Numbness, not the normal stuff either!πŸ˜• - My MSAA Community

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Numbness, not the normal stuff either!πŸ˜•

Jesmcd2 profile image
Jesmcd2CommunityAmbassador
β€’24 Replies

Sometimes, our friends and family don't understand what this means.

How do YOU explain it to them?😊 We have so many new members that I hope we get some great answers and ideas!

Me personally, I told my bf, to let me break his finger and I would show him numbπŸ˜„πŸ˜‰. We were arguing at the time.πŸ˜‘πŸ˜„

J 🌠

Pic. Swiped from Positive Living with MS.😊

24 Replies
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kdali profile image
kdali

If I had numbness, I would say my whatever is asleep, or its asleep and in a painful way. It's hard describing some of these things.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to kdali

kdali that's what I say! That my feet have decided to take a permanent nap. And it is what it is.😊

Jes 🌠

kdali profile image
kdali in reply to Jesmcd2

Mine is not numbness. I have paresthesia in my legs, feet and rarely hands. Usually feels wavy pins and needles, but not dead and numb. Once I had toe bubbles for half a day. This is all completely different from the lhermittes I've experienced.

What helped me the most with describing what I feel was reading Marlo's book, Awkward Bi**h. She's experienced a wide variety of MS symptoms.

mdok profile image
mdok in reply to kdali

that s exactly what I have in my legs and feet. It is the wavy pins and needles, or more often burning pan in waves. I also get the "your hand/foot" went to sleep feeling less often. I also have spasticity in my legs which causes different levels of burning pain.

Kryptonian profile image
Kryptonian

In 2015 the entirety of my right side became numb . This went on for six weeks. Found out it was a flare up when I was hospitalized for a relapse involving my vision three months later. At the time I was only - and still - going numb in my right fingers and toes.

rlh1974 profile image
rlh1974 in reply to Kryptonian

Wish they had a not fair. Button instead of a like button! Like Facebook. You could do an angry face or something! I hate stories like that!!!!

jennie62 profile image
jennie62 in reply to rlh1974

AGREE with you. The "Like" button seems too harsh!

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to Kryptonian

I'm so sorry that it took so long to find out Kryptonian How are you doing now besides the numbness? Like, what are you up to?😊 We don't hear much from you.😒 😊

Jes 🌠

Shona68 profile image
Shona68

Hi ,for me it like u had a freeze at the dentist and u can only partly feel it ,I also get a weird feeling on the frond o my legs and the only way to describe it is it feels like goose bumps with out the bumps ,some doctors must have a chuckle listening to us at time πŸ™‚ xx

greaterexp profile image
greaterexp

Sometimes I think MS needs its own vocabulary. I often feel like there are no words to explain or clarify the symptoms.

jennie62 profile image
jennie62

greaterexp

I love the idea of having a MS vocabulary. There are days Aaaah seems to be more of an OOOUUCCHH!!!! Then there's the "WHY ME" day.

Jennie

agapepilgrim profile image
agapepilgrim

Jesmcd2 Know what you mean!! Those closest to me )husband and daughter) are actually fed up, tired of, and don't believe me when I try to describe a new symptom or what I am going through at the moment. And they don't understand my total frustration at not being able to say the word I want, or get up and go when I want. They see me have a not so bad day, so think I am imagining it the other days. So i am slowing learning to keep quiet when my hand flips over the coffee, or I turn the wrong burner on and burn something, or my right hand hurts too deeply to text anymore, or I can't get out of bed that day, or my back and neck has suck spasms or leg has spasticity I leaves the room s minute to cry and go to my meditation room I finally set up, my MS room, and talk to Jesus because He understands. Then I talk to my 2 chat room friends, knowing they will understand, and not say, "why are you blaming everything on MD? Get a way to cope!" I grow more silent each day. And remember Maya Angelou poem"why does a caged bird sing?" I'm gonna keep singing for Jesus cause Corrie tenBoom wrote a book on the power of praising God! Praise God for MS!!

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to agapepilgrim

Hold your own agapepilgrim and ~hugs~ we also have to try to remember that as confusing as it is for us to understand. It's even more so for our those closest to us.😊

MSAA has an amazing learning library, that has books for family members. I can get you the site if your interested!πŸ’•

