Aa
Is your fatigue pretty much constant or does it come in 'flares?'
I saw my primary doc yesterday, and as always I mentioned fatigue as a big problem. He said that it was his understanding that MS people go through bouts of fatigue and then improve, whereas I seem always to be tired. I commented that fatigue is the number one reason MSers must leave the workplace.
For me, fatigue is a constant. I am not totally wiped out, as many here are, but when I really exert, things get much worse. Although my sleep is adequate, I very rarely feel rested when I wake up. A trip to the supermarket drains me for the day. I'm so lethargic that I get almost nothing done. As you can imagine, my life is very curtailed, and when the weather was so hot this past summer I was practically a recluse. Several years ago I was traveling in France, and I got so tired I just wanted to lie down. But the other half of me was screaming 'No! You're in Paris, for heaven's sake'!! Talk about the spirit being willing but the flesh being weak.
Anyway, I'm looking for comments about duration of fatigue. Is yours always around, or does it ebb and flow, not necessarily related to MS flares or other symptoms? I had always just assumed that for those with MS fatigue, it was always there, at least in the background, but I may well be wrong on this. What has your experience been?
I also want to give a cheer for my doc. He's great. Yesterday he was looking through my huge file, and then remarked, 'It isn't easy being you.' Compassionate and professional at the same time. The reference to Kermit the Frog was nice too, whether or not he meant it that way.
ess
For me, fatigue is a constant. I am not totally wiped out, as many here are, but when I really exert, things get much worse. Although my sleep is adequate, I very rarely feel rested when I wake up. A trip to the supermarket drains me for the day. I'm so lethargic that I get almost nothing done. As you can imagine, my life is very curtailed, and when the weather was so hot this past summer I was practically a recluse. Several years ago I was traveling in France, and I got so tired I just wanted to lie down. But the other half of me was screaming 'No! You're in Paris, for heaven's sake'!! Talk about the spirit being willing but the flesh being weak.
Anyway, I'm looking for comments about duration of fatigue. Is yours always around, or does it ebb and flow, not necessarily related to MS flares or other symptoms? I had always just assumed that for those with MS fatigue, it was always there, at least in the background, but I may well be wrong on this. What has your experience been?
I also want to give a cheer for my doc. He's great. Yesterday he was looking through my huge file, and then remarked, 'It isn't easy being you.' Compassionate and professional at the same time. The reference to Kermit the Frog was nice too, whether or not he meant it that way.
ess
Most days my fatigue hits in the early afternoon and stays with me the rest of the day, but sometimes I wake up feeling fatigued and it sticks with me all day.
It's the days that I awake fatigued that led me to finally accept an rx for Modafinil. I just took my first 100mg pill 20 minutes ago, so it's too early to report on its effectivenes for me...here's hoping...
My Neuro said he'd arrange for me to have a sleep study about 2 or more years ago, but it never happened and I never brought it up again durring subsequent appointments.
I have missed participating in many functions, get togethers, etc., due to fatigue and other MS issues.
I hope you find some way to combat your fatigue!
Mike
It's the days that I awake fatigued that led me to finally accept an rx for Modafinil. I just took my first 100mg pill 20 minutes ago, so it's too early to report on its effectivenes for me...here's hoping...
My Neuro said he'd arrange for me to have a sleep study about 2 or more years ago, but it never happened and I never brought it up again durring subsequent appointments.
I have missed participating in many functions, get togethers, etc., due to fatigue and other MS issues.
I hope you find some way to combat your fatigue!
Mike
Seems to me that fatigue probably works like other MS problems. It can be associated with relapses or even be a relapse itself (although many neuros might not be willing to call that, one neuro, when asking me about my fatigue, told me that he did have a patient who was very active in sports and had a relapse that consisted only of intense fatigue). And as many of us know some symptoms hang around to become our constant companions or just gradually get worse. So it seems logical to me that fatigue would work both ways.
I have had periods where the fatigue seems worse. I feel like I'm sick, but I'm not sick. That is, I have that draggy, muddled feeling of being sick, but nothing else—no runny nose, no sore throat, etc. I do also have a certain base level of fatigue that stays with me. This seems worse recently and I'm starting to worry about the impact on my job. I read the thread on modafinil with interest and may see if my neuro will let me try that.
sho
I have had periods where the fatigue seems worse. I feel like I'm sick, but I'm not sick. That is, I have that draggy, muddled feeling of being sick, but nothing else—no runny nose, no sore throat, etc. I do also have a certain base level of fatigue that stays with me. This seems worse recently and I'm starting to worry about the impact on my job. I read the thread on modafinil with interest and may see if my neuro will let me try that.
sho
Hi,
I have been having a bout of fatigue the last few weeks....I would have to say there are times I have alot of energy for weeks and then boom, it is like I a freight train hits me....I have been in bed a 7-7:30 the last few weeks exhausted and sometimes I want to just sleep in the middle of the day..weekends, I sometimes have to lay down for naps or just do not have the energy to do anything..
