Aa
What's the one thing you struggle with......most?
Hey guys and dolls,
I know a lot of us have way toooooooooo much on our plates, but we take it all and still laugh and smile but i know you have that one thing, little or big that just seems that much harder than everything else to deal with. I can handle most anything but the one thing that drives me mental lol and it's not by a long shot the most problematic, it's just so much harder for some reason to ignore.
For me, my something is being a bobble head, my blasted head never stops moving no, no, no repeated none stop. I'm not sure if its harder because its a tremor i don't deal with it all the time, it's not one of my everyday's, so maybe i don't get time to get use to it before it stops again but when it comes back, in the beginning of those first days, golly it really drives me nutts!
What is yours?
Cheers.............JJ
I know a lot of us have way toooooooooo much on our plates, but we take it all and still laugh and smile but i know you have that one thing, little or big that just seems that much harder than everything else to deal with. I can handle most anything but the one thing that drives me mental lol and it's not by a long shot the most problematic, it's just so much harder for some reason to ignore.
For me, my something is being a bobble head, my blasted head never stops moving no, no, no repeated none stop. I'm not sure if its harder because its a tremor i don't deal with it all the time, it's not one of my everyday's, so maybe i don't get time to get use to it before it stops again but when it comes back, in the beginning of those first days, golly it really drives me nutts!
What is yours?
Cheers.............JJ
Being in a big relapse right now, I will probably have to get back to you; too many possibilities. My balance problems are the mos t nearly constant, even though it's so blasted unpredictable. I can start up a flight of stairs feeling fine, but halfway up find myself putting a death grip on the handrail, afraid I'll roll backwards. More often, I fall forward into my face, so I can later explain to people how I fell UP the stairs.
Even though the drugs keep it at bay much of the time, my eye pain might ne the most worrisome. No one wants to think of their eyes failing, and the pain is terrible when it flares up. I count myself very fortu.ate that gabapentin has addressed that most of the tome, but I worry about the dau when the maximum permitted dosage stops being adequste.
Well, I've been answering this query intermittently for a coyple of hrs.;I think it's time I post it. Can't wait to see whayy it looks like.
Even though the drugs keep it at bay much of the time, my eye pain might ne the most worrisome. No one wants to think of their eyes failing, and the pain is terrible when it flares up. I count myself very fortu.ate that gabapentin has addressed that most of the tome, but I worry about the dau when the maximum permitted dosage stops being adequste.
Well, I've been answering this query intermittently for a coyple of hrs.;I think it's time I post it. Can't wait to see whayy it looks like.
For me it is the sudden onset bone crushing fatigue.
My normal MS fatigue I can deal with. OK I did too much today so for the next couple of days I have to rest kind. Or I didn't sleep good last night so take it easy today kind.
But this kind of fatigue hits you like someone flipped a switch. One second you're OK and the next it is less than zero energy and you have to crawl to bed for some sleep.
I've pushed myself and done too much many times to the point it will take a week or two for me to recover, but this fatigue is 100 times worse. In all of the years I have had this going on I have never been able to figure out what triggers it, if anything does. But it definitely make it a lot harder to plan anything since I never know when it will hit me.
Luckily this fatigue doesn't hit me very often. Some times it can be many months between episodes while other times it can happen a few times in one month. It is that unpredictable.
Dennis
My normal MS fatigue I can deal with. OK I did too much today so for the next couple of days I have to rest kind. Or I didn't sleep good last night so take it easy today kind.
But this kind of fatigue hits you like someone flipped a switch. One second you're OK and the next it is less than zero energy and you have to crawl to bed for some sleep.
I've pushed myself and done too much many times to the point it will take a week or two for me to recover, but this fatigue is 100 times worse. In all of the years I have had this going on I have never been able to figure out what triggers it, if anything does. But it definitely make it a lot harder to plan anything since I never know when it will hit me.
Luckily this fatigue doesn't hit me very often. Some times it can be many months between episodes while other times it can happen a few times in one month. It is that unpredictable.
Dennis
Like Dennis fatigue is the most debilitating symptom for me, except when the TN pain hits, then it moves to number one.
