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

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.

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.

@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

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.

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/

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.

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