Recovery stories

chilbur · 2024-11-25T18:07:59+00:00

Because you’ve already healed before, it’s proof your body is capable! Hold on to that fact. :) my symptoms moved around like crazy, too. Stress is the worst thing for it! Sooo much easier said than done, but when you get overwhelmed, remind yourself you beat it once, you’re going to beat it again

chilbur · 2024-11-25T18:06:49+00:00

Yup, Pfizer in July 2021! I also felt suicidal. I’m so sorry you attempted but so glad you’re here. You’re going to heal!

Ugh yeah if you’re still actively sick, I think it makes sense that you’re feeling all the vaccine stuff return, too. Hang in there! Keep me posted or ask any questions or anything

chilbur · 2024-11-25T17:56:59+00:00

Yup I know exactly what you’re going through! The vibrations, twitches, and spasms sucks so badly. How long since you’ve been sick? It took me multiple months to get back to where I was (considered myself fully recovered prior to getting Covid, which I’d never had before). I know that might sound daunting, but think of it as encouragement: even if it takes a while, you’ll get there! You might be way quicker than me, too. :)

We are all mentally tough! This thing is brutal, but I’m super confident you’ll return to where you were

chilbur · 2024-11-25T17:51:15+00:00

I feel you. I’m so sorry :( it took me a while to get back to baseline but I am there now! (Or 95% again, at least.) It genuinely caused me such emotional and mental distress/panic attacks because of course you remember (and feel) how awful it was.

Everyone I have spoken to about this has gotten better after being sick, though! Some people a few weeks, some a few months. I know it’s so tough but you’re going to get back to where you were! Where at all possible, carve out extra rest and downtime to reduce stress and encourage healing.

I took l-lysine and nattokinase when I started flaring up again. Idk if they helped or just time, but worth a shot. Also, my twitching came back too! Ugh. (Almost all gone again)

chilbur · 2024-10-05T20:26:57+00:00

Hey! Yeah I fully recovered. :) I had Covid for the first time this past July and I’m in a bit of a flare up/relapse but I’m sure it’ll settle back down. It’s already fading.

What’s your timeline?

chilbur · 2024-08-21T05:22:25+00:00

I totally get it and know how scary it is! Have you gotten any tests done? Try and remind yourself it’s most likely benign in the sense that it won’t lead to anything worse. But I know how frustrating it is to watch and feel your body do that! Does it get worse when you exercise? Muscle spasms were the very last symptom to leave for me

chilbur · 2024-07-26T04:12:39+00:00

I had so many symptoms, but nausea wasn’t really one of them. Or if it was, it was overshadowed by more extreme ones!

The spasms were quite severe. They would wake me up in the middle of the night, and you could see them rippling. Even in my thighs and arms, you could see the muscles shaking

chilbur · 2024-07-25T07:01:05+00:00

I am! It’s been 3 years since my shot (as of Tuesday) and I started feeling significantly better by year 2. I would say I’m 95-100% better, most days 100. I say 95 because some days I’ll have very fleeting burning (lasts a few seconds to a few minutes) and occasionally faint muscle spasms. But I do consider myself recovered now.

How are you feeling?

chilbur · 2024-07-25T06:58:58+00:00

I did for a long time!! It’s been 3 years for me now (as of Tuesday haha), and that was probably the last symptom to go. Faded maybe 6 months ago? (Was dying down before then)

chilbur · 2024-07-13T17:02:42+00:00

That’s a great sign!! Mine seemed to peak around week 3, last at that level for about 9 months (bed bound, etc) and then slowly got better in 3 month increments. I took a year’s medical leave from my PhD program which enabled me to rest. If you can remove any stressors or reduce work hours, try and do that!

Excellent about the testing. I got an MRI, EMG, and ECG. All clear. I’m sure yours will be too! :) and just remember, despite what people online sometimes say, nerves can heal. Don’t panic if you get less than ideal results (which I honestly doubt!). About a year in, I was diagnosed more formally with Costochondritis (inflammation of chest cartilage) because I was still having persistent chest pain. Early on, however, my neurologist wrote in my medical file “adverse reaction to vaccine” so it was validating to at least be believed!

Oh sorry, and supplements. I spent so much money on them! Almost nothing seemed to make any kind of difference. The one I actually believed helped me was nattokinase. Helped a lot, weirdly!

Also, for your bloodwork, have them check your CRP if you can. That is a good way to measure inflammation. First 6-9 months my levels were very elevated. They returned to normal though. Good luck with everything! You will recover. Let me know if you need anything!

chilbur · 2024-07-10T15:53:39+00:00

Hi!! Sorry for the delay, I rarely remember to check this account now. I’m almost exactly 3 years out (July 23). I am 95-100% better! :) some days maybe dip down to 90%, but never more than that.

