3 months of sensory problems all over: Tingling, wetness, cold/warm spots, pulsing, electric shock!

Brain and nerves
1

Hey guys, apologies if this is long but I want to explain my story and also think it’s cathartic for me to share this with others.

So, I am a generally chilled 35 year old guy with no underlying health conditions and generally in good shape, here’s my story…

It started on February 1, 2020. About a week after recovering from a horrible chest infection and flu (and two course of different antibiotics). I woke up and the outer border of my right foot had basically lost sensation and gone numb. It felt very weird to put socks on, press it against bedding, etc. I went to the doctors and they did some basic tests including reflexes and sensations, all fine!

Fast forward to February 10 and I’m awoken by tingling/burning/pins and needle in my lower left leg.

The end of February it got pretty bad. My fingertips felt like sandpaper, all over twitching/spams, skin crawling all over my body (mainly left side), tingling, burning and sleep was becoming an issue was my stress levels were raising. A ton of Googling didn’t help and I had convinced myself this was something like MS as the symptoms were too strong to be anything but a serious disease, right?

Beginning of March, GP runs bloods and I am referred to a Neuro in London who again does various physical examinations and checks eyes, all fine. He orders MRI of brain and spine, Nerve Conduction Studies/EMG.

All the tests come back fine, the only things in the blood were elevated levels of B12 (probably from a high strength supplement) and slightly overactive thyroid (T4). For over a month, I was also mistakenly taking 8,000 IU Vitamin D which I don’t think was significant, but who knows.

During Feb-April, my anxiety and stress levels are continuing to be high which probably is making all the symptoms worse. I am not sleeping and have had at least one panic attack, the first of my entire life. So my neuro puts me on 1x10mg Amitriptyline at night from the start of April. I am on an overall 8-week course with the final 2 weeks being used to alternate before I wean off.

So here we are in May. The sensation in my right foot is almost back to normal but everyday seems to be different, some with very few symptoms, others with quite a few. I am not sure whether the Amitriptyline has made a difference - I am sleeping better and the symptoms are a little more ‘settled’ but I am still experiencing odd things:

warm/cold(like freeze spray) spot sensations in random areas, mainly the hands, fingers, feet and toes
Pricking/tingling in random areas for seconds at a time
‘wet’ or feeling there is acid in my body in random spots.
a feeling my lower left leg isn’t a part of me (I know this sounds strange as hell) and feels a bit numb even though I can feel sensation. This is the same sensation as early February and the one which I hate the most.
Altered sensation in middle toes on the left side. It feels ‘icky’
Most of the worsening symptoms are mostly on my left side
Exercise actually seems to make the sensations worse (the day after) although I know in the long run it will be for the best I continue. It hasn’t affected my exercise in the slightest in terms of my ability to do what I want.

My neuro says its to do with the sensory nervous system and it might be running incorrectly due to something and that the Amitriptyline should hopefully ‘reset’ it and put the symptoms in remission, but I am starting to become really down as just when I think it may be fully going, something happens again. I guess I am also worried that this has been going on just over 3 months now and I would have thought if not her permanently or serious, the symptoms would have resolved fully by now. 3 months seems a long time.

I am sure my previous anxiety etc. probably made it worse and my body needed time to recover but I just keep worrying I’ll have to live with this forever and it gets me down. My girlfriend is also sick of me speaking about it tbh and what makes it more annoying is there doesn’t seem to be an obvious cause, as that generally seems to be the best way of reversing these symptoms.

Thank you for reading and would welcome any thoughts/feedback. Praying this eventually goes, and goes for good!

Update There are days where the symptoms are really minimal, like 1-2/10 minimal, but then the day after I will wake up and there’ll be mild under the skin type tingling/spasms all over. They are definitely reduced and there is never really any pain, but still really weird.

2

Was one f your antibiotics Cipro or Fluoroquinolone ? Many of you symptoms seem to relate to
Fluoroquinolne Toxicty Syndrome. So many people get it that the moderator allocated it its own Forum.

3

Hello Apatel,
I can share that you describe some of the symptoms(only some) nearly perfectly. I was and try to continue to be as fit as I am able but I have been struggling for four years with no proper diagnosis.
The things which are similar to you all with my right leg and foot is your description of feeling numb although you can still feel sensation. My skin sensation is all there but I have worked out that it is the nerves governing the motor control of part of this foot.This particularly affects the outer metatarsals and toes but most prominently the middle toes have experienced something closer to numbness(but once again it is a sort of “inside numbness”).

