Have you been cured of POST COVID?

Posted by mccoydj1 @mccoydj1, Sep 28, 2023

I would love to hear from folks that have been cured from Post COVID. What were your symptoms.... what things helped you improve? what things made it worse for you?

I ask because I am currently on a recovery journey - would love to understand what you've done

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

@silverfish0409

I have diffusely heterogeneous thyroid which is brought on by autoimmune thyroiditis, along with about 20 other problems.

Jump to this post

I had never heard of heterogeneous thyroid and I looked it up. Bless your heart. I'm so sorry. I have Hashimotos & Graves Disease and I alternate back and forth. COVID ramps up so many things in us doesn't it? God Bless You and I am praying for you. Keep me posted on how you are doing. I care.

REPLY
@covidstinks2023

I had never heard of heterogeneous thyroid and I looked it up. Bless your heart. I'm so sorry. I have Hashimotos & Graves Disease and I alternate back and forth. COVID ramps up so many things in us doesn't it? God Bless You and I am praying for you. Keep me posted on how you are doing. I care.

Jump to this post

I am going to university of Michigan on the 23rd to get the nodules checked out on my thyroid make sure there no cancerous,

REPLY
@silverfish0409

I am going to university of Michigan on the 23rd to get the nodules checked out on my thyroid make sure there no cancerous,

Jump to this post

Putting you on my calendar for the 23rd. Please keep me posted. I have had nodules on my thyroid that go and come since 2017. I pray you get a good report! Prayers & Blessings...

REPLY
@iamawriter

@2tnt - Can you please share what testing you underwent and the diagnoses received and treatment you are getting? When you say "it is working", can you please elaborate? Thanks!

Jump to this post

My personal journey with long Covid since 7/22 after having Covid for the second time.
3 weeks post positive Covid test in 7/22: Swelling of feet and ankles, then calves, and moving up to knees
10/22 Diagnosed with Lymphedema started at Lymphedema Clinic to control the swelling and get my legs back to normal size
1/23 Medicare and Supplemental Insurance approved Lympha Press for home use. I use it every evening after dinner. Thigh high graduated compression boots for one hour each evening
Wear thigh high compression stockings daily.
Lymphedema is a chronic condition, but I no longer have any swelling using these therapies.
5/4/23 Consult with Dr at USF in Post Covid Clinic.
Faxed requested bloodwork to my PCP, added a supplement, requested rheumatologist appointment to rule out vasculitis.
9/22 Referral to a gynourologist for testing due to sudden incontinence during active Covid in 7/22. Assessed with overactive bladder post Covid. Taking medication daily for treatment of overactive bladder.
4/23- 8/10/23 Requested a referral for physical therapy to relieve shoulder pain and weakness in knees. Went for PT 2X weekly for strengthening knees, and improving range of motion in both arms.
9/13/23 Referral to a rheumatologist. Sent for bloodwork looking for causes of 60 pound weight gain in 6 months post Covid and inflammation causing extreme achiness in the morning causing me to take 1,000 Mg Ibuprofen daily. Sent me immediately for extensive bloodwork. Follow up appt 3 weeks later to review bloodwork. Started on 6 day Methprednisone pack to address inflammatory response throughout my body. Stopped ibuprofen, taking anti inflammatory.
6/2/23 Appointment with NP at Post Covid 19 Clinic
Referral for a sleep study to address daytime sleepiness post Covid.
6/9/23 Met with Pulmonologist/Sleep Study Dr.
6/20/23 Overnight Sleep study. Tech had to put me on oxygen at 2 AM
6/22/23 Diagnosis of severe sleep apnea. Referred for pulmonary function test, 6 minute walking test, and chest X-ray.
6/29/23 Pulmonology testing at hospital outpatient
7/3/23 Prescribed Ventolin Rescue Inhaler to improve post Covid shortness of breath issue on slight exertion. Diagnosed with Restrictive Airway Disorder post Covid
7/17/23 2nd night of sleep study to prescribe proper CPAP equipment. Prescribed nasal pillow CPAP.
8/1/23 Started on CPAP. Improved sleep only waking 1 time to use bathroom. Improved disrupted sleep post Covid waking 5-6 times nightly.
10/3/23 Followup with rheumatologist. Started on 6 day steroid pack and new anti inflammatory med to relieve inflammation.
10/13/23 Upcoming pulmonologist appointment to address chest X-ray, pulmonary function test.