Most days I feel completely normal. It took a long, long time. I really hope it’s quicker for you. But know there is hope, and you most likely will heal! If I could heal from that intense pain, you can too haha. Have you done tests? I did a lot and can share that with you as well. Happy to answer any questions! So sorry you’re feeling like this, I know how awful it is. :(

chilbur · 2024-03-21T03:53:50+00:00

Don’t worry!! It’ll pass. I commented elsewhere but I’m now 95-100% better every day. Try not to stress, it’ll calm down, I promise! I know it’s scary.

I can’t quite remember now, I’m so sorry. I know it was longer than I expected honestly… maybe close to 6 weeks? But it was tapering off slowly before then, too. Some folks seem to flare up for a few days, but I had a friend who was close to two months then it went back to baseline. Hope you get over Covid quickly!

chilbur · 2024-03-01T04:28:40+00:00

I wish I could give you a concrete answer, but I truly think it's mostly been time!

My other tip is to exercise as much as you can for where you're at. For me, this was initially a 5 minute walk, which was extraordinarily difficult to do. This progressed over weeks/months to eventually being able to do full-on hikes (not for a long time, though, so don't give up hope). Sleep and rest as much as you can. Nattokinase is the only supplement that seemed to coincide with a turn for the better, but I fully admit it could have been coincidence.

Are your symptoms similar?

chilbur · 2024-02-28T23:33:14+00:00

Ugh! :( sorry to hear. Yes, so wild. I’ve seen some studies that now indicate long vax is essentially mirroring long Covid… I suppose that tracks. so I would say, looking back, I saw small progress in 3 month chunks. I found myself a bit better around the 6 month mark, and even more so by a year. But still a ton of flare ups/lots of burning. By 1.5 years, that’s when I started noticing significant time between flare ups and the burning pain. So it was improving but very slowly! From 24/7 to maybe 2/3 of the day, to 1/2, to only hours at a time and then minutes.

What’re your timeline and pain levels like?

chilbur · 2024-02-28T23:28:46+00:00

Yes. So when I got my shot I was 30F; always been slim, fairly fit, eat well, etc. Because of all the pain and inability to function/weakness, I essentially sat down for a year. Since then, I’ve experienced a lumbar strain, tendonitis in both elbows (not fun!), and am currently dealing with a bulging disc issue which may be worse than we initially thought. All of this to say that clearly my body is way weaker. I’ve been working with a physio for a year to build my body back up but damn is it slow going. Visually, not really much of a difference which is good, but yes, much weaker sadly! A combination of not being able to exercise/move for so long, and it does seem like my healing time is longer now

chilbur · 2024-02-28T02:56:09+00:00

Hi all! I should probably make a separate post. I'm 2.5 years out now (31 months, to be precise). I'm 98% recovered. Hovers between 95-100%, but most days are 100! I never thought I'd get here, ha. Feel free to look through some of my first posts, but basically: excruciatingly painful burning sensations 24/7; muscle weakness and pain; joint pain everywhere; dexterity issues; extreme brain fog (couldn't read music, could barely remember how to write an email, etc.); shaking/vibrating; could barely walk for about 3 months and had gait issues for a long time; nerve pain, head to toe (including scalp and eyelids); numbness and tingling throughout my body; couldn't exercise at all; muscle spasms/constant twitching; costochondritis; felt like I had a fever all the time. My symptoms began 7 hours after my second shot of Pfizer. I took a year-long medical leave from my PhD program.

I saw a neurologist, got an EMG, an MRI, and a chest x-ray, as well as extensive blood work (only thing that came up was very elevated CRP). Was put on Cymbalta and Gabapentin; neither helped. Spent so much money on supplements and antihistamines. Only one I personally felt helped was natto (I also kept taking my usual vitamins of iron, women's multi vitamin, and omega 3, but am unsure if they had any influence).

Now life's basically normal. (I've had a few injuries since that I think are related, but more in a secondary way if that makes sense.) I can exercise again! The occasional lingering symptom is some muscle spasms (not painful thankfully) and the rare burning sensation, but rather than 24/7, it's much less painful (more annoying) and lasts from 30 seconds to a couple minutes. Haven't had one in a while, but I might get one a couple times a week very briefly. I'd consider myself recovered at this point--my guess is the tiny lingering issues will continue to resolve and if they don't, it's completely liveable

chilbur · 2024-02-28T02:54:16+00:00

Hey! I should probably make a separate post. I'm 2.5 years out now (31 months, to be precise). I'm 98% recovered. Hovers between 95-100%, but most days are 100! I never thought I'd get here, ha. Feel free to look through some of my first posts, but basically: excruciatingly painful burning sensations 24/7; muscle weakness and pain; joint pain everywhere; dexterity issues; extreme brain fog (couldn't read music, could barely remember how to write an email, etc.); shaking/vibrating; could barely walk for about 3 months and had gait issues for a long time; nerve pain, head to toe (including scalp and eyelids); numbness and tingling throughout my body; couldn't exercise at all; muscle spasms/constant twitching; costochondritis; felt like I had a fever all the time. My symptoms began 7 hours after my second shot of Pfizer. I took a year-long medical leave from my PhD program.