The above is how it started for me anyway.To complicate matters (and maybe put the health professionals off the scent) I injured that foot in the early days(but recovered) and it apparently has arthritis. I believe that foot, which I tripped over barefoot, was already weak and caused the fall. Over time any joint pain has become less and less of an issue. After a while I began with more pain in my lower right back- gnawing nerve pain. The MRI on my back showed some “possible chemical irritation” but no slipped discs. I wasn’t sure if my foot or my back was the problem then. However, in the early days I was shown a video by a physiotherapist of myself walking and saw clearly how I was all leaning to one side- that is -my other(left foot ) was leaning right inwards along with the leg and my right problem foot was leaning outwards along with the leg…and in the early days the arch of my right foot was stuck upwards and wouldn’t go down. Whilst doing this the remainder of my body and back was compensating and trying to align myself upright. The physio, sadly didn’t deal with it but prescribed orthotics to put in my shoes to try to get my posture right…but I know now that this was too much too soon and too much of a drastic change and my midfoot joints erupted in pain at that time…so I ditched those orthotics.
So over time my symptoms continued. I feel also (and maybe you don’t relate to this) that my right leg was externally rotated. The arch is no longer stuck upwards and the leg feels less rotated but I get lots of nerve pain in that foot. Lying down in bed at night always made that leg feel sort of more “numb” but that is less so now. My lower back is less painful but still niggling (right sacrum region).
For me anyway, I believe I have been trapping the nerves by my skewed stance for ages and this gave me impaired motor control in part of my foot with a complication of some midfoot arthritis which may or may not be relevant. Strangely I never used to feel any bad sensations in my leg - just foot and back. My leg just sloped and compensated. My body and feet, ever so slowly seem to be trying to erect me in a straighter position and I have started to feel pullings in the calf, even pain(so I am trying to see some of that as positive change). I ask myself how my legs could have sloped so much and had no wrong sensations in the legs. I am hoping it is trying to re-adjust.
The other thing which I share with you is anxiety. I have been pushed from foot to back consultant and back again an no-one has understood the problem. I am sure all my worry has helped nothing, Walking is an issue for me. 5 years ago I was doing 8 mile walks in mountains. Now I have to sit down every 10 minutes…and more than 30 minutes walking at the moment could leave me in more pain…but mostly the next day. I would descibe my foot sensations as either dysfunctional or with nerve pain…or both. I cycle a bit but also not for too long and that keeps me sane.
The other thing which I think might be making changes is doing Health Qigong every morning during the lockdown for 30 minutes. This gives my legs stretches which no other physio activity has ever given me.
Good luck.

4

hi no i dont believe so? They were Doxycycline and Clarithromycin, both fairly innocuous i think.

5

hey elaine

thanks for sharing your story, that all sounds pretty bad! I do hope it gets better for you :slight_smile:

Im trying to stay postive because touch wood i havent ever felt pain with all this, its just been mildly irritating and the feeling in my right foot has come back fully now.

Neuro has told me to wean off the Amitriptalyine over the next fortnight to every other night. I hope coming off it doesnt cause the symptoms to boil boil back to how they were, but lets see!

6

I’m glad you could rule them out.

7

hi ive had sensory problems in all limbs now constant for 41 months ,im on many groups to do with these problems i myself am diagnosed with small fibre neuropathy ive seen many ppl on these groups have sensory problems from doxycycline it may not be one of the common antibiotics causing neuropathy but its definitely mentioned

8

hi i have just read your post and i can tell you so much as i have had this type of thing for the last 5 years. There is so much to say that its such a lot to type. Your story sounds so similar to mine.
I would speak to you on the phone.
Not sure how to leave my number in the private messages though

9

Hey there, can you email me? amish_patel_206@yahoo.co.uk

I have read your story (which sounds horrible for you!) and the Neuro doesn’t think it’s small fibre nerve damage but who knows at this point.

10

That’s really frustrating if so! Just hope if that is the case, it is something my body can naturally reverse! I am hopeful that my foot numbness went away, but who knows.

11

going to be the death of me this is. Just when think it may be on the way out it strikes again.

Yesterday all day it was irritating and then affected my sleep. Internal prickling/spasms/twitching all over, mainly in the legs, and a little in the arms. Quite itchy. Random sensations of intense warmness. Not painful but irritating enough to keep me up till 5AM. Even today its there - its just so weird some days symptoms are so low and then others like this and i cant explain why.

After three months of this im thinking this is going to be with me forever which is depressing!

I started my wean off Amitriptyline yesterday having been on it six weeks. First night not taking it. Maybe it was that masking the symptoms.

12

hey, how are you? did you ever get any answers . i have been feeling the exact same way for months 5 months to be exact. i have had so many test. the doctors seem to think i have anxiety which is causing the issue. please let me know

13

Hi there

So the symptoms are still there, but overall it is much reduced.

I had a follow up with my neuro (second opinion) after having some additional blood work done, and the electrical tests repeated + some others for small fibre checks. Here is what I posted on another forum:

Had the follow up with my Neuro today.

The electric tests (some of which were for small fibre too such as thermal testing) and blood tests all came back normal.

He mentioned that it’s clear I have some sort of post infectious issue and that he doesn’t believe my nerves are damaged, but there is a functional abnormality/they are misbehaving at a molecular level, as opposed to being anything structurally wrong.

Think he mentioned something about the brain becoming hypersensitive too and that’s why my sensory and motor nerves (fasciculations) are firing off when they shouldn’t.

