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

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apatel84
apatel84

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.

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  • mila18756
    mila18756 apatel84

    Edited

    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 😃

    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

    • apatel84
      apatel84 mila18756

      Posted

      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.

  • christophe69655
    christophe69655 apatel84

    Posted

    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.

  • apatel84
    apatel84

    Edited

    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.

  • Sally4Edgar
    Sally4Edgar apatel84

    Posted

    Hi, please search FND - Functional Neurological Disorder. I have had many similar symptoms and feel that I have finally after 5 years of searching found the answer. I came upon it quite by accident due to a friend who was diagnosed with Dissociative Disorder after frequently blacking out. This is the severe end of FND but it manifests itself differently in different people. Thankfully it won't kill us as it's a stress effect of the mind on the body rather than the body itself which is why tests often show nothing's wrong. I was convinced I had MS as my symptoms were all very similar and I wasn't willing to accept my GP telling me it was a result if stress. I saw a private neurologist in the end as I wanted answers. Tests for MS came back negative but he never mentioned FND as a possible diagnosis. It's apparently not easily diagnosed and most doctors know little is about it. There is a lot of interesting and helpful information you can read about it if you go to this link and its associated pages.

    https://www.sth.nhs.uk/services/a-z-of-services?id=115&page=294

    Thankfully in the last couple of years my symptoms have subsided to the level where I only notice them occasionally now. Giving a name to the condition has helped me feel relieved and I can now more easily look for the right information and help.

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