chronic fatigue


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I had a brainstem stroke in 2006 and 3 falls after that one of which punctured my lung. I have had problems with fatigue since my stroke but it is getting worse so that it is hard to function. My neurologist put me on a medication "provigil" to help with the fatigue but it doesn't seem to be working. I have an appt with him in 2 week and I, of course, will discuss this. I have been up this morning for only 2 1/2 hours and I already need a nap. The only thing I have done is pay bills. I hope by lying down for an hour I will be able to do my exercise. Yesterday was a full day as I registered at a new Silver Sneakers facility and it was late in the day. I napped before the 4:00 appt and the when we got back at 5:15 I had to lay down again. I hate this way of life. It used to be better. My husband died a year ago next month and I know grief can cause fatigue also. I've been to a grief group and my clinical psychologist. She told me to do MORE but I'm just not capable. Anyone have a bad fatigue problem? Do I go to a grief support group or the stroke group which I know better. I seem to be all confused. Leah

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Leah, for me I just take one day at a time and my older sister tells me I need to rest sometimes!! I can physically go all day long doing things I know needs to be done and it doesn't seem to bother me!! Before the stroke I operated a bowling Pro Shop all day long by myself inside a bowling center but I can feel it now that I turned 71 in July!! I take my pain meds twice a day and sleep good all night so I guess I never had a fatigue problem and it's been nearly 9 years already for this stroke!!

 

Just make sure you get rest so you don't have anymore spills!! Maybe your doctor can solve the problem and you'll be alright!!

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Sorry I can't help you Leah, but I haven't had the fatigue problem that seems to affect so many others. And I'm very grateful for that. Have you had blood tests done to see if everything is functioning okay and if you might have a deficiency of some vitamin or mineral?

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I am on an antidepressent; in fact, just changed to a newer one to see if that would help. My neurologist is also trying "provigil" which is supposed to be a "miracle" drug for chronic fatigue. I saw a man interviewed on CBS and he said it has changed his life including, physically and mentally. Isn't working me for me so far. Fred,. for you and others I'm glad you haven't experienced. If it would go away I would be able to exercise more and get out more and have a better life. I hope that is God's will for me. I have had every lab test to see if I'm anemic or deficit in any vitamins or minerals but tests all come back just fine. It's wierd. On the goof side, I have to report I haven't fallen in 14 months - a tribute to my using my walker 100% and to being extremely cautious

Thank you everyone for your concerns. Hugs, Leah

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Leah, yes I have the exact same problem. It's been 15 months post stroke, and fatigue definitely has gotten worse! It does disrupt our lives. One day I woke up and was up for an hour, then proceeded to sleep, which was a total of 18 hours! I told my doctor, who put me on Ritalin. Not only does this help, it also gives me energy and boosts my antidepressants. I am so glad because now I can do my therapy without feeling the extreme fatigue. I hope you can find what works best for you. Do, however, get as much rest as you can, because your body is working extra hard and brain is re-wiring. Best to you! Beth

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i had a massive right side cva stroke doctors could not give me a reason why I got a blood clot that moved into my brain I was pu t on blood pressure medicine for a while which made me tired all the time i would wake up in the morning si t in my recliner and want to fall back to sleep once I got off the medicine it got better but I would still tire easily I was told that the brain healing will take process will take a long time and i need to take naps to rest my brain when it is tired my whole body shuts down and I use to get depressed and I was put on Zoloft an antidepressant I try to take each day in stride and keep a positive attitude I know God has brought me through this far I was told by the Neuro surgeon who took a large piece of my skull out on the right side of my head to a llow my brain to swell he said the stroke was so massive that I should have died and since I did'nt I should be severally disabled I have regained the use of my left arm and leg i am able to walk but still working on getting the leg stronger I get tired easily when I walk for a long time so for the past 2 yrs post stroke I has been quite a journey and it continues with Gods help I am Bill and remember as the brain heals hopefully the fatigue will get better keep a positive attitude

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Thank you ftw for your inspiration. My neurologist just changed my doseage from one to l-1/2 so I hope that will make my fatigue bearable. It makes it hard and I'm anxious a lot afraid I won't be able to make a commitment,like a new physical trainer appt. for next Tuesday. I have at-home exercise I do so I'll do a little every day. God bless. Leah

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It sounds like you all have made a lot a progress. I cannot walk without a cane or better off with my walker. My balance is very bad and I certainly don't want to fall again. Every fall is another disaster. I shouldn't be here either, after my brain stem clot and then being on life support - they came real close to pulling the plug. After my husband died almost a year ago I wished they would have but I am a strong believer and know it wasn't my time yet. I promised my husband the day he died that I would work hard to get my strength back - not there yet, but still trying. Thank you for you comments - they all help to know I am now alone. God is always with me too. Hugs, Leah

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I don't know Leah but I would thing antidepressants would or could cause some fatigue in the body and perhaps the brain too!! Once your doctor check you in a couple weeks I would certainly discuss this with him!! Just maybe your body doesn't need the antidepressants any longer and now they make you fatigue!

