Hey LeedsLad,

I just wanted to echo what Laura has said. Thanks for sharing your road to recovery. It has helped me and I'm sure a lot of others too.

All the best,

Atty

Hey good people, I'm baaaaack

Kind of wish I wasn't but hey!

So...... in short, it's definitely not gone. As a recap it's been approx 18 months since this all began.

It seemed in March/April the symptoms had become dormant. I had some very mild tingling but all in all I thought I was pretty much near the end.

WRONG.

May and June have been pretty bad. I'd say the profile has symptoms has slightly changed now. It's less the random odd sensations, and now purely the prickling/paper ****s/pin pricks type sensations. They have been happening quite frequently, and seem to be concentrated in the hands/feet and face area. The other day I bizarrely had a few hours where it felt my left face cheek was repeatedly been injected. Very unpleasant.

What's also accompanied these symptoms is what I'd describe as unpleasant ache/shooting pain type feelings. I also get some itching from time to time.

Symptoms are still fluctual and can really occur anywhere, lasting a second or two.

The good(ish) news is that the bad symptoms don't seem to last all day every day so I appreciate the times where it just backs off and leaves me alone lol. I still wouldn't describe what I have as painful, but more unpleasant nuisances.

Supplementation is continuing (although I am sure this is making little-no difference either way!!) and I won't lie that I am a bit disheartened by it all.

Part of me is wondering/hoping that this may be nerve regeneration but it is probably wishful thinking on my end.

This was the last bit from my neuro:

He clearly
has a relapsing / remitting small fibre type syndrome post-infection but on the whole this
does seem to be improving and I have explained it may take a while for nerve regeneration
to take place. We discussed the question of a skin biopsy but this will not change our
management. We also discussed symptomatic treatment which he has tried in the past, such
as Gabapentin and Amitriptyline without any benefit. Therefore, we are agreed not to go
down any treatment options.

The journey continues

Hey LeedsLad84,

The guy who repairs the bumps on my car is a very nice man but I hope never to see him again. That's the attitude I had on seeing your symptoms had drawn you back to the Forum.

So it's a qualified welcome back. Thanks once again for sharing your symptoms and thoughts in detail. I hear what you say about supplements. Some have reported great sensitivity to taking Mg for example, like Ibuprofen for headaches. I only take supplements because they are backed by scientific evidence and I feel I should rather than for any kind of instant relief.

Well at least football is coming home!

Best wishes,

Atty

Hey mate,
I've just registered because of your post. It seems we're in the same boat. I had covid in november 2020. After the infection I had trouble with walking. Vertigo, fatigue, felt my legs were breaking away. Dr. said it's long covid, don't worry.

5 months later I did feel quite normal again. End of may I got my pfizer vaccine. 4 days later I woke up from a strange feeling in my legs. My left leg was numb. I went to hospital. They did some checks, guessed it was polyneuropathy and told me to see a neuro.

EMR (is that the term? The speed of nerves, sorry I'm from Germany...) was normal, blood normal, I have two mri appointments (one already done) - I'll get the results probably in the end of august.

My symptoms: tingling, needles and pins in the legs, feet, hands, weak legs, calves feel sort of numb, muscle twitching all over the body. I can't walk long distances, cycling works neither - my calves are cramping. Finally I couldn't sleep anymore. Now I'm taking 50 mg pregab at night and it's a blessing. I can sleep again, I'm back on track at work, no more fatigue.

I hope to find out what it is. BTW I'm 40, male, used to be really fit til covid hit me (lifting, cycling, jogging). But I'm mentally good. Covid and my current condition taught me a lot. I hope you're allright and please keep us updated.

Hey Yanni,

Welcome to the Forum. 50mg of Pregab has made all the difference for you, thats very interesting in terms of sleep and symptoms. Thanks for sharing.

Best wishes,

Atty

I think we have quite similar symptoms, they think mine could be post viral, too (came on very suddenly with a temperature). 8 months in and I'm not improving and pretty terrified to be honest. Are you back to the way you were before now? I'd love a chat if possible

Hey everyone, hope life is ok!

So just an update. Since July, it has largely been really positive for me. I think I can recall maybe one day of annoying prickling, but the rest have been largely 0-1/10 days.

Now I am not sure if this means it's dormant for now but will come back at some point, or again if this is all part of the regeneration process.

It certainly doesn't negatively or detrimentally affect my life like it used to back in the days and I still do think it will eventually fizzle out.

I'd say if I was to mark recovery at this point, it would be about 90% based on current symptoms etc.

It's 20 months now since this started and my neuro has always maintained nerves are the slowest fibres to recover/regenerate in the body and that 2-3 years would not be unexpected.

In terms of symptoms, the only thing I really get now which is consistent every day is this feeling of tingling/flickering under the skin. It feels like the hairs on my skin should stand on end but they aren't. Sometimes it also feels like there's a fly or something on me (that tickling type feeling), but there isn't. It isn't painful but just more odd and probably related to overactive nerves/signals. Again, could that be part of regeneration and/or healing? I am telling myself it is!

I am still exercising religiously and able to do function normally etc. so hopefully this gives some renewed hope to past and present readers of my story. I will update again by the end of the year, but if anyone does want to have a chat, happy to talk on PM.

FWIW- I am still taking the supplements. Whether it's placebo or not, I am after every marginal gain possible! Also, I haven't noticed any definitive patterns with this ailment but I do think lack of sleep and excessive bad sugar exasperate symptoms for me in particular.

