Hello. I'm in the midst of a thick fluey cold so will try to be brief and non waffly/ brain fog. Sorry if I don't succeed! I want to ask if this new development is significant enough to report to my neurologist - who still hasn't written to me or my doctors following an expediated consultation with her in mid November about pins and needles the length of both arms and worsening disequilibrium as problems with standing. I have Sjögren's SFN and it affects most parts of me as cold numbness and tingle which includes my face all the time, apart from now with the sinus/ cold related Neuralgia which is bad!
So the soul of my right foot has been buzzing when I stand on a hard floor recently but now it is up my entire leg! It doesn't hurt or burn or freeze but I do have twitchy spasms in my backside and down both legs often and now this weird vibrating in one foot and leg. It's not all the time and is disconcerting rather than unpleasant. On the same foot my two little toes used to twitch and vibrate but this comes and goes now. I keep thinking there must be an electric current under our tiled floor but it's only affecting one side. I thought the twitchy toes from a few years ago were due a Morton's Neuroma but now I'm wondering?
Normally my neuropathy is entirely bilateral so this feeling of internal vibrating is really strange.
Does this new 24/7 vibration in one leg signal that my neuropathy is progressing to large nerve fibres now or is it still an SFN thing can anyone tell me? When I googled it earlier everything points to early Parkinson's - as do many of my symptoms - but I'm hoping it is actually a Sjögren's SFN thing rather than another condition?
I've been getting this weird buzzing feeling in my left upper leg recently, especially when sitting down. Previously I've occasionally noticed it in my fingers or feet - I once thought the floor was vibrating under my feet.
I've no idea what it is but looking online it seems it could be a trapped nerve, or some kind of nerve damage.
I asked on neurotalk PN forum and was told it is a common symptom of small fibre neuropathy so
I'm reassured that's it's just part of this ongoing Sjögren's rather than some additional condition.
I looked up small fibre neuropathy and it sounds similar in some ways to what I get, but so far (touch wood) mine isn't painful, just weird. Is pain something we have to look forward to? >:(
Well for me it was excruciatingly painful for a couple of years but now mostly consists of numbness, cold and tingling. Sometimes the pain comes back with a vengeance though. If you have any form of neuropathy this should be investigated by a neurologist as soon as possible to exclude large fibre or CNS Sjögren's or other.
I also have intense itching inside my feet at times, and no amount of scratching relieves it.
No that sounds entirely different to my vibrating - which doesn't itch. Have you any sign of tiny blisters? If so it's probably Dyshidrotic eczema - the itchiest thing I've ever had.
No, I don?t have any skin issues, it comes from deep inside the foot, or heel. I also get the vibration at times as well. Feels like a pager going off in my foot: I get stabbing pains like a lightning bolt at times too. I?m diabetic, so I figured it is neuropathy.
Profound itching (deep inside) is also a common sign of small fiber neuropathy!! Pruritus is the official name for itching like this...and no amount of scratching helps. I get it sometimes on arms and legs at the same time...drives me nuts for an hour or so until it settles down.
When nerves are damaged, many different sensations occur...from pain, tingling, vibrations, itching, buzzing, shooting sensations, numbness, etc. These can last for minutes, to hours, to forever. The sensations may return daily, or infrequently. It all depends on the damage and extent.
Actually I take it back that I don't get this insane invisible itch too. I get it sometimes between my shoulder blades and often on my scalp. No dandruff or scaling. But I suppose I'd rationalosed this as being cervical arthritis related or something. I used to get terrible bouts of alopecia areata and pompholyx eczema as a kid right up to when I was 45 and then it just stopped. So I've itched away a large portion of my life and guess it's just become so habitual that I don't notice that these days it's a neuropathic itch rather than an eczema related one.
Not sure but sounds like small fiber. My vibrations are bilateral in certain areas like legs and hands but sometimes, they pop up in weird places like the side of my foot arch or my inner thigh (which is also super embarrassing because it usually shows up with an intense itch in an area right next to my crotch so in public, I suffer, but at home I itch away as my family knows why I'm itching there ????).
I was almost happy to see your post about vibrating, (although I wouldn't wish it on my worst enemy), as I've suffered from it for years and I feel kind of alone as I don't know of others who have this symptom. Usually they have pins and needles. The sensation of vibrating and bubbles popping in both legs happens 24/7. Even as a child, I knew I was getting a cold or flu because my entire body felt like it was vibrating really bad. I thought everyone experienced this vibrating until not that long ago when I was getting sick and said something along the line to my husband and son, "you know how you know how you're getting sick when you start vibrating so badly"?, and they didn't have a clue what I was talking about. So I'm gathering I've have neuropathy problems all my life just like Sjogrens but didn't know until a few years ago that I was experiencing things because I had a diseases and these things weren't normal.
Hi MAT I started getting vibrations quite early on. I get them everywhere including my chest. Now I've had 4 nerve conduction tests and all are clear so hopefully in your case this isn't large fibre but one of the joys of sfn. Im sure it can do this as has presented me with some bizarre symptoms. I remember feeling vibrations was one of my first sensations before I realised what it was.
Thanks Jo. I had a really rubbish letter from the neuro saying that I'm just suffering from "heightened health awareness" - lying by saying we had discussed this and recommending I take Gabapentin or Amitriptyline - both of which I would never have discussed because I've tried both and had severe intolerances. What a grey eyed, duplicitous doctor she's revealed herself to be?! I have sent you my withering letter of reply to her! X
Quote from: Sweetcheex76 on January 30, 2018, 09:26:25 AM
Not sure but sounds like small fiber. My vibrations are bilateral in certain areas like legs and hands but sometimes, they pop up in weird places like the side of my foot arch or my inner thigh (which is also super embarrassing because it usually shows up with an intense itch in an area right next to my crotch so in public, I suffer, but at home I itch away as my family knows why I'm itching there ????).
I was almost happy to see your post about vibrating, (although I wouldn't wish it on my worst enemy), as I've suffered from it for years and I feel kind of alone as I don't know of others who have this symptom. Usually they have pins and needles. The sensation of vibrating and bubbles popping in both legs happens 24/7. Even as a child, I knew I was getting a cold or flu because my entire body felt like it was vibrating really bad. I thought everyone experienced this vibrating until not that long ago when I was getting sick and said something along the line to my husband and son, "you know how you know how you're getting sick when you start vibrating so badly"?, and they didn't have a clue what I was talking about. So I'm gathering I've have neuropathy problems all my life just like Sjogrens but didn't know until a few years ago that I was experiencing things because I had a diseases and these things weren't normal.
Heck we all have a lot of supernatural stuff to contend with eh?! Mine comes and goes like a humming vibration for no apparent reason and has recently been waking me in my chest as well as both legs and feet. I've decided to give up having any expectations of my doctors to be even interested let alone provide answers or try and help. I do sometimes wonder how people with diseases like MS or Parkinson's fare with their neurologists - if they just are made to feel idiotic when they ask for more information as I am? I feel if these specialists don't know then they should at least come clean!