Aa
Unrelenting Fatigue
This fatigue thing has me confused! For the last two weeks or so I have had the feeling that the fatigue is "attacking" me in a way...I get up in the morning (and I have been sleeping till 10 or 11 a.m. and getting 10-12 hours of sleep every night) and 10 minutes later I feel as though I could go back to bed and fall right back to sleep!
I have never been the type to take naps in my lifetime (might miss something!) so I push on but it isn't getting better! I don't like to sleep in every morning...it's a waste of a day and it drives me nuts! I got up about 1 hour ago and I wish I could go back to bed! Yesterday I forced myself to do what needed to be done and then fell asleep while watching a movie for about 1 1/2 hours and then got up and went to bed! That's 11 1/2 hours of straight sleep!
I don't know if I should try to see my lying gp and let her know about this or not...I don't say she will do anything for me but at least it would be on record I guess. I haven't had a time like poor Quix sleeping 20 some hours but still, this is not like me and it feels terrible. I don't know that anyone can help me but I just wanted some insight into the fatigue thing...is this something that a lot of people have to deal with or is it something else? I have never had the fatigue symptom explained but if it is anything like this how do people get on with their lives when they feel this way?
Lots of hugs,
Rena
I have never been the type to take naps in my lifetime (might miss something!) so I push on but it isn't getting better! I don't like to sleep in every morning...it's a waste of a day and it drives me nuts! I got up about 1 hour ago and I wish I could go back to bed! Yesterday I forced myself to do what needed to be done and then fell asleep while watching a movie for about 1 1/2 hours and then got up and went to bed! That's 11 1/2 hours of straight sleep!
I don't know if I should try to see my lying gp and let her know about this or not...I don't say she will do anything for me but at least it would be on record I guess. I haven't had a time like poor Quix sleeping 20 some hours but still, this is not like me and it feels terrible. I don't know that anyone can help me but I just wanted some insight into the fatigue thing...is this something that a lot of people have to deal with or is it something else? I have never had the fatigue symptom explained but if it is anything like this how do people get on with their lives when they feel this way?
Lots of hugs,
Rena
Well for starters, I did go to my local chapter of the MS Society of Canada to get the name of a different MS Specialist when I found out the MS Specialist I had been sent to decided that my MS was "inactive". I was promptly told that IF I were to get an appointment with a new MS Specialist that they provided me the name of, I would more than likely be blackballed as the old boys group of neurologists in this country stick together thick as thieves. So, they wouldn't even GIVE me a name of a new neuro...I told them that I am not getting any help now so I don't see what difference being blackballed would make and that was the end of that. Our healthcare is provincially funded and no I cannot afford to pay for a specialist on my own and apparently I would have a hard time finding someone that might disagree with the first MS Specialist's diagnosis of inactive MS. The last MS Nurse that I spoke with was affiliated with the MS Society and in the past had been the MS Nurse for the neuro that originally diagnosed me with MS. I asked her about my diagnosis of MS and she said she would get back to me...when she did she said that yes my disease can be inactive and that I shouldn't worry about it. It turns out that the neuro that is supposed to currently be my neuro is closely affiliated with the MS Society and I am sure that the nurse conferred with her and the rest is history. I can expect no help from that area. I am not angry with you my dear...I understand that you are trying to help but what I need is short of a miracle...a neurologist that gives a darn. I will keep up my fight and continue to search for answers but right now I am at a stalemate and short of getting a lawyer I am pretty much at a dead end until something changes as far as my health goes or as I told my hubby as far as my doctor's health goes. It is a frustrating situation but I am staying on it and believe me...I have not given up and I will continue to search for an answer.
Terrie...I take my Amitriptyline at about 8 p.m. so that it kicks in by the time I go to bed around 10;30 or 11;00. I don't really think that this is the cause of my fatigue because it seems to go in waves and it's not every day. Like last night I couldn't sleep if my life depended on it and yet I was exhausted all day yesterday and the night before that I slept for about 11 hours! Right now I am feeling really tired and I don't say I will be up too long but then I wonder if I sleep, will I feel the way I did yesterday? I really hope that it isn't the Amitriptyline cause it is the only med so far that has actually allowed me to live without some of the excrutiating pain in my legs and feet...I hate the thought of going off of it!!
