Hey everyone

Thought I'd check in. Generally, things are improving albeit slowly. Previously I used to have a lot of odd things like feelings of wetness, hot/cold spots, etc. which seem to have subsided and it is now just generally tingling.

I am yet to have a day where I don't notice anything at all, but there are days where it is very minimal. I am not sure whether the Gabapentin is making a difference or if this is just occurring naturally - I suspect the latter as I have reduced the dosage and everything seems to have stayed largely consistent.

As I've read and been told on here, the journey is definitely 'patchy' and I am not even sure if I am recovering, but hoping I am. There doesn't seem to be any set pattern but what I do notice is the less comfortable days consist solely of prickling/nipping/pinching (mainly hands/feet) which last a second but are very transient and disappear. From the tracker I have been keeping, it does seem to be that there are largely comfortable days, followed by a flare up and a small block of more uncomfortable ones, and then back to normal with the cycle repeating. Thankfully, it does seem to be more favoured toward the better days for the moment and the flare ups seem to be less frequent than back in the early days where it was quite constant.

As I say, I have been keeping a diary of symptoms and marking them on a daily basis which I have found useful in monitoring overall progress. If anyone's interested, I've included it here:

13/10 - Legs/Gym. Prickling/pinching/twitching all over including face but not really bad. 3/10
14/10 - No gym. Barely any symptoms at all. 0.5/10
15/10 - Push/Gym. Very very light symptoms. 1/10
16/10 - Pull/Gym. Light prickling and tingling. 3/10
17/10 - No gym. Very mild symptoms. 2/10
18/10 - No gym. Mild tingling and twitching in hand, foot, knee, etc. 2/10
19/10 - No gym. Moderate prickling, mainly in the face area, but also pre-cramp type feeling in the right foot. 5/10
20/10 - No gym. Mainly tingling underneath skin. 3/10
21/10 - No gym. Tingling and prickling/pinching (transient and happened in leg and arm) felt a lot in the face. Also feels tight when it happens in the face. Happened the majority of the day. 6/10
22/10 - No gym. Mild tingling but overall better. 2/10
23/10 - No gym. Mild symptoms. 2/10
24/10 - Upper Body/Gym. Mild symptoms. 2/10
25/10 - No gym. Mild symptoms. 1/10
26/10 - No gym. Very mild tingling and twitching. 2/10
27/10 - Full body at Gym. Mild tingling and twitching. Also felt a bit of dysesthesia on the left side of my face. 2/10
28/10 - Bit of tingling and minor prickling. 3/10
29/10 - Some tingling and twitching. 3/10
30/10 - Minor tingling. 2/10
31/10 - Tingling and a bit of dysesthesia. 3/10

**Gabapentin reduced from 300MG to 200MG / day

01/11 - Minor tingling. 2/10
02/11 - Minor tingling. 2/10
03/11 - Mild tingling. 2.5/10
04/11 - Bit more bothersome tingling and prickling. Transient. 4/10
05/11 - Mild tingling. 2.5/10
06/11 - Minor tingling. 2/10
07/11 - Minor tingling. 2/10
08/11 - No gym. Mild tingling. Also felt a bit of dysesthesia on the left side of my face. 2/10
09/11 - No gym. Mild tingling and tickling under the skin. 3/10
10/11 - Long walk. Tingling and some minor prickling which was transient throughout. 3/10
11/11 - Tingling but also more prickling throughout which was happening intermittently in hands, feet, rib cage, etc. 4.5/10
12/11 - Tingling but also more prickling throughout which was happening intermittently in hands, feet, rib cage, etc. Mild twitching too. 4/10

Supplementation at present is:

Morning: Magnesium Citrate, Benfotiamine 300mg, R-Lipoic Acid 100mg, Acetyl L-Carnitine 500mg and B12 1000mcg Methylcobalamin

Evening: x1 Omega 3 Fish Oil 1000mg and x1 Multivitamin

* again, not sure if these are making any difference yet. I have been on them for about 2 months which may not have been enough time.

So I am currently experiencing that 'block' so things have been a little uncomfortable the last few days. I am also going to wean off Gabapentin totally from tomorrow.

Let me know if anyone has any thoughts or questions

OP: Reading thru some of your thread, I see 100mg of Grape Seed Ex...going higher could help more...200mg daily, depending on your bodyweight too....

A friend is off gabapentin since taking grape seed extract now for 10 yrs or so...she's dealt with neuropathy for decades.... Statins and radiation from cancer therapies were the culprit...

I've told my story and I also believe Inosine to be so helpful in reducing the burn/tingle stuff.

Control/reduce sugars and carbs....

Hey there

I actually tried grape seed extract 100mg for a few months but found it had made no difference so discontinued. Perhaps that was a bit hasty.