Mike
Mike
Yeah, just pulled myself off the floor to read that thought, with which I can well eelate.relate
Seems to be a common thing with fatigue and I am no exception.
Whether it is the knock you on your butt really fast kind or the kind where just carrying a small piece of furniture to your car makes you lie down for 20 minutes because you can no longer seem to function. Through in some insomnia from DMD meds and even the weekends don't have enough in them to recuperate.
Corrie
Whether it is the knock you on your butt really fast kind or the kind where just carrying a small piece of furniture to your car makes you lie down for 20 minutes because you can no longer seem to function. Through in some insomnia from DMD meds and even the weekends don't have enough in them to recuperate.
Corrie
Fatigue is number one for me right now! As Corrie says, you feel like you have to rest after every activity and I feel are leaning into a wall and just can't move anymore when it hits.
.
.
heh guys, my is UTI`s ..... and twitching. gets embarassing and I seem drunk or something like that when I go out. Not all the time, but alot of it.
Fatigue, as well, as everyone else, we sleep alot, and need to rest often ....
Well, I get to rest next week, so, will be praying for you all then .
Candy
Fatigue, as well, as everyone else, we sleep alot, and need to rest often ....
Well, I get to rest next week, so, will be praying for you all then .
Candy
Hmmmm. That's a hard choice between fatigue and balance problems but I think I will choose the balance problems mostly because I can't hide it as well in public. It can be quite embarrassing falling into things around strangers who tend to assume that you must be drunk. I actually had a lady yell at me in a store once for bumping into her cart.
I'm not officially diagnosed yet though so I may not count but I definitely get to share the symptoms :)
Laura
I'm not officially diagnosed yet though so I may not count but I definitely get to share the symptoms :)
Laura
Well, now, since you bring that up... Not having a dx on which to blame all this other stuff is also pretty high on my list.
Of course, , I had to open my big mouth. The eye pain has become horrible tonight.
Of course, , I had to open my big mouth. The eye pain has become horrible tonight.
cognition..... and then balance ..
In conversations when I seem not to grasp something, I can always ask them them to repeat what they said, I have short term working memory problems , the damaged is done.. I process data slower.
Just a very small number of my friends know what I'm dealing with, I can blame the balance issues on the ankle surgeries that I had. Thats what I tell people don't know me when I lean unexpected.
Otherwise the saying about alot of us with balance issues they say, " I wonder if he has been drinking "
take care
Jb
In conversations when I seem not to grasp something, I can always ask them them to repeat what they said, I have short term working memory problems , the damaged is done.. I process data slower.
Just a very small number of my friends know what I'm dealing with, I can blame the balance issues on the ankle surgeries that I had. Thats what I tell people don't know me when I lean unexpected.
Otherwise the saying about alot of us with balance issues they say, " I wonder if he has been drinking "
take care
Jb
COMMUNITY LEADER
Fatigue in varying amounts is something i've been juggling with since 03, its also when i first started associating fatigue with loosing my legs, though it wasn't until my big bang of 09 before I developed a totally new understanding of what loosing your legs could really mean lol something to do with walking like a string puppet to aid in changing my perspective :D
Fatigue is probably in the top 5 of most common MS sx's, stats put it around 80% but fatigue is tricky because it can additionally be a result of sleep deprivation, depression etc as well as the unknown causation or bonus turkey of having MS. I've had the idea that fatigue only when its at its worst is called Lassitude but that's not necessarily correct because it seems to be the common term used for "MS fatigue" .
"What Makes MS Fatigue Different?
Several different kinds of fatigue occur in MS. For example, people who have bladder dysfunction (producing night-time awakenings) or nocturnal muscle spasms, may be sleep deprived and suffer from fatigue as a result. People who are depressed may also suffer fatigue. And anyone who needs to expend considerable effort just to accomplish daily tasks (e.g., dressing, brushing teeth, bathing, preparing meals) may suffer from additional fatigue as a result.
In addition to these sources of fatigue, there is another kind of fatigue—referred to as lassitude—that is unique to people with MS. Researchers are beginning to outline the characteristics of this so-called "MS fatigue" that make it different from fatigue experienced by persons without MS.