Moki...I really appreciate your taking the time to send me a note about this...this is only starting for me and I hate it and I don't really know how to deal with it. I have been pretty independent and having MS is bad enough but to have this fatigue is a major kick in the pants that I am not sure how I am going to get around if at all. If you have any little hints, you could always send em' my way...hint, hint...
Lots of Hugs,
Rena
Terrie...I take my Amitriptyline at about 8 p.m. so that it kicks in by the time I go to bed around 10;30 or 11;00. I don't really think that this is the cause of my fatigue because it seems to go in waves and it's not every day. Like last night I couldn't sleep if my life depended on it and yet I was exhausted all day yesterday and the night before that I slept for about 11 hours! Right now I am feeling really tired and I don't say I will be up too long but then I wonder if I sleep, will I feel the way I did yesterday? I really hope that it isn't the Amitriptyline cause it is the only med so far that has actually allowed me to live without some of the excrutiating pain in my legs and feet...I hate the thought of going off of it!!
Moki...I really appreciate your taking the time to send me a note about this...this is only starting for me and I hate it and I don't really know how to deal with it. I have been pretty independent and having MS is bad enough but to have this fatigue is a major kick in the pants that I am not sure how I am going to get around if at all. If you have any little hints, you could always send em' my way...hint, hint...
Lots of Hugs,
Rena
Rena
A few years ago I was given Amitriptyline for my back I think I was on 20mg which was just nice to relax me and be able to sleep, yet my sister was given them for her complaint and she was like a zombie so may be the Amitriptyline is coursing this problem I may be wrong.
If my time for bed was 11pm I would take the Amitriptyline at 930 and I was fine the next day I wish this dr would give me them but for some reason he is reluctant I must ask him why.
On my good days I make a few meals up and freeze them mind you it still knocks the socks of me doing several meals but its great when I just cant cook because of the fatigue.
Really pleased you got your benefit sorted.
A few years ago I was given Amitriptyline for my back I think I was on 20mg which was just nice to relax me and be able to sleep, yet my sister was given them for her complaint and she was like a zombie so may be the Amitriptyline is coursing this problem I may be wrong.
If my time for bed was 11pm I would take the Amitriptyline at 930 and I was fine the next day I wish this dr would give me them but for some reason he is reluctant I must ask him why.
On my good days I make a few meals up and freeze them mind you it still knocks the socks of me doing several meals but its great when I just cant cook because of the fatigue.
Really pleased you got your benefit sorted.
I sure understand the fatigue thing. The last 3 years it is daily with me. It used to only be in the summer that I would experience it and then somehow it became a daily part of my life. I get both the fatigue you explain and the fatigue that Quix explained.
I pray that this eases up for you soon as I know how frustrated you must be. It is hard when you are an active person to have to go through this. I just hope your lying gp can and will help you out. I too think she should send you to a new neuro.
Hope all is well for you soon
Hugs
Moki
I pray that this eases up for you soon as I know how frustrated you must be. It is hard when you are an active person to have to go through this. I just hope your lying gp can and will help you out. I too think she should send you to a new neuro.
Hope all is well for you soon
Hugs
Moki
Hi Rena
I was reading your post and thought when I have fatigue its in my body no energy,I dont want to fall asleep I want to do something but my body will not let me.
Then i read Quixotic post and that's just what I feel and go through.
I can go weeks having a good nights sleep get up not feeling to bad get washed and dressed and that's it I have exhausted myself and have to lay down.
Other time I go to bed and just cant sleep then I end up laying in my bed till late morning then my body aches.
I don't go to bed before 1am because all though my body is tired my brain is awake and I know if I go to bed i will lay there for hours feeling the buzzing and twitching.
I am suffering with this fatigue a lot lately its making me house bound.
I wish I had appreciated the time when I could go out and have the worry of all this, so the very few and very far between times that I go out I cherish,
and thank god I went out and came home with out failing (getting the fatigue).
I was reading your post and thought when I have fatigue its in my body no energy,I dont want to fall asleep I want to do something but my body will not let me.
Then i read Quixotic post and that's just what I feel and go through.
