Guest guest Posted October 10, 2005 Report Share Posted October 10, 2005 Yes, sleep has a negative effect on my weakness and has for many years. I always have to " recover " from sleep, and it can take hours sometimes to get back to my strength/weakness baseline. I'm talking about measurable weakness, grade 1-5 Manual Muscle Testing (MMT) scale, not fatigue. My rx potassium, Klor-Con EF helps considerably with this reaction, and it IS typical of low potassium for muscle weakness to get worse at rest. I also have adrenal insufficiency, and I have often wondered if this somehow relates to the sleep/weakness effect. I have asked my neurologist if this reaction to sleep is a recognized neurological phenomenon and he says no. We did do a sleep study but found no major clues there. My arms in particular often feel totally dead when I wake up, very heavy like cement, and it takes quite a while to be able to move them. My gait is also much worse after sleep, especially in the morning, but naps have a similar effect. I'm sure there is some good biochemical, metabolic explanation for this, but I have not found anyone who could tell me what is happening or how to prevent it, other than the potassium issue. If you ever get some clues or explanations from your doctors, I'd be very interested. Barbara > weak feeling > > I know this sounds weird but I was wondering if this happens to any of > you. Sometimes, when I have been asleep, I will wake up and my arms and > legs feel so weird- like jello and so weak. Eventually, it will go > away. Just didn't know if it was worth mentioning to my doc or if I am > just weird. Thanks! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2005 Report Share Posted October 10, 2005 For Barbara: you just described the porblem I am having with my legs all of a sudden. It appears that if I have them up on the foot rest on the loveseat where I usually sit? I also have found that this heavy feeling in my legs is helped if I put on one of the pairs of as I call them, " heavy dress socks " that I kept of my husbands. It has seemed the last few nights that I have less problems if I even sleep in a pair of them?? Oh well, strange things?? Dolores Barbara Seaman wheatchild@...> wrote:Yes, sleep has a negative effect on my weakness and has for many years. I always have to " recover " from sleep, and it can take hours sometimes to get back to my strength/weakness baseline. I'm talking about measurable weakness, grade 1-5 Manual Muscle Testing (MMT) scale, not fatigue. My rx potassium, Klor-Con EF helps considerably with this reaction, and it IS typical of low potassium for muscle weakness to get worse at rest. I also have adrenal insufficiency, and I have often wondered if this somehow relates to the sleep/weakness effect. I have asked my neurologist if this reaction to sleep is a recognized neurological phenomenon and he says no. We did do a sleep study but found no major clues there. My arms in particular often feel totally dead when I wake up, very heavy like cement, and it takes quite a while to be able to move them. My gait is also much worse after sleep, especially in the morning, but naps have a similar effect. I'm sure there is some good biochemical, metabolic explanation for this, but I have not found anyone who could tell me what is happening or how to prevent it, other than the potassium issue. If you ever get some clues or explanations from your doctors, I'd be very interested. Barbara > weak feeling > > I know this sounds weird but I was wondering if this happens to any of > you. Sometimes, when I have been asleep, I will wake up and my arms and > legs feel so weird- like jello and so weak. Eventually, it will go > away. Just didn't know if it was worth mentioning to my doc or if I am > just weird. Thanks! > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2005 Report Share Posted October 11, 2005 This is very interesting. I too have increased weakness in the AM. I really have a hard time with walking and sitting upright the first few hours of the day. I wonder if this has anything to do with orthostatic intolernce/dysautonomia???I just found out that I have low aldosterone and renin levels. They regulate sodium,potassium, fluid levels in the body and blood pressure. Because of this I have low blood volume. I wonder if after sleeping and lack of fluids our blood volume is lower making us weaker and or our levels of aldosterone and renin are lower and we have decreased potassium??? Just a thought. Dawn anich -- In , " Barbara Seaman " wrote: > > Yes, sleep has a negative effect on my weakness and has for many years. I > always have to " recover " from sleep, and it can take hours sometimes to get > back to my strength/weakness baseline. I'm talking about measurable > weakness, grade 1-5 Manual Muscle Testing (MMT) scale, not fatigue. My rx > potassium, Klor-Con EF helps considerably with this reaction, and it IS > typical