I am sorry to hear about your long Covid, but happy that you're having better days. I would love to know if what caused this for me was Covid.... there was definitely a chance it was.

The things I never had were muscle pains/cramping which I am thankful for.

Interesting on the pre-gablin front... I sometimes pop some gaba if I have a really bad prickling episode, but haven't had to do that for months.

Hi mate. Sorry to hear this, feel free to PM me if you want to chat.

I've put an update on my condition above which hopefully helps. I am defo not back to the way I was before and part of me wonders if I ever will be again, but I am improved to the extent that it doesn't at least bother me anymore as much.

Just wanted to chime in here, and thank you for this thread. I too have had a very similar journey. I'm 47 now, this all started 2.5 years ago (summer of 2019) for me.

My symptoms started about 2 months after having a bad flu-like infection (fever for a week, drenching night sweats for 2 weeks, then what seemed like a full recovery). I recall that about a month after my recovery I was dong some normal work and I felt a sting --like a needle poke or an insect bite on my leg. Then... another on the other leg a few minutes later. I thought at the time "well, that's unusual!" Little did I know that it was about to be off to the races for me!

Soon (within days) I was having stinging (as in sharp prickling sensations that resembled bee stings or stinging nettles) anywhere on my body below my neck. They could be individual pricks/stings/stabs, or "clusters" that kind of flare for a second or two. And I should mention, this pain only ever lasts for one-two seconds. If they last any longer than that, all I have to do is touch/rub my skin and they go away.

Fast forward about 5 months from initial onset of pain, and what was unpleasant but tolerable daily stings every few seconds (and to be clear, I'm talking _thousands_ of these per day, cumulatively) of a pain level of about 2-4 o/o 10 (again, feeling like a brief thorn prick, or ant bite) began to get much worse. 6's and 7's in intensity, sometimes worse. At its peak, it felt like wasp stings with acid. No exaggeration. Extremely demoralizing. They would wake me up at night. It was HORRIBLE. This was probably 6 months into it, and lasted for about anther 6 months.

Since then, I'd report that I've mostly stabilized. Like Leeds Lad, I have some days where the pain is 0-1 for several days, then I might have a 1-2 kind of day, then back to 0-1s. HOWEVER, about every 10-14 days I'll have a mulit-day flare up, where the stings return with a bit of a vengeance, increasing back to 3s, 4s and 5s, with an occasional zinger thrown in!!! Ouch! Two nights ago I got one on the bottom of my middle toe that woke me up from a dead sleep at 3 am! Only lasted 1 second, but boy did it wake me up

I might also add that I've had full-body muscle spasms/fasciculations that come and go, as well as burning patches of skin. I've gotten used to all of these arriving and disappearing along with the other symptoms. "Tight toes" have been a new one coming and going for 2022... it's always something

I'm in the US, and I went through a whole gamut of tests with neurologists, blood work, you name it. All "normal". I eventually got an appointment with the University of Maryland's Center for Neuropathy and they chalked it up to idiopathic immune response due to the infection. I asked them if they ever experienced someone like me and they said "Oh sure! All the time!" They told me the only thing they could really recommend was Gabapentin, but I never ended up taking it as my symptoms began to improve around that time, and I wanted to see how it went on its own. However, there are times during flare-ups that I definitely reconsider! But usually by then (3-5 days is my average flare), it begins to wind down.

So the big question for everyone is... does anything work for me? Well, my girlfriend (who has been an angel this entire time) believes that it's triggered by stressful events... or at least exacerbated by them. I'm a small business owner, and I've got a TON of responsibilities... in fact, the irony is that the last vacation I had was when I contracted the flu that set all this off!

The ONLY thing that definitely works for me is being submerged in water. 100% relief. I think it tricks my brain somehow. But otherwise, n change of clothing, bedding, being naked, etc does anything. Anyway, it's nice to take a shower or a soak and have a guaranteed respite for a bit. But unfortunately I'm not a fish I'd be curious to know if anyone else has made this association?

I'd also say that the symptoms are worst when I'm sedentary. Driving/reading/laying down/watching tv... that's when I really feel it. When I'm fully active (running, playing tennis, doing manual labor) Im much less included to feel the stings, etc. Make no mistake... sometimes I definitely do! But being "still" is when it's the worst... which is kind of a bummer, because we all want to be able to relax Oh well.

Otherwise I'm gluten-free and eat organic food 99% of the time, decaf coffee, exercise (I'm in pretty decent shape for a 47 yo guy, gratefully!). My goal this year is to RELAX more and take some vacations, get good sleeps, laugh, and recreate. A good prescription in general! But I'll see if I can produce an association with the symptoms, and respond accordingly to this board if anything works. The fact is, although I'm able to rest with my job (self employed), it's hard to ever take a day _completely_ off.

Anyway... perhaps this will be helpful for someone to read, and I wanted to thank Leeds Lad again for starting this thread. It's given me hope, and it's great to know that we can have such similar (weird!) symptoms, and not be alone

I remain optimistic, even though this condition/disease is a literal pain! On the whole, after 2.5 years of this, I have more "good days" than bad... even if my "good days" still have some pain. Compared to what I experienced for about 6 months or so, its definitely all relative!

I wish everyone the best of luck, and please know that there are others out there a lot like you. Thanks for reading a long post. Love and hope to everyone!

-Forrest