I can go weeks having a good nights sleep get up not feeling to bad get washed and dressed and that's it I have exhausted myself and have to lay down.
Other time I go to bed and just cant sleep then I end up laying in my bed till late morning then my body aches.
I don't go to bed before 1am because all though my body is tired my brain is awake and I know if I go to bed i will lay there for hours feeling the buzzing and twitching.
I am suffering with this fatigue a lot lately its making me house bound.
I wish I had appreciated the time when I could go out and have the worry of all this, so the very few and very far between times that I go out I cherish,
and thank god I went out and came home with out failing (getting the fatigue).
I promise I will stop banging on about this as it is upsetting for you but there needs to be a way out for you. Are there MS groups in your area? If there are you may pick up useful information and contacts regarding doctors. Again speaking from ignorance but is your healthcare insurance based? Is it possible to change insurance and see a doctor privately, if you can afford it? In the UK health insurance companies won't touch you if you have a pre-existing condition, maybe the same where you are. Do you have family or friends living in other areas who you can ask to use their address to register with doctors in their area? Just throwing out ideas.
Please tell me to just stop it if this is annoying or upsetting you. I just want you away from this GP. I understand you need them for the routine stuff and prescription refills, I have had such relationships myself in the past, but you are now fighting a change in symptoms on your own, and this is ultimately not safe. You are exhausted and I know you have been trying forever to find a better doctor. Maybe with your condition you can get treatment from a specialist MS nurse? In the UK experienced nurses can train to the level where they have near enough the same status as doctors, prescribing powers and all. Is it the same where you are? Maybe google around MS groups where you live, contact them, and at least feel that you are not stuck forever with this inadequate GP. I won't keep on at you about this, promise, just from all I've been through I can't sit back and do nothing when I hear someone is being mistreated by their doctor. PM me if you like, even tell me if you are angry with me. I only want things to be right for you, nothing else.
Please tell me to just stop it if this is annoying or upsetting you. I just want you away from this GP. I understand you need them for the routine stuff and prescription refills, I have had such relationships myself in the past, but you are now fighting a change in symptoms on your own, and this is ultimately not safe. You are exhausted and I know you have been trying forever to find a better doctor. Maybe with your condition you can get treatment from a specialist MS nurse? In the UK experienced nurses can train to the level where they have near enough the same status as doctors, prescribing powers and all. Is it the same where you are? Maybe google around MS groups where you live, contact them, and at least feel that you are not stuck forever with this inadequate GP. I won't keep on at you about this, promise, just from all I've been through I can't sit back and do nothing when I hear someone is being mistreated by their doctor. PM me if you like, even tell me if you are angry with me. I only want things to be right for you, nothing else.
I don't think I could even cut up stew meat, it's all I can do to mix up the potato salad when I fix it...........ha..............ha................ha
Good, I'm glad you are going to see the GP, maybe you can get some help.
Take care of yourself and don't push to do too much when you are feeling this way.
Hugs
doni
Good, I'm glad you are going to see the GP, maybe you can get some help.
Take care of yourself and don't push to do too much when you are feeling this way.
Hugs
doni
wish for change...I appreciate the advise about getting a new gp...however, it isn't that simple and I have tried for months to get a new gp and there simply are none that either have the time nor the desire to take on a patient with MS because they simply don't know enough about MS to want to take someone on new with MS. I have pretty well accepted that fact I, of course, have my eyes and ears open for any possibilities...they just are not falling in my lap. The disability claim forms were finally sent in by my gp and I have been approved and will be receiving a disability pension and while I realize that trust is a HUGE issue between a doctor and a patient, I have to keep the physician I have if even just to get my prescriptions refilled when required. I appreciate that you are trying to assist in this situation as has a lot of other people here but it is so easy to say "go get a new gp" or "go get a new neuro" however it is very difficult where I am living and so far...I have had no success.
doni54...well it makes me feel better knowing that someone else does their supper dishes the next morning! I had such a hard time yesterday trying to put together a stew for supper that by the time I was done I was exhausted. Usually I have no trouble sleeping and being that I am on Amitriptyline 40mg in the evening, I shouldn't have any trouble. Night before last I had no trouble sleeping and slept about 11 hours but I woke up feeling terrible and was extremely tired all day yesterday. Now last night, I tossed and turned and sweat and felt horrible all night and of course today I feel crappy again! As for the irritability, I had a fight with the stew meat I was trying to cut up yesterday and ended up in tears! It all seems really foolish now but that is how I felt and I couldn't control it anymore than a toddler that hasn't had their afternoon nap! This is a frustrating situation but I just called my lying gp's office and although they said she is booked up she will see me on Thursday so maybe I can get something that will help me get through the day???
