I recently received a solid diagnosis of PEM likely from long Covid (compounded by other respiratory illnesses), plus a balance disorder called MdDS that drains extra energy.

As an unreconstructed optimist, when I feel OK I assume life is back to normal and act accordingly—not a great idea.

Since I want to live as normally as possible, I need to figure out my "energy budget" to pace myself. How do others do this? Trial and error seem slow and risky, so any tips or pacing tricks would be hugely appreciated!

I am going on 6 years of long COVID and have had so many symptoms I can barely count them all. I have been diagnosed with many things including peripheral neuropathy ( I have no feeling in my right arm upper chest and upper back) , pots , gastroparesis, HS, AS , diabetes and more . I’m wondering if anyone else has experienced a period for months ? I have had it now for about three months . It’s older blood and I’m getting the cramps and everything else that comes with having one . I don’t know why I’m experiencing this and want to know if anyone else has had this symptom! Please please let me know . I’m freaked .

Hi everyone,

I’ve been diagnosed with fibromyalgia about 3 months ago, with LC about 1 year ago (tho I got sick 2 years ago)

I’ve been taking LDN for about three months now, this is the one treatment yet that I’ve started and improvement happened.

Overall I haven’t experienced many side effects. I take it at night, and honestly there’s only one side effect—but it’s the worst one I could imagine, especially because I’m a singer.
I’ve developed persistent throat inflammation.
I started at 0.5 mg and increased my dose by 0.5 mg roughly every week (sometimes a little longer). I’ve now been on 3 mg for about two and a half weeks, and since reaching this dose, the throat inflammation has become much worse.
I saw an ENT specialist who performed a flexible laryngoscopy. He said there wasn’t anything seriously wrong structurally, but there is definitely inflammation. He prescribed several things, including artificial saliva.

The main issue seems to be severe dryness of my throat and mucous membranes. I already had dry mouth before starting LDN because I also take ADHD medication, pregabalin, clonazepam, and trazodone at night—all of which can cause dryness. My guess is that LDN has made this problem significantly worse.
For the past week I’ve been doing everything I can: throat oil spray (Larimax), artificial saliva, Iceland moss lozenges, lots of inhalations/steam treatments, Octeangin, anti-inflammatory medication… literally nothing has helped.

I’m also trying to cut back on smoking as much as possible. It’s really difficult because I’m not actually addicted to nicotine—I’m addicted to the habit of smoking itself. Unfortunately, I still end up smoking, but no more than four cigarettes a day.
I’m incredibly frustrated because I can actually see the benefits of LDN, but I honestly don’t see how I can continue increasing the dose when it’s affecting my throat like this. Singing and my band are my life. They’re the one thing that’s keeping me going right now. It’s what I’m holding on to. And LDN seems to be taking away the thing that’s most important to me.

Has anyone else experienced something like this? If so, did anything help?
I’m considering reducing my dose back to 2.5 mg, but it will be hard because I function so much better on 3mg, when you don’t count throat inflammation.
I definitely had some throat irritation at 2.5 mg as well, but it wasn’t nearly as bad as it is now at 3 mg.
I’d really appreciate hearing from anyone who’s dealt with something similar or has any advice.
Please help.

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