Finally... Some answers

Posted by hutchinsr @hutchinsr, Aug 13 8:16am

I'm a runner and at the end of 2021 I was the fastest I'd ever been. I was 44 years old and could hit the mile in under 6 mins. Within a couple of months, I couldn't get in the 9s without my heart rate getting out of control and my legs basically dying.

Around the same time, I began smelling things that weren't there. I thought I was going insane. No doctors could tell me what was going on so they'd just treat the pain I had begun to experience in my back and legs, which did nothing. I underwent shots and PT and cupping and massages all to no end. Nothing helped. I just accepted that I was getting old and this was life now. Pain, fatigue and slowness.

Three weeks ago, I ran a mud run with my daughter and my heart rate was hitting 205 consistantly. If you know anything about age and heart rate, you'll know that's way too high for a now 48 year old. I scheduled an appointment with a cardiologist to get checked out.

All checked out fine but they asked me what other symptoms I had. I began to list them; pain (widespread by this point), exercise fatigue, high heart rate, odd smells that didn't exist, aversion to cold touching me, etc. They told me about long COVID and I began to read. This was it. My breakthrough.

I saw my PCP, who doesn't believe LC is a real thing. I moved on. I went to a neurologist, also didn't believe it's a real thing. Now I'm with a pain specialist and they have me on a variety of nerve drugs that seem to be making a dent. I can sit in my chair at work and not just be in excruciating pain all day because my back and hips hurt. I also seem to not get out of breath when climbing stairs now.

Most of all, I feel like there will be an end to this and I can enjoy running again. I know that I may not regain EVERYTHING but at this point, I'll take anything. I'm glad I found this group. I've been learning so much and I'm appreciative that my symptoms aren't far worse, as they could be.

I look forward to continuing to read all of your experiences.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

sweetwater9 | @sweetwater9 | Aug 18 4:52pm

In reply to @donnamac "I had PVC's and SVT's PLUS bouts of A-fib day and night, 24/7 for one solid..." + (show)

Did the Motrin stop your symptoms immediately or one year later?

sweetwater9 | @sweetwater9 | Aug 18 4:58pm

In reply to @diverdown1 "I was also a runner and very active. June of 2022 (after having Covid in January..." + (show)

@diverdown1

I was also a runner and very active. June of 2022 (after having Covid in January and March), I woke up one Saturday and felt absolutely horrible, poisoned, fatigued...I felt so bad that I went to the doctor, which I never used to do. I did not get the vaccine because the only vaccinations I have ever gotten were the ones my pediatrician gave me when I was little (measles, etc.) I have had this Sh*t for 3 years now. The doctors knew nothing of Long COVID. I had to do my own research on my own blood work. EBV reactivated, RA Igg, Parvo reactivated, ANA Titer, all these things were foreign to me. I never knew I had Epstein Barre Virus but apparently at some point I did. My PCP sent me to an RA doctor. She was not very nice and even rolled her eyes at me when I told her I thought it was Long COVID. I did not go see her again. So, having seen my PCP several times, I believe she believes it is real, however, prescribed 800 mg Ibuprofen and also another anti-inflammatory (can't even think of the name now...brain fog) but both are bad for the kidneys. Anyway, my shrink has been the most helpful. I take 4 medications in the morning to be able to function during the day. Gabapentin, Vyvanse, Naltrexone and Cymbalta. At one point in 2023, I applied for social security disability. Turned down because I am in graduate school, remotely. I started that journey before I got sick. I am able to do the school work, however, the internship/field placement is a challenge sometimes. Luckily, I am able to do some of that from home. On another note, I am a recovering alcoholic/addict of 7+years. I have been fighting addiction since the age of 14 years old. I finally got sober in 2017 (47 yrs old). I was the healthiest I have ever been with running daily, weights, working full time, living a good life sober. I was heavily involved in 12 step groups and had many people in my "circle." When I got sick, I had to quit my job, although I was able to stay in school and registered with the students with disabilities program at the University. Many people in my life just do not either believe that Long COVID is real or they are just not able to empathize. I feel very isolated. I have always been a person that loved being around others, going places, camping, SCUBA, hiking, etc., and now I do my school work, go to my field placement (16 hours a week) and that is it. If I did not take my meds in the morning, I would not be able to do much. I went through a period of hopelessness, hence the Cymbalta. I get tired of telling people, "I don't feel good," or trying to explain post exertion malaise. I do have hope now. This community has helped me so much as well. I do not feel as alone in this when I come and read what others have found helpful. What I have found helpful is that I remain in the moment or the day. I went to my mother's yesterday, she has dementia. I was there for about 7 hours. I woke up this morning feeling terrible. Emotional as well as physical exertion, I pay for the next day. I can't think about that all the time. I have to just do what I can and feel like doing at the time. I do try and think of things I am grateful for. I have a year of school left and then I will have my master's in social work. That helps my mind. I am still sober, as without that, I would not even be here to write this post. I want to be able to exercise again. I do what I can when I feel like doing it and that is usually about an hour or two after I take my meds in the morning. So, enough about me. I just want to tell you that I relate, hope that you hang in there and to thank all you people in this group that continue to spread hope and kindness.