Hey Heather...I am not a sleep person and never have been...I have never been one to take naps and maybe that is something playing against me...I don't know. Some people say go with the flow and take a nap but I find that hard to do after I have slept 11 hours the night before and really haven't been doing anything to warrant it. Some people say you need to do more...get out and get some exercise...well, on Sunday I was out...we went to the dump, to Walmart (where I get lots of walking done), then came home and cleaned out the truck and then made supper. So it's not like I am sitting on the computer all day every day...I do have things to do. So I don't really know what the answer is. My lying gp gave me some Zopiclone for the nights that I can't sleep but I have only taken 1/2 of one so far because I have more nights that I am sleeping 9-12 hours than nights like last night. I could have taken one last night but once I am in bed and waking up over and over, I never think of taking one.
So we will see what the lying gp has to say. I am going to explain what is going on and if she doesn't see a problems with what I am going through I am going to ask her to refer me to a different neurologist because I feel that I should have a new MRI done as well. It is 12 months since I had what myself and others consider a relapse and I am getting some new symptoms now and personally I think an MRI should have been done in May...six months after the last MRI that the last neuro stated was positive for MS and I was shoved off to find a new neuro for a second opinion. Of course I will let you know what the gp has to say but I don't think a second MRI is asking too much do???
Lots of Hugs,
Rena
doni54...well it makes me feel better knowing that someone else does their supper dishes the next morning! I had such a hard time yesterday trying to put together a stew for supper that by the time I was done I was exhausted. Usually I have no trouble sleeping and being that I am on Amitriptyline 40mg in the evening, I shouldn't have any trouble. Night before last I had no trouble sleeping and slept about 11 hours but I woke up feeling terrible and was extremely tired all day yesterday. Now last night, I tossed and turned and sweat and felt horrible all night and of course today I feel crappy again! As for the irritability, I had a fight with the stew meat I was trying to cut up yesterday and ended up in tears! It all seems really foolish now but that is how I felt and I couldn't control it anymore than a toddler that hasn't had their afternoon nap! This is a frustrating situation but I just called my lying gp's office and although they said she is booked up she will see me on Thursday so maybe I can get something that will help me get through the day???
Hey Heather...I am not a sleep person and never have been...I have never been one to take naps and maybe that is something playing against me...I don't know. Some people say go with the flow and take a nap but I find that hard to do after I have slept 11 hours the night before and really haven't been doing anything to warrant it. Some people say you need to do more...get out and get some exercise...well, on Sunday I was out...we went to the dump, to Walmart (where I get lots of walking done), then came home and cleaned out the truck and then made supper. So it's not like I am sitting on the computer all day every day...I do have things to do. So I don't really know what the answer is. My lying gp gave me some Zopiclone for the nights that I can't sleep but I have only taken 1/2 of one so far because I have more nights that I am sleeping 9-12 hours than nights like last night. I could have taken one last night but once I am in bed and waking up over and over, I never think of taking one.
So we will see what the lying gp has to say. I am going to explain what is going on and if she doesn't see a problems with what I am going through I am going to ask her to refer me to a different neurologist because I feel that I should have a new MRI done as well. It is 12 months since I had what myself and others consider a relapse and I am getting some new symptoms now and personally I think an MRI should have been done in May...six months after the last MRI that the last neuro stated was positive for MS and I was shoved off to find a new neuro for a second opinion. Of course I will let you know what the gp has to say but I don't think a second MRI is asking too much do???