Generally occurs on a daily basis
May occur early in the morning, even after a restful night’s sleep
Tends to worsen as the day progresses
Tends to be aggravated by heat and humidity
Comes on easily and suddenly
Is generally more severe than normal fatigue
Is more likely to interfere with daily responsibilities
MS-related fatigue does not appear to be directly correlated with either depression or the degree of physical impairment."
http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/symptoms/fatigue/index.aspx
I was of the mindset that there are different types of fatigue, cognitive fatigue, physical fatigue and then lassitude, lassitude i was thinking was when everything has basically shut down and i'm left impersonating a human paper weight. lol or as others have described it as "the house burning down and not having the energy to move" yep I soooooo understand all of them.
I seriously don't know why being a bobble head drives me nutts when other things don't, maybe its just the feeling that comes with it that i can't get use to lol don't know but its definitely on the top of my list at the moment.
Cheers............JJ
Fatigue is probably in the top 5 of most common MS sx's, stats put it around 80% but fatigue is tricky because it can additionally be a result of sleep deprivation, depression etc as well as the unknown causation or bonus turkey of having MS. I've had the idea that fatigue only when its at its worst is called Lassitude but that's not necessarily correct because it seems to be the common term used for "MS fatigue" .
"What Makes MS Fatigue Different?
Several different kinds of fatigue occur in MS. For example, people who have bladder dysfunction (producing night-time awakenings) or nocturnal muscle spasms, may be sleep deprived and suffer from fatigue as a result. People who are depressed may also suffer fatigue. And anyone who needs to expend considerable effort just to accomplish daily tasks (e.g., dressing, brushing teeth, bathing, preparing meals) may suffer from additional fatigue as a result.
In addition to these sources of fatigue, there is another kind of fatigue—referred to as lassitude—that is unique to people with MS. Researchers are beginning to outline the characteristics of this so-called "MS fatigue" that make it different from fatigue experienced by persons without MS.
Generally occurs on a daily basis
May occur early in the morning, even after a restful night’s sleep
Tends to worsen as the day progresses
Tends to be aggravated by heat and humidity
Comes on easily and suddenly
Is generally more severe than normal fatigue
Is more likely to interfere with daily responsibilities
MS-related fatigue does not appear to be directly correlated with either depression or the degree of physical impairment."
http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/symptoms/fatigue/index.aspx
I was of the mindset that there are different types of fatigue, cognitive fatigue, physical fatigue and then lassitude, lassitude i was thinking was when everything has basically shut down and i'm left impersonating a human paper weight. lol or as others have described it as "the house burning down and not having the energy to move" yep I soooooo understand all of them.
I seriously don't know why being a bobble head drives me nutts when other things don't, maybe its just the feeling that comes with it that i can't get use to lol don't know but its definitely on the top of my list at the moment.
Cheers............JJ
JJ, dear, tremors of any kind make us self conscious. That, in turn, produces emotional stress. The constant movements burn caloric energy, and the stress of it wears out our emotional reserves. It's no wonder we're so tired!
Cognition, absolutely.
If I still had TN, then that would bump to number 1.
I have a sense of humour (at this point) re: physical foibles (loss of balance, right side weakness).
I have no sense of humour whatsoever when I'm lost in conversations, can't remember what someone just said or can't follow two-step directions (because i forget the first step).
Hopefully I'll develop a sense of humour there too, 'cause it's much easier to cope.
If I still had TN, then that would bump to number 1.
I have a sense of humour (at this point) re: physical foibles (loss of balance, right side weakness).
I have no sense of humour whatsoever when I'm lost in conversations, can't remember what someone just said or can't follow two-step directions (because i forget the first step).
Hopefully I'll develop a sense of humour there too, 'cause it's much easier to cope.
COMMUNITY LEADER
Okay confused, maybe i'm slow on the uptake but why would tremors cause someone to be self conscious and or emotional stress? I believe we are each perfect (for want of a better word) no matter what the outside packaging looks like. Its probably not possible for me to think less of my self because of the tremors, lol remember I walk like a string puppet, slurr/stutter when i talk, shake non stop and if i'm not self conscious yet, it's probably not ever going to happen.
