1. < Post-COVID Recovery & COVID-19

what is your most disabling symptom and what did you do to treat it?

Posted by dmlindeman @dmlindeman, Feb 29 6:14pm

Would like to ask a question to the entire group. What do you feel has been your worst/disabling symptom and what did you do to effectively treat it? Thanks. Diane Lindeman

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

dloos | @dloos | Mar 4 9:30am

My symptoms are sensory mostly. Muffled hearing, with tinnitus and hyperacusis, blurry vision, dizzy. Also digestive issues thrown in for good measure! I have lost thirty pounds.
I wish I could tell you what helped. I've had All sorts of treatments and therapies over two years. My symptoms are progressive, so I’m mostly homebound now. I don’t drive or go out unless to medical appointments.
I keep waiting for the treatment that HELPS.

REPLY
lovesgreys | @lovesgreys | Mar 4 10:19am
In reply to @lovesgreys "Mine is mostly fatigue & brain fog. As we all know, the fatigue is debilitating. After..." + (show)
@lovesgreys

Mine is mostly fatigue & brain fog. As we all know, the fatigue is debilitating. After 17 months of LC, I can go out some. The problem is that I can never make plans because I don’t know from day to day how I’m going to feel. If I’m out, I never know when the overwhelming exhaustion is going to hit. If I let that go for any length of time, it will take me days to recover. In the beginning of this, I had driven myself somewhere. The attack hit so fast. One minute I was fine, and the next, I was overcome. I was in a situation where I couldn’t lie down to stop it, so it got worse by the second. Exhaustion, dizziness, out of breath. I couldn’t drive myself home, and by the time someone gave me a ride, I was in such bad shape that I was non-functional for three days. I got stuck in less dramatic ways a couple more times. Now I stay in complete control. I mostly no longer drive so I don’t get stuck. I have friends that have pushed me to go to lunch, come to their homes instead of them coming to mine, etc. I only put myself in situations where I can be brought home right away if I start feeling bad so I can rest, and keep it from getting out of control. Those of us with LC have so little control over what’s happening to us. I need to feel like I have some control.

I can’t fly because I can’t sit up long enough to make it through an airport. I’ve missed an overseas trip, and two more trips - all to see family, including the 100th birthday celebration of a dear relative. I can’t visit my son.

I’m a pet communicator, but can no longer do that because of my brain fog.

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Sorry. I missed the question about what we’ve done to treat. I’m seeing an intergrative doctor (MD) & a nutritionist. I’m on supplements & a diet filled with lots of bright colored veggies. Not a vegan diet. It just includes these things. My doctor is treating me with energy work. I’ve improved quite a bit, but have a long way to go. I had felt horrible all the time, and could be upright for an hour tops, often not that long. Now I mostly feel normal as long as I don’t do too much. I can usually sit up at the table & eat, or sit at my computer for a couple of hours. This past week I sat at my computer for a good bit of the day. I’ve gone out to stores. Sometimes I only last an hour, but I’ve also lasted for a good bit longer than that. So I’m able to do more, but the biggest thing is going from feeling awful all the time to feeling normal as long as I don’t push myself. That’s been huge for me. I do still have crashes.

REPLY
florabel | @florabel | Mar 4 11:51am
In reply to @lovesgreys "Mine is mostly fatigue & brain fog. As we all know, the fatigue is debilitating. After..." + (show)
@lovesgreys

Mine is mostly fatigue & brain fog. As we all know, the fatigue is debilitating. After 17 months of LC, I can go out some. The problem is that I can never make plans because I don’t know from day to day how I’m going to feel. If I’m out, I never know when the overwhelming exhaustion is going to hit. If I let that go for any length of time, it will take me days to recover. In the beginning of this, I had driven myself somewhere. The attack hit so fast. One minute I was fine, and the next, I was overcome. I was in a situation where I couldn’t lie down to stop it, so it got worse by the second. Exhaustion, dizziness, out of breath. I couldn’t drive myself home, and by the time someone gave me a ride, I was in such bad shape that I was non-functional for three days. I got stuck in less dramatic ways a couple more times. Now I stay in complete control. I mostly no longer drive so I don’t get stuck. I have friends that have pushed me to go to lunch, come to their homes instead of them coming to mine, etc. I only put myself in situations where I can be brought home right away if I start feeling bad so I can rest, and keep it from getting out of control. Those of us with LC have so little control over what’s happening to us. I need to feel like I have some control.

I can’t fly because I can’t sit up long enough to make it through an airport. I’ve missed an overseas trip, and two more trips - all to see family, including the 100th birthday celebration of a dear relative. I can’t visit my son.