Lots of Hugs,
Rena
Boy, are you tellingpart of my story? Only difference is that I am NOT sleeping long hours at night. In fact, I am kept awake by a busy brain that won't shut off and lots of leg pain. When I do manage to get to sleep, it never seems like it's enough. When I get up in the morning, I will usually feel like I have to go lay back down within an hour. I fight to keep from going back to bed. I'm afraid that my partner will not really understand the difference between fatigue and laziness. He's very tolerant, but I don't think he really understands. So says a man that is snoring within 5 minutes of hitting the bed. Lucky him.
I know that depression can play a hidden role and I also know that it can be caused by the MS. It's hard to differentiate among the two. I know take an anti-depressant in the evening, but it doesn't aid in sleep. I even take 30 mgs. of Balcofen at night, that doesn't seem to help with sleep either.
I feel for you Rena girl. I am going through the same thing each morning. Fighting to not go back to bed....it's rough.
Hugs,
Heather
I know that depression can play a hidden role and I also know that it can be caused by the MS. It's hard to differentiate among the two. I know take an anti-depressant in the evening, but it doesn't aid in sleep. I even take 30 mgs. of Balcofen at night, that doesn't seem to help with sleep either.
I feel for you Rena girl. I am going through the same thing each morning. Fighting to not go back to bed....it's rough.
Hugs,
Heather
Hi, I am not dx, but I know how you are feeling. This past month and still today I am fighting with awful fatigue. It is very hot and humid here and I kinda think that might be my problem. Heat index over 100 degrees tends to cause me to short out....ha...ha....ha
I have always had trouble with insomnia, but it had worsened to the point that I wasn't sleeping at all. I didn't want to take anything strong so I went the herbal route and found out that melatonin was used as a sleep aid. I bought some and started using it about 3 weeks ago, I have been sleeping like a baby, for about 6-8 hours a night, with no morning hangover. Hasn't helped the fatigue any though.
It is only 10 am here and I woke up at 7 am, but I could honestly go back to bed, it's all I can do to sit here and type. I need to go to the grocery, but am sitting here trying to figure out where the energy to go is gonna come from. My daughter had to go last week cause I just couldn't find a way to manage it.
I love to cook, but I have found myself choosing one dish, easy things, as if it takes very long to prepare the meal I am almost in tears from exhaustion before I get finished. As for the clean up afterwards, all I usually manage is putting the leftovers in the frig and doing the dishes when I first get up in the mornings.
One problem I have been having lately is I get really irritable because of the things I can't do, or because my cog fog is so thick I feel like I'm in another world looking into this one. Do you feel this way sometime? Just wondering if it is just me.
I hope you feel better soon and that your fatigue will let up.
doni
I have always had trouble with insomnia, but it had worsened to the point that I wasn't sleeping at all. I didn't want to take anything strong so I went the herbal route and found out that melatonin was used as a sleep aid. I bought some and started using it about 3 weeks ago, I have been sleeping like a baby, for about 6-8 hours a night, with no morning hangover. Hasn't helped the fatigue any though.
It is only 10 am here and I woke up at 7 am, but I could honestly go back to bed, it's all I can do to sit here and type. I need to go to the grocery, but am sitting here trying to figure out where the energy to go is gonna come from. My daughter had to go last week cause I just couldn't find a way to manage it.
I love to cook, but I have found myself choosing one dish, easy things, as if it takes very long to prepare the meal I am almost in tears from exhaustion before I get finished. As for the clean up afterwards, all I usually manage is putting the leftovers in the frig and doing the dishes when I first get up in the mornings.
One problem I have been having lately is I get really irritable because of the things I can't do, or because my cog fog is so thick I feel like I'm in another world looking into this one. Do you feel this way sometime? Just wondering if it is just me.
I hope you feel better soon and that your fatigue will let up.
doni
I don't know how the GP system works in your area but I really strongly recommend you do anything it takes to find a better doctor who does right by you and you can trust. Tell you Primary Care Trust, or whoever regulates GPs that relations have broken down, maybe even tell them about that disability claim issue (it was you wasn't it?), and that you need to start again.
Chronic illness and poor primary care are a terrible combination. You know I speak from the worst of experiences.