Jibs
I have been having a bout of fatigue the last few weeks....I would have to say there are times I have alot of energy for weeks and then boom, it is like I a freight train hits me....I have been in bed a 7-7:30 the last few weeks exhausted and sometimes I want to just sleep in the middle of the day..weekends, I sometimes have to lay down for naps or just do not have the energy to do anything..
Jibs
I do appreciate reading about all these experiences. Anyone else? Keep 'em coming.
I should have mentioned that I did have a sleep study 5 or 6 years ago, because of intractable insomnia. Surprise! I hardly slept during the study (how anyone can, hooked up to all that paraphernalia, is beyone me), but what sleep I did have (2+ hours) did not involve apnea. My sleep is better these days if not great, and I am learning to live without Ambien. Still, I will mention this to my PCP when next we talk. Maybe another sleep study is in order.
Some of the responses to this post sound so much like me. I especially understand about traveling, which I love. Two years ago I had the opportunity to cruise the Baltic to see something of Scandinavia and surrounding areas. I'm not much on cruises, but I figured it was that or nothing. I would mostly take half day shore excursions, and I'd skip the nightlife aboard ship, just to avoid getting too tired. That worked, but I haven't been much of anywhere since then. Hate the idea of not going and doing, but c'est la vie.
ess
I should have mentioned that I did have a sleep study 5 or 6 years ago, because of intractable insomnia. Surprise! I hardly slept during the study (how anyone can, hooked up to all that paraphernalia, is beyone me), but what sleep I did have (2+ hours) did not involve apnea. My sleep is better these days if not great, and I am learning to live without Ambien. Still, I will mention this to my PCP when next we talk. Maybe another sleep study is in order.
Some of the responses to this post sound so much like me. I especially understand about traveling, which I love. Two years ago I had the opportunity to cruise the Baltic to see something of Scandinavia and surrounding areas. I'm not much on cruises, but I figured it was that or nothing. I would mostly take half day shore excursions, and I'd skip the nightlife aboard ship, just to avoid getting too tired. That worked, but I haven't been much of anywhere since then. Hate the idea of not going and doing, but c'est la vie.
ess
COMMUNITY LEADER
Although i'm forever more, going to think of you every time I see a frog lol I think your GP is probably misinformed about MS fatigue, not so much because we're unigue but because this sx is well researched and discussed, not only on all the MS forums but the MS associations too.
Fatigue is one of the common MS sx's according to one 2011 survey and i'm thinking fatigue could possibly be the least understood sx, "More than 10,000 people from 101 countries responded to MSIF’s online survey on MS and fatigue.... The results of the survey show that fatigue is a very common symptom of MS, that it is difficult to treat, and that it has a high impact on most areas of life. Many respondents felt that people around them do not understand fatigue."
http://www.msif.org/docs/Full_combined_survey_results1.pdf
Its an interesting read, 86% reported fatigue as one of their top 3 worst sx, 36% chose through out the day and night, 26% afternoon, 16% all the time, 13% evening, 7% mornings and 2% night time. and thats daily folks,
[These results highlight the fluctuating nature of fatigue in MS and suggest that this symptom can have a significant impact on day-to-day life, for example, the ability to maintain regular work hours or family responsibilities.
“I can't explain why I feel so exhausted from not doing anything, but I do. I am lifeless at times, like someone has switched me off.”
“I get up in the morning feeling just as tired as the night before.”
“Fatigue sneaks up on me. I'm fine one moment, then NEED to lie down immediately.”]
My story is long (winded lol) because for me, the fatigue started when my youngest was a baby (14+yrs ago), in the begining it came and went, little unexplained blocks of time lasting days to a couple of weeks and each year it just seemed to get harder to get through the day. By 03 so about the 5yr mark, i couldn't push my way through it anymore, sometimes when the fatigue hit, it was far greater than the last lot, i literally couldn't hold my body up.
After my big bang in 09, lol that just seemed like a picinic in comparrison, i have some level of fatigue every day but now when i relapse the fatigue can get really bad, the house could be burning around my ears and i wouldn't have the energy to save my self. Quix explained it to me once lol i've just lost the name of it, it starts with an L and sort of sounds like lasso grrrr it'll come back when i least expect it lol.
Anyhoo i've tried just about everything, for a couple of years when my idiotic GP was stuck on hypoglycemia, i even tried to fix it with food, a looooot of food and still it made zero difference. Though i will say, after it had put me on the floor in public no less, stuffing my face with spoonfull after spoonful of sugar would give me a very short lived boost, enough to get me off the floor anyway. lol
Cheer......JJ
Fatigue is one of the common MS sx's according to one 2011 survey and i'm thinking fatigue could possibly be the least understood sx, "More than 10,000 people from 101 countries responded to MSIF’s online survey on MS and fatigue.... The results of the survey show that fatigue is a very common symptom of MS, that it is difficult to treat, and that it has a high impact on most areas of life. Many respondents felt that people around them do not understand fatigue."
http://www.msif.org/docs/Full_combined_survey_results1.pdf
Its an interesting read, 86% reported fatigue as one of their top 3 worst sx, 36% chose through out the day and night, 26% afternoon, 16% all the time, 13% evening, 7% mornings and 2% night time. and thats daily folks,
[These results highlight the fluctuating nature of fatigue in MS and suggest that this symptom can have a significant impact on day-to-day life, for example, the ability to maintain regular work hours or family responsibilities.
