I don't know what to do anymore

Covid can trigger some illnesses with your symptoms, namely fibromyalgia and PMR. Have your drs at the U of M mentioned this? For over a year I thought I had long Covid, but have now been diagnosed with fibromyalgia. I have an appt at a pain clinic in two weeks and will ask about low dose naltrexone, a newer treatment for chronic pain that doesn't have withdrawal issues if you want to stop taking it. I am also going to ask about getting a medical marijuana card.

Yes Kate you’re absolutely right! There’s a phase II trial underway with a treatment called BC 007 in Germany! This seems like the real deal! Look it up on the internet.

You might want to get tested for gastroparesis.- slow emptying of your stomach. I was tested for everything after Covid and finally they found that this is what I have. Trying to attack with diet, but just at beginning of my journey. Like everyone else, just want to feel better- normal!

A layperson’s explanation of the dilemma as a long hauler advocate...
Two and a half years later and too many in and out visits to physicians who informed me my tests are normal, I remain placed in the boxes from medical schools that call neuropathy neuropathy and fatigue fatigue. Every other symptom post Covid retains a familiar label with either standard treatment to address the issue or no treatment at all because the contamination by Covid prevents an out of the box approach.
This is understandable, save for the fact that providers are unaware of up to date research findings and really appear to be too overwhelmed to re-educate themselves. It appears easier to pass patients down the line to another “specialist” who might be curious enough to go the extra mile.

Numerous research articles have suggested presenting the information on their visits. Personal attempts have failed to ignite the interest I had hoped to receive and it’s rather professionally shameful.

So, as I have viewed on internet long hauler interactions, it’s self advocate, do your own scavenging for current information and hope that you are lucky enough to happen upon articles like, “A Review of Cytokine-based Pathophysiology of Long COVID Symptoms.” This particular article was so comprehensive and validating regarding my own discovery of cytokine over-expression as most likely a main culprit in all that is insanely occurring since the invasion. Now I am cytokine obsessive. I am concentrated on discovering all I can to address my current and unending issues...but definitely way ahead of where I was 2 1/2 years ago when I contracted Covid.

As an example, I am currently using the research on famotidine (Pepcid) as a cytokine calmer, if you will. I will do this for two weeks to see whether or not there is any impact on symptoms. With this example, I also state that no one should follow anything I say without approval by their doctor. I am just not willing to wait for any doctor I have seen to catch up with me. I will continue to book appointments with new doctors as I regularly do to see whether or not they reached the point of thinking out side of the box of med school labels and into the virtually unknown Covid realm that might in fact offer some newer insight regarding the symptoms of the moment. Permit me to fantasize for all of us and imagine the fatigue...the worst of the worst.... has found a cure!!! Meanwhile, I don’t do coffee, but a can of V8 Energy 10 cal drink amazingly kickstarts my day and I move and function. Woman’s got to do what a woman’s got to do!

All of my bazillion tests are normal. I am not on any medications. BP normal. Blood sugar normal. Cholesterol normal.
Covid residuals:
tingling and numbness in lower legs,
bottom of feet (awful) BUT no
pain they talk about with non Covid
neuropathy
Weakness in legs
Equilibrium issues
Osteoporosis onset post Covid—-
research supports causation
Bursitis/tendinitis- onset post Covid
(horribly painful)
Extreme phlegm, constant runny nose
Attacks of itching and hives (in remission
since famotidine—common
usage as an antihistamine. My focus on
cytokine involvement and
famotidine outside its own
“box”....aka...off label).
Problem is that doctors are too susceptible to using age as a framework for treatment. We don’t all fit in the “old age” box.

I take 20 plus supplements that I have incorporated as I discovered their affect on Covid issues and inflammation. Whereas I was virtually non functional in the early months of my Covid experience, I am functional with my symptoms. I exercise daily. I was always an avid (obsessive) exerciser ...weightlifting daily 10, 15, 20 lb weights. I have to moderate now, but am determined to keep doing the repair work. It’s horribly frustrating at times but I’m a firm believer that you are your thoughts. “Think lovely thoughts” and get in gear to make some kind of progress today. Doesn’t have to be big.

