Im at a loss for words

God Bless You! I believe you. What a brutal virus that happened to our country. So many of your symptoms I can so relate too. It's exhausting. It does gets better....it just takes time. Do you have a long covid clinic or hospital in your area that you can be referred too? Hugs & Prayers....

thank you so much
the long covid centers are already filled up
the worst thing of all is trying to keep up with my children and seeing them have to slow down in things, even helping my 4th grader is challenging when my mind is tired-thats what i call it when i guess my brain starts running out of gas for the day
thanks again for the words

Hi. I've been dealing with Long Covid symptoms since early last July. At first my doctors did not speak of long covid but rather tried manipulating my various medicines to make sure they weren't contributing to my symptoms. For various reasons, I knew it wasn't my medicines, but I suffered and humored my doctors. Eventually, it was apparent that my medicines were not the cause of my growing list of weird symptoms. I felt embarrassed to speak of some of what I was experiencing and had difficulty accepting any of it as "an illness". Eventually, in reading more and more about long covid, it became apparent to me that each of the goofy symptoms I was experiencing could be ascribed to the Long Covid Syndrome. My doctors accepted that this is what was happening, but had no real experience in dealing with it. I was given various meds to help with the SOB/Breathlessnes, Palpitations, and dry mouth. Some of them helped. Eventually I was seen in a Long Covid Clinic at a nearby University. They helped me not feel so crazy and reassured me that all of the things I was experiencing could be related to the Long Covid and had been seen before - that was very validating. So I understand how you have felt and hope that you continue to feel reassured and supported! One piece of advice regarding the fatigue which may help. I am struggling with it too and it is like a battery, I have only so much energy and as I use it up, there is no recharge. Once on empty, that's it, I'm useless. Also, I was told initially to avoid all activity that caused increased heart rate (working out, tennis, pickleball, running etc). The reason being that such exertion can use up our reserves and they're also finding that with long covid, we may not be able to draw on our anaerobic reserves to sustain our energy as we use to (the system has been "damaged"). Therefore, pay attention and try to limit anything exertion. Be attentive to your activities and degree of engagement and try to take breaks before you "overdo"it. Sometimes, you might be doing a bit better and do more only to fade and pay a price for it later that same day or up to 72 hours later so even if you're managing, try to be cognizant of this and structured in how you manage your energy/activities throughout the day/evening/night. I'm sure having children makes it more difficult to follow any structured program, but do the best you can and if you can't, don't get down on yourself. Remember, this is not something you created or have control over so be kind to yourself a find a way to accept it. Do the best that you can, that's all you can do. Ideally, your family will understand and respect what you're going thru and support you as well. Have them read some of the entries on this blog or any of the numerous on-line descriptions of Long Covid or a chronic illness similar to it lie CF/ME so that they may better understand what you're experiencing and see that it's "not in your mind" but something real that many people are going thru and dealing with! I hope that this doesn't sound preachy, not intended to, just trying to share some of what I've learned - I hope it makes sense, if not, I can be more descriptive if desired. The bottom-line, you're not alone, I'm not alone, we're all in this together and these crazy and difficult to live with symptoms are not in our head, but happening to us!

I am so sorry for what you and all the others, including me are going through with this evil long covid. I wish I could offer some solutions for your ailments but I am also into my fourth month of feeling lousy most days. I’m constantly short of breath, have developed hypertension, went into complete heart block, necessitating a pacemaker. Before COVID, I was a healthy, active 78 year old. All my docs don’t want to diagnose long haul COVID - they say there is still not enough data. I am waiting to get into our local post covid clinic but there’s such a long wait list. All I can offer is that you are not alone in this and there are many of us who understand what you’re experiencing. I wish you well - hang in there.

Thank you for your comments. Really appreciate your advice on dealing with the fatigue. I’ve also found if I try to overdo daily activities, it takes so long to recover. Your battery analogy is very helpful.

