I feel like I’m slowly dying and nobody is helping

@suecedar1028 For almost two years, I've had bad fatigue, that, coupled with dizziness, brain fog and shortness of breath, had kept me at home most days. I'm lucky to be able to drive a mile or so to get to grocery stores. My PCP used to dismiss my long covid, but a month ago, during my last visit, he admitted that he now has other patients who have what I have. He gave me some vials of terzipatide, Zepbound, and I gave myself a micro-dose, a third of the 2.5mg vial. My fatigue and dizziness got much worse and I could hardly get around my house and could not drive, so I gave up on GLP-1s as a solution.

In the past two weeks, I've been trying tributyrin and prebiotics, and my GI symptoms are much improved. I'm hoping that an improved gut leads me to less fatigue and other symptoms. And I'm also trying a TENs unit and other treatments on my vagus nerve.

@suecedar1028 As you can see, there are many of us still dealing with this brutal virus. I am going on 4 years. I did not get the vaccine. I still have fatigue, post-exertion malaise, brain fog, joint pain, depression, GI issues...depends on the day. I understand the loneliness and isolation that comes with this. I was so outgoing, worked two jobs at one point and ran every morning. Now, I am in school, online, and even doing my assignments causes fatigue. I miss being around people and yet, there is a part of me that does not want to be. I get tired of explaining why I feel bad. I get tired of people not knowing what the hell I am talking about and saying, "Long COVID? What is that?" I do what I can to advocate. I also try and do my own research into what the studies are saying. You are not alone in this, at least on this platform.

@juniper10 There s nothing worse then NOT beng heard when our syptoms are this dibilitating! ! For now we can stand strong together and hopefully someone, somewhere will get to the bottim of this ? Argh...
Sue

@diverdown1 thank you for addressing and confirming everything that I have been saying for almost 3 yrs and counting. There is some comfort in knowing that I'm not alone yet at the same time, I feel deeply for others that are. I had to read your reply twice before realizing that it wasn't my very own response. If I get another blank stare or confused look from people when I say I have Long Haul Covid, (or better yet in my case, vaccine injury)....I feel as though I'll lose my mind! 🙁

@suecedar1028 I tend to get angry. So, I am and have been working on my MSW. I graduate in August. I enrolled before I got this brutal virus. For the last two years, I have had to do a field placement. I enrolled with the student's with disabilities organization at my University. This is an online program, so class is via Zoom. Field placement is not although there are remote positions. I have asked from the get go for a remote field placement due to feeling terrible most mornings. Did not happen. Then, my second semester of my clinical field placement that began last August, stopped. The agency was a non-profit. In December the Exec. Director resigned and it was discovered that thousands in grant money was missing...unaccounted for. So, in the middle of my clinical placement, I had no placement. My field coordinator and I finally found one in March...yes, almost 2 months into the Spring 2026 semester. So, summer school has started. I have to get 600 hours for this field placement. I do well to get 15 hours in a week. It is as if these people do not get it when I say, I feel terrible, and I am concerned. I have 130 hours to get before August 12. I know that doesn't sound like much, but it is almost 19-20 hours a week. I have been going in 2 days a week from 9-4. I have to get up at 5:00 to take the medicine that allows me to function. So, yesterday, I got really pissed off. I have made an appointment with my students with disabilities coordinator. I am not one to rock the boat, but I have come too far in this program to 1)Not be able to get the hours 2)Make myself even sicker trying to push to get the hours...3)Put up with people that need to know about this virus because it is not going anywhere anytime soon. I can empathize in a way, because I never knew what someone meant when they said, "I have chronic fatigue." I now know VERY WELL what that means. There is also no curriculum, I have seen, that addresses chronic illness. This is good, accredited University and it is a Masters of Social Work program. There is no excuse for teaching students, etc. how to help people with chronic illness, long COVID, MS, Cancer....whatever it is. I am on my soap box this morning. I woke up irritated and feel bad.

Okay. Now for gratitude. I have a place to live. I have food. I have clothes, a car, my dogs, my 2 cats and you people. I am still sober.

You are not alone, I know exactly how you feel. I got Covid back in February 2023. I have been sick since then. I was bedridden for months . I’ve been to doctor after doctor, tests after tests. This affected every part of my body and organs and I have never been the same. There was a couple times I thought I was getting better just to be fooled because BAM everything came back worse.
I have so many symptoms which are too many to list, and I’m getting more even after a year of this. I have just about every symptom that you read in the support group. I switched neurologist, because my original one did nothing to help me. The new neurologist asked, am I seeing a therapist because I might need to. In other words, I’m taking it he thinks it’s in my head. SMH! I have been to more doctors last year and again this year more than I have in my entire life. I even went to U Of M emergency room when I couldn’t really walk and was so weak and they did nothing but send me home. They were useless. Not to wish ill on anybody but sometimes when I’m at the doctors when they’re trying to dismiss everything and saying everything’s fine, I wish to God they would get this, so they can feel what we do.
While waiting for my pulmonary doctor to come in last week, I was talking to a resident doctor, and he is the only one that actually believed, and said he read about every symptom I described and said long Covid is kind of like getting brain damage, and it affects every part of your body and destroys it. He was the only one that was honest, and did not dismiss it. When my pulmonary doctor came in, he dismissed it. I wanted him to fill out a handicap, placard application for me, because he did a temporary one for me last year, but I wanted this one to be permanent. He said. “ well I don’t know if they will approve this and you already check marked permanent on there and not temporary”. I told him very aggravated. “BECAUSE IT’S NOT GOING AWAY.!!!” so he ended up filling it out but I haven’t been to get it turned in yet.
And I understand what you mean about being suicidal because of all this I have no quality of life anymore. It’s a good thing I love my children and grandchildren more than I love myself, so I will continue living in misery for them. Do I think about just ending all this so I don’t have to suffer anymore? Absolutely!! Will I ever try to commit suicide.? Absolutely not, but I wouldn’t be opposed to being hit by a truck.
So just try and hang in there like I am and let’s hope answers will come soon!

@mh10 Same here. I love my grandchildren to take myself out of this world but sure hate living, rather existing, like this. I have fibromyalgia on top of the long covid so I have so much pain. Covid destroyed my digestive system. Hope you are doing better.

@mrgray

I have ME/CFS, long COVID, POTS, and Inappropriate Sinus Tachycardia. I also have chronic pain, but I do not have fibromyalgia.

I just wanted to let you know that I am on low- dose naltrexone, prescribed by Mayo.

My pain has decreased greatly at just 3 mg daily.

It does not work for everyone, but I think it's worth a try.

@drbf Thank you for text. I can't take LDN because I am on Tramadol. My dr. says no. I have a list of supplements I need to purchase but am lacking funds.