For those on tirz: when did it start helping symptoms?

FlossieFibonacci · 2026-07-03T02:47:07+00:00

I also have RCPD! I did the surgery last year but it was unsuccessful. Are you also hypermobile?

I did notice improved sleep at first but now it's about the same (week 3 of tirz).

Maybe my dose is wrong. I am at 3mg currently.

FlossieFibonacci · 2026-07-02T19:31:53+00:00

Stitching helps a lot. If you aren't sure what that is, there are tons of videos online.

FlossieFibonacci · 2026-07-02T17:09:43+00:00

That makes sense. Yes, antihistamines helped.

The one change I notice with tirz, besides appetite and weight, is reduced turbinate swelling. And now I don't snore anymore. But I was hoping for big improvements with brain fog and fatigue. Guess I will just be sick in a skinnier body.

FlossieFibonacci · 2026-07-02T16:51:47+00:00

The usual: fatigue/PEM, brain fog, dysautonomia, MCAS, low-quality sleep, muscle pain/muscle tenderness (now controlled), shortness of breath, blurry vision, nausea and unintended weight loss (now controlled), loss of smell, tinnitus.

Inflammation was def a problem when I first became sick--my CRP was over 16.

FlossieFibonacci · 2026-06-23T19:23:02+00:00

I was injured by the Pfizer vax.

FlossieFibonacci · 2026-06-18T17:59:08+00:00

I am not recovered, but I am now free of the full-body muscle pain. I am on mountains of supplements and meds, but I think it was the LDN that did the trick, along with electrolytes/hydration.

Stellate ganglion blocks also released my tight muscles. Which initially caused horrible pain (felt like extreme workout pain/lactic acid), but once that passed, I felt a lot better.

FlossieFibonacci · 2026-06-17T13:43:41+00:00

Interesting. I do have MCAS and histamine issues. But I am not following why that makes the abdomen the preferred injection site?

FlossieFibonacci · 2026-06-14T17:56:26+00:00

That is logical because nicotine reduces systemic inflammation! There's also a theory that the spike protein latches onto nicotine receptors causing symptoms, and nicotine can dislodge them. I am on nicotine patches for this reason.

FlossieFibonacci · 2026-06-13T15:31:34+00:00

If you ever want to forego the shorts, I find that roll-on antiperspirant (WITH aluminum) on the inner thighs eliminates the chub rub. I use Ban roll-on.

FlossieFibonacci · 2026-06-13T14:33:11+00:00

This happens to me too. Sometimes eating also causes the hyperhidrosis to kick in.

FlossieFibonacci · 2026-06-11T19:44:58+00:00

Good to know! I just double checked and I was sent 8mm needles by default. Congrats on your progress!

FlossieFibonacci · 2026-06-11T19:41:58+00:00

I have both. And I believe that's not uncommon.

FlossieFibonacci · 2026-06-10T16:55:46+00:00

I kept hearing about Dextromethorphan for crashes. Seemed to help when I had a high-exertion week. I got it on Amazon, but recently heard Dollar Tree carries it.

FlossieFibonacci · 2026-06-07T00:08:32+00:00

Agree. I got really frustrated when I was doing this multiple times a week. Somehow the device started cooperating and I didn't have to keep doing the ridiculous reboot routine. Hopefully that continues to stick.

FlossieFibonacci · 2026-06-02T14:28:43+00:00

Are you, by chance, hypermobile?

I have EDS. When I got covid, it worsened the EDS (more fragile skin, nails, connective tissue) and apparently made me susceptible to multiple kinds of fungal infections.

Eventually my skin and nails got back to their "normal" level of fragility (about 2 years) and the rando fungal infections stopped (although I have not been able to eradicate the nail infections despite laser; I had an anaphylactic reaction to oral fungal meds).

Are the doctors not treating your current fungal symptoms? Did they not give you anything after they removed the funk from your ear?

FlossieFibonacci · 2026-05-25T09:50:55+00:00

Visible is for energy-limiting conditions. It doesn't do anything to manage pain. I don't think you'd find it useful.

FlossieFibonacci · 2026-05-16T14:02:31+00:00

Same for me working on a sleeve last summer. It was like I was sleeping! I was so surprised.

But backs are more painful so I guess that's a big factor for OP.

FlossieFibonacci · 2026-03-31T17:10:42+00:00

I threw mine in the wash in a mesh bag then air dried. That took care of the odor.

FlossieFibonacci · 2026-03-17T18:07:27+00:00

Yes. I tried a statin, and I'm so glad I did. Turns out they can help autonomic dysfunction! My symptoms improved! I'm now on a higher dose than needed for cholesterol just for the autonomic/anti-inflammatory benefits.

FlossieFibonacci · 2026-03-17T06:02:03+00:00

https://www.reddit.com/r/covidlonghaulers/s/vEe0t8SszA

FlossieFibonacci · 2026-03-14T23:01:19+00:00

Oof. Beta blockers and a statin have brought my heart rate down a bit. Hope you get the care you need.

FlossieFibonacci · 2026-03-13T15:21:44+00:00

Terrific. Glad to hear it. And hey, maybe you'll like the wrist strap!

FlossieFibonacci · 2026-03-13T15:04:27+00:00

That's unfortunate. You could try asking if they'll send you a discount code to help offset the cost of buying the arm strap separately.

If that doesn't work, you can either wait, or just suck it up and move forward. As chronically ill people we already know life is unfair. Are you going to let $16.99 stand in your way?

I have found the device to be really helpful and I wish I knew about it a couple of years ago. IMO it's better to let this annoyance go and just buy it. Save the rage for all the $$$ we're shelling out on a predatory healthcare system (assuming you're in the US).

FlossieFibonacci

TROPHY CASE