of low potassium for muscle weakness to get worse at rest. I also > have adrenal insufficiency, and I have often wondered if this somehow > relates to the sleep/weakness effect. I have asked my neurologist if this > reaction to sleep is a recognized neurological phenomenon and he says no. We > did do a sleep study but found no major clues there. My arms in particular > often feel totally dead when I wake up, very heavy like cement, and it takes > quite a while to be able to move them. My gait is also much worse after > sleep, especially in the morning, but naps have a similar effect. I'm sure > there is some good biochemical, metabolic explanation for this, but I have > not found anyone who could tell me what is happening or how to prevent it, > other than the potassium issue. If you ever get some clues or explanations > from your doctors, I'd be very interested. > > Barbara > > > > > weak feeling > > > > I know this sounds weird but I was wondering if this happens to any of > > you. Sometimes, when I have been asleep, I will wake up and my arms and > > legs feel so weird- like jello and so weak. Eventually, it will go > > away. Just didn't know if it was worth mentioning to my doc or if I am > > just weird. Thanks! > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2005 Report Share Posted October 11, 2005 Dawn, I'm glad you are getting some clues. A couple of years ago we did check aldosterone in a 24-hour urine collection and it was normal at that time. I have documented low serum potassium off and on going back as far as 1980, but now with 100 meq a day, my serum potassium usually stays up. As far as I know, no one has checked renin. Another theory I have re the sleep-induced weakness relates to REM sleep. There is a normal paralysis of major voluntary muscles that occurs during dreaming in REM sleep. I have wondered if for some reason in my case, this effect is not wearing off as quickly as usual. There is a lot more REM sleep towards morning, which could explain why I have such pronounced symptoms in the morning as compared to how I feel when getting up earlier in the night. Naps where I can remember dreaming are usually associated with more pronounced symptoms upon waking, especially with my arms. But again, the sleep study did not pick up any unusual clues, though I only slept 2-3 hours. Which makes me wonder, of course, if they got a good sample. But no one felt the need to try again. Yes, I often have low blood pressure in the morning (feet turn purple when I sit up) and so I drink lots of fluids if I'm feeling especially bad. This in addition to the two cups of liquid I get through night feeding. Barbara > Re: weak feeling > > This is very interesting. I too have increased weakness in the AM. I > really have a hard time with walking and sitting upright the first > few hours of the day. I wonder if this has anything to do with > orthostatic intolernce/dysautonomia???I just found out that I have > low aldosterone and renin levels. They regulate sodium,potassium, > fluid levels in the body and blood pressure. Because of this I have > low blood volume. I wonder if after sleeping and lack of fluids our > blood volume is lower making us weaker and or our levels of > aldosterone and renin are lower and we have decreased potassium??? > Just a thought. Dawn anich > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2005 Report Share Posted October 11, 2005 I am like this too, but I have always assumed it was the overnight fasting that caused it. dawnanich wrote: >This is very interesting. I too have increased weakness in the AM. I >really have a hard time with walking and sitting upright the first >few hours of the day. I wonder if this has anything to do with >orthostatic intolernce/dysautonomia???I just found out that I have >low aldosterone and renin levels. They regulate sodium,potassium, >fluid levels in the body and blood pressure. Because of this I have >low blood volume. I wonder if after sleeping and lack of fluids our >blood volume is lower making us weaker and or our levels of >aldosterone and renin are lower and we have decreased potassium??? >Just a thought. Dawn anich > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2005 Report Share Posted October 11, 2005 I don't know enough about mito to be able to say what causes the AM weakness for some people. I'm not generally weak in the morning, but I know I always have to eat a fairly large snack before I go to bed, or else I can't sleep. I know, even as a kid, though, I'd be say, shopping in the store with my mom, and all of a sudden my knees would kind of " give " and I'd feel weak and tired. My mom would turn around, and here I'd be sitting down, leaning up against one of the shelving displays or something. This didn't happen all the time, but looking back, I can see how the low energy has affected nearly all of my life... yeah, I hated gym class ( I " sucked " at it, I