Maybe I’ll try 200mg. Is it best taken with food?

Hi there,

I read your story with great interest, I have also been debating whether to post my story on here.
I could do with some support but I’m worried about what I may hear and nervous about posting.

I haven’t actually come across anyone with symptoms so similar to mine until I read your story.
I was beginning to feel like I must be the only one.
My symptoms are strange and varying, parasthesias all over my body, many like you have described, of varying duration and intensity that come in flares. No allodynia or burning either. Much more severe in the first couple of months.
Mine are always much more pronounced on my left side, with not as much on the right.

I too go through phases where I feel I am improving and have days with hardly any symptoms only to go back again. It’s soul destroying to say the least.

My reason for my problem is completely different to yours though and I’m still trying to get to the bottom of it. I believe it is due to the medication I was taking. I have also had issues with my feet (problems began with pins and needles in toes) which have slowly been improving (no motor issues or numbness) but has impacted my activity.
The first neurologist said it is fibromyalgia, I don’t have any other symptoms of Fibromyalgia though, I have no myalgia or fatigue.
He advised a NCS to rule out long fibre neuropathy although he strongly believed I don’t have it. .

He said that if I had a reaction from the antibiotics then it must have triggered something functional because he doesn’t believe my symptoms are long or small fibre damage. He said they wouldn’t be so transient if it was damage.
I’m getting a second opinion from a specialist in London next week... perhaps the same one as you.

I was wondering how you found the nerve conduction study... did you find it made your symptoms flare up or not?

I’m really scared to have the test because I’ve read that other people found they were worse after (yes I too frequently go down that road of desperate googling causing more pain than gain generally) i should stop but every time I find myself in a bad flare of awful parasthesias again I feel compelled to resume my search for answers only to end up feeling more anxious.

The Dr that carries out the test was honest and told me he couldn’t say whether it may or may not.

I’m 5 months in now and I’m really tired of it and quite scared , it’s like the merry go round from hell.

How are you at the moment ?

Hey Maria

I’ll respond properly to this tomorrow. Feel free to PM me too, always happy to have a chat. Which neurologist are you seeing?

Take care of yourself

Hey MariaMaria,

Good morning.

After consulting my paperwork I had "Nerve Conduction Studies 24 June 2020." at Norfolk and Norwich University Hospital. It was, I remember, a beautiful day. The doctor was extraordinarily grumpy. The tests themselves seemed hilariously antiquated. He used some coloured wires that reminded me of childhood Scalextric and an old Tailor's tape measure that he used to measure the distance between my ankle and knee etc. I actually enjoyed the tests. There was no discomfort at all. Zero. I had to really stop myself laughing at times at the bedside manner of this doctor.

"I was wondering how you found the nerve conduction study... did you find it made your symptoms flare up or not?

I’m really scared to have the test because I’ve read that other people found they were worse after"


After the tests I drove to the golf course and thrashed everyone. I recorded my best round of the year.

There is nothing to worry about regarding the tests. You have to prepare yourself for the staff being covered in PPE and hygiene measures etc. But that is all.

The tests themselves are harmless. They cannot make your symptoms worse. There is no physical means by which they can.

Let us know how you get on.

Atty

Everything you said here, I have exactly the same. Not a single thing different. It is like I am listening to myself talking. I have it for 2 years now and the cycle is the same, and there are more comfortable days than before. I am now at a point where if someone told me "Sign here and it won't get better but it also won't get any worse" I'd sign without thinking.

Hi,

I looked to see if I could send you a private message to discuss but there was no facility to do so, when I enquired I was told I couldn’t do so until I had posted more.
Not sure if you’re able to message me at all ? then I could reply to you.
I’m seeing Dr Radunovic.

Look forward to hearing from you.

Hi,

Thanks for your reply.
That does sound really old fashioned! I’m glad that the grumpy doctor didn’t put you off and you managed to enjoy the test.

It’s good to hear that you were completely fine afterwards and that does make me feel better so thank you.

i have had eight electromyography / nerve conduction studies over the years. while i wont say that i would do it for fun, it really was not bad at all ever and i never had any lingering or new effects from having the testing done.

Hey there

I left you a visitor message.

I am pretty much the same at the moment. I’ve had three days of very mild symptoms (2/10) but not counting any chickens as I know it’s still there as I get sporadic tingling or twitching.

My neuro suspected this was post viral but as I said in the original post, I took two courses of different antibiotics which like yours could have triggered something. It is idiopathic really as they’ll never be able to say what the cause was.

My neuro said exactly the same re it not being damage as symptoms were too transient and all over. He said it’s a functional issue affecting mainly small fibres but also some large (twitching). I also had the thermal test for small fibre which was negative so he didn’t see any reason to do a biopsy.

