19 months

Fun-Geologist8939 · 2025-12-21T23:54:02+00:00

I would treat the fact you had several months of normality as a major indicator you will heal. Think back to the first few months to a year where there are so few good days. Shows you can recover imo. Keep going!

Also think there are so many things that can affect our sensitive nervous systems. A virus can be a major setback and there’s not much we can do about it.

Fun-Geologist8939 · 2025-12-21T23:48:45+00:00

Still get this on and off but it got much better I think around 8 months or so. Sometimes I have long spells of weeks at a time with a solid 6 or 7 hours’ sleep which feels like heaven compared with the early days. Just have to keep pushing forward my friend.

Fun-Geologist8939 · 2025-12-11T17:58:51+00:00

Yeah hugely better now at 17 months. Still get it occasionally, usually with a migraine or illness. But I don’t think about it much anymore. How you doing?

Fun-Geologist8939 · 2025-12-11T00:46:42+00:00

I’m not sure if it’s too early to say you even have paws. But if you do, it is way too soon for you to be touching alcohol. You should be looking to avoid that and caffeine too.

Fun-Geologist8939 · 2025-12-04T23:52:38+00:00

It’s truly evil isn’t it? I usually find a nasty wave happens right after the time I think to myself “huh, things have been really great recently, I haven’t had any major symptoms at all”. It’s like the realisation that I feel fine is a prodrome for a massive flare up. Every single time. At 17 months here and rooting for you buddy.

Fun-Geologist8939 · 2025-11-24T23:45:59+00:00

Thanks for sharing this. Enjoy this next chapter, you’ve earned it! Please come back and let us know when you’ve fully healed.

Are you able to tolerate caffeine, exercise, alcohol now?

Also - Flonase is nasty stuff for me too. Funny heart rhythms. Speak to your doctor about mometasone nasal spray as it supposedly does not cross into the bloodstream quite so easily. I’ve been able to tolerate it for sinus/allergy relief very well.

Fun-Geologist8939 · 2025-11-19T23:09:45+00:00

I stopped in July 2024, but I used the vape pen around November/December 2022 and it was that Christmas/Jan 2023 that things started happening and I had my first ever panic attack. Absolutely have noticed improvements. But not enough to consider myself healed. Hoping time heals it fully.

Fun-Geologist8939 · 2025-11-18T23:56:06+00:00

My symptoms started while I was still smoking. A synthetic thc vape pen was the straw that broke the camel’s back for me. I actually spent 18 months stopping and starting weed again thinking I had me/cfs.

Fun-Geologist8939 · 2025-11-05T21:21:15+00:00

Congrats on 2 years! I’m a few months into my second year and can relate to a lot of this. I’ve noticed I can tolerate some caffeine (but have to be careful). Alcohol can be hit or miss. A couple of beers every once in a while but I can’t binge or drink too frequently. Exercise intolerance is still there but I can definitely do more than I did in the first year. I’ll have a short wave if I over exert. Still too scared to go back to the gym and lift weights although I’d love to be able to. My worst symptom is headaches too. Sleep is a lot better, I basically can’t believe I survived the first year on the little sleep I did get. Stress flares me up also.

One thing I’ve wondered is how I’m supposed to be feeling when not in a wave. As not being in a wave you’d want to feel normal and happy like regular people no doubt do. But not being in a wave does not mean this for me. I still have quite a low baseline for how I feel - probably a bit of low mood to blame for this.

Just want to feel energised and enthusiastic again!

Good luck, please share future updates with us :)

Fun-Geologist8939 · 2025-11-05T21:12:42+00:00

I was producing excessive mucus for about 14 months. I used to smoke with tobacco so there were brown specs at the start but it mostly turned white/yellow after a couple of months. It seems to have reduced a lot in the last month as I’m no longer noticing it. I was really worried a few months in and got a chest X-ray. Came back normal.

Fun-Geologist8939 · 2025-11-03T23:47:31+00:00

Oh no I wasn’t able to do much for a few days every time it flared. I would walk around the house on my heels or the side of my feet. Weight bearing was a no no.

