OVERSIZED FEELING IN ARMS/HANDS

[M64]

HI THERE,

I HAVEN'T BEEN DIAGNOSED WITH MS AS YET, BUT WOULD APPRECIATE IT IF YOU COULD TELL ME IF YOU HAVE EVER HAD A FEELING OF YOUR LIMBS BEING REALL REALLY OVERSIZED?

IT WAS A VERY ODD FEELING; NOT PAINFUL BUT FELT LIKE I HAD A WET SUIT ON WHICH HAD BEEN PUMPED UP?

ANY THOUGHTS?

REGARDS M.

[M64]

HI NANCY,

THANKS FOR YOUR SECOND RESPONSE.

MANY THANKS FOR THE BOOK SUGGESTIONS, SOUNDS GOOD, FROM THE POINT OF VIEW OF PATIENT-DR DIALOGUE/COMPLEXITIES.

HOWEVER, WITH REGARDS TO PUSHING HIM INTO A POOL AND MAKING HIM USE THE LIMB; SADLY I KNOW OF A SEVERELY AFFECTED PATIENT WITH M.E., IN FACT A CHILD WHO WAS FORCIBLY REMOVED FROM HIS PARENTS CARE AND THE PSYCHIATRISTS THINKING WAS THAT THIS CHILD WAS MAKING IS ILLNESS UP (M.E. IS A SERIOUS NEURO-IMMUNE DISEASE, NOT UNLIKE MS IN MANY WAYS, BUT STILL TREATED AS THOUGH IT'S ALL IN ONE MIND, DESPITE BEING CLASSIFIED AS A NEUROLOGICAL DISEASE BY THE W.H.O. SINCE THE 1960'S) AND HE WAS THROWN INTO A POOL, JUST AS SACKS DESCRIBES, BUT THIS POOR UNFORTUNATE CHILD COULD NOT MOVE AND PROMPTLY SANK TO THE BOTTOM. HE HAD TO BE RESCUED BEFORE HE DROWNED!

I'VE BEEN TREATED BADLY BY SOME DR'S WHO BECAUSE OF MY PREVIOUS DIAGNOSES OF M.E., THEY HAVE ATTRIBUTED EVERY SYMPTOM SINCE THEN TO M.E. WITHOUT GIVING ME A CHANCE TO EXPLAIN; SO I HOPE YOU'LL UNDERSTAND MY AFOREMENTIONED SCEPTICISM!

REGARDS M.

[M64]

HI THERE,

MANY THANKS FOR YOUR REPLY TOO.

WOW, THAT'S A GREAT DESCRIPTION AND EXACTLY WHAT HAPPENED TO ME. I TOO CHECKED THAT MY LIMBS HADN'T SWOLLEN UP, AS THAT'S WHAT THEY FELT LIKE AND I EVEN ASKED MY EX-PARTNER TO CHECK THAT MY LIMBS HADN'T GROWN IN SIZE. I HAD TWO NIGHTS OF THIS, BUT CAN'T REMEMBER IF I HAD TROUBLE SLEEPING. I WAS IN BED PRETTY MUCH ALL DAY, NEW YEARS DAY, AS I'M ALSO HAVING HEART PROBLEMS. MY FEET/ANKLES AND LOWER LEG WERE VERY SWOLLEN THE NIGHT BEFORE AND FELT EXHAUSTED; SO I MAY HAVE HAD TROUBLE SLEEPING?

I THINK MOST PEOPLE CAN SAY THAT THEY HAD SOME SORT OF SYMPTOM(S) AS A CHILD, BUT NOT THINK ANYTHING OF THEM AT THE TIME. I HAD BRIEF PERIODS OF DISABLING DIZZINESS AS A CHILD AND I ALSO REMEMBER STRUGGLING TO WALK HOME ON A FEW OCCASIONS FROM SCHOOL, AS I FELT SO EXHAUSTED! I'VE HEARD THIS A LOT FROM PEOPLE WHO HAVE MS...

REGARDS M

[M64]

HI THERE,

MANY THANKS FOR YOUR REPLY TOO.

I'VE HAD A FEELING OF HEAVINESS/EXHAUSTION IN THE LIMBS, LEGS, AS WELL AS ARMS, BUT THE FEELING OF MY LIMBS BEING OVERSIZED HAPPENED WHEN I WAS IN BED BOTH TIMES, LIKE SOMEONE ELSE SAID, NOT WHEN I WAS UP AND ABOUT. I HAVE BEEN SO IMPRESSED WITH THE AMOUNT OF RESPONSES TO MY POST AND IN ALL FAIRNESS, DIDN'T EXPECT SO MANY PEOPLE TO SAY THEY HAD SIMILAR, AS I KNOW THAT NO TWO PEOPLE HAVE THE SAME SET OF SYMPTOMS!

REGARDS M

[M64]

HI THERE,

MANY THANKS FOR YOUR REPLY.

I'VE HAD A FEELING OF HEAVINESS IN THE LIMBS, LEGS, AS WELL AS ARMS, BUT THIS TENDS TO HAPPEN IN THE DAY TIME. THE FEELING OF MY LIMBS BEING OVERSIZED HAPPENED WHEN I WAS IN BED BOTH TIMES, LIKE SOMEONE ELSE SAID. I HAVE BEEN SO IMPRESSED WITH THE AMOUNT OF RESPONSES TO MY POST AND IN ALL FAIRNESS, DIDN'T EXPECT SO MANY PEOPLE TO SAY THEY HAD SIMILAR, AS I KNOW THAT NO TWO PEOPLE HAVE THE SAME SET OF SYMPTOMS!

REGARDS M

[M64]

HI THERE,

THANK YOU SO MUCH FOR YOUR REPLY.

