms your symptoms? Unknown to me when I did this, it worked. Crazy but a very strict high quality animal based diet for 6 weeks (like the one on Heart and Soil) did the trick. Very little to no carbs, no alcohol or smoking for that time period. You HAVE to stick to the plan, no cheating during this period to reset gut and flush of toxins in liver. Honestly in just 1.5 weeks my body had a huge transformation (along with hundreds others in the group that followed to a T) and I lost so much water weight and overall bloat. GI issues/pains totally gone. Gas totally gone. Bloat totally gone. Brain fog gone. Energy spiked beyond belief. Heart flutters started to subside. Mood and libido improved. Sugar levels stabilized – no more crashes and cravings. Hormones stabilized – cycle & skin improved. Tingles/numbness/weakness improved and after a year adding back in some carbs is dramatically better. Blood work is stabilized and iron/ferritin improving. Colon/endo normal/healthy and signs of healing. After 10 years of Synthroid, may no longer need thyroid drugs. Now I know what veg/fruit my body likes best and can even inteminate fast when I couldn't before. Honestly I'm in shock the results as something so simple but now I see the science and feel enormously better than I have since post P shots. I was a skeptic but desperate for anything and it worked for me to heal from post v issues along with some others. Might be something to look into since it sounds like your inflamed/having autoimmune responses, too. Gook luck!

Jump to this post

I see supplements but not a particular diet plan on Heart and Soil. I’m on a 45/45/10 protein, fat, carb regimen with a ton of immune support supplements and 2 meals a day. Trying to reverse diabetes. Still fatigue is my biggest issue. I am trying more bone broth and electrolytes to keep hydrated which helps.

What is your specific diet apart from good meats?

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