This is an old thread but thought I'd chime in since these things can help others.
I had shingles at a fairly young age in 2001. But, others in my family had weird things from that virus: one sibling had chicken pox multiple times (confirmed by dr; this was before the vaccine existed); another had chicken pox, then developed shingles as a pre-teen; a sibling's child got the vaccine, but then developed (mild) chicken pox). All these looked at together are suggestive (to me) of some sort of familial genetic weakness against the varicella virus.
I had a slow onset ME/CFS. The fatigue & cognitive symptoms (brain fog, lack of concentration, word finding difficulties, inability to hold as much in working memory as I could previously) I explained away as stress for a long time (from early 2000s on). These gradually got worse over time.
I had lots of issues with seborrheic dermatitis in the mid to late 2000s, including flakiness in my ears, eyebrows, around nose, as well as on scalp. I still have issues, not as severe, and keep the flakiness in ears, eyebrowns, and around nose in check by using Clinique's #2 tonic (I think that's what it's called) - I think any product along those lines may help simply because they create an environment that's inhospital to fungal processes that underlie.
Started having more serious problems with fatigue & cognitive issues from about 2009, slowly getting worse (but fairly high functioning on the CFS spectrum). Drs still blamed stress, mild depression. But, I really didn't feel depressed so suspicion built.
For many years, I tended to wear cardigans with t-shirts under so I could quickly take off/put on the cardigan. I jokingly said 'my body doesn't regulate my temperature well: if I'm moving, I'm hot; if I'm sitting, I'm cold'. This didn't really improve with the tx for hypothyroidism, so I'm wondering if it's related to MCAS (whether others have this experience).
I then developed chronic idiopathic urticaria (plus dermatographism if not on antihistamines) around 2011. My research found that hypothyroidism was the most likely cause, so got tested. Mildly hypothyroid, but several years of adjusting meds produced no relief from fatigue (PEM), cognitive issues. Started suspecting ME/CFS & got to a competent physician, who agreed. MCAS seems also a factor as various symptoms are consistent there, plus fatigue improves on zantac/zyrtec + allegra.
I don't think I have POTS, at least not obviously. I do find that I lie down a lot, take breaks when I'm doing things around the house. I've thought of this as conserving energy. But I've wondered about whether it's presyncope (MCAS related) or mild POTS. I also cannot fly sleep-deprived (so no red-eye flights) and warm flights can be problematic too. I don't know if altitude exacerbates something. If I can't lie down (as on a flight) and I'm either sleep-deprived or too warm (or both), I start feeling nauseous (I don't think of it as 'faint') and I have the urge to lie down. In fact, on two separate flights, I've done that. In one case, I was in a bulkhead on a 787; it was. There was room to lie down, so I told the person sitting next to me 'this is going to look strange, but I'm ok' and then sat, then lay on the floor, for about 5 min, which helped (flight attendants were doing the meal service so didn't notice). On a different flight, I was very sleep deprived after a long international flight; I had a shorter 2nd flight which wasn't warm (thank goodness, it was actually a little cold) but I was extremely sleep deprived. I couldn't lie down and sat in misery, nauseous) for over an hour until we landed. On another flight, I had warned the flight attendants that it was too warm & I was feeling nauseous and asked them to turn down the thermostat. They didn't. I ended up spending the rest of the flight sitting on the floor in the galley, where it was nice and cool. That helped a lot. On a 3rd flight, I told the flight attendants it was too warm & explained what had happened to me previously ... that time, they listened and reduced the temperature. With flights these days so packed & seats so close together, there are no opportunities to semi-lie to try to improve how I feel.
Thus, I rarely fly, and when I do, I make sure to get an aisle seat with more leg room (which works until they substitute a plane & rearrange all the seating). I'd love to hear if others have had these sorts of experiences on planes.