I took gabapentin for two months and stopped a week ago and it has made little difference to symptoms which is good in a way as I’m glad they didn’t seem to be masking anything.

It’s going to be ten months for me soon and it had definitely got more tolerable, and I’m sure there’s an element of me becoming slightly used to it. Touch wood, it doesn’t take over my life like it used to in the first six months. Then, I’d struggle to eat, sleep or even focus on anything else. I’m quite a skeptic, but I do believe positivity and trying to block out the noise from this does help. I just went on holiday recently and aside from one two hour spell, it didn’t affect me at all.

I hold onto the hope from my last neuros letter that he expects it to resolve and there isn’t structural damage to the nerves. Let’s see! Happy to discuss further with you in any case as sometimes I know it can be difficult to get support when people don’t understand what’s happening. My girlfriend is sick to the back teeth of neuropathy and nerve health lol.

Also don’t fret about the tests. They are on a scale of 1-10 about a 1. They don’t exacerbate symptoms nor does it hurt. I had some mild aching after the first EMG and took some ibuprofen but that was it. The second time round I was actually looking forward to it to see whether anything had changed. I’m terrible with needles and all that stuff too so if I can do it you’ll be fine :)

Thé neuro you’re seeing is excellent. The one I sought a second opinion from was Dr Hadi Manji, who to be honest told me what the first one had, albeit it in a lot more detail.

Hope this helps a little

Thanks a lot,

I must have missed your Dr in my search and I thought I had searched well.
My appt is tomorrow, hopefully it goes well and allays my fears a little.

I know what you mean about your girlfriend being fed up with hearing all things nerve related, my partner must feel exactly the same,
Its been non stop the last 5 months for him listening to me! and living with my distress so it would be helpful to speak with someone who’s experienced it too.
I got your visitor message too thanks, it would be good to do that.

I completely get what you’re saying regarding positivity and distractions, I’ve noticed this myself at times. It’s great that you had a relatively undisturbed holiday, gives me some hope that I can achieve the same when the time comes.
It certainly doesn’t help at all when you let it consume you as I have and still do at times when it is bad. Hopefully with time I too will become more habituated to it and be able to block it out to a certain extent.
I’m sure it will help when life in general can also return to normal for all of us.

I just hope I haven’t got the damage that I worry I have got and that this is functional like I’ve been told so far.

Im feeling better about the tests too hearing this, a couple of other people have also mentioned that they found them completely fine both during and after which is reassuring.

Good that your symptoms are down the lower end.
I rate my symptoms the same way as you do and have been having an improved week overall after having a pretty terrible one before that, to the point where I was considering going back on the gabapentin.
I just leave it by my bed as a reminder I have a last resort to turn to if I ever feel bad enough and feel the need to try it again.
I didn’t notice much difference either when I took it previously but I wasn’t on it for very long.

I’m around 2 or 3 on my scale at the moment.

We can only hope it continues!

That’s reassuring, thanks

Hey

Yeah just stick in there. I’m having an off day today but the previous four were really minor so small mercies and all that. Feel free to email me if you went to talk further, and let us know how your appointment tomorrow goes. I’m intrigued about his thoughts as we seem to have a very similar ailment!

Hey Maria- how did you get on??

Hi,

I’ve sent you an email

Hey everyone

Hope you're all doing well.

I've had a few PMs and thought it would just be good to update on what's been happening.

In a few days it will nearly be the year anniversary (not a bloody good one :D) of this thing, and things have definitely calmed down.

Whether the issue for me was structural or functional is not known, but not that significant in my case. Personally, I think there was some massive inflammation following a bad virus last year and it's taking time.

Recovery has been slow and very rocky, but it's at a point now where most days are a 0-2 out of 10, and the flare ups are generally limited to hours rather than an an entire day. It is by no means taking over my life like it was back in the early days, and more of a background nuisance now. I do feel eventually it is going to fizzle out and I think I am 80-90% of the way there.

I had a small flare up yesterday, and that was the first one I had got since January 9th, which is really encouraging. The gaps are getting longer now with any bad symptoms, whereas before I used to have them every other day or once every 3-4 days.

On most days I do notice it's still there and get very mild tingling/twitching/spasms, but not enough to bother me. The flare ups consistent of these symptoms being heighted as well as very transient prickling which generally lasts a second or two and can be anywhere, but mainly in the hands/feet.

I've been religiously tracking everything and have never really found a link between diet and symptoms. The only things which seem to exacerbate my symptoms slightly are cold and lack of sleep.

I'll update again in another 2-3 months but I am happy with the progress and so is my neuro.

Happy to answer any questions if anyone has any!

Do you ever think your 'bad flu' at the start of your issue was covid19?

