Post-COVID Syndrome is real

I also am having migraines and mild headaches and my scalp burns all the time…. It’s so frustrating 😢

Here's the latest information and guidance on the Delta variant and what people who have Covid previously are experiencing: https://connect.mayoclinic.org/blog/post-covid-recovery/newsfeed-post/delta-and-post-covid-syndrome/

As you can see, there are not many answers yet - but there is one overreaching piece of advice: Even if you have had Covid and are experiencing post-Covid symptoms, please get vaccinated.

Natalie, I think many would agree with you. Fatigue is the most commonly reported symptom and one that is debilitating. Dr. Greg Vanichkachorn (Van) shares more in this short video.

It's a long, slow road to recovery, I'm afraid. But you are the driver on that road. In the Post-COVID Recovery blog here: https://connect.mayoclinic.org/blog/post-covid-recovery/, Mayo clinicians share approaches that can help like patient-directed mindfulness, nutrition, activity. What I mean by "patient-directed" is that you know best what is the right amount of activity to do and to monitor what helps you. The frustrating part is that it takes time. There is no silver bullet. I wish there were.

I seen these "crashes" first-hand. It's like someone just turns out the lights and closes the shutters. Not only physical function is impaired but people can't even think straight or complete a sentence.

Natalie, if you haven't already, I might suggest you start a diary or journal to make note of these episodes. Take note of time of day, what you were doing when it happened, and severity of symptoms. Keep it simple. I would grade the severity with a simple 1. 2. 3. Mild, moderate, severe. Hopefully over time you will discover patterns that help you recognize triggers to help avoid or lessen the episodes. What do you think?

Unfortunately, this video was breaking up so bad on my computer that I really didn't understand the message. I think he was saying that the most common problems people report are fatigue and headaches - both of which I have in abundance. I'm not sure he gave any advice on how to recover. I have kept track of "crashing" episodes, and I think the takeaway was that when I try to do the normal things that people do, my body says, "Nope." I also know my body has no tolerance to heat and humidity at all. I now hope every day will be cool and cloudy, as that's the only weather I can bare. Also, the stress and anxiety of being ill while I watch the world go by is very, very painful. Socializing is especially taxing. I might have to rest for days if I try to meet up with friends for a luncheon. I know there is no magic answer, as I've been dealing with this for two years and have turned to many different practitioners with no solutions. I'm truly hoping that with time, my body will slowly heal itself, because it seems that is the only hope I have right now. I feel awful for all the others experiencing what I'm experiencing, because the mental struggle is just as bad (some days worse) than the physical. And yes, I have turned to therapy - again with almost no improvement. I feel extremely guilty for putting this burden on my family, even though I know it's not my fault. Thank you for listening and trying to help - I will continue to battle day by day and hope for more answers. If others can get well, then so can I.

This certainly answered a question I was going to ask. I, too, am having a problem with heat tolerance. I have acreage I have to take care of , so I don't have much choice except to go and try to do as much as I can before I succumb to the heat. I live in Texas, so it hasn't been easy. I am constantly having to take a lot more breaks than I used to before I had covid. I also have a fatigue problem. Hopefully this will pass. Of course I'm not getting any younger either. I had covid in February with very mild symptoms. I just thought I had a cold until my ability to taste and smell went away. Those abilities are slowly coming back. I hope they return completely one day. I also got the Moderna vaccines after I recovered. I had the last dose in April. I had my antibodies tested recently. Both the natural antibodies and the spike antibodies are high right now.

Hello Natalie, We haven't heard from you in a few days so I thought I would check in. Have you checked to see if there is a post-Covid recovery program near you? That would be the very best option to get your symptoms assessed and figure out the best recovery program for you. Even if there was none near you a few months ago, more are being added as the medical community realizes how pervasive post-Covid symptoms are.
Please let me know how you are doing, it is so discouraging to feel debilitating fatigue day after day.
Sue

Since I am a post-Mono patient as opposed to post-Covid, I don't know for sure if I would be allowed to enter a recovery program. I also live in a rural area, so I would have to travel. My doctor has told me that I need an expert in infectious disease, but he will not refer me to the Cleveland Clinic, even though I have practically begged him. I just had blood work done, and I see this doctor again next month. If he still has nothing to offer me and refuses the referral, I will certainly be looking for a new doctor. I can't understand why a doctor who can't help me would refuse to refer me to someone who might be able to help. In the meantime, I'm working with a neurologist for my headaches, and also trying different strategies to improve my quality of sleep. So the struggle of trying to get well continues. I would like to get well so I can go back to work. I had to give up my teaching job, but if I could get well, I could still be a substitute. Thank you so much for reaching out and for caring!

How frustrating for you!
At least in early days, a number of the post-Covid programs were using the approach that the original cause of the symptoms isn't as important as finding methods to alleviate them.
Perhaps you can get a referral from your neurologist? Have you contacted the Cleveland Clinic about being seen without a referral?
Sue

I am going to "tag" as many of you in this discussion as I can. Post-Covid symptoms can be devastating for many people. Some of you are in that group: @nataliem @nant @lynnryan @jennifergillan03 @cduncan123 @lmschwartz2 @lweed1956. Sorry if I missed anyone.

Every day, I try to find some bit of research, encouraging news, or a new strategy for helping people heal. Not everyone has access to a Post Covid care program, whether based on location or insurance coverage, and many have long waiting lists.

The good news is, doctors and other professionals continue to study and collaborate, and specialists are beginning to post guidance for our Primary Care Providers.
Here is one such article, which you may want to read and share with your providers. It provides some great guidelines for trying to "get back to normal" https://onlinelibrary.wiley.com/doi/full/10.1002/pmrj.12684
Sue

PS My daughter had Covid, and it took her a year to get over the worst of her fatigue and other issues; she still has "bad days" - the good news is she knows what she overdid, and the bad days only last for a day now, not a week or more.
I never had the virus, but went through a period of pain and crushing fatigue after a 2+ year lung infection, followed by 2 ortho surgeries and a huge systemic inflammatory flare. In 2020 I did rehab exactly as described, and the person who got me through it was an excellent PT. I would say that on 90% of my early recovery days, I had to FORCE myself to do each little thing, but it gradually began to improve. Now I must still be diligent about continuing my exercises and not overdoing. I had to come to recognize it as my "new normal". For example, I played with and cared for young grandsons for many hours yesterday, so today is a "quiet day" for me.

The Cleveland Clinic has stated (more than once) that they will not see me without a referral. I will be seeing my neurologist next month, so I will ask for a referral then. Thanks for the suggestion!