All my friends and family are struggling with where I have disappeared to as am I . I sang in a concert on Tuesday and it is now Saturday and I have not recovered ! I am in tears with gratefulness that I’m not crazy !! This is REAL ! Thanks

I was having those issues, and my heart would race, pound out of my chest and BP would go up as well. Now, once we found a very low cortisol level, mine was 0.6 and it should be between 4-22, then I began taking dried bovine, adrenal cortex. It helped within about 2 days. However, I have to increase it some days, cause it depends on all stress, mental, and physical. Took me awhile to figure out what was happening, but I must say, the replacement was like a light switch. Inflammation of everything, seems to be a common denominator in all these issues we are seeing today, so I use tumeric 1,000 mg a day along with other adrenal support medications. Cortisol levels aren't something that doctors note that much, its worth a check, and can be drawn with other labs.

52 when my long covid issues began, but then adrenal gland issues began, so in getting tx for that, my long covid issues began to improve. Its been 2 1/2 years now, and looking back, I see inflammation systemically ( all over the body, or moves around) so, I still take tumeric 1,000 mg daily and pepcid. Corticosteroids, eye, nose, lungs, stomach. If I can keep my body from as much inflammation as possible, then my cortex support does its job. I had two heart attacks before we found the cortisol issues.

Initially it was difficult for any doctor to acknowledge Long Haul Covid. I had Covid in Nov of 20021, and long covid came my way three months later February 2022. That makes it 15 months, but I send hope to others, as some of the symptoms have been resolved. I was seeing a profession Alternative care NP overseen by a doctor. Since there is no cure, it is a virus, so I was treated for Epstein Barr, also a virus. It really is hard to discern if it was time or the supplements, but I am so grateful that it seems to on it's way out of my body. My last symptoms are the profuse sweating and hot flashes, not due to menopause--I am 74. I have been given an SSR- Duxlotine 60 mg 2x a day for the hot flashes. I started with 1 dose and it was good for only a certain amount of time--therefore the 2 doses, and it works really well. I saw just about every doctor there was for help on my symptoms. It was a vascular doctor who had seen success with another person, so I took that as a gift since I saw him for something else. Now I am hoping my Gynecologist has some answers. Testing showed I had NO hormones--what a shock. So I will be doing the pellet therapy and have very high hopes this will end this awful sweating profusely symptom. I have become heat intolerant because of it, and will break out in sweat at any time, at home and especially at home when I do housework. I just drip from my face. No point in fussing with my hair as it will be soaking wet shortly. This so awful and embarrassing when I go anywhere. Have faith, and I wish everyone much luck in finding what will work for you.

I have been struggling with Covid issues since I had a mild case in early December 2022.
I have lots of experience in the physical and psychological issues related to what I choose to call extended Covid. One of the previous repliers pretty well covered a lot of what I am going to say.
The good news is that the tachycardia that I had right after Covid stopped after about 2 months. It took about 2 months after that to start feeling more energetic. March was a pretty good month for me and I even had a short dance performance at the end of March. Unfortunately after that my life partner and I had some stressful things come up for us and I subsequently developed a mild case of shingles. That subsided with a course of anti viral medicine and I am recovering from that now. I am having issues with insomnia this past week and I started taking a small dose of GABA for that, and it seems to help so far. I hope there will be no side effects.

I finally got to see the Long Covid doc at Scripps Clinic and he told me that I need to limit my aerobic activities to a minimum and concentrate on muscle building exercise, such as yoga, which I am doing as much as possible. He thinks over exertion caused the shingles to appear. I will start physical therapy soon. I do agree that we have to be really careful to moderate physical activities as we try to recover.

Outside of this advice, the doc came across as pretty negative and really has not helped much at all, outside of making me feel pretty down. Generally, so far, I have found my docs to not be very helpful and seem to be shrugging their shoulders and sort of just glad to see me exit the office. The medical profession seems to be burnt out over this.

The GOOD NEWS is that when I do get enough rest, I do have a fair amount of energy... and I no longer feel completely drained by 3 PM every day. I have also learned to not let daily stress get to me too much, since this will exhaust me and cause set backs. I am measuring my exercise and doing the best I can and still have hope that eventually this will get better! When I think of how I felt just 3 months ago and how much BETTER I feel now, I do have HOPE!
I just wish the powers that be in Washington would direct more attention to the plight of millions suffering from Long Covid!