Tingling and twitches

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I’ve had right hip/glute pain since December. I saw a chiropractor and had no luck then saw an osteopath. A couple of days after seeing the osteopath, I had back pain which was so bad I was convinced I had slipped a disc somehow. I also developed tingling in my entire body. This was at the beginning of February. Since then I’ve also developed muscle twitches which happens anywhere in my body but mainly the bottom part of my body. I also get tightness in my back. Feel numbness at times in my foot and hand, sometimes sharp pains, stabbing pains and more. I’ve tried physio, tu nai therapy, acupuncture, swimming and nothing has worked. I’ve had an MRI on my lumbar spine, thoracic spine, brain and spinal cord and nothing was found. Ive also has some blood tests done. I’ve seen 2 private neurologists and 1 from the NHS who have all said they don’t think it has anything to do with my nerves. I’ve also seen a rheumatologist who put me on Gabapentin for a while and this also didn’t work. The tingling is taking over my life as I can’t focus, not even for a few minutes. I can’t sleep as it keeps me up. I’m at a loose end and was wondering if anyone had advice

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4 Replies

  • Posted

    hi i woke up in dec 16 with tingling in my feet within hours to my knees then both hands ,ive had it none stop since then not a second without it its 30 months now ,ive had all the tests youve had 2 mris of my brain and spine at two seperate hospitals numerous bloods 4 nerve studies and seen 7 neurologists nobody has seen anyone like me before with such acute onset and that it hasnt improved ,ive tried many meds over the many months cymbalta ,amitriptyline ,gabapentin and pregabalin none do anything apart from drug me up ,drs have given up on me and im left like this pain relief only ,been told likely small fibre neuropathy of unknown cause ,i also have the twitches mostly in upper legs ,i can still walk fine full strength feel hot and cold but the tingling is horrendous its absolutely ruined my life its like severe pins and needles i describe it like holding an electric toothbrush but on all limbs ,or like i feel thousands of stars on me that twinkle simultaneously none stop , how would you describe it ,i was told any tingling is nerves not anything else that they cant harm me and nobody ever died from neuropathy ,but living like this is hell on earth

    • Posted

      what youre going through sounds exactly the same as what im going through. it feels as though j have thousands of ants crawling all over my body. some days can be worse then others. i also get pricking sensations at times but its mostly tingling and twitches. i dont remember the last time i slept. i also feel like theyve all given up on me and finding the cause of this. i jusy want to feel like a normal 25 year old woman. ive stopped taking the gabepetin as me and husband were trying for a baby. as soon as stopped it, my symptoms got a whole lot worse

    • Posted

      i got pregnant 3 months after this began my baby is perfectly fine shes 18 months now it was always there but slightly milder when pregnant ,8 weeks after having her it went beserk like it intensified ,i lay in bed and feels like my legs have snakes going through them prickly wierd rumbling feeling my hands are like electric ,theres many fb groups for small fibre neuropathy its the sensory nerves that are damaged there misfiring haywire constant ,ive been told tingling is a better sign than numbness as nerves are still alive ,you basically get an 18 month window for them to heal if you go past that like me ive been told its likely for life ,ive got now where if i touch any part of my body with my fingers i feel it in my right foot it intensifies the tingling always the right even if i squeeze my left the signals are so messed up ,i guess when your still walking around neuros dont care ,i was perfectly fine till this happened overnight no warning signs nothing just boom i felt it spreading up my legs then into my hands ,there are many on groups similar with full body tingling ,all those drugs do is make it worse im currently drinking celery juice in a bid to help myself ,can you walk as normal ,any stress flares this real bad,look up small fibre neuropathy see if it sounds like what u have it is rare and most neuros have never treated anyone with it so you end up left to help yourself ,lions mane helps nerves so does b12 ,alpha lipoic acid and drink water

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