message from my dr about my long term covid so sad now

Posted by ttammysc @ttammysc, Dec 27, 2022

I have so many symptoms from long term covid. i sent them all to my dr. he said there is no test to determine it and some people have symptoms longer than others. Except mine are everywhere. I saw somewhere on here that a member had a test done to determine if he/she had it. somewhere in texas. i would love to know the name of that doctor office so i can give them a call and talk to them. my insurance would cover it. he gave me no hope with my symptoms as well as how to deal with the CF that I have with it. All he could say was he was sorry. it upsets me so much that i live with constant nausea, and loose stools, can 't eat normal food without major issue; i can't take pro-biotics because of my intense allergy to live cultures. my throat hurts and my chest hurts and my CFS is worse now with covid pain. all my dr could say was that he was sorry. and, im the one miserable.

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@rsfcowgirl

Hi. I know how Drs can make us feel. We think of our Dr was having all the answers bc sometimes they do. I heard from my Dr, as I sat in his office c/o abt debilitating exhaustion "It's only going to get worse. There's nothing that can be done. Nothing will get better on it's own " He then picked up his laptop and left the room. I was devastated. I felt hopelessness+ despair. Then a stranger handed me a country music style CD she recorded. She encountered me just momentarily while shopping. The first song began "Did the Dr tell you there is nothing he can do? Did he leave you hopeless+ confused? It goes on to say "It's not over til God says it's over."
When I heard those words, it put my Dr in his rightful place in the larger picture.
Then I embarked on reading/watching everything being disseminated on Long COVID from reasonable sources on the Internet. Something inside of me didn't believe my Dr was the final answer. He was not. I've made incremental improvements towards restoration of health and the cumulative results are solid from non- professional care.
Many of us redirected our focus from the medical establishment to alternative sources. And for many, it has been working out.
Discouragement is a huge disability itself. I say that from experience. It can be a greater burden than anything physical. I'm here to tell you that there is TRUE HOPE. You can grab hold of that and let it be real for you.
There are many, many non-medical interventions you can do that make a difference. One example: Epson salt baths. Another: vague nerve stimulation to your ear receptors. Another, certain herbal teas. Another: otc supplements. Another, Benadryl.
I could go on. I could be specific. But right now I want you to know the list of what is available to address symptomatic relief and perhaps even anti-viral status is abundant.
The current situation of recovery outside of a formal Long COVID clinic is self help. It's workable bc of the Internet. It's available for you. It might be overwhelming at this moment, but just start by throwing off hopelessness and finding some hope+ faith. Then start small. Reject everything that tells you that there's nothing that can be done. Try to get some rest + give yourself moments of peace. Then you'll be ready to sort out your priorities for recovery + begin to learn + test them.
Praying for you.

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Totally agree with same experiences and no matter ones age or healthcare system think in everyones best interest to seek mindful alternatives that help them as this journey is so different for each person🙃. Hugs to all

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I am a little over one month post positive Covid test. I had 2 pretty good days this past week in which I almost felt like a normal human being. The thing is, after a good day, the next day is not so good. It has been back and forth, mostly back. Has anyone else experienced this? I have mild nausea sometimes in the mornings and still have that woozy lightheaded feeling on and off. The feeling is so weird that it is hard to explain. My doc now has me monitoring my blood pressure each day. My appetite is good sometimes and sometimes not so good, but generally I feel better after I have eaten. I am in the process of starting at the Long Covid Clinic at Scripps here in San Diego. Hopefully they can give me some perspective on all this. Of course I am so bummed out that I just don't have the energy or ability to resume my former life. The worst part is that no one in the media is really talking about all the suffering that probably millions of people are going through. Everyone just wants to believe that this is over.

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@ripley

I also got little support from my doctors regarding symptoms that appeared on and off after Covid: severe insomnia, constipation, stomach issues, muscle aches, and fatigue. It seems there's a shortage of Drs and they are all too busy to help anyone with complicated issues.

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I am so sorry. I prayed for you tonight. I pray for the medical community that they will be able to find a cure. I know everything you have mentioned is real and terrible. The insomnia is the worst because without sleep, your body can't heal. The stomach issues and fatigue just add to the already stressed body. Hang in there dear soul.

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@rsfcowgirl

Hi. I know how Drs can make us feel. We think of our Dr was having all the answers bc sometimes they do. I heard from my Dr, as I sat in his office c/o abt debilitating exhaustion "It's only going to get worse. There's nothing that can be done. Nothing will get better on it's own " He then picked up his laptop and left the room. I was devastated. I felt hopelessness+ despair. Then a stranger handed me a country music style CD she recorded. She encountered me just momentarily while shopping. The first song began "Did the Dr tell you there is nothing he can do? Did he leave you hopeless+ confused? It goes on to say "It's not over til God says it's over."
When I heard those words, it put my Dr in his rightful place in the larger picture.
Then I embarked on reading/watching everything being disseminated on Long COVID from reasonable sources on the Internet. Something inside of me didn't believe my Dr was the final answer. He was not. I've made incremental improvements towards restoration of health and the cumulative results are solid from non- professional care.
Many of us redirected our focus from the medical establishment to alternative sources. And for many, it has been working out.
Discouragement is a huge disability itself. I say that from experience. It can be a greater burden than anything physical. I'm here to tell you that there is TRUE HOPE. You can grab hold of that and let it be real for you.
There are many, many non-medical interventions you can do that make a difference. One example: Epson salt baths. Another: vague nerve stimulation to your ear receptors. Another, certain herbal teas. Another: otc supplements. Another, Benadryl.
I could go on. I could be specific. But right now I want you to know the list of what is available to address symptomatic relief and perhaps even anti-viral status is abundant.
The current situation of recovery outside of a formal Long COVID clinic is self help. It's workable bc of the Internet. It's available for you. It might be overwhelming at this moment, but just start by throwing off hopelessness and finding some hope+ faith. Then start small. Reject everything that tells you that there's nothing that can be done. Try to get some rest + give yourself moments of peace. Then you'll be ready to sort out your priorities for recovery + begin to learn + test them.
Praying for you.