thought!), I could never run as fast as any one else, never could perform as well, etc. etc. Is it any wonder I took to book-reading and English as my favorite parts of the school day? LOL. Re: weak feeling I am like this too, but I have always assumed it was the overnight fasting that caused it. dawnanich wrote: >This is very interesting. I too have increased weakness in the AM. I >really have a hard time with walking and sitting upright the first >few hours of the day. I wonder if this has anything to do with >orthostatic intolernce/dysautonomia???I just found out that I have >low aldosterone and renin levels. They regulate sodium,potassium, >fluid levels in the body and blood pressure. Because of this I have >low blood volume. I wonder if after sleeping and lack of fluids our >blood volume is lower making us weaker and or our levels of >aldosterone and renin are lower and we have decreased potassium??? >Just a thought. Dawn anich > > > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2005 Report Share Posted October 11, 2005 ---Now that I think of it! When I wake up in the middle of the night with night sweats and chills, I can not move. I am so cold and want more covers but feel paralyzed. I cry out to my husband who then covers me. So maybe the REM induced weakness is another issue. A lot of my labs are starting to show up as abnormal which is both good and bad. I am going to be seeing Dr Korsen in January. I am looking forward to hearing his opinion. I have seen Dr whitemen in the past. He has told several patients that he will be in practice again once he gets his Mass liscence. I hop this is true. The more good mito Drs practicing the better. Dawn Anich In , " Barbara Seaman " wrote: > > Dawn, I'm glad you are getting some clues. A couple of years ago we did > check aldosterone in a 24-hour urine collection and it was normal at that > time. I have documented low serum potassium off and on going back as far as > 1980, but now with 100 meq a day, my serum potassium usually stays up. As > far as I know, no one has checked renin. > > Another theory I have re the sleep-induced weakness relates to REM sleep. > There is a normal paralysis of major voluntary muscles that occurs during > dreaming in REM sleep. I have wondered if for some reason in my case, this > effect is not wearing off as quickly as usual. There is a lot more REM sleep > towards morning, which could explain why I have such pronounced symptoms in > the morning as compared to how I feel when getting up earlier in the night. > Naps where I can remember dreaming are usually associated with more > pronounced symptoms upon waking, especially with my arms. But again, the > sleep study did not pick up any unusual clues, though I only slept 2-3 > hours. Which makes me wonder, of course, if they got a good sample. But no > one felt the need to try again. > > Yes, I often have low blood pressure in the morning (feet turn purple when I > sit up) and so I drink lots of fluids if I'm feeling especially bad. This in > addition to the two cups of liquid I get through night feeding. > > Barbara > > > Re: weak feeling > > > > This is very interesting. I too have increased weakness in the AM. I > > really have a hard time with walking and sitting upright the first > > few hours of the day. I wonder if this has anything to do with > > orthostatic intolernce/dysautonomia???I just found out that I have > > low aldosterone and renin levels. They regulate sodium,potassium, > > fluid levels in the body and blood pressure. Because of this I have > > low blood volume. I wonder if after sleeping and lack of fluids our > > blood volume is lower making us weaker and or our levels of > > aldosterone and renin are lower and we have decreased potassium??? > > Just a thought. Dawn anich > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2005 Report Share Posted October 11, 2005 Cindy Your story made me smile. My younger son was very symptomatic when young, but we never put it all together as we can now do looking back. When he got too heavy for me to lift into the main part of the grocery cart, we would go as far as he could and then clear the bottom shelve with items so he could sit on the shelf and rest. I sure was glad when he and his brother were old enough to leave in the cafeteria while I shopped. Then it was me, who needed to rest. I didn't think I should try the shelf routine. laurie I know, even as a kid, though, I'd be say, shopping in the store with my mom, and all of a sudden my knees would kind of " give " and I'd feel weak and tired. My mom would turn around, and here I'd be sitting down, leaning up against one of the shelving displays or something. This didn't happen all the time, but looking back, I can see how the low energy has affected nearly all of my life... yeah, I hated gym class ( I " sucked " at it, I thought!), I could never run as fast as any one else, never could perform as well, etc. etc. Is it any wonder I took to book-reading and English as my favorite parts of the school day? LOL. