What Does MS "Feel" Like?
 

I had this question asked of me the other day and it got me to thinking. :Hum:

For me, it feels like I'm trying to balance on balloons or balls. I always get the feeling that I'm going to tip over....even though I'm standing on perfectly flat ground.

When walking, it feels like I'm treading through sand under water. It might look like I'm just walking very slowly but it's an effort to put one foot in front of the other and keep my balance all at the same time. Maybe that's why I tire out so quickly.

Sitting for long periods of time requires that, in order to get moving again, I have to stand up and "get my bearings" before I attempt to move. Otherwise, I'll lose my balance and stumble.

Carrying things and/or lifting things like a glass or a breakable item requires my full attention. I have to concentrate on holding onto the item - especially if it's in my numb right hand - and quite often I hold onto it a little too hard. It's exhausting and probably the reason that, cognitively, I'm slow to react or respond. You can be tired mentally as well as physically and quite often both at the same time. Saying "I'm tired" is an understatement.

How does your MS feel to you? What are your invisible symptoms that others can't readily see but you can always feel?

Pain from the neck up.

Everything that should work from the neck up, sensory, doesn't work 'correctly'.

I have burning pain down 1 side of my face.
I have a tongue that feels like I've licked shards of glass.
Gums that feel like they've been scorched with hot coffee.
I smell diesel, plastic burning, smoke, chemical smells that aren't actually 'there'.
I have blurry to double vision (worse when stressed).
I often have a metallic taste in my mouth.
My cheeks feel like they have vein-y electrical pulses running through them.
Stabbing, sharp pains down my left side of my face when I have Trigeminal Neuralgia attacks.
I get a dull pain in my sinuses that feels like sinus infection - when there's no infection at all.
My head often feels like it's being squeezed by vice grips.
Tingling, crawling on my scalp, down the back of my head....

I could go on and on. Basically, nothing feels "by design" from my neck up. It's a new adventure every day.

Poopy, you made me think about my MS..UGH!!!

Mine is pretty much like yours, Kell, except I don't walk much anymore. Sven, my scooter carries me to and fro, most of the time.:rolleyes:

I miss not being able to do what I want to do, when I want to do it. My pain is managable, thank heavens. I don't know how some of you deal with chronic nerve pain.:grouphug:

Not only have I had MS, since my early 20s, I'm 70 yrs old, so I have a double whammy..:mad: Aging and MS don't mix...ya don't know if your discomfort is from the MS, age or both.:hissyfit:

My MS makes me feel like someone is physically abusing me every day of my life. I try to keep a possitive attitude and keep my psychy straight, so I can eek some happiness out for myself and others, but it is a damn struggle.

Other than that, how did you like the play, Mrs Lincoln.:D

Sally, you can find humor anywhere, God bless you!!!

I'll be back to respond to the thread later, when/if I can think!!

I have been hit cognitively and emotionally where MS is concerned...

I feel like an alcoholic and drug user all wrapped into one :(

The vision disturbances....how could I have left that one off? :rolleyes: Blurry sometimes.....is it allergies or MS?

Heat intolerance. Well, now I actually have a good excuse for wanting to be inside in the A/C away from the heat, humidity and insects! Living in GA that is almost 9 months out of the year.

Potty issues :o. Not really a huge issue for me....as long as I am near the facilities. Since I can't walk fast....or run....I have to give myself plenty of time to get there. So there is alot of anticipation going on. Which is mentally tiring in and of itself. Especially if I happen to be somewhere other than home.

Cognitive. I'm so much better in the morning. By late afternoon/evening I'm tired and mentally spent.

All invisible symptoms to everyone but me. No wonder MS is so misunderstood. :rolleyes:

Pre-MS: Ugh, I feel sick.... I bet I'm coming down with that flu that everyone at work has. :cool:

Limbo-period: Ugh, what the heck, the flu doesn't normally come with extreme vertigo, numb hands, electrical zaps and buzzes... :confused:

Post-MS diagnosis: Ugh, I feel sick.... better check for a fever to determine if this is the flu or MS. :(

until recently I hadn't thought a lot about what my MS felt like, but after trying chantix to quit smoking and gaining a lot of weight in the process (I lost 40 pounds in 2006/2007 that is now back /cry) I find myself 'feeling' the MS, not terrible/horrible/awful, but annoying...

I'm wobbly again and fatigue suddenly comes on me for no apparent reason--I sleep for 8 hours, get up, do a few things and I'm exhausted!

so, now I am trying to slowly get back to exercising/stretching, low level stuff and see if it helps with the wobbly and fatigue.

all in all, my MS hasn't been that bad on me so I try not to whine or complain about things. this Fatigue sucks though :(

MY HANDS HAVE TREMORS & shakes. it's harder to carry things, to write, and to be at the computer.

FEAR...my eye dr saw some MS changes in my eyes and sometimes i have visual disturbances.

i'm often off balance. i do the 2 step a lot in my home.

pain almost all the time. the less i do the better i feel but i have to do more to stay moving. use it or lose it.

heat will put me down. almost paralyze me; eyesight, thinking, fatigue, walking. i feel like i can't move. i'm ordering a cooling vest.

i refuse to think about all this on a daily basis. i take 1 day at a time and don't often look beyond that. that's how i stay positive.

My feet feel like they are in vice grips -- from side to side and top to bottom -- and feel like they are broken when I try to walk sometimes.
My hands and arms go numb at random times throughout the day.
I get lightheaded, fuzzy-headed, and easily knocked off track of what I am doing and thinking.
I never know if my bladder or bowels are going to work.

But sometimes the emotional pain is the worst . . . the not "being" there when my partner needs me, the destroyed moments where there could be intimacy, the loss of patience with myself and others . . . and the wondering if I will ever be able to look forward to anything again. Oh, and the having many more bad days than good . . . :( I can not seem to plan anything anymore without having a "back-out" plan . . .