YES, SKIN FEELING REALLY TIGHT AND FEELING LIKE IT WOULD BURST OPEN IS A VERY GOOD DESCRIPTION OF HOW MY HANDS AND ARM FELT!

THE HEAVINESS FOR ME TENDS TO OCCUR TOGETHER( NOT ALWAYS) WITH LIMB STIFF AND I'VE HAD OCCASIONS WHERE I'VE HAD TO DRAG MY LEGS, AS I COULDN'T BEND THEM!

REGARDS M.

[M64]

HI THERE,

THANK YOU SO MUCH FOR REPLYING.

I HAVE A SIMILAR EXPERIENCE AT TIMES, WHERE MY LIMBS (HANDS MAINLY), DON'T FEEL LIKE THEY BELONG TO ME. I CAN SEE MY HAND IN FRONT OF ME, BUT I DON'T ACKNOWLEDGE IT AS BELONGING TO ME. I'VE HAD THIS SEVERAL TIMES NOW AND I THINK IT'S ALWAYS BEEN MY LEFT HAND!

I DON'T GET EXACTLY WHAT YOU HAVE DESCRIBED, THOUGH I THINK MESSAGES DO TAKE LONGER TO GET ACROSS FROM THE BRAIN TO THE LIMBS AT TIMES!

REGARDS

[M64]

HI NANCY,

THANK YOU SO MUCH FOR REPLYING, I'M SO GLAD THAT OTHER PEOPLE HAVE EXPERIENCED THE SAME THING; NOT THAT I WANT YOU TO SUFFER, BUT IT MAKES ME FEEL SURE THAT I HAVE MS!

I ALSO GET HEAVINESS, BUT THAT IS A DIFFERENT FEELING ALL TOGETHER FOR ME.

ANOTHER STRANGE ONE, IS THAT MY LIMBS SOMETIMES DON'T FEEL LIKE THEY BELONG TO ME. I CAN SEE A HAND IN FRONT OF ME, BUT I DON'T ACKNOWLEDGE IT AS MINE... WEIRED!!

REGARDS M.

[Nancy T]

In his 1984 book "A Leg to Stand On," the famous neurologist Oliver Sacks describes how his injured, operated, and casted leg, after the operation, felt like it was not even there, just a "cylinder of chalk," a "foreign" thing, seemingly unattached to him--"a profound disturbance of proprioception. . . . I had lost the inner image, or representation, of the leg" (chap. 2, "Becoming a Patient").

Perhaps what people have described here is something similar--a disturbance in how the brain perceives the appendages.

BTW, every neurology patient should read this amazing book--especially those who have struggled with bizarre symptoms, doctors who don't listen to or believe you, a complete upheaval in your life and how you view the workings of the medical world, etc. In his preface, Sacks lists among the book's themes "the specific neuropsychological and existential phenomena associated with my injury and recovery; the business of being a patient . . . ; the complexities of the doctor-patient relationship and the difficulties of dialogue between them, especially in a matter which is puzzling to both; . . . [and] a critique of current neurological medicine." There were so many parts of that book that EXACTLY described my own experiences and feelings.

Jep, you might be particularly interested in the chapter "Convalescence," in which Sacks describes how during his recovery he couldn't get the knee to move no matter how hard he tried, but his doctor tricks him into going to the pool, where a lifeguard, by prearrangement, pushes Sacks suddenly into the pool and challenges him to a race, and when they come out Sacks realizes he can walk normally--it just happened when he was forced to use the leg without thinking about it.

Nancy

[ANonnyMouse]

Your post took me straight back to my childhood where I would often lie awake at night feeling absolutely positive that one limb or other was giant sized and I would have to continually turn the lamp on to check that it was in fact normal sized. It felt like if I looked at my hand or leg it would be the size of a giant's hand or leg.

That weird feeling came up only at night when I was lying in bed in the dark and more often when I was having trouble falling asleep, and it persisted regularly until my mid teens or thereabouts.

These days I still get it from time to time, but only about once every year or so, for a few nights each time.

[jujuminx]

Not larger but tired limbs.  Like I overexercised and they were exhaused.  But as they say around here, no two people with MS have exactly the same sx.

Julie

[jumpinjiminy]

Mine just all of a sudden got heavy. I would be sitting there on the couch and bam! My legs weighed twice as much as before. They didn't move as quickly either. And it was a lot harder getting around than when they weren't feeling heavy. That then faded out to only feeling that way when I'd wake up in the mornings. After a couple of months it faded out altogether. I've not yet had the sensation they were larger, just heavier.

[hedgehog_under_myskin]

YES!  
Oh I get these stupid sensations too.  I feel like my skin is too tight and it can get so bad sometimes that I'm scared of knocking into something, or the dog pawing my leg because it feels like with the slightest touch of a sharp thing, the skin will just split right open.

Also sometimes get a feeling like my (excuse me using this word) bottom, is waaay heavy.  I actually feel like I'm sinking further and further into the chair.  At one point I checked to make sure that the chair springs weren't damaged because I was so sure that I'd broken the chair in some way.

[Jepster]

I have a strange feeling in my legs too whereby they feel somehow disattached (but are clearly are still connected in a functioning manner to the rest of my body...)

They move automatically if I want to walk or run or stand up, but if I think about moving say my toes and concentrate on the action it takes a few milliseconds longer to actually start happening.

Does this happen to anyone else?! I can't figure out whether I'm just going slightly mad and it's all in my mind, or whether these feelings are something which could be related to the MS

Funny ole world,

Jep (MS-er)

[Nancy T]

At one point, I would sometimes get an odd sensation that my legs felt completely different--like tree trunks is how I described it. They weren't actually stiff, numb, or swollen--but I had the distinct sense they were different somehow, not my real legs. It was VERY bizarre.

Nancy T. (Also not diagnosed with anything.)