do you have fatigue , muscle aches and shortness of breath?

Yes, I was diagnosed first with ET (essential Thrombocytosis)
Later diagnosed with POTS. Postural orthostatic tachycardia syndrome.

ET is easy to diagnose because your platelet count is very elevated.
My hematologist prescribed Hydrea and my platelet count is finally normal. Hydrea took a long for me to adjust to….

POTS does not present with bloodwork - meds are trial and error.
My cardiologist is still trying. Fludro and Midrdine were tried separately and now I take both together - I’m not better. Onto the next med!

I get dizzy when I stand or bend - I keep a folding chair next to my cat’s litter box and that helps my balance.
If you get dizzy I recommend a shower chair.
Treat the symptoms!

Neither is curable, only managed.
Both are from long Covid.

I had an appt with the long Covid center in my city but he had no additional recommendations. I was disappointed but realized how good my 2 docs are!

I met with the Cancer Center’s dietitian and the Mediterranean Diet and smaller more frequent meals were recommended.

Don’t give up trying to find the right combo of meds and docs.
More research will hopefully produce results.

There are other diseases / syndromes you could have but I only know these 2.
So many symptoms are present in many diseases….

Good luck.

Hi @penny27. Im sure you will find many here with similar responses and I hope this comes across in kind yet optimistic light with my post covid brain issues🙃. Pacing with not even allowing yourself to feel tired is critical. The battery analogy of using up energy but also preventing triggering so many future symptoms is crucial. Also many experience new food/drink reactions so helpful to keep food diary to find your possible new sensitivities which can present in many different atypical ways that many post covid clinics are now offering trained nutritionists to assist. Once you have found your tolerated activity level and food sensitivities, then managing realistic daily life very helpful to lead to hopeful ongoing recovery! Quickest healing to you🌈

Had Covid March of 2020...finally have a doc that is willing to check in to therapies so I am finishing my first month of Naltrexone and am now able to walk up to 2/3 of a mile a day without exercise malaise. I will start a higher dose next week and expect to see the aches and pain get less as if tampers off the inflammation.

Fatigue hits me and then immobilizes me too often. I become short of breath and I have trouble walking. My legs can feel heavy. I contacted Long COVID in April of 2020, after I had been in training at a large international hotel in Ann Arbor, Michigan, and then flew back on a crowded flight. Within a couple of days, I became sick. My NP at the time laughed and said that I didn't have COVID and prescribed Pepto-Bismol for my symptoms. Needless to say, after severe brain fog, ongoing health issues, and 3 negative COVID nasal swab tests, I had a blood test which showed COVID anti-bodies. This month, I finished a 3rd long COVID study at Banner. I really had no support other than giving blood for numerous testing, doing mental acuity testing etc. There was little done in the follow-through to recommend other resources going forward. I do appreciate having this website available.

What dose of Naltrexone are you taking? Didn't help me at all.

buttonwinette - I am taking the 1.5 compounded pill. It took about two weeks to feel the energy inching back but it has helped. Will be moving up the dose tomorrow but going to a compounded liquid for ease of increasing the dose.

Yes, fatigue, muscle and shortness of breath (among other issues) are constant. Between contracting Covid when the U.S. reported only a few cases and current time, have needed several surgeries making "resting" the byword of doctors and physical therapists. Result is de-conditioning and much life-limiting ability. Connecting to all of you helps deal with the isolation of not personally knowing anyone with Long Covid. Somedays I am able to push myself enough to do an errand or two. Other days, I can barely more. Long Covid depleted energy and ability to function as I did prior to it appearing in our lives. This "Energizer Bunny" no longer functions as in the past.

Never had COVID.. but 3 days after NEW Vaccine in 9/24 - down and out - Squeezing Feeling (body Aches & Pains); Severe Chills and having to nap @ Noon after Full nights sleep. Just doing daily tasks are difficult. I was fine before and walk a treadmill for 45 minutes day and did stuff. Docs are at a loss... and poo poo me then ER seemed upset I went there after going to PCP 3 times; Rheumatologist in Boston; Hematologist/Oncolgy/ER... NADA or they don't care?

Het lijkt er op dat je P.E.M hebt. Google het maar eens. Net als ik en vele anderen na Covid infectie. Conditie opbouwen lukt niet maar verergerd je klachten . Bij de minst of geringste bezigheid ga je over de grenzen. Geestelijke inspanning achter je computer kan dit ook triggeren. Ik heb zojuist iets gepost hier over Sirolimus. Iemand had ook PEM en kreeg door Sirolimus zijn leven terug. Zo lees ik ook over naltrexone. En zo zijn er meerdere medicijnen welke ik graag zou willen proberen maar geen prescription voor krijg.

Even a mild case of Covid when you think it’s just
a cold or infection can cause long Covid…

Keep looking for a doc who can help.
Good luck!