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 . . .

I don't wanna talk about it...:(

After a long and very tiring day today (I overdid it majorly) I realize that I have precious little tolerance for "drama" anymore. I don't know if that's just an aging thing or an MS thing or maybe a little of both! :o

:heartthrob:(((((Kelly))))):heartthrob:....Whuh happened, dear?

Well, I had to take Panda to the vet yesterday morning. She's fine now but I really wasn't expecting to have to take her. I also had a doctor's appointment myself in the afternoon and I didn't get to take my nap (wah...wah...:p).

There was a woman at the vets office that was so loud and obnoxious. She even scared the little cat that was in the adoption cage in the waiting room. :rolleyes: She would not lower her voice and was trying to get attention. She kept complaining about everything under the sun and there was nowhere for any of us to escape to! Ugh.....stressed me out for the whole day! By the time I got home from my own appointment later in the afternoon I was exhausted.

But I'm fine now..........;)

Wearing thigh high fishing boots that are too tight and filled with cold water and sand. And they never come off

You got a pair of those, too!!? I hate mine and will give them to anyone who'll take them.

It feels like I'm 95 years old.

Tightness in legs and back that occasionally will lock up and cause agonizing pain...otherwise, tightness and an achiness. Think of being on a rack and having someone stick a blazing hot poker in your muscles at the same time they're stretched to a painful place...
cognitive problems that are increasing...makes me sad...think of the foginess when doing math you just don't get...and when you have a black out during a test...that's my brain function.
Bladder probs...it's a race between my 87 yr. old MIL and me to who needs to get to the bathroom quicker...and bowel problems too...which are disgusting...
Neuropathic pain that takes my breath away...put a short-wired lamp in your hand, turn it on and leave your hand on it while it sends electricity into your hand.
And fatigue...I hate it when I say I've got MS fatigue issues going on, and someone says, "I know how you feel...I've been exhausted."
No, you don't know how I feel...it's the most bone-crushing, noodle-legged feeling in the world. When I fall asleep at the dinner table, my kids know I'm MS fatigued and send me to bed.

Heat-no, it's not just I'm sweating...I see the sidewalk turn on a 90 degree angle...my vision goes darker so it seems that someone just left the shade up a crack to leave shadows...I feel like my legs are wet noodles...and everything seems "not right".

Stupid disease...:mad:

It feels like****:eek::p.

What MS feels like for me...

The fatigue causes me to fee like I'm trying to walk in 4 ft of the thickest mud.

My brain feels like someone put a set of jumper cables in my brain and are on the other end revving the engine up. It's very electrical and painful. Or sometimes it feels like somehow this lightning bolt got in my head and it's frantically trying to find it's way out and can't.

The spasticity in my back muscles feels like there are two sets of strings, one on each side of my spinal cord, that are being pulled as tight as they can causing all of my muscles to clench up.

The neuropathy in my arms/calves feels like someone is stabbing me with a pair of rusty stainless steel scissors and tearing them back and forth up and down.

The vertigo (while sleeping) feels like I am on a rollercoaster ride from hell and my brain can't stop flipping around in my skull until I wake up, sit up, and catch my bearings.

The cognitive issues make me feel like I need to be locked up in a psych ward or that I am on some serious trippy drugs. Like I'm stuck in a bad trip and there's no getting out.

I hate driving to a destination and completely forget on the drive where I am driving to, causes a very panic[y] like feeling which is so not cool.

Sometimes my eyes do the tunnel vision thing. or sometimes everything has fog over it, or sometimes I randomly lose all eyesight for 1-2 minutes, that's creepy.

Sometimes MS manipulates my brain and makes me really mean and angry and hateful. Sometimes it makes me want to break down and cry.

All in all. What MS feels like to me is a big fat ugly painful electrical hemorrhoid. yeah. I said it.

You guys are so tough I admire you all. I have a b12 deficiency and MS like symptoms and thought I had MS until I got everything checked and tracked down my Ulcerative Colitis and b12 issues. I have some permanent damage but can deal with it since it is stable and really nowhere anything like your issues in severity. I am almost embarassed to even be a member here at this point as i feel not worthy.

I remember how scared I was and reading your posts has me awestruck at your calm and strength dealing with your issues. You are truly an inspiration for me.

My mother was in a nursing home years ago and her roomate had MS and I learned a lot about it as a teenager there. God bless all of you.

My head is filled with fairyfloss (cotton candy) I know that my thoughts are there, but when I try to grab them they are gone - just disappeared, my legs are filled with concrete and my feet are filled with hot coals at night and .....other parts of me feel like I have a cattle prod implanted.

Added to that, every afternoon fatigue hits and someone lets my tyres down and the road feels so much rougher.

I am not always like this - this is how I feel on a bad day.

Lyn

Sally, I love that quote "other than that, how did you like the play, Mrs. Lincoln?"

I too have had whatever I have in active form since 17, with a few preliminary attacks such as the one at 11 when I had poor eye-hand coordination and exhaustion which no one believed I really had....a precursor to years of the same later. I have been dx'd with MS, Porphyria, Polycythemia Vera, and Monoclonal Gammopathy. I may have them all. Porphyria has so many neuro symptoms like MS that it's hard to tell them apart, and I do have the brain lesions found on MRI a quarter century ago when I got MS diagnosis--about 25 years ago, too tired to count the years.
It's been a long life, Sally, for me too, and I'm wishing to go "Home".

Mariel

It has helped me to read all of these descriptions, to revisit some of my own neuro symptoms, since I am focused more (too much) on my rare blood diseases these days,
which add to the foot neuropathy very badly.

It seems many of you---almost all of you--have the same acute and occasionally stabbing pain, as well as numbness (how to have both stabbing pain and numbness) that I have. Mine is primarily in my feet. It seems to be a combination of neuropathy and
erythromelalgia, a condition where the microvascular things in the extremities get clogged with too much blood or too sticky blood or too thick blood (doctors seem vague on what this is). If I take Interferon chemotherapy, the feet improve a lot, but the INF
has horrible side effects....absolutely awful.

I also have had loss of balance, but it helps to do Balance PT, which I am again involved in now....PT always provides help for me even where I thought it impossible. My balance
was pretty good most of my life but now it's much less good, so I have to be careful.
Again, I do not know which of my diseases causes the imbalance...maybe all of them.

Spasticity, which a few of you described, is my most characteristic response to a drug or
food which is bad for me--which may be primarily a Porphyria sensitivity rather than MS.
I get very spastic, too, if I don't have enough magnesium and calcium in my diet, and B1
helps too. I got so spastic on one drug, an antibiotic which I forget the name of, that I could not walk around a corner and I lost all color vision.

I had a long period of eye trouble but it is mostly gone now, for many years. things have changed and morphed a lot for me. Like Sally, I have had MS and or the "other thing" for way over 50 years, and I am plumb sick of the whole thing. But I have enough good food (Swank diet) and warm house and occasionally see my grandkids, and have hope in God, so I am ready for the last lap (but wish I didn't have to take it).

We all have to take that last lap, Mariel, but I feel that we may not have to spend as much time in purgatory and swoosh right into heaven..:D :hug:

Good thought, Sally! And those are beautiful May flowers.
Today my neighbor brought some plants to put in my long
planter in front of the house. I have not been filling it with
flowers, even though I'd like to, because it's one more journey
to take with my sore feet, to go buy the plants, get them in
and out of the car, dig up the dirt, and put in the plants. My
neighbor started the planter and says she will get more plants
for me every time she buys for herself...and she buys lots.