Nikkinakkinoo is having a really bad time of it at the moment bless her - but she made me chuckle this morning by describing one of her symptoms as:
“feeling like my trousers are made of brillo pads”
I have a small muscle right near my bottom that ‘fasciculates’ and drives me nuts - In town the other day I turned to my hubby and declared…
“Eww! My bunghole is fluttering!!”
It just came out like that!! I’ve never seen my hubby laugh so much - he was in absolute stitches!!
I know we are all suffering - but sometimes you have to laugh or you cry! Does anyone else have funny ways of describing these horribly mad symptoms that could cheer us up a bit this morning?? xxxxjenxxxx
My hubby was in stitches laughing the other day - I have a small muscle right by my bottom that is ‘fasciculating’ all the time - such an odd sensation - and very annoying!! in the middle of town I said to him through gritted teeth …'Ewww! My bunghole is fluttering!!" It just came out like that!! I’ve never seen him laugh so much!!xxxjenxxxmade m
I get spikey feet like walking on Hedgehogs…I have never walked on a hedgehog (& don’t intend to) so how on earth would I know???
I discribed my weakness in walking / heavey legs like walking up hill in treacle…How many hills have you seen covered in treacle?
My Muscle twitchs as aliens under my skin! Maybe they have taken my brain with them…I feel compleatly bonkers when trying to discribe this to my rather stright down the line neuro!
I have also had burning biting bugs in my socks and trousers.
Oh yes then every thing looked “flat” and had no proper edges…Neuro did think I was odd then and sent me for eye test and guess what I had lost all 3D vision and depth perception…so maybe not quite so mad then?
Maybe reserve judgement on that as I am not so sure myself!
Humour is ALWAYS good! I’m a big advocate of humour at appropriate times. Obviously no good trying to cheer someone up when they are not wanting to be cheered.
“Like walking through treacle” is the exact same expression I used when describing to my ex how it feels to walk, when I was at the worst part of my episode.
Although I was numb down my left side with pins and needles, I still had an oversensitivity, which doesn’t make sense really when you’re numb but that’s how it was. When I would lean against something that my thigh would touch it felt just like I was leaning against a stoney wall made with those big pebbles sticking out from it. When I was sat down and leaning on my thighs with my forearms it felt like my arms were made of marble digging into my thighs. It really felt like the left leg of my jeans were packed out with pebbles and rocks so everytime anything touched my left leg, it hurt… My pillow felt like it was made of rock when I led on it with the left side of my head. Because I was numb on my left side, from head to toe, it also meant that half of my ‘bits’ were also numb, which felt so weird! My left buttcheek also numb. So odd when on the loo. Won’t go into details there though! lol.
Oh and headlice on one patch on left side of my head. I even got the nit comb out to check. No nits or lice. That was so annoying though. Constant itccing on that one patch for a few days.
I forgot that one…and it was the part of the discription that lead me to the neauro in the 1st place, I felt that I was sitting on a stone cold wall even when I was stood up!
Others I could discribe is a tight belt, a hat on my head and wet socks.
I made my hubby read some posts on here because I think he thought I was being a drama queen with my descriptions!!
But the sensations are so odd it’s really difficult to get people to understand exactly what it feels like! It’s so frustrating!! I’ve woken up a few times with the sensation that somebody is lying on top of me pressing me into the bed!! There is no other way to describe the ‘heaviness’ and inability to move!!
I described my ‘altered heat perception’ as ‘lying day after day, night after night on a sunbed in the hottest & most humid country ever - with my right hand and foot in buckets of ice’ - spot on I think!!! xxxjenxxx
I was watching a few of the MS Life video’s the other night and the one where they got a woman to fill her wellies with sand and then walk was so realistic. The way she was walking with those sand-filled boots on looked hilarious! and just the way I was walking for a number of weeks. In fact, I still do, but to a lesser extent now.
Jen, the description you mention about having someone lying on you and unable to move sounds also very similar to sleep paralysis. I have two friends who have had that experience. One, a young lad with TS and a friend who said when she first woke she thought there was someone in her bed holding her down so she couldn’t move! For one split second she felt a terrible fear, especially as she in single, and has a fear of her home being broken into. I can’t imagine what that must feel like. Sounds awful. She was then able to move and looked up her symptoms online. It fitted with the sleep paralysis and I mentioned to her about my mate with TS who also had an episode of it.
There was a Dutch (I think) website I came across a while ago where they were making little video’s of what it’s like to have MS and there was a typing one. I was really surprised that I had that same symptom when trying to type. I kept typing the wrong word or letter, I kept pressing the wrong key. So frustrating but so realistic. I was so excited by it! I was like 'That’s me! That’s me!"
There were other video’s like wearing boxing gloves and trying to separate pieces of paper etc.
Waa haa Poll!! My personnel department already think I’m potty - I’m going to ask my GP to put Fluttering Bunghole on my next sick note!!! xxx
On a more serious note though - my GP actually put ‘Lethargy’ and ‘Neck Pain’ on my first note!!! I was fuming!!!
They put ‘Neurological Investigations’ now though - thank goodness!!! xxx
[/quote] GPs don’t you just LOVE Em??? when I first started with my symptoms I thought it was a back injury…back and forth I went to diffrent GPs as you can never see then same one…One GP told me to get my children to walk up and down my back!!! Would be kinda funny if I wasn’t 4 feet 9! and have had back sugery! Needless to say I chose to ingnor this bit of advice.
Ppx btw I hope I hve done the ‘quote’ bit right as a bit silly when it comes to technology! xx
This bit too x I’ve always had the ‘screaming nightmares’ - my brother used to call it my ‘banchee wails’ !!!
I would wake up and literally not be able to move - I would start screaming inside then suddenly I could move and the scream would burst out!!! When it happens I’m literally totally paralysedand often the ‘paralysis’ is accompanied by ripples of ‘electric’ current from head to toe! Most unpleasant!! Wonder if it’s connected! xxjenxx
Right now I have the Itchy Oojars, which are just a pain in the bum (well feet) and sometimes feel like I’m constantly in a bear hug… ooh im not very good at funny names…
written on my report from the neuro word for word is: ‘she describes her left foot feels like it’s wrapped in cotton wool and also has feeling like walking on broken glass and suffers confusion’
haha… my kids say ‘mum’s spazzing out again’ when i get jerks and muscle fasciculations in my hands and feet!
I’m a big advocate of humour at appropriate times. Obviously no good trying to cheer someone up when they are not wanting to be cheered.