Having long COVID, how is your mental health?

Hi @debbie75. We are so lucky here to have your professional informed words and own long covid challenges. I too try to post here as a previous medical admin professional to help others and find the same difficulties with others not seeing and being able to believe the daily challenges and mental health obstacles it creates. So thank you for helping us and only the fastest and best possible recovery to you!🌈

To mbryant1380:

Thank you for providing the link to the video by Dr. Sletten from the Mayo Pain Clinic. Dr. Sletten’s presentation is concise and well-organized. He speaks in a way that is articulate and engaging. He provides a framework that explains why we and our healthcare providers are so mystified by the symptoms we experience. And, why so many conventional approaches to treating those symptoms do not work.

Dr. Sletten also describes a new and different approach that has some success in treating our symptoms. He is realistic in describing the treatment as requiring time, effort, and patience on our part, and the coordinated use of different healthcare resources.

Dr. Sletten’s framework fits my experience of LC Post-Exertional Malaise (PEM). Also, the recommended “Pacing” approach to managing PEM, which works for me.

— Fred

Hi,
Of course! Communities like this we have to help and hold each other up. Most of us aren’t getting it anywhere else.
No I have not, nor know anyone who has unfortunately. But his information makes sense, the fact that a lot of us are not getting answers from test or medical professionals. But what we are experiencing is real! Weather miscommunication with the brain and body and/or inflammation and overactive immune response that basically won’t shut down.
It was very informative for me.

I can feel you, especially today. I have been suffering for 2 years with no taste or smell. I keep being told it’s from Covid, but does anyone really know that for sure? My mind is like a sea saw, one day I’m positive and the next not so much! I have had 7 Stellate Ganglion Block injections that are suppose to bring my taste and smell back, but after 7, still nothing. I’m really loosing hope pretty quickly. I also never get hungry for food. Probably because I can’t smell. Nobody has really ever told me why that is. I guess I have to figure it out on my own. Sorry for the rant, but today is not a good day…

Oh wow, I’m sorry that something that is not only a necessity (eating) but also one of life’s little enjoyments, being able to taste and smell is gone. And you like most of us are doing what we can to return back to some form of normalcy is just not working. My daughter also loss her taste and smell for over two years it’s starting to slowly come back, so hopefully that will happen for you. Also so sorry today is a bad day for you, and vent if you need to sometimes we need to just let it out. Talk about your frustrations maybe it will relieve you a little.
I hope you read @debbie75 comment on this thread, her words were very comforting.
Wishing you healthy happier days that make you smile more. And praying for a complete recovery.

You are very welcome. I really appreciate how Dr. Sletten’s explanations were very detailed, informative and yes very engaging. He really dissects these conditions and how they manifest in other parts of the body as well. And most importantly that these physical symptoms are real, not just “anxiety” like I was told a few times. No the symptoms are making us feel anxious, worried, stressed, depressed, frustrated and even fearful.
Yes pacing also works for me, I don’t experience PEM that bad but the joint and nerve pain, boy oh boy!
It seems like our condition is finally getting recognized, my LC doctor says a lot of grants are now being given towards more studies and trials. Let’s hope…

Hour by hour. Chronic pain takes 24 hour, 7 days a week. I have been prescribed 20mls of Oxycodone a day to function and wondering if my pain management doctor will increase my dose. If I can’t enjoy life at least I have beautiful memories of a blessed life. I’m tired of grieving for the person who I was. I competed in tennis, golf and snow skiing. Water skiing, snowmobiling and yoga were taken for granted…

I'm so sorry for the loss of who you were before covid. I grieve the person I was, as well. It is so hard. Many times have I thought I wish I had died of it rather than having this living death.

Yes, I too wish I would have died of it. Every day is a living hell. I've seen so many doctors, ran so many tests. I think I have PTSD from all this. My blood pressure is stroke level most of the time. 5 different meds and still isn't stable. Never had high blood pressure in my life until I got COVID! Went through chemo and radiation for Hodgkins 10 years ago. BP fine. My weight fine. Now I weigh 107 lbs. Not at all the same person I was three years ago.

I too had Hodgkins Lymphoma. Felt like a drop in the bucket compared to COVID followed by LC. I’ve only had it for 4 months and it has worn me out. I start appointments at the Minnesota Mayo Covid Clinic next week. I hope it helps.