 

On the other hand it takes so much out of the body just to walk and get around with a cane because in my case I'm thinking about not falling so I go much slower!! On my scooter I can fly and I don't get tired at all like I do when I'm walking!! I keep asking myself how long will it take me to get where I'm going?? And don't let me get to a part of the sidewalk that is uneven or broken, man that scares me that I might fall!!

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My fiance' has cronic fatigue also. He stroke just 4 months ago so he is fairly new in all this. He told his neuro about the fatigue and was told that it is the bodys way of healing its self. He sleeps on average of 6-8 hours a night and during the day usually takes at least 2 naps of approx 3 hours each. Sounds like a lot of sleep but if thats what it takes to make him feel better when he is awake then so be it. His main issue is having energy for exercise. We do what he can and some days it is more than others. Just take one day at a time and continue to move foward. Sending (((((((((((HUGS))))))))))))))) and prayers your way!

 

Cat

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Hi,

 

Due to a lung puncture, you may be not getting enough oxygen. This can cause fatigue. Futhermore, anti depressant medications cause fatigue. Have your md check oxygen levels and get an oxygen meter to check levels at home. Follow md instructions when weaning from anti depressants. In some survivors, strokes can cause fatigue. Some medications can cause fatique. Remerber the warings:"May cause drowyness.

 

Best wishes,

 

Shayle

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my last stroke was 11 march 2009 an dI still bet extremely exhausted - mine won't go away. I have to nap at least once a day sometime twice

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Even after 6 years, I have to sleep in til at least 9:30-10:00. Nap for 1-1/2 hrs around 4 but I'm still tired ALL the time. Everything takes effort. One day @ a time and the Lord is what is keeping me going. Thanks for all your replies. Leah

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Hi Leah

I'm four years out, but 70 years old, so I take naps whenever I feel like it. One of the many perks of retirement. Several of my medications made me

feel tired all the time, so I switched or ditched. Made all the difference.

But don't rule ot grief fatigue either. That definitely passes. I remember it well.

Although I still nap often, I feel great when I wake.

Don't give up on feeling better one day, and stick with your pal the walker. Mine keeps me vertical and prevents all the black and blue decorations.

 

Dorothy

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Thank you for the information. I printed it and will give to my neurologist who I see tomorrow. I had my stroke 6 years ago and the article talks about 6 months. Frankly at 6 months I could hardly think at all! I know grief will induce fatigue but I've had the fatigue for several years before my husband passed away. I've heard that antidepressants can lead to fatigue and I'm going to talk to both my neurologist and PCP about going off of them as a trial (but keeping them close at hand). The fatigue is what has taken most of my social life away. I have long-term care insurance so do have a lady with me who I like during the day and I make it a point to stay in contact by phone with old friends. It's just the pits!! And I am tethered to my walker! NO MORE FALLS.

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My beautifull wife.which I adore her dearly,has lately taken more naps than on the first year of her Stroke(JUly 2010) she gets up in the morning for Breakfast then Medication and inmediately wants to go to sleep, and she sleep to 12 pm...then Im pushing her to go shoping or out..in the wheel chair,but sometimes and most of the time these days she will prefer to go back to another nap..even importants features that could happen in the day,,she will prefer to have a rest....just my 2 cents...

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Leah, my husband has had a lot of trouble with sleepiness since his stroke Dec 2010. He was put on provigil while in Rehab and he was still mostly unable to participate in rehab due to tiredness and distractibility. They were giving him Ambian to sleep at night and provigil to wake up in the morning. It made him a mess. I insisted he get off both once he came home but he still had a lot of problems with sleeping during outpatient rehab. After about a year of this, our rehab dr decided to put him on Ritalin. It has made a world of difference. He take 10 mg in the morning and he is awake and engaged all morning. The dr ordered a second dose at noon but I rarely give it because he still likes to take an afternoon nap most days. But he seems much more engaged when he's up. There are all kinds of factors that can affect tiredness, as you know, but you might consider talking to your doctor about this if the increased dosage of provigil doesn't help.