REPLY
@pat814

My personal journey with long Covid since 7/22 after having Covid for the second time.
3 weeks post positive Covid test in 7/22: Swelling of feet and ankles, then calves, and moving up to knees
10/22 Diagnosed with Lymphedema started at Lymphedema Clinic to control the swelling and get my legs back to normal size
1/23 Medicare and Supplemental Insurance approved Lympha Press for home use. I use it every evening after dinner. Thigh high graduated compression boots for one hour each evening
Wear thigh high compression stockings daily.
Lymphedema is a chronic condition, but I no longer have any swelling using these therapies.
5/4/23 Consult with Dr at USF in Post Covid Clinic.
Faxed requested bloodwork to my PCP, added a supplement, requested rheumatologist appointment to rule out vasculitis.
9/22 Referral to a gynourologist for testing due to sudden incontinence during active Covid in 7/22. Assessed with overactive bladder post Covid. Taking medication daily for treatment of overactive bladder.
4/23- 8/10/23 Requested a referral for physical therapy to relieve shoulder pain and weakness in knees. Went for PT 2X weekly for strengthening knees, and improving range of motion in both arms.
9/13/23 Referral to a rheumatologist. Sent for bloodwork looking for causes of 60 pound weight gain in 6 months post Covid and inflammation causing extreme achiness in the morning causing me to take 1,000 Mg Ibuprofen daily. Sent me immediately for extensive bloodwork. Follow up appt 3 weeks later to review bloodwork. Started on 6 day Methprednisone pack to address inflammatory response throughout my body. Stopped ibuprofen, taking anti inflammatory.
6/2/23 Appointment with NP at Post Covid 19 Clinic
Referral for a sleep study to address daytime sleepiness post Covid.
6/9/23 Met with Pulmonologist/Sleep Study Dr.
6/20/23 Overnight Sleep study. Tech had to put me on oxygen at 2 AM
6/22/23 Diagnosis of severe sleep apnea. Referred for pulmonary function test, 6 minute walking test, and chest X-ray.
6/29/23 Pulmonology testing at hospital outpatient
7/3/23 Prescribed Ventolin Rescue Inhaler to improve post Covid shortness of breath issue on slight exertion. Diagnosed with Restrictive Airway Disorder post Covid
7/17/23 2nd night of sleep study to prescribe proper CPAP equipment. Prescribed nasal pillow CPAP.
8/1/23 Started on CPAP. Improved sleep only waking 1 time to use bathroom. Improved disrupted sleep post Covid waking 5-6 times nightly.
10/3/23 Followup with rheumatologist. Started on 6 day steroid pack and new anti inflammatory med to relieve inflammation.
10/13/23 Upcoming pulmonologist appointment to address chest X-ray, pulmonary function test.

Jump to this post

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.

REPLY
@iamawriter

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.

Jump to this post

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.

REPLY
@iamawriter

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.

Jump to this post

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.

REPLY

i had covid twice the first time was july 2021
i was in perfect health before
i have since been diagnosed with long covid fybromyalgia and rheumatoid arthritis
i am in constant debilitating pain
i am on planquenil and lyrica

REPLY

All of this is simply a nightmare. I have been on this road for over a year. Running to specialists, waiting for weeks, and months to even speak to anyone, and then getting NO help after the wait. After this length of time and my symptoms just getting worse, I no longer have the energy to jump through the hoops to get more meaningless appointments. I guess I’m going it alone. If my body doesn’t figure this out, I guess it will finally kill me.

REPLY
Please sign in or register to post a reply.