I spoke to you a few months ago and still having a few issues myself. Scans and tests all came back clear (only had low folate and recently had slightly elevated IgA, but not concerning neuro). I'm almost learning to live with it.

Hey Leeds Lad,

Thanks for the update, often wondered how you were getting on. Your description of your symptoms and treatment has been comprehensive and very useful. Thanks for sharing.
My symptoms started early January 20, kind of peaked in March /April 20 and subsided in May 20. I'm still not 100%. I have insignificant numb toes and my legs and arms can ache like I've done v heavy exercise instead of light from time to time. And my hands can later feel pain from carrying a heavy shopping bag etc
I've had one nerve conduction test last summer that was negative a MRI scan of brain and neck, in the Autumn, negative, a telephone appointment with a Neurologist and a Covid cancelled face to face appointment on January 18th 2021 with no new appointment allocated. Although never diagnosed I believe I had/have alcohol induced PN and I stopped drinking alcohol on February 2nd 2020 with a couple of lapses. I have taken no medication.
I have pursued a whole food plant based diet... orthorexia nervosa ... an obsession with healthy eating, but it has been the cessation of alcohol that has undoubtedly helped me most.

Are you taking any meds currently? Which meds do you feel have helped you and which ones haven't?

Atty

It may have well been. It was diagnosed as mild pneumonia at the time and wiped me out - was the worst thing I'd ever had. Like flu on steroids I described it as.

Hey Atty

I do think there is something to be said for low inflammatory diets- I think they will make some sort of difference, so glad the alcohol absence has helped you.

As you'll know, I was prescribed Gabapentin most recently and I took that for about 2 months before stopping. No meds I ever took made a discernible impression on my symptoms and I am fairly sure they just did what they want regardless. I am wondering whether they were less effective as I didn't have any of the typical nerve pain sensations or anything like burning etc.

In terms of other stuff, I was on all the supplements at the start (I think I listed them out previously) and then just naturally stopped as they all ran out - I am not sure whether they did make a difference or not. Maybe it helped with the position I am in now, or perhaps that would have happened any way. In either case, I think marginal gains in any case would be helpful.

At the moment, the only supplements I take are Omega 3 fish oil, Magnesium, R Lipoic Acid (mainly as I have them left, but will stop after) and B12.

I think anything that promotes healing and/or regeneration is worth trying, as are things like low GI diets, yoga/stretching and acupuncture. I did it all :)

P.S. I tend to get muscle aches and sometimes mild/dull shooting pains in my hands and elbows. I have no idea whether it's related to this thing, or perhaps repetitive strain from working at a desk for so many hours, but I've found Magnesium gel application directly to those areas has helped!

Of course, after I posted this, I have had some flare ups for the first time in 3 weeks. Typical lol.

Mainly tingling/prickling/twitching.

Interestingly, my neuro in his latest letter also described this ailment as sensory mononeuritis.

Mononeuritis means damage tu multiple nerves. Sensory mononeuritis is damage to multiple sensory nerves. Small fiber nerves are sensory nerves so Sensory Mononeuritis could be the same as NLD SFN. Wonder what is next for us friend.

mononeuritis is inflammation, and damage of a single nerve.

mononeuritis multiplex would be damage to nerves in seperate limited areas

Interesting. I wouldn't think irritation of a single nerve would give me the symptoms I've had all over the body though?

That's because you, me and all of the others here with full body symptoms don't have "Mononeuritis" of any kind. We all have some form of neuropathy, unknown cause. It all began after a stressful event which compromised our physiolgy, be it either an illness or injury (injury in my case). We can all hope things will stay the same and not progress, I am hoping for that rather than expecting to heal. I wish there was someone on this forum like us who has full body sensory annoyances and is fine in every other aspect to tell us about it long term. Suspense is killing me.

I have a simple question.

Does leg elevation help Peripheral Neuropathy?

Hasn't ever done a thing for me....

Hi guys

Nearly a month now with 0-1/10 symptoms again.

I think I finally feel confident enough to say where in the end game and it's becoming less and less bothersome.

Eventually I expect it will fizzle out entirely like it is doing so now.

I know how much past/old threads were of use to me on this forum during the darker days so I will be back in several months just to confirm it has actually gone and give the readers some peace of mind.

But yeah, I hope from reading my story and the information provided that it does show nerves can heal, albeit very slowly! It has basically taken me a year approximately post-virus for things to get back to normal so if you're going through the same or have some sort of acute nerve issue, then hopefully this post has helped you in some way.

Take care

Thanks very much for your detailed posts while you've been dealing with your neuropathy. It has been helpful for me even though mine has a different cause. Here's hoping that you'll continue to recover even more. You take care there too.

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 :D

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 :eek:

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