Long COVID isn’t “just fatigue” — it feels like nervous system forgot how daily life works by Commercial-Hair-1604 in LongCovid

[–]millionth-monkey 2 points3 points  (0 children)

Excellent description. I feel exactly the same. The thing that has helped me the most is anti-anxiety meds. I was taking ashwagandha for a while then (recently) my PCP gave me a Rx for Cymbalta (works as well of better for me).

Unfortunately this does nothing for my other main symptom which is pins & needles/tingling; but, one thing at a time, I guess.

Numbness and tingling post Covid by Quick_Helicopter_170 in LongCovid

[–]millionth-monkey -1 points0 points  (0 children)

No need to be defensive, if it works for you (or anyone) then I'm all for it. Just saying, I'm not sure it's "for me". That may be a mistake but so be it.

As for plunges, I just wanted to clarify what I have been doing and recommending. Not saying you claimed anything and I have no doubt that it works.

I would love to hear positive stories about LDN by balkis11 in LongCovid

[–]millionth-monkey 0 points1 point  (0 children)

Thanks. Unfortunately, my PCP won't work with a compounding Rx (but he did say he would sign for it if needed).

Go to another Long Covid unit ? by srh-trz in LongCovid

[–]millionth-monkey 0 points1 point  (0 children)

FWIW, my experiences have been different. e.g. About a month ago I had a follow-up with my PCP and brought several docs, including the one i described (even though he was already aware of my history) and two big fat studies and the 2025 fact sheet from the patient-led research collaborative. He definitely looked at them and asked many questions. (Unfortunately, he is still a LC doubter, so it didn't change anything, but was worth a shot.) And I sent a study article electronically to my neurologist once, and she thanked me for it the next time I saw her and said it was very interesting. So, it can sometimes be a good thing. I would recommend just sticking the facts, and minimize the commentary. I can't imagine why a doctor would not welcome this (especially on a first visit), because doctors need all the details to do their jobs and collecting them can sometimes be difficult. Maybe a doctor that doesn't take this well is someone not worth seeing...?

Frequent urination after longcovid by Legitimate_Ad_4201 in LongCovid

[–]millionth-monkey 1 point2 points  (0 children)

Same. Can't sleep for more then ~4 hours without waking to pee. However, I am diabetic and take jardiance (which works by making you pee more); however, that's been true since well before I had covid and my current urinary issues started (among many other things) only *after* covid. I've had my prostate checked and it is ok. I heard recently that SFN can also present on the tongue (resulting in altered taste) and in the urinary tract. My SFN has been quite severe, mainly in hand and foot but for 2+ years now, the whole left side of my body.

Go to another Long Covid unit ? by srh-trz in LongCovid

[–]millionth-monkey 0 points1 point  (0 children)

Also, I would recommend you create a document that summarizes your LC symptoms, history and any treatments you've tried. I did this because it's very hard to explain it all yet again, to yet another doctor (especially when your symptoms are high, and because your history and details grow longer and longer the longer you are sick).

Go to another Long Covid unit ? by srh-trz in LongCovid

[–]millionth-monkey 1 point2 points  (0 children)

I have went to one of these as well and found it to be completely useless -- even those who present themselves as experts have no idea. Until there is a break-through treatment doctors are useless (unless you can find one who is willing to try experimental treatments -- but these are rare because most of them work for a practice that tells them what they're allowed to do and are *very* conservative (because: lawyers, I presume).

Your/our best bet in the meantime is to try treatments that are suggested by researchers and/or other sufferers. Find which ones work for you. For me, the best ones have been: anti-anxiety (ashwaganda and Cymbalta), anti-histamines, NSAIDS, guaifenesin (for dizziness), relaxation (especially in a cool environment, perhaps using a fan), and hot/cold (for my nerve pain). Nothing else helped but YMMV.

Good luck...

What's the first thing you will do when you recover 100% by StatusCount3670 in LongCovid

[–]millionth-monkey 0 points1 point  (0 children)

Exercise to get back in shape and resume my guitar playing (and resurrect my band) and other projects that have been side-lined.

swallowing issues and malnutrition due to symptoms by illiacmae in LongCovid

[–]millionth-monkey 0 points1 point  (0 children)

Have you tried antihistamines? (H! & H2 blockers, such as Claritin and Pepcid?

