Experiencing Tactile Numbness - Seeking Similar Experiences

I struggle with the assumption that “sometimes it’s easier to deal with if we have a name we can call it” (neuro/again) and they are truly missing the point. The DX is so we can know what to expect/not expect and search for things to alleviate and cope. And at some point need the dx code for disability. one of the questions they asked was “are you still working?”…as if there is an option not to without a years long battle. Unfortunately (or fortunately? Not sure anymore lol) I dont meet the pain criteria for fibro since the challenges come and go (aside from the consistent numbness on the left side of my face/neck/chest), but that only started when I got omicron. Prior to that it was intermittent. I do appreciate the suggestion tho. I hate to hear others are experiencing the same challenges and also glad to not be alone. ♥️ I’m in an angry (sad) phase and I get into fix it mode but then don’t have the energy to follow through on any of the ideas so. Yeah.

Ugh! Yes, it is beyond frustrating trying to get the proper diagnosis🤦🏼‍♀️ I’m so sorry you have to deal with that sh*t! I’m so grateful to finally have a neurologist who actually listens to me/takes my symptoms seriously. Not that that necessarily means much as far as treating my SFN, because it often doesn’t respond to treatment, but it’s comforting nonetheless. Do you think you may possibly have fibromyalgia as well? It can often go hand in hand with SFN (the other leading cause of SFN is diabetes) I totally feel you with being able to take an IV like a champ, haha! My veins are super stubborn, and docs often feel guilty to have to poke me several times to find one, so I always reassure them that I don’t even really feel it and they can do whatever they need to do. Usually end up having to use the top of my hand which is allegedly more painful but doesn’t bother me at all.

Hands feet mostly in my dominant arm usually

Ok. Bit of a rant here bc I just. Need to get this out. upon googling thanks to you lovely humans, it seems my challenges align directly with non-length dependent SFN (rare, which means *not rare but just not reported since both gen neuro and pain neuro said this wasn’t in their area 🤯). found this can relate to: delayed sense of bladder filling and delayed desire to void sexual dysfunction due to hypo sensitivity the searing heat sensation on the side of my face and legs random stabbing pains like someone is jabbing a needle into my feet I can take an IV like a champ but cannot in any circumstance tolerate acupuncture needles Ranting bc… I was referred by TWO five star neuros (which means nothing but that’s a hard rating to get for a neuro) with the evidence above- and then some- to… hey this… 1. PT for sensory processing (?!?!) 2. “I dunno maybe a sleep clinic, this isn’t neuro related tho”. I’m truly speechless (aside from this rant 😑) Thank you for listening.

I don’t know what causes it but I have this all the time on my stomach and sometimes on my arms and all over my chest.

Sometimes with my hands and feet. I have SFN

These comments are so me 🙏ty

Yea I get this sometimes. It affects my extremities more often but not necessarily in the same places consistently, I have been told it's more than likely a nervous system issue (well obviously haha) but more specifically, akin to misfiring of nerves. The example concept I use is Fibromyalgia (if you're familiar with that) which on a basic-level is misfiring of nerve endings throughout the body. Except for in the case of Fibromyalgia, it's most commonly found throughout one's body, rather than this situation which is normally concentrated more consistently in the same areas or general areas in my case. Also in my case, they aren't exactly sure if the direct cause but have said it may very well be attributed to me having had over 50-60 different surgeries/procedures in my relatively short lifespan and as such, had more anesthesia (both general & localized) which can and does mess with the nervous system. I also have Epilepsy which, in itself, is misfiring of neurons and nerve endings in the brain. So my neurologist as well has said that could very well carry over into other parts of my body. Another common theory, and in all actuality, the more likely one is what could be a myriad of circulatory issues/problems (a much wider range of options and harder to narrow down but again, statistically more likely. Lastly, I apologize for the long reply (I've had these similar symptoms for years and years now so there's been more than a few theories) just wanted to touch on the top few recurring theories.

Hi there! Yes, this happens to me sometimes. I have small fiber neuropathy along with fibromyalgia, and while sometimes I experience allodynia (where my skin feels hyper sensitive and perceives non painful stimuli as painful) sometimes I can’t feel localized pain. The other day my acupuncturist accidentally left a needle in my leg, and I didn’t notice until I got home hours later, after having put tight jeans/tall socks/boots on over it compressing the needle further in, and going for a walk/running errands.