I’m a pet communicator, but can no longer do that because of my brain fog.

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@lovesgreys is it just physical exertion that really makes your fatigue out of control or being on your computer, tv or cellphone as well. I’m in my 7thweek of LC, started Jan. 15, 2024. Just realizing I have a long long way to go. Did your get more symptoms aside from fatigue, dizziness and out of breath. That’s what I’m worried about, to acquire more symptoms. I feel the same tiredness and rebound. What meds are you taking, any exercises, if any. I appreciate any pointers you can share with me. Thank you, Flors

REPLY
1 reply
lovesgreys | @lovesgreys | Mar 4 2:17pm
In reply to @florabel "@lovesgreys is it just physical exertion that really makes your fatigue out of control or being..." + (show)
@florabel

@lovesgreys is it just physical exertion that really makes your fatigue out of control or being on your computer, tv or cellphone as well. I’m in my 7thweek of LC, started Jan. 15, 2024. Just realizing I have a long long way to go. Did your get more symptoms aside from fatigue, dizziness and out of breath. That’s what I’m worried about, to acquire more symptoms. I feel the same tiredness and rebound. What meds are you taking, any exercises, if any. I appreciate any pointers you can share with me. Thank you, Flors

Jump to this post

Yes. It’s physical exertion. I can see that I didn’t make myself clear. I can be on my cell phone, iPad, and watch TV while I’m resting, and those are fine. I have an oversized couch that I spend most of my time on. Because it’s so big, I can sort of semi-recline with my head back. For me that is a resting position that keeps my exhaustion at bay. I have to sit at my desk to use my computer. It’s the sitting up that’s difficult & the amount of time I can do that is limited. Same with standing. I can stand & walk around. The amount of time depends on the moment.

I haven’t gotten any other symptoms.

I don’t take any medication, just supplements. The ones I take have been recommended to me by my nutritionist & intergrative doctor. They’re working together.

I’m not able to exercise much. I walk some, and ride my elliptical machine. Both of my doctors - my regular GP and my intergrative doctor - said not to exercise too much. It can do more harm than good.

The best advice I can give you to deal with these symptoms is to listen to your body. If you push yourself, you’ll feel worse, and it will take you longer to recover - not overall, but from that particular moment. For me, I can rest & stop my exhaustion, or at least keep it from getting worse, or I can push myself, and not be able to function, sometimes for days.

These have been the two hardest things to overcome: The feeling of acting like a wimp when I’m normally an active & productive person, and having other people tell me that I should just go, or do, and treat me like I’m being ridiculous. I had to get past these things. I really have no choice other than to listen to my body, and do what it tells me to do.

REPLY
1 reply
florabel | @florabel | Mar 4 2:38pm
In reply to @lovesgreys "Yes. It’s physical exertion. I can see that I didn’t make myself clear. I can be..." + (show)
@lovesgreys

Yes. It’s physical exertion. I can see that I didn’t make myself clear. I can be on my cell phone, iPad, and watch TV while I’m resting, and those are fine. I have an oversized couch that I spend most of my time on. Because it’s so big, I can sort of semi-recline with my head back. For me that is a resting position that keeps my exhaustion at bay. I have to sit at my desk to use my computer. It’s the sitting up that’s difficult & the amount of time I can do that is limited. Same with standing. I can stand & walk around. The amount of time depends on the moment.

I haven’t gotten any other symptoms.

I don’t take any medication, just supplements. The ones I take have been recommended to me by my nutritionist & intergrative doctor. They’re working together.

I’m not able to exercise much. I walk some, and ride my elliptical machine. Both of my doctors - my regular GP and my intergrative doctor - said not to exercise too much. It can do more harm than good.

The best advice I can give you to deal with these symptoms is to listen to your body. If you push yourself, you’ll feel worse, and it will take you longer to recover - not overall, but from that particular moment. For me, I can rest & stop my exhaustion, or at least keep it from getting worse, or I can push myself, and not be able to function, sometimes for days.

These have been the two hardest things to overcome: The feeling of acting like a wimp when I’m normally an active & productive person, and having other people tell me that I should just go, or do, and treat me like I’m being ridiculous. I had to get past these things. I really have no choice other than to listen to my body, and do what it tells me to do.

