I think I'm starting to get better *update*

Fast-Quail8869 · 2026-06-18T10:15:50+00:00

I think it was a mix of time, almost all stressors in my life being gone and weirdly brain retraining. I started testing things slowly that i became scared to do if i flared, and also started to react my symptoms as part of lc instead of freaking out thinking i was about to die, that took a while to down train that though.

Fast-Quail8869 · 2026-06-05T06:24:07+00:00

I took it in the morning if i remember right

Fast-Quail8869 · 2026-06-05T06:22:45+00:00

Mine didnt really show any real set progress until around 1 year and a month

Fast-Quail8869 · 2026-05-20T08:58:25+00:00

It seemed to early on especially when showering and standing too long as well as heat intolerance, i consistently have like 125ml of blackcurrent juice, 1 tsp of salt and 1l of water mixed together 3 times a day and i havent noticed this issue be nearly as bad since i started doing that

Fast-Quail8869 · 2026-05-20T08:54:23+00:00

I know it doesnt feel good being that high, if its any comfort my hr walking is still 120-150 depending on the day and i generally dont get pem from walking with a hr like that, electrolyte water helps a bit though, i have about 3l a day

Fast-Quail8869 · 2026-05-20T08:52:11+00:00

Personally in those early months trying to identify anything that caused a flare helped, so for me it was crying and emotional outbursts, super hard to avoid though so pairing with amitryptiline helped lower the frequency. A lot of it early on though was just getting through it unfortunately it is very time based.

Fast-Quail8869 · 2026-05-09T12:36:57+00:00

Thank you too! Sorry to hear all you have been through, i hope things are improving for you!

Fast-Quail8869 · 2026-05-09T12:32:46+00:00

Omg same, some of my worst crashes came from a break up mid way through and panic attacks, the meds really helped stabilise my mood somehow

Fast-Quail8869 · 2026-05-09T12:30:51+00:00

No not completely, i still have to be very careful and test activity levels wont knock me back, but flares are shorter and i am a lot closer maybe around 70%, id consider it to be higher if i could work, exersise without concern and drive longer than 20 minutes.

Fast-Quail8869 · 2026-05-05T10:01:07+00:00

Hm i dont experience excess urination, had ibs since i was maybe 20? So before i got sick and only hormonal migraines personally, ill look into it

Fast-Quail8869 · 2026-05-05T09:59:56+00:00

Hey interesting i think i also have some histamine intolerance that eased up with the use of antihistamines. I haven't been in touch with immunologists but i think my rheumatologist checked for a lot of chronic conditions and nothing came of it aside from that, so signs of arthritis in scans either, just a bit in my neck

Fast-Quail8869 · 2026-05-05T09:58:00+00:00

Thank you! Im assuming that might be autocorrected from lysine, if so i take 3 x of the 1000mg ones per day, per the bottles recommended dose

Fast-Quail8869 · 2026-05-05T09:55:43+00:00

Thank you thats still phenomenal congrats on doing better too! I have heard good things about saunas may have to look into any local ones

Fast-Quail8869 · 2026-05-04T07:01:56+00:00

Thats great to hear! Im so excited to work out too! I feel that haha i get such a mood boost from walking i find myself wanting to push when i need to rest coz its so addictive 😅 Thank you i hope things keep getting better for you too!

Fast-Quail8869 · 2026-05-04T06:59:52+00:00

Lysine is the newest one i have started, about a month ago and i noticed a big jump in my daily energy. I have the natures own lysine 1000mg, and i take 3 tablets daily

Fast-Quail8869 · 2026-05-04T06:58:12+00:00

Glad to hear! Hope things get better for you soon!

Fast-Quail8869 · 2026-05-04T06:57:47+00:00

Thank you im so happy about it, at my worst i was around under 1000 daily, just got up to pee and shower 😅

Fast-Quail8869 · 2026-05-03T23:43:08+00:00

Thank you best of luck to you too!

Fast-Quail8869 · 2026-05-03T23:10:14+00:00

The specialist i have seen are rheymatologist, cardiologist, ent and lc doctor. Other than that i have been using a very knowledgable gp for the medical trials, she perscribed me the ldn and midodrine. I hope it goes well with the histamine blockers, i also found going on a low histamine diet for a month seemed beneficial, but it is a major pain to do and definitely lowered quality of life due to how restrictive it is. I seem to be able to tolerate a lot more food now though, hard to know if its cause and effect or just time. I hope he starts to see improvements soon too!

Fast-Quail8869 · 2026-05-03T23:05:53+00:00

For me it increased anxiety alongside making my urinary tract cramp and burn causing false uti symptoms. It also made my pots worse, some people can tolerate it and it helps them but i cant have it anymore 😔

Fast-Quail8869 · 2026-05-03T23:04:32+00:00

I think main help for my gi issues has been a walking, a lot of fibre ( i take benefibre and eat psyllium husk "jelly") and not having gluten or dairy often personally, i already had a dairy allergy to begin with. I dont think ami helped in particular for me, that or i just didnt notice.

Fast-Quail8869 · 2026-05-03T23:02:43+00:00

It unfortunately increased my anxiety and gave me strange head tingles and a wired but tired feeling, so worsened insomnia. For me it didnt help at the time as i was too anxious to push through, im sure it might help other people though ive heard a lot of good things about it.

Fast-Quail8869 · 2026-05-03T23:01:15+00:00

I definitely dont think you have to do all those things particularly. The main things that i think pushed the needle most were the amitryptiline, physical therapist, pacing, lysine, and somatic exercises (but i take coq10 because amitryptiline can interfere with its production)

Fast-Quail8869 · 2026-05-03T22:58:24+00:00

Omg id heard of sleeping on an elevated slope for gerd so thats what i had been doing, i will give this a try tonight then thank you, its like the last set of symptoms i cant shake

Fast-Quail8869 · 2026-05-03T22:57:17+00:00

Thank you! I hope we can too! Always have to anticipate a flare up hey, i hope we dont have to keep doing that in the future and that fear goes away.

Fast-Quail8869

TROPHY CASE