 

Donna

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Hi Leah, I had a stroke in the third left ventricle, which, I was told is part of the brain stem. I was tired from the moment I awoke from the six week coma - my first words were 'I'm so tired" It has not changed in the sixteen years since the stroke, and I have spent much time and money searching for a cure. So called specialists just tell me that it is a common symptom after a stroke, and here try some antidepressants and, it will help if you "accept" that your life has "changed". And the usual, "being depressed can cause tiredness, you know" Like being tired all the time is not depressing? And, unfortunately, I am 54, now, so they like to tell me that I am hitting menopause and that too can cause tiredness.

The Provigil will probably help, I used Modavigil for a short while, and it felt so wonderful to be wide awake and alert, and not dragging myself around...until I found that after taking the Modavigil for 11 days straight, I had gained 7 pound. So I stopped using it. After all this time, the fatigue has slightly (only slightly) improved, in that I can go a whole day, and not have to go and lie down, but when i wake up in the morning, all I want to do is roll over and go back to sleep. And it is hard work forcing myself to get up and start the getting ready to go out process. I remember, once, if I realized that I had woken up late, i could leap out of bed and run to catch up the time that I had lost, so that I could get to work on time. Now, I just drag myself out of bed, and do the survival things that I have to do to get myself to work (the rare times that I have a job), and leave the tasks that i normally am responsible for (walking the dog, making the bed, tidying the kitchen) to my partner who works from home.

I continually say that it is the tiredness that is my greatest disability, not the dud hand, not that I walk with a limp, but being tired all the time makes it impossible to do anything worthwhile or enjoyable. As I said I have done so much research and spent so much time and money trying to resolve the fatigue, and still do not have anything that gives me back a zest for life.

My latest research suggest that the tiredness is actually caused by adrenal fatigue, I exhibit exactly the same symptoms as someone with adrenal fatigue, but I cannot find a doctor who will treat me for this because i do not exhibit what they consider the gold standard for adrenal fatigue - low blood pressure, mine is no longer high, but it is not low, or weight loss, I struggle to lose weight. One offered to prescribe the treatment (steroids) but since this would make me gain weight, and could possibly awaken a genetic tendency for diabetes, I was reluctant to just try them.

So I cannot give you any hints or hope. I currently take High Vig, (a vitamin supplement which contain guarana, ginseng vit B, and a whole host of other stimulating herbs), if i need to be awake and alert for a period of time, and it does get me through, not like I used to be before the stroke, but better than I am now, without it. But the problem with guarana is that it causes vision problems, and I have, recently noticed blurry vision a couple of times, so I have stopped taking it as often as I used to do.

So please if you discover something that does help, I would be very grateful to hear about it.

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Hi Leah, I had a stroke in the third left ventricle, which, I was told is part of the brain stem. I was tired from the moment I awoke from the six week coma - my first words were 'I'm so tired" It has not changed in the sixteen years since the stroke, and I have spent much time and money searching for a cure. So called specialists just tell me that it is a common symptom after a stroke, and here try some antidepressants and, it will help if you "accept" that your life has "changed". And the usual, "being depressed can cause tiredness, you know" Like being tired all the time is not depressing? And, unfortunately, I am 54, now, so they like to tell me that I am hitting menopause and that too can cause tiredness.

The Provigil will probably help, I used Modavigil for a short while, and it felt so wonderful to be wide awake and alert, and not dragging myself around...until I found that after taking the Modavigil for 11 days straight, I had gained 7 pound. So I stopped using it. After all this time, the fatigue has slightly (only slightly) improved, in that I can go a whole day, and not have to go and lie down, but when i wake up in the morning, all I want to do is roll over and go back to sleep. And it is hard work forcing myself to get up and start the getting ready to go out process. I remember, once, if I realized that I had woken up late, i could leap out of bed and run to catch up the time that I had lost, so that I could get to work on time. Now, I just drag myself out of bed, and do the survival things that I have to do to get myself to work (the rare times that I have a job), and leave the tasks that i normally am responsible for (walking the dog, making the bed, tidying the kitchen) to my partner who works from home.

I continually say that it is the tiredness that is my greatest disability, not the dud hand, not that I walk with a limp, but being tired all the time makes it impossible to do anything worthwhile or enjoyable. As I said I have done so much research and spent so much time and money trying to resolve the fatigue, and still do not have anything that gives me back a zest for life.

