I have some interesting associations /causations with my nuropathy.
From classic drag foot, weaker left side . Droopy/lazy eye. Eye twitches essential tremors/
During tmes of bad flare ups i smell things no one else smells. I have certain sound pitches that drive me to distrctions. ( Similar to electrical hums) Certain frenquences affect me as well.
While having gone through the testing and my nurologist said while some things are strange most fall into the catagory of affects of nuropathy.
So my question to yall is do yall have similar symptomolgy or just the pain/flare ups? ( just wondering )
You mentioned smells, That caught my attention immediately. My sense of smell seems to be overactive, if that is the right word. But I smell things that no-one else seems to..... Its as if the smell is so much stronger to me. There are days when my sister would call, and I would only have to open the door and she says hi how are you, I just say oh God you had garlic,.... or when she leaves I have to open the window because of the smell of perfume... no-ones else in the house complains about it........ but from people aswell, i can smell foods from their clothes etc..... I have often said oh God I thought I would get sick with the smell in their etc..... and my husband would say I didnt get any.
I just had to post that as my sister now phones and says I had garlic two days ago is it safe to call !. This really has been an on going joke in the family the way I smell things, but my husband claims my hearing is the same !!. Glad to see someones else has noticed it.
Round i had to stop going to mass on Sunday i would sneeze entire time due to overwhelming perfume smell . I go mornings and when able Saturday mass.
Food stuff doesn't seem to bother me. It is scents of mold/cleaning things perfumes body odors that hit me the hardest. I did discover that low does of amitriplene help when the nerves are going hay wire, and then most of the above mentioned stuff calms down. I also always use white noise to block out the hums . I found a sound home medic machine that has water/rain/storms ocean and that most certainly helps ( fairly cheap under 30) at the drug store
I never associated the change in my sense of smell with a flare--I'm always so consumed with the pain, I never paid attention. But now that you mention it, I remember telling my hubby he is wearing too much after shave, when he claimed it was the same amount he's always worn. I know he thinks I'm crazy....(which I am) but at least now I can attribute one facet of my madness to this...
As far as how I react otherwise, I pretty much lay around and moan, grip the effected body part (either my upper arm or my leg, depending on which one is flaring), weep occasionally, and hide from the world, since no one really gets it. Heavy on the moaning.
Well, had another flare tonight so it is fresh on my mind. I tend to keep my overall pain level at a 4 or 5 and can function fairly well. However, in a flare, I am almost always down for the count. I get really deep aching and then burning. The burning is relentless and usually lasts for a few hours, at a minimum. Days at the other end. The worse it is, the lower down my leg(s) the pain goes. If it gets near my calf, I really have increased anxiety, because very soon, I will have fire shooting out my feet. There is no comfortable position, I just have to suffer until I get it under control.
I immediately change my plans to hunker down, because I will "lose" my leg and fall extremely quickly and easily during a flare. Sometimes the fire shooting out my feet will be so quick and intense just that makes me almost fall to the ground, but usually it is a true weakness in the leg.
I haven't noticed any heightened sense of smell - that is really interesting.
When it gets really bad for me, it centers across-don't laugh- my sitting bones. and running up and over my riight hip. It usually tends to peak at work where I will shift around alot and talk to my leg. I tend to mutter at it and tell it that I can't afford to have any issues at this time so could it please behave and wait til we get to therapy (if it's Monday or Thursday?) My boss has gotten used to this and it no longer bothers him to hear my yammering to my butt. But he has figured out that if I hum all day it is really off charts and we had all better step very cautiously. For heavens sake, you'd think I was a moat dragon! Taking off my shoes and walking barefoot helps as long as someone doesn't step on my pretty little toes!
Smells I don't get. But throbbing burning heat I get....