what can this be? Pins and needle, prickling, burning sensations..... help

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Hello my name is nicole and i have been battling this unknown condition since October.. i am very frustrated and starting to giving up.

back in october i have developed numbness, prickling, ant-like crawling sensations.. i have been in a lot of pain such as; muscle spasm, burning sensations on skin. these symptoms vary from time to time.. sometimes they are better or worst. it feels like my symptoms always change through out the months that i have been feeling this way. i went to my family doctor to do blood work, i have done pretty much all the basic blood work and everything was NORMAL, i went to a neuro i did an MRI, EMG/ NCT and it seemed NORMAL. my symptoms were still the same. no change. maybe a bit better. i also did blood work that my neuro gave me and it came back fine. he said possibly small fiber neuropathy which cannot be detected with emg or nct. 

nothing was changing so we decided to re-do all the tests and it came back NORMAL second time. 

my symptoms recently became worst, i feel the pins and needle way more than before especailly both of my right and left hands, everytime i move my hands or position it i feel stabs just everywhere and burning like feeling. the prickling, ant-like feeling are always there. 

i am not sure what else can this be, is this related to my muscles, nerves, bones? i am not sure what is the problem any why it cant be found.

neuro suggested gabapentin but i am not sure how i feel about starting pills. if i have no choice than i will. 

any suggestions, recommendations will be much appreciated 

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  • Posted

    Hi, I have these exact symptoms. I get it in my head every day and my body almost every day. I also get the muscle twitches and fatigue. It’s incredibly difficult to deal with, especially not knowing what on earth causes it and feeling like it will never end. I have thought that it could be fibromyalgia. I have also thought it could be an underlying auto immune disease. I have begun a diet that some are using for autoimmune that is nothing but meat and green veggies. I have no idea if it will work but I have to try something. Gabapentin didn’t do much for me :-(
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    • Posted

      Ugh too bad to hear. Did you see a doctor ? What did they say they think it is ? Yeah i’m still thinking about taking gabapentin ... did you get any symptoms while taking it ? Side effect ? 
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    • Posted

      I have seen 3 doctors, had all the usual scans/bloodwork etc & I saw a neurologist and got a brain mri & nerve/muscle tests. All came back clear although I did find out I have a small brain abnormality which I guess still doesn’t account for these symptoms. 

      So the neuro gave me the gabapentin because of the burny tingly things. He didn’t diagnose me with anything. He wanted me to do a neck and back mri but I have no more money to do it right now. 

      The gaba just didn’t work for me. Made me feel kind of jittery and sick to my stomach a few times. But I was very nervous about taking it so that might have been why. 

      I am seriously worried about never finding a cause or a treatment. I hear so many stories about people with similar symptoms but no one has answers sad We need to keep looking for answers and trying what we can. Try the gaba, it may work for you smile

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    • Posted

      I might try gaba but terrified of the side effects. I’m usually a healthy happy person so I don’t want to start being depressed because of it. Just wish we could find some better solution 
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    • Posted

      Gabapentin causes anxiety irrespective of whether you are an anxious person or not.  However, if you are anxiety prone, this medication can make anxiety worse.  There is no cure for neuropathy.  All you can do is manage the pain by trying to ignore it, or risk side effects from these medications.
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  • Posted

    I suggest you ask to have the punch biopsies done to check for small fiber neutropathy.  Like you, I had all those symptoms but tests were normal until they did that one.  Also have your B vitamin levels checked, esp,B-12. 
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    • Posted

      I want a punch biopsy but my neuro says there is no way it will be possible not sure why... i’m in Canada btw 

      Maybe he doesn’t see my case as terrible but the symptoms that I have really alter my life. 

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  • Posted

    Hi Nicole I am very similar ,I woke up Dec 11th 16 with puns needles in my feet within hours to my knees then into both hands the tingling pins needles feeling is none stop it is never not there ,I've had brain and spine mri nerve studies emg numerous bloods all normal yet this goes on its 19 months on 11th July ,I'm mentally drained nothing I've tried has helped I'm 8 weeks into trying cymbalta with no relief ,sum days I cope better than others it's far worse in bed or sitting ,I've seen 5 different neuro none can explain what happened to me but likely small fibre neuropathy I'm demanding punch biopsy next as I see neuro again in 2 weeks ,I've seen on many groups other women similar but none like me with such rapid onset ,a lot are menopausal as this can cause tingling 50 percent of cases of small fibre are no cause found idiopathic ,I believe it is my own body auto immune that is killing off my nerves I've tried every vitamin nothing helps thus has totally ruined my life

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  • Posted

    A nerve biopsy would pick up small fibre neuropathy.  I have neuropathy in my hands and arms due to injuries.  Hot weather is the best remedy to get rid of it for me. I was offfered low dose antidepressants butwhen I saw the side effects I decided against medication.   During colder weather, when I feel it mire, I just ignore the pain and tingling.
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    • Posted

      I once had a short break of four days in Arizona in September.  It was so lovely and hot.  It’s a huge difference from the British climate.
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  • Posted

    I also suffer from symtoms of Nuropathy in my legs. Feels like ants crawling under my skin, prickling and burning. I cannot bear clothes on my legs, bed covers are a nightmare also. It is very difficult when i am out as one has to wear clothes. All i can do is distract myself. Nobody i know understands and i am sure they don't beleive me. I was taking Gaberpentin but now i take Pregabilin which is similar. It does help and i wouldn't sleep without them, when asleep is the only time i am not suffering and i only sleep about 5 hours a night!!! I have had several surgeries on my knees and i was told by my Consultant that it's nerve damage. There is no cure for Nuropathic pain, i only hope that anyone suffering can share what helps them. Thinking of all those that suffer because it is a debilitating condition and rules ones life. 

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    • Posted

      Yes Elizabeth you are right in saying it rules your life ,no matter what I'm doing where I am if I'm smiling it's always there constant buzzing in all my limbs none stop 24 hours a day it's hard to get your mind away from it I cannot find any relief I also hate wearing anything on my legs as it compresses them and aggravates them more I've been wearing shorts it helps a little, nobody can see or imagine the feelings the human body can make when it goes haywire

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    • Posted

      It is all consuming at times. Im 40 which isnt young necessarily but when I am around people my age they are still fairly young and active and feeling good. I have been taking care of my health for a long time and its just so disappointing to feel unwell now constantly. Some days I go to a really dark place thinking that I might never have another carefree moment. Luckily I don’t stay there long. 

      The pregabalin, have you had any side effects? I worry a little because some of the side effects seem serious. 

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    • Posted

      Wearing cloths especially pants is so annoying because I can feel it better ! I usually like wearing shorts, dresses but living in a cold city most of the time prob isn’t good for me 
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