Has anyone gotten back to normal after one complication after another?

Posted by britelite @britelite, Apr 25, 2023

I’m 78 yr old female in good health. Able to swim 2 K and walk 1 mile 3 X week.
I tested positive for COVID on Feb. 10, 2023. I just had a cough - no other symptoms. Took a course of Paxlovid. After about a week, tested negative and was able to go back to short spurts of exercise - swimming and walking. After another week, noticed severe exercise intolerance. I’d get short of breath and my pulse would slow to 48 and become irregular. Saw cardiologist and EKG was essentially normal. Wore a 24 hr. Holter monitor which showed some irregularities but doc did not feel they were significant. In the meantime, chest congestion was getting worse so my internist put me on a course of prednisone. Then my blood pressure shot up to 210/110 and I landed in the ER. I was trending toward hypertension so I was put on Amlodipine. I’ve gotten my BP under control and have days when the shortness of breath is not too bad. (I use an Albuterol inhaler which helps). Then today (3/25) I woke up really lightheaded and had what I think was an anxiety attack. I was afraid I was going to die. I’m feeling better as the day goes on but still lightheaded. It’s just one thing after another. I wonder if I’m ever going to get back to normal.
I’m retired and don’t have to worry about work but my heart goes out to the younger ones who are experiencing similar post COVID symptoms and are unable to get back to work or a semblance of a normal life. I’m grateful to be able participate in this forum and read about other’s experiences and know that I’m not alone in all this. Thank you.

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

kitty2 | @kitty2 | Jun 11, 2023

In reply to @ripley "Have you taken any meds for fibro that helped relieve pain without bad side effects?" + (show)

I was told at Mayo post covid clinic they are using Naltrexone 1.5 mg for patients with fibro, chronic fatigue, colitis, and long covid. It has to be compounded at the pharmacy. I got it it in Rochester.

ripley | @ripley | Jun 11, 2023

In reply to @kitty2 "I was told at Mayo post covid clinic they are using Naltrexone 1.5 mg for patients..." + (show)

Were you prescribed Naltrexone for long covid or fibro? Did it help? If so, can you explain what symptoms it helped relieve? Thank you.

poppy67 | @poppy67 | Jun 11, 2023

In reply to @dhooge "Wowsas, Jenna!! my first time in Mayo Connect and there you are. Exactly the support I..." + (show)

God bless you all. I read your stories and feel you are reading mine. Currently I’m having trouble breathing deeply. I’m having panic attacks. I’ve been depressed and am looking for answers. I have strictures in my esophagus and am scheduled for a second treatment to stretch my esophagus.
What are the breathing exercises? Can someone explain box breathing? Also, does acupuncture help?
Thank you all for your willingness to reach out and help others. I’m getting no real help with my regular doctors. I often feel I know more about post Covid than they do.

britelite | @britelite | Jun 11, 2023

In reply to @poppy67 "God bless you all. I read your stories and feel you are reading mine. Currently I’m..." + (show)

Poppy - Google box breathing and you will find several videos explaining it. I feel they are helpful. I am going to make an appointment with an acupuncturist next week. Hope it helps with my breathlessness, insomnia and lightheadedness. I agree with you - after reading all these posts I also feel like I know more about long covid than my docs. They all say they don’t really know if all my problems are due to LC as there is not enough data on it yet. Very frustrating!

kitty2 | @kitty2 | Jun 11, 2023

In reply to @ripley "Were you prescribed Naltrexone for long covid or fibro? Did it help? If so, can you..." + (show)

Hi..I just saw your reply. The Naltrexone was given for the Ulcerative Colitis that I got from having Covid and also for my foot pain also from Covid, I had the Covid toes. I have not started taking the medication yet as I have been withdrawing from the steroids I had been taking for so long. I wanted to make sure I did not add another drug so soon. Do you go to Mayo in Rochester? That is were I got it. They have to compound the med in there specialized pharmacy. I guess it is well tolerated by patients. Kitty2

cindelee617 | @cindelee617 | Jun 12, 2023

In reply to @kitty2 "Here is a article I found..How to Navigate ongoing grief with a Chronic condition..From Living well..." + (show)