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You go girl. You are on the right path!

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@prancer20

I am a little over one month post positive Covid test. I had 2 pretty good days this past week in which I almost felt like a normal human being. The thing is, after a good day, the next day is not so good. It has been back and forth, mostly back. Has anyone else experienced this? I have mild nausea sometimes in the mornings and still have that woozy lightheaded feeling on and off. The feeling is so weird that it is hard to explain. My doc now has me monitoring my blood pressure each day. My appetite is good sometimes and sometimes not so good, but generally I feel better after I have eaten. I am in the process of starting at the Long Covid Clinic at Scripps here in San Diego. Hopefully they can give me some perspective on all this. Of course I am so bummed out that I just don't have the energy or ability to resume my former life. The worst part is that no one in the media is really talking about all the suffering that probably millions of people are going through. Everyone just wants to believe that this is over.

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So Scripps Long Covid Clinic begins patients within 1 month of having a negative test after having COVID if they have symptoms? That's interesting. I'm familiar with Scripps. I'd love to hear about their approach of you are so inclined. Wishing you a speedy recovery. After the present unusual weather passes, you'll have a beautiful setting to enjoy while being treated.

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Well my primary doc told me about the Long Covid Clinic and told me to get back to her after one month testing positive if I still had some unusual symptoms. I have to get special lab work before I can go to the Covid clinic, so we will see. I am not sure if they will accept me, so we will see. I would like to get some questions answered for sure. I will definitely post follow ups. All the best to you, cowgirl!

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I am with you. I feel like we have been abandoned by the medical field with help getting over these symptoms.

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@prancer20

I am a little over one month post positive Covid test. I had 2 pretty good days this past week in which I almost felt like a normal human being. The thing is, after a good day, the next day is not so good. It has been back and forth, mostly back. Has anyone else experienced this? I have mild nausea sometimes in the mornings and still have that woozy lightheaded feeling on and off. The feeling is so weird that it is hard to explain. My doc now has me monitoring my blood pressure each day. My appetite is good sometimes and sometimes not so good, but generally I feel better after I have eaten. I am in the process of starting at the Long Covid Clinic at Scripps here in San Diego. Hopefully they can give me some perspective on all this. Of course I am so bummed out that I just don't have the energy or ability to resume my former life. The worst part is that no one in the media is really talking about all the suffering that probably millions of people are going through. Everyone just wants to believe that this is over.

Jump to this post

I agree. One step forward and 2 or 3 steps back! An hour after I get up I'm ready to go back to bed on most days
When will it be better?

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There is hope and there are answers…. The system has not gathered enough data to help us. But we can use the things we know that help with similar issues…. I’m a longhauler in RECOVERY. I can offer information and tools to help you recover.. I was diagnosed with COVID September 28, 2020. I experienced a global debilitating symptoms. What the world will come to know that the corona virus like many previous neurotoxic virus the impact varies… leaving you and practitioners hesitant to treat and resistant to prescribing treatment without evidence to support recommendations. It takes time but we want answers now…. I’m a retired bonemarrow transplant nurse, wife mother of 4. I used to be a bad ass… until COVID.

That’s the back story this is what you need to know:

There are tools you can use to understand the root of the issues you’re experiencing. I understand the impact is social emotional and physical. It’s all real..

After your viral infection what you didn’t expect was an imbalance when you recovered…. Finally the initial infection ended but when you attempted to resume your life you began you experience symptoms. The symptoms became a barrier to your previous quality of life. That then created a cyclical lifestyle of pushing and crashing.. When you felt well you did as much as you can leading to a crash. That produced symptoms that then consistently lead to the loss of your identity and quality of life. Health care providers could guess and offer minimal advice that contributing to the high and lows emotionally and mentally and physically. Time to break the cycle and start paying attention to what you know and how to create evidence that works towards your recovery. I’m sorry to say there is no quick fix just a deeper understanding on how to rebuild.

The major imbalance is in your autonomic nervous system…. What tools do we have to assess and measure the functioning and imbalance. It’s called your HRV…

I use the whoop because it works and provides the objective information you need. You have to been to measure and be objective about your recovery. I help people recovery. I too am in recovery…. I’ve only begun to apply what I’ve learned and restore my quality of life since July 2022. On social media I’ve documented my journey using #covidrecoverymama I was successfully treated at Mayo with Dr Munappali and Dr. Sletten. I completed Hyperbaric treatment at AVIV in the villages. Im not paid by anyone. I just seek to recover and help others along the way. No treatment will heal you without you yourself learning how to help yourself. I’ll post some links below. You are not alone and you can recover it’s just not going to happen overnight. You are not crazy and there is hope. Hugs

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The HRV is used by pro athletes to improve performance you can use it you monitor and consistently improve over time. It takes 2 weeks to understand your base line the. You can begin to use it.

The whoop recovery status red yellow and green will give you a heads up on the balance of your autonomic nervous system. Keep track of your activity tolerance and increase your thresholds.

When you balance your autonomic nervous system you will find a way.

https://m.youtube.com/watch?v=ThfYMvVQkBA

I felt a great sense of peace and understanding after watching limitless on Disney plus. Episode 6 is a validating episode of our experience they us an aging suite developed by MTI to simulate what we are experiencing. We all literally aged over night as a result of our infection. We feel ancient inside and the outsides and logic doesn’t add up. Be well and good luck. I posted more information inside this chat if your looking for more information or just ask me and if I know I’ll share with you what I can.

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