My latest research suggest that the tiredness is actually caused by adrenal fatigue, I exhibit exactly the same symptoms as someone with adrenal fatigue, but I cannot find a doctor who will treat me for this because i do not exhibit what they consider the gold standard for adrenal fatigue - low blood pressure, mine is no longer high, but it is not low, or weight loss, I struggle to lose weight. One offered to prescribe the treatment (steroids) to just try them, but since this would make me gain weight, and could possibly awaken a genetic tendency for diabetes, I was reluctant to do so.

So I cannot give you any hints or hope. I currently take High Vig, (a vitamin supplement which contain guarana, ginseng vit B, and a whole host of other stimulating herbs), if i need to be awake and alert for a period of time, and it does get me through, not like I used to be before the stroke, but better than I am now, without it. But the problem with guarana is that it causes vision problems, and I have, recently noticed blurry vision a couple of times, so I have stopped taking it as often as I used to do. You can get this product over the NET, I buy it at the supermarket (in Austraila)

So please if you discover something that does help, I would be very grateful to hear about it.

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Maree: Thank you for your post. It is the closest I've heard from a stroke survivor which is similar to my "fatigue". Tomorrow when I have more time (it's now 8:45 pm AZ time) I'll write some more but in a nutshell I have gotten down to prayer and acceptance, neither of which hit the nail on the head. It's is hard for others to understand why I can't go out for lunch or dinner or shopping or whatever. I work out lx/week with a trainer and have a guided schedule for at home exercise during the week. My trainer says it's important I don't overdo or do more than one "big" thing in a day. Like a dr. appt is a "big" thing. I walk with a walker and need help with showers, etc.

My stroke was 6 years ago and I was better but after three falls I got worse. My husband and main caregiver died a year ago next month. I had an awful time but the grief is better now and I have a caregiver during the day. There is no such thing as "normal" for me. Thanks for sharing. Leah

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  • 3 weeks later...

AZ Leah

 

I have had the fatigue issue and can agree that it is a real bummer.

 

The docs have not offered anything to help, and usually just shrug it off.

 

By mid day, I am just toast and trying to do anything is pretty much futility.

 

I have researched the issue and found little help.

 

My docs nurse and I spoke of this and she agrees that its an issue, but offered little advice.

 

Some days are better than others, for me anyway.

 

Unfortuneatly, what I have read says that the fatigue can last months, years or never resolve.

 

I know, this is not what any of us want to hear, especially when we have been active prior to our stroke, but it is what it is.

 

I try to get out daily and walk, and this seems to help some.

 

I hate drugs, and avoid all but the stuff thats supposed to keep any further strokes from occuring.

 

I do know this, every time there is a set back ( fall or ????) it brings the fatigue back hard.

I had an exploratory procedure a while ago for a kidney tumor, and it kicked me hard.

I got over that, then twisted an ankle real bad and that brought the fatigue back hard again.

 

Good luck and keep working at it

 

Snowy

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Hi Leah I suffer from fatigue as well. Just doing dishes will knock me out for a day. Also my meds play a big role. After I take them it is 5 to 10 min and I am out. I even told the Dr that I reduced the Aggrnox because it caused me to sleep all day from one dose to the next. I can't live like that I have a child I need to take care of til my husband can get home it is just the three of us we have no support outside the house our friends who can help live to far away. and the doctor agreed that the dose was too strong she did not prescribe them the doc before her did.

You can check with your pharm. and see if it side effects of meds or med interaction. But too it can be stroke effect as well from what I have been told. That why they say not to do too much to fast.

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  • 2 weeks later...

Leah, I am so sorry to read that, on top of the stroke, you lost your husband. That would make life difficult for you if you live alone.

I would find life impossible, and VERY lonely if I was not living with my ex partner/carer. Losing close friends and workmates makes life so lonely, going out talking to the neighbours is just superficial social contact, rather like talking to strangers in the supermarket, it just distracts me from the loneliness, it does not fix it.

I note that you say you do not get up till somewhere between 9.00am and 10.00am. I used to stay in bed till after that time, but i have found that if I make sure that I do get up by 9.00am, NO later, then I am not quite as tired during the day, probably something to do with the circadian rhythm. The problem with that is that there is more day to fill in, with nothing meaningful to do. I probably lie down to go to sleep between 11.00pm and 12.00pm, which I want to keep, since that was the time I used to go to bed before the stroke (if I was not working the evening shift) and that suited my brain and body.

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