Boulders in my trousers and pillow...

New diagnosis and before diagnosis
1

…or that’s what it feels like.

I am coming out of the episode I’ve had for 5 weeks now so this is not as bad as it was but I had such a strange feeling when my left side was all numb and tingly with pins ‘n’ needles. Although I felt numb on my left side I also felt oversensitive at times too which does not make any sense to me. It sounds confusing even when I type it out here. When I washed my hair I couldn’t feel the left side of my head properly and when led in bed I couldn’t feel the mattress underneath me on my left side. If I laid on my left side when my head touched the pilow it felt like there were hard lumps right where my ear was (my ear was particularly affected with numbness and is one of the last things to get better now). Also, when I would lean against something like a wall or chair with my thigh touching it felt like I was leaning against big pebbles or stones. Although my leg felt numb I could still feel this hard lumpy sensation which caused a horrible pain-like feeling but not really pain. I can’t explain it.

I also noticed that when I was sat down I would sometimes lean forward and rest my arms on my thighs but it felt like my arms were really digging into my legs like they were made of marble or concrete or something very hard.

Has anyone else experienced this at all?

Also, I found I couldn’t (and still can’t) wear most of my shoes as they felt really hard and rigid. Heels also made my calf muscles feel stretched and hurt the back of my ankle too. I couldn’t keep flip-flops on as I couldn’t feel my toes to grip the toe-post so they just kept flying off the front of my foot. I was only really comfy in my slipper boots.

2

Also, when swallowing, it feels like lumpy sludge is slowly being pushed down my throat. It also feels like my throat (oesophogues) is smaller/narrower, as though I can feel every little lump or texture of the food I am swallowing. Liquid doesn’t have the same feeling but I tend to swallow it down the ‘wrong way’ a lot and splutter on it.

3

esophagus*

4

…And the feeling of headlice! One part of my head on the left is constantly itchy. I keep scratching it but it only goes away for a few seconds, maybe minutes at best, before it is back again. It feels like I have headlice on that one patch of my head. I even checked for lice! None. It just keeps itching.

5

Morning Midnightmoon!

Waaa haaa haaa!!!

Boulders in my trousers!!?!!?!!

When I saw that title I was a bit wary of what this post was going to be about!! lol x

Some of these symptoms are so wierd and strange that it’s hard to find the words to describe what they feel like.

I know my hubby looks daft at me when I say things like 'Ewww! there’s water running up my head!!" or the “Ooooffff ! The invisible fleas are biting me again!!!”

From what I’ve experienced and reading others posts - the ‘oversensitive’ feeling at the same time as the numbness is not unusual and I’ve heard lots of people describe their foot pain as walking with stones or pebbles in their shoes too x

Sometimes someone else’s description will hit the proverbial nail on the head!! It’ll give a clear description of something you have been struggling to put accross for ages!

For example, for months I had been telling the docs and everyone else that I was experiencing ‘flashing lights’ to the left and underside of my vision. The optician thought I was meaning ‘bright spots’ of light and was not taking this too seriously. Then someone on another site described their symptom as ‘a yellow lava lamp constantly bubbling up the side of your vision’ - bingo!!! That’s exactly what I’m experiencing 24 hrs a day but couldn’t find the words to describe it!!

Suddenly the eye doc understands that it’s not spots of bright flashing light at all and more importantly he knows what it means!!

xxxjenxxxxx

6

Yep all sounds like the MonSter having a party.

Please take note though that swallowing difficulties and stuff going down the wrong way (aspiration) can cause significant health problems.

If this is a regular occurance please ask for a speech and language referral for them to assess your swallow.The last thing you need is a chest infection aswell.

Take care

Pip

7

Hi and thanks for your replies!

I am only just on here tonight. Feeling really good today so went shopping with a mate and sat in costa having a chat. Did the charity shops for bargain DVD’s. Did the kids an omeltete and we watched a film.

Still got the weird numb/oversensitive stuff going on in my hand, foot and ear but the old ribcage squeeze is much less severe today too. Also not feeling flaked after cooking etc. Just wish I could shift the remaiing symptoms. I have my first neuro appointment on Wednesday. I’m not expecting too much so will just go from there. I also have an MRI booked for next month so things are moving in the right direction at least.

Yes, sometimes you can’t put our finger on a symptom exactly until you read someone else’s post and you think “Eureka!!”

LOL Kizzydane! I was trying to think of an attention grabbing title so I might get some replies :wink:

The sounds in my ears at night are pretty awful at times and keep me awake. I get a constant swishing sound a bit like when you hold a seashell to your ear and you can hear the sea/waves? Like I can actually hear my blood being pumped around my body I also get a high-pitched whistle but thankfully that doesn’t last long! …and then sometimes I swear I can hear soft music playing in the distance or a TV in the background although there is nothing on as I am in bed and kids are asleep. The first few times I got up to check but all was quiet.

