Help! Need coping strategies for long Covid diagnosis and symptoms

I have had long COVID for 3 years. Everything that Long COVID has caused in my body is non curable. I strongly suggest working on getting into a long COVID clinic. I am not who I used to be and am not going to be who I used to be. I have somewhat accepted that. I no longer try to do what I did before. I have found things that in my very exhausted, sore, sick, etc state I can do that make me happy. I do breathing exercises that help calm me down. I can't take anti anxiety medicine because of the other medicine I take. I used to take an allergy pill , exercise, eat well, do things with friends, family and grandchildren. I am starting to do some of this, but very limited and catered towards my capabilities. I have learned that I need to take care of myself first. I no longer feel guilty about this. I have to have a calm peaceful environment. I am able to work from home, I can't drive due to the insane dizziness and passing out. I wear an abdominal binder which does help but does not fix this. Long COVID caused me to have POTS. I also have neuropathy, CRPS, gastroparesis, and on and on. I am trying to focus on what is good in my life instead of all the miserable changes in my life due to Long COVID. If I could take anti anxiety medicine I would. I am able to work from home because my health issues caused by Long COVID are covered under the ADA (Americans with Disabilities Act). My CRNP at the Long COVID Clinic has to complete these every so often. My supervisor was not happy about this but she has finally accepted it. I wish I could be better and back in the office setting, but I can't. I am a survivor. I am not going to let this destroy me. It has taken me a while to get the point of acceptance, to develop coping skills and to understand that I can't fight this but I can do things to mitigate the symptoms. This was not easy. I hope you are able to find a way to calm your anxiety and manage living in your new normal.

What did Mayo Clinic recommend?
Curious as to their advice.
Feel better!

May be a vitamin deficiency? One of my new meds was making me feel awful - it can deplete the body’s B6, so my neurologist suggested B6 100mg/day. It helped me immensely and acted fairly quickly. I’m no longer on that med so no longer taking B6, but it helped me at that time.

Hi Diba7290,
I understand what you are going thru, I am going thru this as well. The good news is that LC is now considered a disability and is covered under ADA so your employer must by law accommodate your disability. I got a letter from my primary doctor asking my employer to allow me a flexibility in working from home and office due to my medical condition. I go to the office twice or once a week and work from home for the rest of the week. It would be illegal for your employer to fire you or not accommodate you because you could sue them for discrimination against your disability if he retaliated, just get a letter and you are safe! Good luck! ❤️

Thank you so much for sharing!!! I also got a letter from my primary doctor and getting an updated letter every 3-6 months. Sometime my pulmonologists writes it too. It has been two years now after 5 months of hospitalisation due to Covid. I also accepted my situation and limitations but I am fighting and doing what I can to move me revocery forward. I am improving but very very slowly. Doing physical therapy helps a lot too.. walking daily and focusing on myself to stay calm and peaceful at all cost. I’m taking only one anxiety pill daily 10mg and feeling it really helps a lot… Learning how to pace myself and stopping when I notice the first moment of increased anxiety or stress was a challenge but I’m learning. My body used to punish me for overdoing it and it would put me to bed for 5 days at a time when I wasn’t able to even think straight due to extreme exhaustion but now as I’m learning to stop immediately as soon as I notice a slight discomfort I am able to manage not to overdo .. Now the extreme exhaustion lasts only one day .. I believe the brain has the amazing capability to rewire itself and I am determined to continue all therapy I am able to handle to help the brain learn new detours.. Good luck and God bless you!! 🙏

Hi, Got a bad case of Covid in September, despite being vaccinated. I took Paxlovid the first two weeks. The symptoms ranged from everything to Headaches, runny nose, upset stomach, fever, body aches, lack of taste and though my symptoms got better the lasting effects of anxiety, headaches and breathing problems along with a huge case of fatigue. I was told I have long covid now, since it is November and I still have problems. The depression and anxiety is also prevalent. Also, I have slight tremors now. .. I am really frustrated. I have not been able to work. I am semi-retired and was working part time at a dress shop. I am with Kaiser and they do not have a "long covid clinic" so to speak, so the Mayo clinic cannot help me. Also, how does everyone cope with not being able to work and financials? any ideas or help would be appreciated.

I'm amazed by the diagnosis I read here. Began having really significant long covid symptoms about 3 years ago. Head to toe, and still not sleeping is so hard, because I need to work, and carry on. I live in a rural area, and nobody, no doctors want to even answer any questions concerning long covid, even though we have been dealing for years now. No help out here, and what's most difficult at this point- my family thinks I'm nutz. I was diagnosed with adrenal insuff. which did get me on track with dried bovine adrenal gland- which utterly saved my life, popped EKG of Anterior myocardial infarction, and possible Inferior myocardial infarction, which was flat ignored by two Cardiologist. I was very active, good weight, good health, worked full time as RN for 30 years, and they just flat refused to explain why they ignored this. Now, they did suggest I go on a channel blocker, statin, and BP medication- and when I showed apprehension, I was dismissed. Literally. Years later after slathering my abd, and adrenals/ kidneys with Castor nightly for the last 6 months, Ive now been able to titrate from 1,000 mg of bovine gland twice daily to 350 mg maybe once every 4 or 5 days- high stress will get me sometimes. This has done nothing for my very heavy and creepy crawly feeling arms and legs. Feeling alone and misunderstood is very isolating- but my eyes are on the skies. Looking forward to CT in January, and I fully expect that the cysts on my Liver and adrenal glands will be gone!!!

Addingtons was their best guess but never formalized it. I will say, that Castor oil has straightened out all my digestive issues, and I don't even have heart burn, constipation, or lose stools anymore. I get my last jaw tooth removed sometime in Dec. I hope. This should help with very painful sensations in my jaws. My cardiac symptoms quit after starting the gland, thank God, because wasn't sure how many more violent attacks I could survive. My BUN is still up there, and my Lactic Acid is very high- any ideas??? Stumped in rural Oklahoma.

Dear dmlindeman,
I am so touched by your post, particularly when you acknowledged how taxing it is to try to find a physician that can be of help. My daughter has been suffering from LC all year. She has had COVID 4-5 times (weakened immune system due to brain injury and constant head pain since she was a teen. She's now 43). The fact that she can't work and had to get Medicaid only compounds the problem because so many doctors do not accept it. Even trying to find a decent GP is like trying to find a needle in a haystack. We live in N. VA (close to Dulles Airport). Her pulmonary issues caused her to nearly loose consciousness and she fell as a result which resulted in a hip injury (torn ligament) and 4 bulging discs. She will likely need surgery for that, so her situation keeps getting more challenging. But we are trying to focus on the immediate issue of her hip and - like you - deal with the rest on her own as best as she can.
I commend you for hanging in there and for doing whatever research you can.
I would appreciate you letting me know of any medical journals / websites that you find are credible and helpful.
It can get discouraging; I pray daily for people on this board. How I wish I could carry this burden for her. like many of the people on this board, she has gone through so much over the years. God Bless everyone. Any info you can provide would be greatly appreciated. Virtual Hugs to all.