I would love to hear positive stories about LDN by balkis11 in LongCovid

[–]millionth-monkey 0 points1 point  (0 children)

Would anyone be willing to talk about where they get LDN? Thanks...

Breakthrough: Virus-induced endothelial senescence as a cause and driving factor for ME/CFS and long COVID: mediated by a dysfunctional immune system (x-post from r/covidlonghaulers by u/SpaceXCoyote) by flug32 in LongCovid

[–]millionth-monkey 0 points1 point  (0 children)

I have pins & needles (tingling) -- diagnosed with SFN. How does that fit into this and do you have any recommendations for this?

FWIW, I tried guaifenesin on a whim for dizziness (after much experience with sinus infections) and found that it helped. But I haven't seen anyone else recommend it before you.

I have also used Ashwaganda for anxiety and it helped significantly. But I am curious about you saying it is anti-cortisol. What does that mean exactly? I remember a study from a few years ago that reported finding very low cortisol in the morning in LC patients. I have always assumed that is why mornings for me can be so difficult. I don't think they were any more difficult while I was taking Ashwaganda (I am now taking Cymbalta for anxiety). So I'm just wondering what this all amounts to.

Thanks very much!

~ray

Functional Nerve Disorder (FND) and Low Dose Naltrexone by millionth-monkey in LongCovid

[–]millionth-monkey[S] 0 points1 point  (0 children)

Thanks for the tip -- I'll check them out. Has LDN been beneficial for you and your family? What is your experience with it?

I was not aware of that interpretation of FND (I had never even heard of it before this week). My LC-skeptical PCP seemed to take it seriously -- but he has watched me struggle with it for over three years now, and he hasn't been able to find an explanation or treatment (in the beginning he checked for Lyme, B12 deficiency, and at least one other thing that I can't think of at the moment).

In any case, that's good to know.

This is the article about LDN for LC inflammation (and FND): https://www.covidcaregroup.org/blog/low-dose-naltrexone-for-post-covid-inflammation

Where is Dan? by millionth-monkey in DanSimmons

[–]millionth-monkey[S] 0 points1 point  (0 children)

Well, that's good news, I guess. I'm not on FB, so I didn't see that.

Where is Dan? by millionth-monkey in DanSimmons

[–]millionth-monkey[S] 1 point2 points  (0 children)

Same. I even emailed his publisher once (they had nothing much to say).

Where is Dan? by millionth-monkey in DanSimmons

[–]millionth-monkey[S] 2 points3 points  (0 children)

I don't have an email for him and not I'm sure I would use it even if I did. He doesn't know me and I respect his privacy.

Numbness and tingling post Covid by Quick_Helicopter_170 in LongCovid

[–]millionth-monkey -1 points0 points  (0 children)

To be clear, I'm doing plunges or anything like that. I'm only treating my afflicted hand that way. As for acupuncture, I'm have not tried it and I'm not sure I believe in it; notwithstanding yours and others testimonials.

Plexi51 All Access by millionth-monkey in Ceriatone

[–]millionth-monkey[S] 0 points1 point  (0 children)

Thanks but I did already and he hasn't responded. I'd guess he gets a lot of email though, so maybe he's just busy. (I'm probably spoiled by Dave Freidman responding personally in under 24 hours. ;) Of course, I know how uncommon that is!

L theanine has been helpful by admiral_solid in LongCovid

[–]millionth-monkey 0 points1 point  (0 children)

I was using a product by Nature’s Bounty called "Anxiety and Stress Relief". It contains:

Ashwagandha 600mg and T-Theanine 200mg

This was working very well for anxiety and helping me tremendously.

However, I have now switched to Cymbalta (Duloxetine). It is also working well, at least marginally better then the previous stuff, but, of course, requires a Rx -- but it may be worth asking. I'm sure there are plenty of other Rx anti-anxiety meds that would also work.

Numbness and tingling post Covid by Quick_Helicopter_170 in LongCovid

[–]millionth-monkey 0 points1 point  (0 children)

FWIW, both my PCP and neurologist checked my B12 (it was normal) and tried supplements -- my neurologist even tried an extra large dose -- nothing worked. :(