Have not experienced ‘pebbles in shoes’ yet. Sound horrible! That’s got to be the worst ‘pebble pain’ because you can’t actually get anywhere without walking (unless you are in a wheelchair). How do you cope with that? I have some crocs that I forgot about. Maybe they would be good too? My feet feel much less tender today and I wore my winter boots with fur lining and they felt lovely :slight_smile: I am a devil for shoes and bought myself two more pairs of heels today too! Eeek! I hope I am not being too optimisitc but I can’t bear the thought of never wearing all my lovely shoes again.

I’ve not had the laval lamp eye thing either. I had really severe double vision in my right eye which is getting slowrly better, the two images are coming together now but I had to wear a patch over the right eye for weeks just to stop me feeling so sick and dizzy and disorienteated. Trying to cross a road was mad! I had to get my kids to help me cross. It was a role reversal!

I didn’t think about swallowing problems leading to any major health problems. That part is getting better now. It wasn’t really difficult to swallow but just felt wierd like the food was being pushed down a smaller tube. I have always had problems choking on stuff, for years, usually chocolate sets me off.

Anna, yes, my ‘headlice’ patch is just above my left ear somewhere between my crown and the top of my left ear. Not so bad today but still a little tingly and itchy at times. I seem to notice it more at night. Maybe because I am sat quietly and notice more or maybe because I am more tired?

8

Morning!

I’m thinking there must be a prticular ‘Naughty Nerve’ in that area of the head!! A few people have mentioned it x

My left eye constantly twitched and spasmed really bad for 2 months - even keeping me awake at night - and at it’s peak I was regularly having this ‘cold water running’ sensation from behind/above my ear up towards the crown of my head - this would last a few minutes at a time then it would suddenly turn into a patch of numbness for a while and then it would become really painful touch!! - like someone had pulled my hair really hard!!! Someone actually asked the question “why is my hair hurting?” bless them xxx

xxxjenxxxx

9

“Why is my hair hurting”. lol. I like that! :slight_smile:

Feeling a bit energyless today. Myabe is was from the shopping trip yesterday but I have little to do today so I can just relax. Just got to do normal everyday stuff like hanging washing out and flick the hoover around quickly. Maybe pop to shop for choccie :slight_smile:

It’s a lovely sunny day in Befordshire :slight_smile:

10

Hi, I agree with other replies the swallowing thing should be investigated.

But then you post to say things aren`t so bad now. Good to hear that.

Regarding the tinnitus type sounds in your head at night…a friend of mine has a special pillow for this, which helps enormously.

Can you google this and see if it something you`d like to try?

I get that awful pins and neeldes in my feet, at night, which turn to a very heavy achey numb feeling. Mad to describe, I know!

It only goes if I pull my legs and feet (really hard to do) up lie on my side…again, difficult with my sore shoulder.

Fun innit!

luv Pollx

11

Ah, I didn’t know you could get special pillows for tinnitus-type symptoms. Shall have a google, thanks :slight_smile:

For the past couple of nights I have noticed the ‘hug’ feeling turning more into a kind of muscle spasm. It gets worse if I laugh or if I inhale deeply. Also noticing a crampy-type sensation if I stretch my arms. I get the pains in my shoulder muscles and if I stretch my legs or my feet I get the spasms in my calf musles or arch of my foot. As soon as I release it goes away again. It seems if I over-stretch muscles they spasm, or start to.

It is difficult not overuse certain muscles because I have Tourette’s also so I do tend to have a few distonic-type tics. This is not helping at all right now. Hmpf! The whole of my left side/ribcage spasmed last night due to a tic.

12

Just had a quick google but they seem to be pillows with built-in speakers? The one thing I can’t stand is any noise at night. I have to have silence and darkness to sleep. I seem to be easily distracted and have always had difficulty sleeping. I suffer from Insomnia too which seems to be part and parcel of having TS. Almost everyone I know with TS ( and I know a fair few) have trouble sleeping. The pumping sounds I hear do drive me a bit batty at night sometimes.

Strangely enough, when I lived in a flat by a busy road, about 15 years ago, I don’t remember having problems sleeping. I kind of liked the sounds of the cars going by. Weird I know. I wonder if you can buy car sounds CD’s? I wonder if it would even work? Hmmmm…possible idea coming through. I’d forgotten about the cars until just now.

13

Just had a quick google but they seem to be pillows with built-in speakers? The one thing I can’t stand is any noise at night. I have to have silence and darkness to sleep. I seem to be easily distracted and have always had difficulty sleeping. I suffer from Insomnia too which seems to be part and parcel of having TS. Almost everyone I know with TS ( and I know a fair few) have trouble sleeping. The pumping sounds I hear do drive me a bit batty at night sometimes.

Strangely enough, when I lived in a flat by a busy road, about 15 years ago, I don’t remember having problems sleeping. I kind of liked the sounds of the cars going by. Weird I know. I wonder if you can buy car sounds CD’s? I wonder if it would even work? Hmmmm…possible idea coming through. I’d forgotten about the cars until just now.