“I can't explain why I feel so exhausted from not doing anything, but I do. I am lifeless at times, like someone has switched me off.”
“I get up in the morning feeling just as tired as the night before.”
“Fatigue sneaks up on me. I'm fine one moment, then NEED to lie down immediately.”]
My story is long (winded lol) because for me, the fatigue started when my youngest was a baby (14+yrs ago), in the begining it came and went, little unexplained blocks of time lasting days to a couple of weeks and each year it just seemed to get harder to get through the day. By 03 so about the 5yr mark, i couldn't push my way through it anymore, sometimes when the fatigue hit, it was far greater than the last lot, i literally couldn't hold my body up.
After my big bang in 09, lol that just seemed like a picinic in comparrison, i have some level of fatigue every day but now when i relapse the fatigue can get really bad, the house could be burning around my ears and i wouldn't have the energy to save my self. Quix explained it to me once lol i've just lost the name of it, it starts with an L and sort of sounds like lasso grrrr it'll come back when i least expect it lol.
Anyhoo i've tried just about everything, for a couple of years when my idiotic GP was stuck on hypoglycemia, i even tried to fix it with food, a looooot of food and still it made zero difference. Though i will say, after it had put me on the floor in public no less, stuffing my face with spoonfull after spoonful of sugar would give me a very short lived boost, enough to get me off the floor anyway. lol
Cheer......JJ
Mine is pretty much constant, rapidly worsens with moderate exercise & chores and/or body temp elevation. At those times it's like i can feel it washing over me and weighing me down. But yes, day to day, those factors notwithstanding, I usually feel dragged out and low energy. I'm on 4 regular meds already and not interested in adding more to the mix if I can help it. Have played with those meds and they don't appear to be contributing to my fatigue level. I do ok as long as not a lot is demanded of me physically. I think some in my life find it surprising (but you look well! And you travel!). What they don't know is that when I travel I'm rarely out of my hotel room before noon, I return for in the afternoon for a nap, I obsessively avoid the heat, and I sit down every chance I get. Not complaining mind you...if that's what it takes to be able to keep travelling, it's no sacrifice, it's just that some have this perception that I'm go go go, and it couldn't be further from the truth.
That said, Dan's advice makes sense, and it's something I've considered myself. Perhaps your GP could refer you for a sleep study, something might come of it that might help alleviate at least some of your fatigue. And when you feel lousy all the time, even a little relief can be most welcome.
Re your GPs understanding of fatigue in MS, I think he's off base, in the sense that we all know everyone's MS is unique. What he may usually see in his practice isn't necessarily what all will experience. I have and have had great GPs too, but I find my neuro has a much better grasp of this aspect of the disease. Neuros would obviously see all degrees of severity on the spectrum on an ongoing basis, whereas GPs will see only a small sample.
That said, Dan's advice makes sense, and it's something I've considered myself. Perhaps your GP could refer you for a sleep study, something might come of it that might help alleviate at least some of your fatigue. And when you feel lousy all the time, even a little relief can be most welcome.
Re your GPs understanding of fatigue in MS, I think he's off base, in the sense that we all know everyone's MS is unique. What he may usually see in his practice isn't necessarily what all will experience. I have and have had great GPs too, but I find my neuro has a much better grasp of this aspect of the disease. Neuros would obviously see all degrees of severity on the spectrum on an ongoing basis, whereas GPs will see only a small sample.
Mine comes and goes, generally with my flares of other symptoms.
Ess, have you ever had a sleep study done? Sleep apnea can cause what you describe, IIRC. Just a thought.
Ess, have you ever had a sleep study done? Sleep apnea can cause what you describe, IIRC. Just a thought.
Wow, I just wrote a really long post and its gone. Anyway, yes. Mine is constant.
I do take Focalin xr 20 and it is the only way I get anything done. Still after the grocery store I'm done for the day. If I need it I have Focalin 5 mg to take at lunch.
I do take Focalin xr 20 and it is the only way I get anything done. Still after the grocery store I'm done for the day. If I need it I have Focalin 5 mg to take at lunch.
Since the start of Oct my fatigue is almost constant, so much so that i've started drinking monster just to be able to get through my working day. I'm in limboland and not on any medications at present.
It starts within half an hour after getting up in the morning and then comes in waves through out the day
It starts within half an hour after getting up in the morning and then comes in waves through out the day
Neither Amantadine nor Provigil does diddly for me, I'm afraid. Provigil and Nuvigil are actually drugs that fight narcolepsy, and I am not in danger of just falling asleep or being excessively sleepy and so on, just being tired and energy-less. Boo.
ess
ess
My fatigue is mostly constant. There are times where it is more prominent than other days, but overall, it's there all the time. Are you taking anything for it? I'm on Amantadine - the results from being on it are kind of iffy....
I get a little draggy on occasion, but I suppose everyone does :-) My near debilitating fatigue was confined to my last relapse (7-8/2011).
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
