Help! Need coping strategies for long Covid diagnosis and symptoms

❤️❤️My sympathies to you, truly! I have long Covid also, and have been sick most of the year of 2023. I wish I had some coping strategies for you, but I am in the dark place, too. I just wanted to say I understand and send best wishes for your recovery soon. I hope someone else will have more to offer you in guidance.
P

I’m sorry for your troubles with long covid, it’s truly a miserable experience for you, me and everyone else going through this. I always read about what other people are doing or what they plan to do but I don’t hear too many success stories. I know from my own struggles to cope that it doesn’t help me to keep going to the doctor because he really doesn’t know what to do other than running tests…I’m happy when they don’t find anything but it’s a huge letdown as well because you’re back to square one. I recently decided to try and work through my symptoms on my own and I noticed that they do come and go, sometimes new symptoms come along and I try to find help online and see what works. In my case the one symptom that I find scary is the palpitations I get and sometimes sweating, it calms down periodically but always comes back, this is the symptom that Omicron left behind and being an older woman with medical problems it can really make me so scared. In time they will eventually find some answers for what we’re going through but in the meantime we have to try and keep moving forward and hope for the best, amen 🙏

Mood and mental health are very important to focus on when dealing with LC. I’ve been sick for a year now. I’ve found it very difficult at times to come to terms as it is so life changing and debilitating. I also find most people don’t understand what you are going through. Even my supportive, loving friends and family cannot understand really. You might benefit from a professional therapist, these folks know about coping skills and can guide you to what might work for your individual life and needs .
I break my day into blocks of time, make a list of need/want to do and pace myself physically. I walk in nature, listen to the birds… look for joy there and “choose” to see it . It not easy many days, it’s a practice. I listen to music and will stream uplifting movies. Limit television and news as I find much of that isn’t healthy.
Write in a journal, just daily thoughts, worries even just doodles. It is a good way to sort our feelings outside of the mind. Reach out to loved ones, meet up for a cup of coffee or lunch and really open up about your emotions (sadness, fear, anger) involved in coping with this. I truly believe if we focus on mental and emotional health, our physical health will improve as well.

A couple books that have helped me stay focused and grateful:

Traveling Light by Max Lucado

Peace Is Every Step by Thich Nhat Hanh

Don’t really know all of your symptoms but I think I have been in the same place. If you gave not tried LDN ,find a Dr that thinks outside the box and prescribes it. It helped my mood ..and pain. Research all you can because we are all different with different symptoms and systems. 😥 Hang in there!

I dont know how anyone COULD cope well with LC. It is terrible. Very few providers know ANYTHING about it and you cant get in to see the ones that do. I bet the patients who post here at this support grp. know MORE th an most providers. The anxiety and depression are hard to deal with. I dont know which one is worse. I made the decision a couple of weeks ago that instead of spending what little energy I have in continuing to try and see a provider such as the closest LC clinic( seattle) I will just manage it MYSELF. I am doing research on my own ( I have had to do this for ME/CFS for yrs. as I am a 46 yr. SURVIVOR of ME/CFS and Fibro. Reading medical journal articles that have been published joining this support group. I am feeling much better I think due to removing myself from a dysfunctional health care system and worthless providers who dont know anything about LC. I am still doing an obscene amount of bedrest but it helps. am sleeping much better and feeling less depressed and anxious. More like my old self. I dont know WHO that other patient was. Wierdest thing is that for the past almost 18 months I didnt even feel like ME. Anyone else feel that way? Not only feeling so incredibly sick and not able to get any medical help I felt like giving up. Since I am NOT someone who gives up I just made a different choice. Removing the stress from trying to get some medical help and just getting discouraged and frustrated with that has helped tremendously. I even now have my sense of humor back which I lost during the time that i have had LC. An less anxious and less depressed. Hang onto HOPE. HOPE got me thru 46 YRS. of Surviving ME/CFS and Fibro. It will get me thru this too.

I caught covid on a bike tour in March. My LC is mostly gone, but my aerobic exercise is still in bits with rest between. Resistance work, like weights, doesn't seem impacted by LC. Avoiding stress and getting enough rest and sleep is important. LC drains us physically and emotionally, and recoveries tend to be long term and slow. My LC hit after covid (I'm 69 and my previous booster was 6 mo before, but got a high viral load from my biking companion). Consider keeping track of what you eat as well, in case covid resulted in any food intolerances (my celiac was triggered 14 years ago by H1N1). After getting covid, I mostly focused on recovery and fun/stressless stuff this year, instead of forcing myself to be well.

Depression &anxiety are just waiting to pounce. Regular designated rest for your brain to clear and regroup!Mayo clinic suggested 5min at the end of each hour........I had to set a timer to remind me.
Stress drains your coping brain skills

Hello K. First question - are you on any new meds that might explain the mood change? Second question - have you considered asking your doc for anti anxiety meds? A lot of us with long covid develop generalized anxiety disorder. Doctors told me I needed to be on anti anxiety meds since covid, but I initially refused, thinking the problem is not me - it’s covid. I’ve lived with covid and covid anxiety for over 3 years, and the stress has not been good. If you’ve gotten to a point where normal coping skills no longer work and you don’t feel right, have an honest conversation with your doctor and see if anxiety meds may help. Covid and stress can each do damage on their own, and together can be more than most people can handle.

Depression from LC is totally understandable and even an often-reported symptom of the disorder. One piece of advice I don’t see mentioned in this forum is that antidepressant medication is an obvious option. It has helped me, and why wouldn’t it? So many are suffering so much, and anything that can help even a bit ought to be considered, it seems to me.

I understand the frustrations with the healthcare system that many here have experienced. But we barely understand LC, and the LC clinics are working hard to understand it. Even if antidepressants address symptoms not root causes, depression is an energy-sucking, soul-destroying problem that we have help for.