1. < Post-COVID Recovery & COVID-19

Any tips to help recovery for a COVID Long-Hauler?

Posted by Cilla21 @cilla21, May 13, 2021

I was diagnosed with COVID-19 at the end of Feb 2021. Nearly three months later, neither my taste nor smell has been fully restored. My husband also tested positive and was completely out of it for one full week. He could not even get out of bed. My case seemed to be mild. Though I felt ill, I was not bed-ridden nor did I feel debilitated. Most of my activities (household and work) were not halted. My husband has zero lingering effects from his infection, meanwhile I am still experiencing chills, headaches, fatigue, and body aches on and off weekly. Additionally, I'm undergoing testing for heart valve issues. It's becoming increasingly difficult to tolerate these lasting symptoms with no end in sight. Any suggestions/tips to aid in a faster recovery would be welcomed and very much appreciated.

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islandlady | @islandlady | Jul 30, 2021

I am looking for information on how safe it is to get a covid shot if you are still breast feeding and also taking medicine for a blood clot.

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2 replies
Mentor
Sue, Volunteer Mentor | @sueinmn | Jul 30, 2021
In reply to @islandlady "I am looking for information on how safe it is to get a covid shot if..." + (show)
@islandlady

I am looking for information on how safe it is to get a covid shot if you are still breast feeding and also taking medicine for a blood clot.

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Here is information about the safety of vaccines while breastfeeding : https://www.ucsf.edu/news/2021/07/421041/no-sign-covid-19-vaccine-breast-milk The source of the report is the Journal of the American Medical Association's Pediatrics.
Here is the guidance from the CDC about taking a blood thinner or with a history of blood clots (see pages 8 & 9.) https://www.cdc.gov/vaccines/covid-19/downloads/pre-vaccination-screening-form.pdf The guidance also recommends consulting your doctor and avoiding the Johnson & Johnson vaccine.

Is this the information you are looking for?
Sue

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Merry, Alumni Mentor | @merpreb | Jul 30, 2021
In reply to @islandlady "I am looking for information on how safe it is to get a covid shot if..." + (show)
@islandlady

I am looking for information on how safe it is to get a covid shot if you are still breast feeding and also taking medicine for a blood clot.

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Good afternoon @islandlady. OOh, I love that name. Congratulations on your baby. There isn't any evidence that the vaccine even gets into breastmilk. And there is no indication at this time that COVID-19 vaccines are harmful or damaging to women who are breastfeeding or their infants.
https://newsnetwork.mayoclinic.org/discussion/what-pregnant-and-breastfeeding-women-should-know-about-covid-19-vaccine/
There are certain precautions that you must undergo prior to being vaccinated while on blood thinners. These are mostly precautionary questions that delve into your medical history. It goes without saying that working closely with your doctor and your pediatrician will be helpful in allaying any worries and taking any necessary measures that might be needed.
https://www.cdc.gov/vaccines/covid-19/downloads/pre-vaccination-screening-form.pdf#:~:text=As%20with%20all%20vaccines%2C,intramuscularly%20with%20reasonable%20safety.
Have you had your baby as yet? If not do you have a pediatrician lined up?

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laurie | @lauriekh | Aug 3, 2021
In reply to @sueinmn "I am so glad to hear that the puzzle was solved for you, and that you..." + (show)
@sueinmn

I am so glad to hear that the puzzle was solved for you, and that you are finally beginning to heal. What a difficult thing to experience on top of your stem cell transplant and post treatment.

This article, recently found by another of our Connect mentors, may help explain the lack of antibody testing:
https://www.npr.org/sections/goatsandsoda/2021/05/16/995446986/coronavirus-faq-should-i-get-my-antibodies-checked-after-i-get-vaccinated
The good news is that work is underway to both develop and test a true vaccine antibody test and to understand all the pieces that must work together to provide protection from Covid infection.

Please take good care of yourself as you continue to heal. I would love to hear about your further progress in the weeks and months ahead.
Sue

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Thank you. The link you shared is about something different...I'm interested in reading the link you mentioned, tho, about antibody testing!

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Aug 3, 2021
In reply to @lauriekh "Thank you. The link you shared is about something different...I'm interested in reading the link you..." + (show)
@lauriekh

Thank you. The link you shared is about something different...I'm interested in reading the link you mentioned, tho, about antibody testing!

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Sorry - Here is the corrected link:https://www.npr.org/sections/goatsandsoda/2021/05/16/995446986/coronavirus-faq-should-i-get-my-antibodies-checked-after-i-get-vaccinated

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chatkat65 | @chatkat65 | Oct 9, 2021

Have things gotten better for you

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esails | @esails | Oct 10, 2021

Has anyone gotten ANA titer lab work? My dr suggested this because of my chronic covid fatigue.

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1 reply
ameed | @ameed | Oct 14, 2021
In reply to @weeds "Dear Long-Hauler-I was never diagnosed with Covid, but have been experiencing long-hauler symptoms. I never had..." + (show)
@weeds

Dear Long-Hauler-I was never diagnosed with Covid, but have been experiencing long-hauler symptoms. I never had a fever, or cough so only went once to get tested when I had a sore throat-and the test came back negative, though it did recommend to get re-tested.
About a month later, I began having less and less energy, and body aches, joint pain and fatigue. If I got up at night, it felt like I had run a marathon when I got back in bed. My sleep pattern was totally disrupted. But the fatigue was the worst. I went from daily three-mile walks to excessive fatigue after a half-block, then had to quit walking altogether. The fatigue and brain fog made me feel like I wasn’t myself at all. Now and then I would have a bit of energy and try to do things, then pay the price the following day and not be able to get out of bed. This went on for over four months. Finally now, I am starting to feel better and am back up to a mile and a half walks. Mind you, I have never had a diagnosis of ANY kind, Covid or not. I had every test imaginable, but nothing ever found. I feel it is post-covid but I had the vaccine in February so there is no way to tell if I ever had Covid. I now feel like myself again, but there were times when I thought it would never end.
I hope it helps knowing that there IS light at the end of the tunnel.

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Your story sounds familiar! I can relate! I hope you continue to improve and you are able to participate fully in life soon. It gets so frustrating!

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weeds | @weeds | Oct 15, 2021

Thank-you, Ameed. Back when I posted this comment, I really thought I was getting better. Unfortunately, I am back to square one (and worse) with this. One doctor calls it Covid/Long-Hauler, and another labeled it Chronic Fatigue/Fibromyalgia. They are probably both right. I have to pace myself every day so I don’t go over my “energy limit”. It is very discouraging not to be able to do normal activities anymore. Still, it’s good to know that I’m not the only one with long-hauler symptoms that was never diagnosed with Covid. I bet there are many more. Thanks for your post.

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