Jes 🌠

jimeka profile image
jimeka in reply to agapepilgrim

agapepilgrim if I didn't have ms I wouldn't have met you and all the wonderful friends I have made on this forum. I love Corrie tenboom she had such faith, I can learn so much from her. I spent the morning at the doctors then hospital having X-rays on my right knee. It suddenly swelled up to the size of a football, pain on movement, very unpleasant. Can you believe because I saw my doctor and she initiated the X-ray, it takes 2 weeks before I get the results. In the meantime I am applying the RICE theory, only I can't do ice as it sets off the Restless Leg, so I sit with a heat pad as it soothes the pain. My doc reckons it's arthritis. We will see, but again I was told well you do have ms. What else can ms lay blame to? In this case my family can actually see something physically wrong so I have had some understanding. It's a shame people don't understand the unseen symptoms. Big hug my friend, prayers, πŸ™ πŸ€— πŸ¦‹ 🌈 Blessings Jimeka

agapepilgrim profile image
agapepilgrim in reply to jimeka

jimeka

agapepilgrim profile image
agapepilgrim in reply to agapepilgrim

@jimeka that is terrible. Fancy1959 has the same problem with her knee being swollen, but it was from a fall, and xrays showed a small tear. I have never heard of anything taken 2 weeks! Yesterday I went to the dermatologist for this 2 month horrible rash that is similar to shingles only it just breaks out randomly in small spots anywhere on my entire body and he did a biopsy, and won't have results for a "week or so." Ridiculous! Went to primary doc, then nuerologist, then to dermatologist. Of course, taking another med for all the itching! At least, they not blaming this one on MS!! I don't think a swollen knee could me MS either. When did MS cause arthritis? It's a separate disease in itself! And more meds! Soak in Epsom salt bath - that always helps! Wish you could take the ice. My husband's knee was swollen and he was using heating pad. Then his doctor said you don't put heat on something that is "in FLAMED." And told how to make a weaker ice pack with salt and water in a quart baggie, freeze it and its not as cold as regular ice pack. It worked! He used it and it greatly reduced the swelling. His is arthritis, and he doesn't have MS! Gotta go get an contrast MRI tomorrow, just hoping the contrasst dye doesn't make my rash/blisters worse! Have a good day sitting back in a recliner, off that knee!

jimeka profile image
jimeka in reply to agapepilgrim

agapepilgrim unfortunately we had the bath taken out and replaced by a walk in shower. Oh how I miss my bath, but once I was in, I couldn't get out, and I could only get a bath when someone was home to help. With the shower I have kept some independence. I like the idea of the salt water ice, I must try that. Hope and pray all goes well with the MRI and I wish the itching would go away. Do you think you could be allergic to one of your meds? Blessings Jimeka 🌈 πŸ¦‹ πŸ€— πŸ™

Doubled51 profile image
Doubled51

My numbness has been in my feet and ankles so far with the pins and needles feeling. But I have to say it has often better with the gabapentin.my Neuro started me on. But i still get the weirdest sensation in my right arm. I explain that I feels like what I imagine restless leg syndrome sounds like. One of those feelings we just can't explain. All you can do is keep moving it cause That's all You can think of to make it stop. Just an instinctive reaction to the feeling. Just such a strange creepy feeling.

jimeka profile image
jimeka in reply to Doubled51

Doubled51 you can get restless arms, it is part of the restless leg syndrome. All you want to do is shake it , and just keep moving it. When I have RLS and it's a bad day, it goes in my arms, legs, hip, around my waist, it's an awful feeling. Blessings Jimeka 🌈 πŸ¦‹

SlmHarris profile image
SlmHarris

They best way I can explain to other ppl is

" when you go to the dentist and they numb your mouth it feels like its there but not there. Well that is pretty much how it feels. Do you remember your mouth waking up and it tingles and hurts at the same time. Well add both if them together at the same time, that is how I feel"

Well you don't look like anything is wrong. What am I supposed to look like? Why would I want to look different.? I am not looking for pitty from anyone.... That is my reaction

Doubled51 profile image
Doubled51

It's def a weird unexplainable feeling. And it drives me crazy cause there's nothing that makes I stop. Can't rest and sure can't sleep.you're right. Not looking for pity Just so relief. Just something else we have to put up with that there's how remedy for. Be blessed.

agapepilgrim profile image
agapepilgrim

Doubled51 oh my! that is exactly what I had last night! and the best way I could explain it was restless arm syndrome. I was shaking my arms, beating the couch with my arms, walking around - it was horrible! I tried 800 mg of magnesium but didn't phase it even after an hour. I finally too more Robaxin and that calmed them down somewhat. It was awful!!! I thought it was from this rash I have on my arms for 2 months, and doc did a biopsy on one of the blisters, and shot me 12 times with lidocaine and ephedrine and reaction to that, but it was both arms. Crazy, crazy MS!

Doubled51 profile image
Doubled51 in reply to agapepilgrim

It's just so weird you can't explain it. I was waving it around up down back and forth and both in helped. I was taking iron pills and my Percocet but nothing seemed to help. It finally settled down last night enough that I got some sleep finally. I'm just upset that my neurologist office didn't return my call about having symptoms. The nurse is usually very prompt in returning calls but not yesterday. So far this morning it's all good. Good luck and God bless.

Daring_Greatly profile image
Daring_Greatly

I experience numbness/tingling sensation in my hands/feet/arms/legs. It is chronic. I don't know that anyone can understand it, unless they have experienced it ...

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