@summerof42

I began experiencing my symptoms in November '21 after my first Moderna booster and proceeded to go through every specialist in and around Charleston, SC. My Doctors called it "the journey of what it's not", and in reflection it is astounding (now that I have been to Mayo and experienced their knowledge) the lack of understanding medical professionals here have. They are trying, but they don't truly understand the problem thus the path to wellness.

In reflection my biggest learning is the practice of moderation which Mayo preaches. When I read posts I don't find anyone mentioning moderation as central to recovery and wellness. One medical professional said to me "you need to act like you had a heart attack and follow a very strict recovery plan". Another said "you need to act like you were an athlete and you were injured and follow a specific plan to return to your prior athletic performance". I, not knowing any better during the first 6 months of 2023 was exercising 6 of 7 days 45 minutes aerobic (cardio and resistance) exercise and would crash afterwards not understanding that I was driving myself backwards because of not moderating!! Today as part of my recovery plan (my plan includes many other elements thanks to Mayo direction) I am at 10 minutes of recumbent bike and am beginning to feel better.

I truly hope you find a plan that gets you to wellness. If you haven't been to the Mayo Clinic and can I highly recommend it, for me they were the only ones who understood the problem and have set me on a path to recovery and wellness again.

Oh this beast!! Thought I was on the way but a little crash yesterday sent me reeling! I had almost two weeks of almost normal then wham ! I am so very fortunate to have caring, knowledgeable doctors. We are now trying a tiny dose of thyroid medicine and I thought that was the trick now I’m not sure. Sooo frustrating. I know I am better because I don’t spend the day in bed anymore and many days I walk my neighbors dog for 20 mins. Moderation is the key. I operate completely differently now! I was sooo active. I have sold my kayak and am giving my bike away as I just turned 75 and will just rent something if I am ever able to do things again! Blessings to all and may everyone find competent medical care !!

I’ve been dealing with Long Covid for a year and a half and it seems like every time they give me a new drug. I have different problems. I am very so fed up with it now I’m on PREDNISONE and now I’m having cramping in my legs so bad that I am in excruciating pain can’t sleep. Just fed up with everything.
And now the doctors telling me to go to the ER to see if I have a blood clot in my leg. I am fed up. I don’t care. There is no support system out there for Long Covid even through the government.

I dont know if this will help but have you tried to see a FUNCTIONAL MEDICINE Dr? Conventional med dr's will not help you. They only treat symptoms and wont try to figure out why things are the way they are. If it can't be seen on an xray, MRI or simple typical blood tests, they will not keep digging. There is a lot of info out there now about long covid being a MAST CELL issue. Find a functional medicine dr and see if they will help with certain antihistamines (not benadryl) and low dose anti inflammatory meds like Naltrexone which is used in low doses for post viral inflammation. I am only 11 weeks in to my meds (Ketotifen 1 mg every 12 hours and Naltexone 4.5 mg nightly before bed) but I know so many people that are bedridden from long covid and these meds seem to at least help me feed myself and keep house. Believe me I am NOT healthy like I was before. I was on a horse drill team with teenagers prior to getting long covid and I cannot do that now but I am at least 40% functioning. There is no way I could work if I were still nursing at the hospital though. My body is in too much pain with the muscle cramps and skin burning to be able to focus on a job. My heart pounds 50% of the day but my dr Rx'd Low dose Ativan 0.25 mg for that and it helps a little. It also helps with the tremors and the skin burning. It's not perfect by no means. There are moments where the med fails but the majority of my day is no longer filled with contemplating suicide.

I don't know how long it has been since I originally had covid. It was sometime during the height of it all when we were all masked and locked down. Long covid, for me, made my muscles fatigue with any kind of continuous use. This primarily hit my arms, although I felt it in my legs some as well. I had shortness of breath and I would feel flutters in my chest sometimes.

The fatigue I had was odd. Early on when I used my muscles to do heavy lifting, I would pay for it starting 2 days later and it would last for at least a week. A year later and I could still do heavy lifting and and I had no repercussions if it was fairly quick (carrying something for a minute and put it down). But any amount of consistent weight (lifting my phone to my ear for 5 minutes) resulted in fatigue, carrying anything light for 10 minutes, and holding my head up all day at work was killing my neck.

That neck pain became bad and would result in excruciating headaches. A PT said this was the muscles causing nuchal ridge pain. I ordered a device (a rubber triangle thing) that manually pushes/separates/rubs this area while laying on it and turning my head. It would make my neck crack and release the muscle tension. It worked great. I had to use it for the last year or so and still use it from time to time.

Getting better (which I'm still doing) is hard to notice because improvements are so slight. But, over long periods of time, I know what it was like back then and I can see the improvements. Noticing fatigue is less and less often. Shortness of breath and flutters are very infrequent.

Before covid I was taking the stairs to work 14 to 16 flights. I have now done that a couple times in the last couple months and am starting to feel like starting to do it again.

I'm thankful this is getting better for me. Here is a recollection of my situation: I originally got the Covid vaccine early on. One of the first when the "I got shot" photo-selfie sign was up. I never got boosted after that. I have had a tested positive result of Covid twice, and have not probably had it more than that. But I have also had negative results even after being exposed from close contact with other Covid positive people.

I will pray for all of you who are suffering afflictions with the results of this whole thing (be it Covid, vaccines, whatever). I pray for you to see positive results and have hope that your symptoms fade away faster than mine have.

God Bless