Jump to this post

Thank you for your reply. I am taking meds for acid reflux, high bp and beta blocker. I’m scared to see an integrative/functional doctor in case what they give me will clash with the meds I’m taking right now. I have internal tremors and palpitations. I guess I will have a long way to go before I can reach your state right now where there are good days and able to control the bad days. I’m just impatient right now since I’m also an active person before this. Sometimes, I’m losing hope that I’ll ever be better after reading some of the comments in this forum. Thank you again and any suggestions from your experience will be very much appreciated.
Flora

REPLY
lovesgreys | @lovesgreys | Mar 4 3:13pm

My intergrative doctor isn’t giving me any meds. Just a thought, but it might be worth having a consultation with one if that’s available to you. My regular doctor is wonderful, understanding, and caring, but he doesn’t have anything to offer me. He sent me to another doctor, and the only hope he could give me was that he’s seen this go away in some people. The thought of being like this for the rest of my life was devastating, as we all know. The intergrative doctor has given me hope that I can get past this. As a side note, my regular doctor is pleased that I’m getting this treatment.

As far as the supplements, my nutritionist & doctor have a list of my medications.

REPLY
1 reply
florabel | @florabel | Mar 5 10:23am
In reply to @searcher1 "My most disabling symptom has been fatigue / muscle aches since 9/22. My recent main symptom..." + (show)
@searcher1

My most disabling symptom has been fatigue / muscle aches since 9/22. My recent main symptom has been problems breathing and an irregular pulse (as per blood pressure monitor).

I recently started taking L-Arginine (3 grams per day) to increase nitric oxide to help the blood vessels and immune system. Should be taken with vitamin C. This week I added L-Citrulline (6 grams per day) that turns into L-Arginine in our bodies. L-Arginine, vitamin C, and L-Citrulline should be taken together. It has almost eliminated my irregular pulse and my breathing is much better.

I also added this week Carnitine that turns our fat into energy. ( I have sufficient fat to donate. :)) It is supposed to help reduce fatigue for people who have MS or are on chemo.

Below is an excerpt from the National Library of Medicine on a study, I believe in Italy, on L-Arginine, vitamin C and long covid symptoms. Note that they had improvement in all symptoms:

Our survey indicates that the supplementation with L-Arginine + Vitamin C has beneficial effects in Long-COVID
Following a 30-day treatment with L-Arginine + Vitamin C, the survey revealed that patients in this treatment group had significantly lower scores (which means less severe long-COVID symptoms) compared to the other group (L-Arginine + Vitamin C: 8.15 ± 1.3 vs Alternative treatment: 13.9 ± 2.3, p < 0.001); remarkably, the treatment with L-Arginine + Vitamin C had favorable effects on all the symptoms explored by the survey
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9295384/

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Were those given to you by your MD? Glad you are feeling much better.
Thank you for your reply.

REPLY
2 replies
kristiseay | @kristiseay | Mar 5 10:27am

I was diagnosed with Long COVID 8/23. It is hard to say what has been the most debilitating since things are always changing. I have 4 consistent issues.
1) infections/sores/inflammation /pain in both eyes with significant vision loss. My right eye is not eve correctable.
2) cognitive issues. Significant Memory loss and brain fog.
3) Joint/ligament/muscle/soft tissue pain. This can be significant to the point of getting dressed and daily activities are very difficult and need help. Currently it is my left shoulder to hand along with left hip and IT band area.
4) stomach issues. Nausea, throwing up, heartburn, indigestion, severe abdominal spasms.

These are my top 4 issues, but since I have Lupus, Fibromyalgia and severe migraines it just makes everything more complicated and difficult to treat it all!

REPLY
florabel | @florabel | Mar 5 10:28am
In reply to @lovesgreys "My intergrative doctor isn’t giving me any meds. Just a thought, but it might be worth..." + (show)
@lovesgreys

My intergrative doctor isn’t giving me any meds. Just a thought, but it might be worth having a consultation with one if that’s available to you. My regular doctor is wonderful, understanding, and caring, but he doesn’t have anything to offer me. He sent me to another doctor, and the only hope he could give me was that he’s seen this go away in some people. The thought of being like this for the rest of my life was devastating, as we all know. The intergrative doctor has given me hope that I can get past this. As a side note, my regular doctor is pleased that I’m getting this treatment.

As far as the supplements, my nutritionist & doctor have a list of my medications.

Jump to this post

Thank you so much. I’m in Toronto, Canada. I will need to find an integrative doctor so I can consult, at least.
Good luck to you and to everyone here.

REPLY
searcher1 | @searcher1 | Mar 5 10:55am
In reply to @florabel "Were those given to you by your MD? Glad you are feeling much better. Thank you..." + (show)
@florabel

Were those given to you by your MD? Glad you are feeling much better.
Thank you for your reply.

Jump to this post

No, I became aware of them from online research.

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