DH and i definitely think i struggle to gain weight because my metabolism is switched onto over drive, burning calories faster than normal and it's probably in part because i never stop moving, though i would of thought it was more likely to burn up physical energy, than emotional reserves.
oh I think i might of done a poorly worded post, are you thinking im meaning an emotional feeling and not the physical feeling of tremor? If so i meant the later sorry! I find the feeling hard to describe, having an electrical current continually running through you, whilst standing on one of those vibrating machines is kinda close but swallowing a mobile that's switched to vibrate could also work, it feels horrible and i just haven't gotten use to it yet.
cheers...........JJ
DH and i definitely think i struggle to gain weight because my metabolism is switched onto over drive, burning calories faster than normal and it's probably in part because i never stop moving, though i would of thought it was more likely to burn up physical energy, than emotional reserves.
oh I think i might of done a poorly worded post, are you thinking im meaning an emotional feeling and not the physical feeling of tremor? If so i meant the later sorry! I find the feeling hard to describe, having an electrical current continually running through you, whilst standing on one of those vibrating machines is kinda close but swallowing a mobile that's switched to vibrate could also work, it feels horrible and i just haven't gotten use to it yet.
cheers...........JJ
Okay, I'm going to switch it up a little. What I struggle with most?
Head games.
The physical (which for me has been mild) is not day to day. The mental? Heck yeah. Getting lost walking on a road I've been down 1000 times? Scary. Will I ever know if it's from MS? Possibly not. Can I predict that today's the day I get lost and manage to synchronise that with forgetting my mobile? Nope. And that's scary.
Yes, that's happened. No, it wan't pretty. I freaked.
I freaked because in the litany of things I was told to look out for, I wasn't told I'd need to leave mental breadcrumbs everywhere. I was looking out for the mobility issues and fatigue that haven't yet come.
I've begun to adapt. Phone apps that make lists or pre-store maps or hold photos I can point to are what I depend on for psychological back-up when I get out and about. When I remember to bring it...
And in your early thirties it's an identity loss as well. I plan for my day like I deal with senility, because essentially I do.
Head games.
The physical (which for me has been mild) is not day to day. The mental? Heck yeah. Getting lost walking on a road I've been down 1000 times? Scary. Will I ever know if it's from MS? Possibly not. Can I predict that today's the day I get lost and manage to synchronise that with forgetting my mobile? Nope. And that's scary.
Yes, that's happened. No, it wan't pretty. I freaked.
I freaked because in the litany of things I was told to look out for, I wasn't told I'd need to leave mental breadcrumbs everywhere. I was looking out for the mobility issues and fatigue that haven't yet come.
I've begun to adapt. Phone apps that make lists or pre-store maps or hold photos I can point to are what I depend on for psychological back-up when I get out and about. When I remember to bring it...
And in your early thirties it's an identity loss as well. I plan for my day like I deal with senility, because essentially I do.
I see this is a very informative site and I appreciate that. I need the info so that I can keep my thinking straight. Being diagnosed with MS and then being undiagnosed has left me hanging. Support is good. Even though some symptoms (MS or something else) are getting worse it is nice to know that there are people here that understand how the symptoms mess with daily life.
Worst for me, currently: relentless neuropathic pain, followed closely by relentless fatigue.
Worst for me over the entire course of my disease, so far: 24/7 severe double vision, followed closely by a short but excruciating bout of ON. Both symptoms currently in remission, thank god.
Worst for me over the entire course of my disease, so far: 24/7 severe double vision, followed closely by a short but excruciating bout of ON. Both symptoms currently in remission, thank god.
For me its the grief and loss. I have lost so much. Both in reality and in potential.
For me it is the loss of mobility - So many things I want to do that I am now limited in. and along with Kyle the awareness that it is only going to get worse no matter what I do!
Hello my name is dave . I've had MS for about 8 yrs now. I can do most things but the painnnnnn in my neck is the worst. The base of my skull to the bottom of my neck is where it is most centered. So as you can see pain is my daily endeavor. I take 3200 mg of gabapentin per day sounds like a lot but it just keeps me from screaming that's 4 800 mg pills a day until they think of something better. WOW huh that's what I think of the medical profession . So have a fantastic day..... this is dave east see ya.
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
