This is my first posting so not sure how it works, but I’m giving it a go!
I was diagnosed with ppms 3 years ago. I suffer with very sensitive areas- left palm, inner left thigh and small of back, and with what I liken to ‘hot spots’ in my feet that come and go randomly. I have been told I have dysaesthesia and I have seen similar descriptions to those pains on here. Recently however I have been getting a new pain - to begin with it felt like a trickle down the inside of my left ankle.Now it has become a pain all over my upper left foot. The way I describe it is its like the flesh has all been taken off, someone has placed a towel over it and is now slowly peeling it back! If anything I would describe the pain as a cold one - but the majority of descriptions on here describe these pains as hot? Can anyone relate to the pain I am describing?
Hi something similar I often check to see if my catheter leg bag is leaking because I feel something like water on my leg. It never has been leaking. But it really feels like it is even when I checked.
When I described some of my pain to someone, they responded by saying that my mind is playing tricks and deceiving me. It may be oversimplifying it or underestimating its impact but I think the basic premise is fairly accurate.
I get the flame throwers on the legs when I move followed by the arctic blasts. It’s hot and cold at the same time. I feel as though my legs are submerged in a grassy bog whilst being picked at by an army of parasitic worms. I’m also constantly checking that I’m not wet. Funnily enough, it helps me to write about it. My imagination can go into overdrive with it.
Welcome to the forum, lots of lovely friendly people here, always willing to listen, and offer advice when they can.
Pain is really a difficult one to describe, I also feel like water is on my thigh, when it’s not, but I also get what I describe as feeling like a red hot poker inside the top half of my legs, really horrible.
During the day I can have the usual numbness, pins and needles, twitches etc, but this is always worse when in bed at night, making sleep difficult.
I mainly use a powerchair inside and out now, but when I walked using crutches, it felt like I was walking in deep mud or treacle.
I was diagnosed, finally, with PPMS only in 2014 after a second round of MRI scans, at the age of 61. I won’t dwell on the limbo period leading up to that.
These strange sensations are very unnerving and more troublesome than quantifiable pain. My lower left leg is usually cold and does not improve with such things as a heated overblanket. The skin around my ankles feels like I have a permanent rash which is not only uncomfortable but fools me into thinking the area is swollen, when it is clearly not.
I am still mobile and I can move about the house hanging onto furniture. I use a stick around the garden and a rollator for short journeys. Anything further, I use my scooter. The days of cycling and long walks are distant memories.
As long as my brain keeps working and I can stuff it with books, plays and music etc. I feel that I will survive.
Hiya Steve I get a cold type pain on my ankle and up into my leg that feels like someone’s holding a mr freeze against my skin. It sounds crazy cos it’s cold but it starts to burn after a while even though it’s a different type of burn from my other burn pains - cos those ones are hot. Ms is mental… or is it just me…
Hi Steve and welcome. Like the others I get a lot of pain and odd sensations and the type varies from feeling like ants are crawling over me, itching, burning, being scalded, muscle twitches, muscle spasms, bruised or broken bones, joint pain or even feeling like someone has stuck me to a door and I can’t bend anywhere.
I don’t know if some of its in my head, I just know that it really hurts at the time and I’ve broken skin scratching as it all feels very real. From what I’ve been told though it’s all possible depending on how my nerves are being affected, so don’t feel stupid or frightened to describe your experiences to your nurse or gp, if they’ve experience of nerve disorders they’ll understand.
Like Cath I get all these crawling, burning, itching, scalding things and I too have broken the skin s rat hung etc. Two things have me enormously are LDN which took a while but has reduced it considerably. The other thing I use sometimes is Lanacaine cream which I found after trying endless creams and potions, it deadens the nerve endings.
I didn’t realise that neurological pain is defined differently to normal pain. All this numbness, pins & needles, hot/cold/wet patches, electric shocks are neurological pain. Basically, it’s all the confused messages. I can’t find the simple definition I came across, after telling people “oh no, it doesn’t hurt me” when L’hermittes & Uthoff’s were symptoms mentioned in my diagnosis, oops! As a migraine sufferer, I just didn’t consider it as pain.
I take pregabalin and it takes the edge off it. I also have parts of my body (feet specifically, hands occasionally) that have dramatically different temperatures and my GP checked pulses etc. and decided nerve damage. I just take extra care (socks!) and ‘touch test’ if something feels wrong, if my foot actually feels cold to me then it’s time for a hot water bottle