He considers my symptoms on the mild end of the scale (I do agree based on some of the stories I have read on here) and does believe it will eventually go back to normal, although couldn’t guarantee that.

He said what I have is on the same pathway as GBS, although not quite the same as I didn’t have any paralysis nor needed a ventilator to breathe.

I mentioned IvIG and his thoughts were that it was a little too ‘heavy duty’ for what I am experiencing at the moment, and it would be best to try a phased approach with first Gaba and then Pregaba before it could/should be considered. He mentioned there’s patients he has using this but they have extreme small fibre neuropathy.

He said a skin biopsy wouldn’t change the course of treatment so he wouldn’t advise that for now, and he also mentioned that generally small fibre damage symptoms are more consistent and include stabbing/burning which I don’t have, and that my symptoms are very transient. He did acknowledge though some of what I have described is small fibre.

So, I am going to try Gaba for a few months and report back to him and see where we go from there.

He gave me a lot of his time and answered all the questions I had, so I am feeling more positive that this will eventually go!

14

how do you feel now? i get electric shock sensations or small prickly pains all over on and off. any pointers would be helpful.

15

add. I just now see, that your post is quite a while ago. If you are still dealing with this you might want to answer anyways :slight_smile:

Hey apatel,

I will ask some questions to help you rule out some things, if possible I d like you to answer in short notes not sentences, thats quicker for me:

How much and what Sport do you do?
What do you eat? (If possible describe a normal day morning to evening)
How is your job? Positionwise. Means do you sit a lot, move a lot, carry stuff etc.
Where there changes in your circumstances when this started (new job, new partner etc.)
How is your blood pressure?
Do you have allergies?
Who sent you to a neurologist?
Bit uncomfortable question but do you ever have trouble going to the bathroom (meaning big)- If you don t want to answer that its okay - If you have, it can be another hint for lack of Magnesium

Unharmful things you could try out right away on your own responsibility:

Take high dosed (pls don t overdose and stick to the package description ) Magnesium (no combination just mg!) before going to sleep, for 4 days, if it doesn t do anything pls stop it then, note that this can cause softer..digestive product
If you exercise please stop for a few days to see if your symptoms get worse or better from that, If they get worse please refrain from exercising (if not ultimately necessary due to other conditions) until you have seen an orthopaedist as you can do damage to already damaged/dislocated/blocked joints.
And please make an appointment with said orthopaedist, tell him her your symptoms and he she will check out your lower back/spine/sacroiliac joint.

What infection did you have? How long did it stay? How did you behave (mean move, eat etc) during that?

did you get your blood checked for amount of red blood cells ?

All the best
M

16

Hey, have your doctors made any possible conclusions. I have the burning/freeze feeling and its more on my left than right. I also have cold on my head and face. I have had MRI’s, EMG, bloodwork and still no conclusions. I’m going to a endocrinologist next to see if they cam come at it in a different way than a Neuro and GP. I have the middle toe numbness in the left foot as well.

17

Hey everyone

Hope you’re all doing well.

I’ve had a few messages and responses to this original thread and thought it would just be good to update on what’s been happening.

It’s been 14 months since all this started and the good news is things have calmed down immeasurably. My neuro suspected this was post viral neuropathy (in February 2020 I was diagnosed with mild pneumonia which actually may have been Covid but it wiped me out) but it is idiopathic really as they’ll never be able to say what the cause was. He said it is 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. He expects it to fully resolve in time but it could take up to 2 years as nerves are very slow to recover, but importantly he doesn’t believe there to be structural damage. He wasn’t concerned with the timeline when I presented 14 months being a ‘long time.’

Recovery has been slow and rocky, but it’s at a point now where most days are a 0-1 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 when it does appear. I do feel eventually it is going to fizzle out and I think I am 90-95% of the way there.

I had a small flare up a few months ago, 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. It’s mainly feeling it and then looking at my arms or legs and seeing random little hairs ping up! 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.

Happy to answer any questions if anyone has any but there is hope that this sort of stuff does go. Touch wood, the days of all sorts of random feelings are gone.

18

I know it’s not helpful, but I think time is the only thing that really helps. I tried everything in the book, from supplements to creams to diet. The body repairs itself at it’s own rate. I’d say the single biggest thing you can do is probably an anti inflammatory diet (think Mediterranean or similar) and then look into supplements which contribute to nerve repair/regen - B12, LCartine, R Lipoic Acid, Omega 3, etc.

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Hi M most of the details I’ve included. Never any trouble with the bathroom and I take magnesium regularly. The only thing I do have is degenerative disc disorder in my lower right SJ which I believe is fairly common.

20

thank you. i didn’t consult a doctor for this and decided to wait it out as these covid times have caused immense stress on the body and mind. i had twitching last year which two doctors told me were anxiety related. i normally eat clean and will try to go cleaner. i will also look into the supplements. the stress is still the same with life. i hope my body and mind gains the strength to endure the same