What helps post COVID shortness of breath?

My stepmother suffered from a different condition, fibrosis of the lungs & she found taking up playing the harmonica helpful. I would think this shouldn’t set anyone back too much to give it a try.

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I relate to the back and chest thing, in that the pressure and soreness foe me is (also) on both sides, essentially opposite of each other. In the process of interviewing new PCP as mine has retired. My gauge is how much attention they pay to these symptoms as my primary concern. The 1st interview the dc simply ignored them and focused on the process to enroll me as a new patient. I realize that concern and being able to help are not the same thing; but figure I need to select someone who at least acknowledges what my primary concern is.

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I got Covid back in August 2021 I have been without pain since. I had back problems prior to Covid so I am on Oxycodone 5 mg. I have a pain doctor, but she only gives me the same amount of pain killers I had with my back issues. I got 45 pills for a month with a max of two per day. I feel like I'm going insane. No sleep for days, body pain all the time. The Oxycodone seems inconsistent from one pill to the next, same bottle. I went online and found a lot of other people complaining as to the way the drug had not been the same.
These complaints went back to 2014. People who had taken the drug for over 15 - 20 years saying it did not have the same effect any longer. These people were taking 20 -30 mgs every 6 hrs, all said they didn't last that long even. I've missed Christmas Day with my Family, my son's birthday, and New Years due to pain. The opiates are so controlled due to over abuse that it's like having to groval to get them. I don't have any idea what to do. If opiates aren't available that work what else is available to people in extreme pain? I can't get into the post Covid clinic at the U of M in St. Paul until March 9th. My therapist made me promise to go to the ER the next time I have not slept for days, in pain and mind going crazy. I have Fibromyalgia, Lupus, Sjogrens, Raynaud's, on and on. It's not like I haven't had to live with pain for years, but this is like pain scale 8-12 almost daily. If anyone has any idea of a better way to deal with all of this I'm all ears. I also have myofacial pain, syndrome as well like I said my list just goes on. I am a 58 year old woman living in my mother's home. She's in her 70's and can do 10 times more than I. I have several doctors but I feel alone in this. It's like I tell them what I'm feeling and their like throwing up their arms, and acting like they have no idea what they are supposed to do. They all waited for what my Rheumatologist to decide what to do. He said he had serval others patients with the same problems, and he looked at me with this sad face. He didn't know what to tell me. I contacted my insurance company to see if they knew what people like me suffering after Covid where doing. She told me about the post Covid clinic at the U. I searched online with that label and found a few places in MN. I contacted the U of M because they were closest, but then found out they were doing video visits. I found out about Mayo's program as well online. If I had known back then it would be done by video, I would have chosen Mayo first. This site is the only thing keeping me out of the suicidal ideation feelings. Not sure how long in this kind of pain though it will last. My phycologist and psychiatrist are concerned for me, but they can't do anything because they don't deal with physical pain. I hadn't seen them in years, but I had to start again because of this mess. I'm tired of crying which only makes things worse as I also suffer from migraines. I'm sorry for rattling on, I woke up in a lot of pain and hard to breathe, crying and needed a way to calm down. Thanks for listening!