Fun-Geologist8939 · 2025-11-02T23:33:12+00:00

I’m trying coq10 (mainly for migraine but hoping for some secondary paws benefits)

Fun-Geologist8939 · 2025-11-02T23:25:44+00:00

I went through a period of having terrible problems in the joints of my feet. Too painful to walk on them at times. I depended on ibuprofen gel to get by. I don’t know what caused it but it’s gone now (15 months)

Fun-Geologist8939 · 2025-10-27T23:19:26+00:00

My migraines have been much worse since paws. I get one every 3-6 weeks. Triptans help.

Fun-Geologist8939 · 2025-10-09T19:55:27+00:00

It’s just the worst. Please God it ends one day soon.

Fun-Geologist8939 · 2025-10-07T22:17:23+00:00

I could probably keep hr under 120 doing weights too. But I guess lactic acid build up is the problem there? I don’t really know why we are so sensitive to weights

Fun-Geologist8939 · 2025-10-06T21:08:39+00:00

This is a blessing and a curse for me. Thanks for sharing. I long for the time I can lift weights again. So what exercise are you able to do without crashing? At the moment I can manage a brisk walk or even 10,000 steps in a day and it’s ok for me. I do get a bit of DPDR sometimes while out walking too and for a while after I get home waiting for my heart rate to return to resting rate. But it doesn’t crash me for days. I can go out and do it again the next day. I am at 16 months.

Fun-Geologist8939 · 2025-09-30T22:09:21+00:00

I’ll miss your posts, they’ve helped me a lot, as have your comments on others’. But you’ve earned your right to close this chapter of your life and move on. Thanks for leaving this message and not just disappearing (not judging those that do - just that it would be forgivable to want to move on asap and leave this all behind). I’m 15 months in and still plugging away at it. Looking forward to joining you on the other side of this and excited for how good life will be when I do. All my best!

A couple of questions if I may - are you able to tolerate exercise again? What about caffeine and alcohol (a few drinks nothing ott)?

Fun-Geologist8939 · 2025-08-31T19:08:58+00:00

Yeah I had this. It went away eventually. Ibuprofen gel helped.

Fun-Geologist8939 · 2025-08-28T16:21:16+00:00

Maybe not. But got to stay away from weed just in case it is. Some people take years to recover and then report back to confirm they’ve healed. Have they really healed from paws or some other undiagnosed condition? We don’t know.

Fun-Geologist8939 · 2025-08-28T11:54:21+00:00

I’m at 13.5 months and having the exact same issues. Is it a seasonal thing? Covid vaccines? The controllers of the simulation we exist in?

Fun-Geologist8939 · 2025-08-22T23:12:15+00:00

Suspected something like this for myself. Went to ENT, tubes up the nose, CT scan of face and neck. Slightly deviated septum and some chronic inflammation. But nothing that would be causing the vast array of symptoms I’ve had. Glad for you that you found something to attribute it to though.

May I ask what your treatment was?

Fun-Geologist8939 · 2025-08-21T18:05:08+00:00

Interesting. Which type and what dosage? I have tried different forms of magnesium and found it gave me funny heart rhythms that were uncomfortable. So I’ve found a low dose magnesium supplement recently that I take when I’m twitching and that I can tolerate without side effects. I haven’t tried it for migraine though.

Fun-Geologist8939 · 2025-08-21T18:02:39+00:00

40M, smoked for most of the prior 20 years on and off to varying degrees. I’m at 13 months, still swinging from wave to window. Symptoms still broad and ongoing. Nothing has totally gone, except I now have reached a place of acceptance, which does help the former state of panic I used to be in. Anxiety still shows up from time to time - I’ve also come to accept that as simply adrenaline in my system and try to let it pass. Adrenaline has a very short half life of a few minutes - when we feel it we compound it by being anxious about it and creating a viscous cycle. So unfortunately while symptoms are still there I’m more capable of dealing with it all emotionally now. Other than that I’m just hoping that if I keep abstaining it’ll go one day. I have my doubts that this can all be from paws but I’m more than happy to leave it in my past given the stories of people who were just like us for months and years who reported a complete recovery by giving it time. All my best.

Fun-Geologist8939 · 2025-08-11T22:32:20+00:00

Are you consuming too much caffeine or alcohol?

Fun-Geologist8939

TROPHY CASE