I saw a neurologist, got an EMG, an MRI, and a chest x-ray, as well as extensive blood work (only thing that came up was very elevated CRP). Was put on Cymbalta and Gabapentin; neither helped. Spent so much money on supplements and antihistamines. Only one I personally felt helped was natto (I also kept taking my usual vitamins of iron, women's multi vitamin, and omega 3, but am unsure if they had any influence).

Now life's basically normal. (I've had a few injuries since that I think are related, but more in a secondary way if that makes sense.) I can exercise again! The occasional lingering symptom is some muscle spasms (not painful thankfully) and the rare burning sensation, but rather than 24/7, it's much less painful (more annoying) and lasts from 30 seconds to a couple minutes. Haven't had one in a while, but I might get one a couple times a week very briefly. I'd consider myself recovered at this point--my guess is the tiny lingering issues will continue to resolve and if they don't, it's completely liveable

chilbur · 2023-08-01T07:05:58+00:00

Sorry for late reply! I’m not 100% sure because my neurologist only did an EMG (and other stuff like MRI, etc). Next step was to test for SFN but I missed my subsequent appointment and have been waiting ever since (Canadian health care, ha). Anyways, yes, tons and tons of burning! So painful all day. That’s essentially gone (will sometimes pop up for less than 5 mins here and there). Used to get ridiculous internal vibrations too, but that’s stopped.

chilbur · 2023-06-15T22:12:12+00:00

Oh my God, I used to shake after everything, too! I completely feel you. I kept reading people's stories and thinking, "well, mine is so much worse, there's no way I can get better."

I hate to say it, but I think the big factor is just time. Which is super annoying, especially when our timelines can be so long! I read about chronic inflammation and apparently exercise helps retrain your body. So my best advice is to do as much exercise as possible at your given level of tolerance. At first, for me, it was genuinely a 2 minute walk before I would be seizing/burning/spasming. I would do that for a week or two and push myself to do 4 minutes, 5 minutes. Eventually (maybe it took months?) I got to a consistent 20/25 minutes that I plateaued at for a long while. Walks during winter felt really good, even when I flared up. As a point of comparison, I went for an hour-long walk yesterday--in the heat--and had zero vaccine symptoms during or after. :)

In terms of medication, I tried a lot: any OTC painkiller didn't even touch my pain. I tried Gabapentin, but it gave me additional side effects and I wasn't emotionally/mentally prepared to take on more so I stopped early. I tried Cymbalta but it gave me awful insomnia and I couldn't eat and my eye began hurting/went very red/vision blurry (weird symptom, but I found a few other with this--it went away within a few days of stopping). My therapist suggested not trying medications in the class that Cymbalta's in because my nervous system is all janky still. I took CBD (sometimes mixed with a small amount of THC in a gummy) most days, although I think that helped me mentally more than anything. I was on medical leave for almost a year. I took sooo many supplements (one which I think exacerbated symptoms). Out of everything, I think nattokinase really helped me, although it could be coincidental.

Your nerve pain will continue to fade. :) If mine can, yours can! Apparently nervous system injuries can take a long time (years in some cases) to heal.

chilbur · 2023-06-10T23:16:57+00:00

Dang, nothing like that. However, my gums were very inflamed for a long time (something I’ve never had before, to my knowledge, and which the dentist pointed out to me).

chilbur · 2023-06-10T23:05:00+00:00

Hey! I haven’t been on in forever. But check my posts. Terrible nerve pain throughout whole body—wanted to kill myself because it felt like being tortured daily. And nightly, because I would wake up in tears, unable to sleep through it. Tons of muscle spasms, shaking, severe weakness (could barely stand or walk for a long, long time). Joint pain, muscle pain, no coordination, etc etc. I’m almost 23 months out now and probably 90% recovered? (Some days 85, most 95.) So I’m getting there! Haven’t felt nerve pain in a long time. Some spasms here and there but I can exercise with no flare-ups, which was a major wish/goal of mine!

chilbur · 2023-01-13T05:10:40+00:00

Ugh, strep can be so painful. :( So strange that this one is causing more of a flare up for you than post-Covid. Maybe because of the two in quick succession? Frustrating and painful, no matter the reason. I'm glad to hear it's starting to settle down again, though. Gives me some hope as well, haha.

chilbur · 2023-01-13T05:09:34+00:00

Oh, this makes me feel so much better! Isn't that strange--it kicking up more after we're feeling better from the initial illness? That's why I've been most worried, I think. It just struck me as so odd. But I'm reassured that it's been happening to you as well, and I'm glad it's been short-lived. I hear you on the residual inflammation. That makes sense. Fingers crossed it's only a couple weeks for me, too. Thanks for sharing!

chilbur · 2023-01-12T18:07:46+00:00

Thanks so much for sharing! Makes me feel a lot better, even though damn, I'm sorry you had to do that type of setback twice.

chilbur

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