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Have you been cured of POST COVID?
Post-COVID Recovery & COVID-19 | Last Active: Mar 25 9:27am | Replies (116)Comment receiving replies
Thanks for the detailed information. Was the overall diagnosis that you had Long Covid and were all the symptoms in your diary attributed to Long Covid? Sorry, it wasn't clear. I'll go through them. 🙂 :
1) Lymphedema - directly attributed to LC? Great that you no longer have any swelling. Hooray!
2) What medication are you taking for OAB and will you be able/when will you be able to stop the medication without a return of the incontinence?
3) PT - Completely relate to that. Have been undergoing from 2021 when hospitalized and continuing.
4) Did you have a sleep study pre-Covid that indicated you didn't have it pre-Covid? Curious because I do not think I have sleep apnea but docs have another sleepy study scheduled in case it has manifested post Covid. I was prescribed Gabbapentin for sleep but it did nothing for me. Docs wrote another script for both sleep and nephropathy but I did not fill the script because of past experience with its lack of results for my issues.
5) I have another pulmonary function test and 6 minute walk test to schedule. Have been putting them off because of very, very, severe shortness of breath and extreme PEM that comes with taking the test. I do not have restrictive airway disease, but Covid caused severe lung damage including a collapsed lung. Still have opacification and will be asking for new scans to look for improvement. Docs have me scheduled for pulmonary rehab (exercises...ugh) to strengthen lungs. No specific treatment for the opacification recommended yet.
6) I have the severe aches and pains. They are specific to LC and likely due to inflammation but I have not had any tests with a diagnosis of inflammation . What tests did you undergo for the docs to diagnose the inflammation or did the docs just assume there was inflammation because of your symptoms? What med did they prescribe for the inflammation? Has it helped? How long do you have to stay on it until inflammation is "cured"?
Sorry, lots of questions, but since the docs are still learning about LC and don't have the answers, I'm trying to get as much information from my fellow survivors. Thanks!
I was prescribed massive amounts of Ibuprofen and Tylenol to address but did decided to stop taking the Ibuprofen because of the damage it can cause the liver. Covid caused enough damage to my organs.
Replies to "Thanks for the detailed information. Was the overall diagnosis that you had Long Covid and were..."
Just realized I didn’t address all of your questions. The rheumatologist sent me for extensive bloodwork causing him to diagnose me with early stage rheumatoid arthritis. I knew I needed to get off the 1,000 mg Motrin I was taking to function. He put me on a 6 day pack of prednisone starting with 6 a day weaning down to 1. That has probably helped the best of anything I have taken. So, I called today and he prescribed prednisone 5mg 2x daily until I see him in a month. I did find that I was passing a lot of fluid on the 6 day pack. I am also having better range of motion lifting my arms in the lymph node area.
My shortness of breath came after walking through a parking lot short distances. The albuterol rescue inhaler has helped with that. The chest X-ray revealed scarring in the left lobe at the bottom. I’ll find out more when I see the pulmonologist on Friday for the first time.
My CPAp machine has become my new best friend. I now sleep 4 hours straight, only waking up around 2-3 AM to use the bathroom, and going back to sleep until 6:00ish.
My goal as I’ve learned to self advocate is to regain as much as I can recover. I’m thankful to finally have gotten answers to what I have felt in my body for the last year.
Praying for you as you progress through your long Covid journey.
My doc said Tylenol was potentially more damaging to the liver than Ibuprofen?
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Yes, when I had active Covid in June 2022, I’d be casually walking to the bathroom not really feeling any urgency. As I walked the short distance it would be like somebody turned the faucet on and it wasn’t me. I went through a lot of pajama pants in that week. The frequency and urgency continued after which is why I went to a gynourologist for testing. She put me on Myrbetrix which has worked great. I still empty my bladder when I feel the need not waiting till the last minute.
She observed my swollen feet and calves during the testing, so she actually did my referral for USF Post Covid Recovery Group.
I’ve never had swollen feet even when I was pregnant with my daughters in New Jersey winters.
When my feet started swelling 3 weeks after testing positive for Covid I knew it was somehow related.
I’ve never had such disrupted sleep before long Covid. I was waking up 5-6 times a night having no idea what woke me up. I’d use the bathroom, but there was never much urine, certainly not enough to wake me up. I was grateful that I was able to go back to sleep. I forgot to mention that I was struggling with daytime sleepiness. I’d be okay driving, but when I stopped at a traffic light I felt like I had to prop my eyelids open. It was scary.
I go to a post Covid Cares Clinic about a half hour from my home. It’s run by a nurse practitioner. No clinical. She listened at my first visit and then set me up with referrals for testing and specialists. I am so thankful that my niece told me about the clinic.