Hello, I'm sorry that you were going through this. I have written many comments on this blog in the past, I'm not sure if there is a way to go back and read them. I have been dealing with long covid for a year this past April. I have been hospitalized six times. Bizarre symptoms from a to z primarily heart issues, feeling like I was going to pass out etc. I started doing a lot of online research in the UK, Israel, and of coarse the well trusted Mayo. Six months ago after a lot of research, I decided to start taking probiotics, also mango leaves (I bought them on amazon in a tea bag form) because of many things I had read stated, to fight any auto immune disease you have to start with your gut immunity. At the time I could not think of being on a tennis court, could not make plans to do any activity as I had no idea how I would be feeling. I am making a very long story short, there were many things I could no longer do, including just taking a walk. I am very athletic and that is a big part of my life. I decided to give it a try. After taking probiotics and mango leaves (tea form) I started feeling better. I stayed feeling well for 5 months, back on the court, traveling etc. A month ago I felt off again, rapid heart beat, exhausted, the nightmare all over again! Sure enough, ended back in ER. Because I had been so busy, I forgot about the probiotics (Florastor) and the mango tea leaves, subconsciously I believe I thought I was better and did not think about either. Right away when I started thinking about what I did or did not do that had changed I remembered I was not taking either. I started faithfully drinking 3 cups a day of the tea, and 2 probiotics daily. I am feeling so much better, not sluggish, on the court again, feeling like myself, (my old self before long covid) NO I do not work for either company, I happen to be retired. I'm not trying to give anybody false hope. But if this can help just one person I would be so happy as I know what it is like to suffer with this. It changes your complete life. I made up my mind 6 months ago that this was not going to owe me and I wasn't going to accept it. Yes I know it's easy to say but I had to transform my mind into knowing that I was going to fight this. I didn't talk about it everyday, as I stopped talking about it and started fighting it. I hope this helps anybody! Take care of yourselves, fight this anyway that you can!

klittr3637 | @klittr3637 | Jun 12, 2023

In reply to @cindelee617 "I sure hope this helps and I'm making a very long story short. I have written..." + (show)

@cindelee617

I sure hope this helps and I'm making a very long story short. I have written on this blog previously if you would like to look back, a few times. It is been a year this month that I have been dealing with long covid. I have been in the hospital six times due to heart palpitations, chest pain, lightheadedness, confusion, my face tingling and going numb, and many other issues. I'm 63 years old and have always been very healthy active competitive tennis player. After a year of being frightened, worrying that that was going to be my life feeling like I was never going to be back to myself. I am now feeling much better. Back on the court, less palpitations if any, less lightheadedness. I have a few things here and there that from me back but I count my blessings everyday. I refuse to accept this as my life . I don't want to get anybody's hopes up and this may not be for everybody. I had read something about mango tea leaves. It was an ingredient in a form of a capsule but the main ingredient for autoimmune was the mango tea leaves. Instead of taking the capsule with otherherbs etc in it, I decided to go right to the mango tea leaves. This may sound crazy but I am drinking three glasses of mango tea leaves, as well as probiotics twice a day. Over a four month period, I am feeling so much better. I don't think it's a coincidence, because I stopped the mango tea leaves for 2 weeks thinking that I was better I started going right back to where I was, heart palpitations, stomach issues, tired, lightheadedness. My husband is the one that brought up the mango tea leaves. He asked me if I stopped drinking the tea. Oddly, yes I did. Since then I am back to drinking my tea leaves 3x a day and I I'm feeling so much better. My thoughts are, long covid messes with your autoimmune system. Probiotics helps your gut, the mango tea leaves also help with your autoimmune. I am not a doctor or a nurse but it may not help to try this . Please do some research on the mango tea leaves to see if it may work for you. I hope this helps somebody. Amazon has the mango tea leaves in a powder form, or tea bags which is what I use. I also get the Florastor (probiotics) on Amazon.

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Ordered mango tea leaves..praying it works for me..willing to try anything. Thanks

klittr3637 | @klittr3637 | Jun 12, 2023

In reply to @britelite "Poppy - Google box breathing and you will find several videos explaining it. I feel they..." + (show)

Im convinced that I DO know more about LC than the drs do😆 since they seem to know very little! This site has helped me a lot.I take one day at a time and try to keep a positive attitude..I believe alternative methods will be more helpful to me as I take no prescriptions , just vitamins and minerals

poppy67 | @poppy67 | Jun 12, 2023

In reply to @britelite "Poppy - Google box breathing and you will find several videos explaining it. I feel they..." + (show)

Thank you for sharing. Please let us know how things go with the. Acupuncturist and thanks for the direction on box breathing.

memcat | @memcat | Jun 12, 2023

I've been living with Long CoVid for 13 months. I'm 62, was in good health for my age, and had all my vaccinations. The hardest thing for me is how hard it was to get seen by a doctor who had an inkling about Long CoVid. After I saw my PCP had no clue or plan, I asked him to refer me to the Long CoVid Clinic near me. It took 9 months after his referral. In the meantime, my employer wants a doctor to verify my limitations and illness. Applying for short-term and long-term disability requires medical documentation and test results that match what the doctor is diagnosing. Most of the tests on Long CoVid patients show nothing and they all cost money. My fear is losing my job and health insurance at a time I need health insurance the most. My symptoms have stagnated. I don't get better, I don't get worse. Some hours are better. But Pacing is the key. Right now I can't go more than 10-20 minutes of any activity without having pain, fatigue, shortness of breath, and lightheadedness. I'm considering getting hiking walking sticks for extra support as my Physical Therapist has me walking 3 times a week for 10 minutes , taking breaks every 1-1 and 1/2 minutes. Duloxetine did nothing for me. Took it for 2 months with no improvement anywhere. AS debilitating as the illness is, it is the anxiety I have of how will I afford healthcare and my bills that is most concerning.

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