You should be able to trust your doctor enough to take this to him or her. There could be anything going on, anaemia, thyroid...etc. you know more than me I'm sure. I am wavering myself between endless fatigue sleeping ten hour nights and waking up exhausetd, to my current total insomnia. Needing sleep messes you up. I have actually been referred to a sleep clinic by my neurologist, not for this but for another sleep disorder. The waiting list is forever but then it took me twenty odd years to even think of mentioning it to a doctor, and the man took it seriously! I know so much less than you or Quix, but I do understand that fatigue is an important symptom, and is part of MS, but you cannot just put it down to that until other causes have been eliminatd. You know the blood tests - blood count, liver, renal etc. If you are low on ferritin maybe some iron pills are all you need. I hope it is something as simple as this. PLEASE get another doctor. You have enough to deal with without having to chase a GP around to do their job. They are drawing a very large salary paid for by your taxes, and if you do not trust them then they are not doing their job. You know I hold strong opinions, but it is for good reason and from harsh personal experience. You deserve to be treated with respect. If I am talking gibberish please forgive me I haven't slept for two nights. But it's good to be back here.
Chronic illness and poor primary care are a terrible combination. You know I speak from the worst of experiences.
You should be able to trust your doctor enough to take this to him or her. There could be anything going on, anaemia, thyroid...etc. you know more than me I'm sure. I am wavering myself between endless fatigue sleeping ten hour nights and waking up exhausetd, to my current total insomnia. Needing sleep messes you up. I have actually been referred to a sleep clinic by my neurologist, not for this but for another sleep disorder. The waiting list is forever but then it took me twenty odd years to even think of mentioning it to a doctor, and the man took it seriously! I know so much less than you or Quix, but I do understand that fatigue is an important symptom, and is part of MS, but you cannot just put it down to that until other causes have been eliminatd. You know the blood tests - blood count, liver, renal etc. If you are low on ferritin maybe some iron pills are all you need. I hope it is something as simple as this. PLEASE get another doctor. You have enough to deal with without having to chase a GP around to do their job. They are drawing a very large salary paid for by your taxes, and if you do not trust them then they are not doing their job. You know I hold strong opinions, but it is for good reason and from harsh personal experience. You deserve to be treated with respect. If I am talking gibberish please forgive me I haven't slept for two nights. But it's good to be back here.
I realize that MS can disrupt the sleep but I am also on 40mg of Amitriptyline at bedtime and I am sleeping the night through so why am I waking up soooo tired in the a.m.? It is now 3 p.m. and I still could go back to bed. I have things that I have to do...it's really difficult and I get frustrated and tearful by little things like not being able to cut a piece of meat in half! I would much rather say to heck with it but it has to be done! Hubby works 12 hour shifts and I have to cook him something! He is really good at helping but he works nights tonight so he has to get some sleep before his shift at 7! I would go sit down rather than do what needs to be done but am I hurting myself by not resting instead? This has me totally messed up and out of sorts and I don't like it one bit! Quix, do you think it's worth bringing to the attention of lying gp or should I bother? What's your opinion?
Rena
Rena
I'm not sure the sleeping too much is actually a fatigue thing. MS is known for disrupting the sleep. The most common disruption is insomnia of varying types. But, sleeping too much is well described, too. It's called hypersomnia. Mine doesn't feel the same way as the fatigue. All of my sleeping is done in the same block of time, not usually with naps.
It's like the old dog's description of his life:
"When I plays, I plays hard!
When I eats, I eats a lot!
And when I sits, I falls asleep."
The fatigue for me is when I am awake and I want to do things, I get up to do them and just can't muster the energy. I go sit down again.
Quix
It's like the old dog's description of his life:
"When I plays, I plays hard!
When I eats, I eats a lot!
And when I sits, I falls asleep."
The fatigue for me is when I am awake and I want to do things, I get up to do them and just can't muster the energy. I go sit down again.
Quix
Fatigue was one of the symptoms I got in my first attack... shopping for a super bowl party and I came home and took a four hour nap. got up watched the first half and went back to bed. Most MSers suffer from it heat makes it worse. 3 - 6 is the hardest part of the day.
I am on provigil for mine, can't live without it.
my fatigue did get better... its not always this bad... it just takes a while
hugs
I am on provigil for mine, can't live without it.
my fatigue did get better... its not always this bad... it just takes a while
hugs
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