If nothing else for the day, read the article I mentioned earlier, “A Review of Cytokine-based Pathophysiology of Long COVID Symptoms”. Just Google the title. Or give it to your doctor.

If you can get them to do a cytokine panel it might just reveal useful information for calming the out-of-wack cytokine levels. Should be a standard test by doctors seeing long haulers. Ya think!! There are meds to treat and natural supplements. I do the later....curcumin, piperine , plus the famotidine.
One trick...keep moving. To the mailbox and back is better than laying in your bed day after day. Move it. Undepress yourself with hope.Negative thoughts rob you of your abilities to get done what needs to get done.

I try and practice what I preach. It’s really difficult at times..But I’m giving it my best shot. Don’t permit tomorrow to be the same as today. Make it better for yourself.

Ginger seems to be calming for me.

The medical community does have much to learn about long Covid. I had Covid last September, took paxlovid that really helped, but at times I still get the feeling of exhaustion.
Taking into account that I’m getting older and have a couple of minor health issues I still don’t know why the feeling of tiredness still exists.
I’m now walking 3-5 miles each day and that seems to help.
Good luck to you.

Well here we are what do we do, I had the original covid November 2020 and the 2 vaccinations then omnicron August 2022 never felt well after first covid .Feb 2023 lc hit me hard stomach pain,abdominal pain,massive gas going up threw my throat,nasty sticky flem in the back of my throat,brain fog lost all confidence developed glaucoma, blurred vision,nogual on my thyroid ,sludge on my gallbladder horrible headaches that go down back of my neck into my shoulders,muscles hurt joints ache heart pain breathing problems I research all the time especially overseas like in Italy ,they are starting to open neurological clinics just for long covid patients, I get alot of good information from Thailand medical news, they say country's even the good Ole USA covering up the long covid dilemma. After I lost 25 lbs I thought I was dieing I talked to a nurse one day and this was her advice she said to start doing protein shakes two to three times a day good protein with collagen peptides mineral supplements fish oil coq10 grape seed,vitamin b,d as far as I'm concerned ,covid has destroyed my nerological system what controls everything in our body's, our brain and our nerves,by the way according to the article I seen the headaches and stiff neck pain, mimic encephalitis I have had 2 brain scans because of this.

Thank you so much for your reply and for your advice! I've had a few people recommend acupuncture to me. I'm definitely going to have to do that. I'm so sorry you have been going through a tough time yourself. You are not alone! Thanks again for your reply 🙂

Thank you for your reply! I am definitely going to need to mention the PMR and fibromyalgia at my next covid appt. I know I had bloodwork done over a year ago to check for inflammation and autoimmune diseases, but nothing came of it. My inflammation was definitely elevated at that time; I can't imagine what it is now. I unfortunately can't take much NSAIDS to try and help with inflammation because they reduce the effect of beta blockers and I'm on propanolol. Thank you for your advice though, I'm going to doctor to my doctor for sure! And I wish you luck with the medical Marijuana card. I wish so much it didn't make me anxious and paranoid, otherwise I would definitely be looking to do that myself. I'm glad it works so well for others though! I think it's all about finding what works best for yourself specifically. I've noticed in many threads that some things work well for others, and others not so much. It's just a matter of trying anything I think and fighting to find what works. I really appreciate your advice so much 🙂

Thanks so much for your reply. I did see a rheumatologist at the VA last year and unfortunately it didn't get me answers I was hoping for. I honestly feel like I'm much worse off than I was last year, so I might ask to be seen again. I also saw a neurologist at the VA last year and they were so unhelpful and didn't seem to be pushing to do much of anything. Thats when I gave up on the VA and decided to seek Healthcare through M Health and its been a night and day difference. I saw a new neurologist and he figured out my problem at my first appt. I think I'm definitely going to try and see a new rheumatologist at M Health. And yes, I am part of the U Of M post covid clinic 🙂 I will pray for you as well, thanks so much for your reply. Hang in there!