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One certainly finds out who your friends are.

hutchinsr | @hutchinsr | Aug 18 6:06pm

In reply to @kyengler "Was your pain joint or tendon specifically? They have called mine psoriatic arthritis, but none of..." + (show)

It's pretty much full body at this point but the MAIN pain felt like IT band issues. I had shots for trigger point and sciatica and they did literally nothing.

suefish | @suefish | Aug 18 6:24pm

In reply to @suefish "I know EXACTLY what you mean about the answers. It’s so f-ing frustrating. Have neurologist in..." + (show)

Horrid visits with neurologist. Essentially no inclusion of Long Covid. Most emphasis on dementia. I am f-ing angry.

law59 | @law59 | Aug 19 9:39am

In reply to @suefish "Horrid visits with neurologist. Essentially no inclusion of Long Covid. Most emphasis on dementia. I am..." + (show)

Hi @suefish. So sorry you had “that” experience. They obviously have no training or experience with long covid. May I suggest you contact your healthcare systems physical therapy dept and ask phone consult with Neuro Pt who hopefully can share better avenue of getting care🤞Speech therapist and recent neurologist for me was “that” experience and this other avenue enabled wider range of techniques for the slightest improvement to build on throughout body symptoms! Quickest healing to you🌈

suefish | @suefish | Aug 19 1:24pm

In reply to @law59 "Hi @suefish. So sorry you had “that” experience. They obviously have no training or experience with..." + (show)

Thank you SO MUCH!!

sanDGuy | @sandguy | Aug 19 3:17pm

Since several of you have referenced not being believed by physicians, or even disbelief that LC exists, here are a few recent articles in journals that reference the prevalence of LC:

https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-025-22987-8 May '25
"Long COVID affects 7.2% of US adults, with higher vulnerability among women, middle-aged individuals..." (390,000 subjects)
(n.b. that 7.2% of the general population, not just those who had Covid!)

https://www.nature.com/articles/s41598-025-10120-z Aug. '25
"Of 25,000 participants who had Covid, 20% went on to have LC"
Also of note (for the skeptical physician):
"Post-viral syndromes in the coronavirus family were observed in previous diseases related to coronavirus, such as severe acute respiratory syndrome (SARS) and Middle East respiratory syndrome (MERS)"

https://bmjpublichealth.bmj.com/content/3/1/e000269 Apr. '25. 40% of Health Care Workers, (meta-study)
"The pooled prevalence of long COVID among HCWs who had SARS-CoV-2 infection was 40% "

Hope this is informative, and useful for your "arsenal"!

rstern99 | @rstern99 | Aug 21 9:30pm

In reply to @bigj "What help me was B1-B12 vitamins had real BAD brain fog getting better finally after 4..." + (show)

Is b1-b12 the name? Or is that b1 all the way to 12 you are taking?

bigj | @bigj | Aug 22 9:40am

Hi, I was only taking vitamin
B1 and vitamin B 12,
I readjusted . All I really need is just B12.
B1 was too strong
Hope this helps

lkirnbauer | @lkirnbauer | Aug 23 8:43am

In reply to @suefish "Horrid visits with neurologist. Essentially no inclusion of Long Covid. Most emphasis on dementia. I am..." + (show)

I live in the Chicagoland area and went to see the Chief of Neuro and Infectious Disease at our Northwestern Hospital in the city of Chicago. He basically told me that I won’t be getting my taste and smell back (after having had Covid in December of 2022). He said that after 1 year we won’t get those senses back and that the olfactory nerves don’t regenerate. I left his office with no hope at all! What irritates me, is that he’s still doing research on Long Covid and for the life of me can’t understand why he told. ME that! How does he know if he’s still doing research? I’m angry too!

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