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I got Covid back in August 2021 I have been without pain since. I had back problems prior to Covid so I am on Oxycodone 5 mg. I have a pain doctor, but she only gives me the same amount of pain killers I had with my back issues. I got 45 pills for a month with a max of two per day. I feel like I'm going insane. No sleep for days, body pain all the time. The Oxycodone seems inconsistent from one pill to the next, same bottle. I went online and found a lot of other people complaining as to the way the drug had not been the same.
These complaints went back to 2014. People who had taken the drug for over 15 - 20 years saying it did not have the same effect any longer. These people were taking 20 -30 mgs every 6 hrs, all said they didn't last that long even. I've missed Christmas Day with my Family, my son's birthday, and New Years due to pain. The opiates are so controlled due to over abuse that it's like having to groval to get them. I don't have any idea what to do. If opiates aren't available that work what else is available to people in extreme pain? I can't get into the post Covid clinic at the U of M in St. Paul until March 9th. My therapist made me promise to go to the ER the next time I have not slept for days, in pain and mind going crazy. I have Fibromyalgia, Lupus, Sjogrens, Raynaud's, on and on. It's not like I haven't had to live with pain for years, but this is like pain scale 8-12 almost daily. If anyone has any idea of a better way to deal with all of this I'm all ears. I also have myofacial pain, syndrome as well like I said my list just goes on. I am a 58 year old woman living in my mother's home. She's in her 70's and can do 10 times more than I. I have several doctors but I feel alone in this. It's like I tell them what I'm feeling and their like throwing up their arms, and acting like they have no idea what they are supposed to do. They all waited for what my Rheumatologist to decide what to do. He said he had serval others patients with the same problems, and he looked at me with this sad face. He didn't know what to tell me. I contacted my insurance company to see if they knew what people like me suffering after Covid where doing. She told me about the post Covid clinic at the U. I searched online with that label and found a few places in MN. I contacted the U of M because they were closest, but then found out they were doing video visits. I found out about Mayo's program as well online. If I had known back then it would be done by video, I would have chosen Mayo first. This site is the only thing keeping me out of the suicidal ideation feelings. Not sure how long in this kind of pain though it will last. My phycologist and psychiatrist are concerned for me, but they can't do anything because they don't deal with physical pain. I hadn't seen them in years, but I had to start again because of this mess. I'm tired of crying which only makes things worse as I also suffer from migraines. I'm sorry for rattling on, I woke up in a lot of pain and hard to breathe, crying and needed a way to calm down. Thanks for listening!

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Welcome, Lucy. Good for you for being as active as can, but also learning and understanding your limits. Did pulmonary rehab help? What does an "episode" look or feel like for you?

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Mamafluh,

I am sorry you have so many concurrent issues and I can understand that it can be overwhelming.

While I don’t have any specific answer to your ailments I would suggest two things to think about. You are your own best health care advocate so if you don’t think your concerns are being heard by primary care physician then find another one. Not all docs are the same just like every other group of people. Depending on what state you live in(hopefully not
CA) your primary care physician can coordinate care with other care delivery folks. If you need more pain meds push your pcp for a coordinated care plan to meet your needs. Despite what some docs think it is their responsibility to provide you the care you need.

The second point goes to pain meds issue you bring up. The government deep reach into the personal relationship between a doctor and the patient has resulted in good docs from helping people. Keep looking for those good docs that want to treat the entire person.

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Pulmonary rehab did not work. I could go through the routine with good oxygen and HR but later that day or the next I would have a breathing episode. The following is an excerpt from my COVID journal which is now 37 pages long.

I don't look sick - bags under my eyes only occur when I push myself, so most people have a hard time knowing I'm sick. My husband is really the only one who understands my disability. Getting dressed, walking to the mailbox, taking a shower, climbing stairs, getting pans out of cupboards, doing laundry, walking from the car to a restaurant result in windedness and legs that feel like they're going to collapse - like I've run a marathon. If I push myself after becoming winded and do not rest, I end up with scary shortness of breath, blurry vision, dizziness, major brain fog, headaches, feel like my heart is racing but it's not. Pre-Covid, I participated in Aerobic dancing 3 days a week, walked 5-6 miles 2x per week, gardened for hours, played golf, and more. Now, I can't go to a big grocery store - too much effort. (I went once with my husband and he had to walk me to the car in the middle of shopping.)

You are the first person in all my research and doctor visits who has asked me to describe my "episodes". Thank you!!!

Incidentally, I am on a waiting list for the University of MI Post-Covid Clinic. I hope to get an appointment in May. No, I hope I do not have to go by May. Mayo is not taking new post-Covid patients either......long waiting list.

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Lucy, I'm disappointed that lung rehab didn't work. You'd think it would help wouldn't you?

Post-COVID clinics everywhere are experiencing more demand than they can handle, this includes Mayo Clinic unfortunately. The magnitude of the population that needs help is mind boggling and the same experts are also caring for patients admitted with acute COVID as well.

I know it's a far second best, but I hope that the knowledge and experience members share here and on the expert blog (https://connect.mayoclinic.org/blog/post-covid-recovery/) will be a stop gap until people can get into a clinic.

Let's continue to share what helps. Your mention of "you don't look sick" and carefully managing the energy you do have reminded me of this discussion. I think it may have some ideas people with post-COVID syndrome will appreciate.

- How do you plan your day and conserve energy? Are you a Spoonie? https://connect.mayoclinic.org/discussion/how-do-you-plan-your-day-and-conserve-energy-are-you-a-spoonie/

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Rehab taught me how to breath using my diaphragm the way babies do! They call it belly breathing!

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