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 Dawn, This happens to me also and is very frightening. I have been reluctant to mention it to my docs since it seemed so strange. dawnanich Danich1@...> wrote: ---Now that I think of it! When I wake up in the middle of the night with night sweats and chills, I can not move. I am so cold and want more covers but feel paralyzed. I cry out to my husband who then covers me. So maybe the REM induced weakness is another issue. A lot of my labs are starting to show up as abnormal which is both good and bad. I am going to be seeing Dr Korsen in January. I am looking forward to hearing his opinion. I have seen Dr whitemen in the past. He has told several patients that he will be in practice again once he gets his Mass liscence. I hop this is true. The more good mito Drs practicing the better. Dawn Anich In , " Barbara Seaman " wrote: > > Dawn, I'm glad you are getting some clues. A couple of years ago we did > check aldosterone in a 24-hour urine collection and it was normal at that > time. I have documented low serum potassium off and on going back as far as > 1980, but now with 100 meq a day, my serum potassium usually stays up. As > far as I know, no one has checked renin. > > Another theory I have re the sleep-induced weakness relates to REM sleep. > There is a normal paralysis of major voluntary muscles that occurs during > dreaming in REM sleep. I have wondered if for some reason in my case, this > effect is not wearing off as quickly as usual. There is a lot more REM sleep > towards morning, which could explain why I have such pronounced symptoms in > the morning as compared to how I feel when getting up earlier in the night. > Naps where I can remember dreaming are usually associated with more > pronounced symptoms upon waking, especially with my arms. But again, the > sleep study did not pick up any unusual clues, though I only slept 2-3 > hours. Which makes me wonder, of course, if they got a good sample. But no > one felt the need to try again. > > Yes, I often have low blood pressure in the morning (feet turn purple when I > sit up) and so I drink lots of fluids if I'm feeling especially bad. This in > addition to the two cups of liquid I get through night feeding. > > Barbara > > > Re: weak feeling > > > > This is very interesting. I too have increased weakness in the AM. I > > really have a hard time with walking and sitting upright the first > > few hours of the day. I wonder if this has anything to do with > > orthostatic intolernce/dysautonomia???I just found out that I have > > low aldosterone and renin levels. They regulate sodium,potassium, > > fluid levels in the body and blood pressure. Because of this I have > > low blood volume. I wonder if after sleeping and lack of fluids our > > blood volume is lower making us weaker and or our levels of > > aldosterone and renin are lower and we have decreased potassium??? > > Just a thought. Dawn anich > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 I also have the same symptoms night sweats and chills. Then the other extreme is part of my body will be fine and rest of my body will be ice cold to the touch. Ann > > > > Dawn, I'm glad you are getting some clues. A couple of years ago > we did > > check aldosterone in a 24-hour urine collection and it was normal > at that > > time. I have documented low serum potassium off and on going back > as far as > > 1980, but now with 100 meq a day, my serum potassium usually stays > up. As > > far as I know, no one has checked renin. > > > > Another theory I have re the sleep-induced weakness relates to REM > sleep. > > There is a normal paralysis of major voluntary muscles that occurs > during > > dreaming in REM sleep. I have wondered if for some reason in my > case, this > > effect is not wearing off as quickly as usual. There is a lot more > REM sleep > > towards morning, which could explain why I have such pronounced > symptoms in > > the morning as compared to how I feel when getting up earlier in > the night. > > Naps where I can remember dreaming are usually associated with more > > pronounced symptoms upon waking, especially with my arms. But > again, the > > sleep study did not pick up any unusual clues, though I only slept > 2-3 > > hours. Which makes me wonder, of course, if they got a good > sample. But no > > one felt the need to try again. > > > > Yes, I often have low blood pressure in the morning (feet turn > purple when I > > sit up) and so I drink lots of fluids if I'm feeling especially > bad. This in > > addition to the two cups of liquid I get through night feeding. > > > > Barbara > > > > > Re: weak feeling > > > > > > This is very interesting. I too have increased weakness in the > AM. I > > > really have a hard time with walking and sitting upright the > first > > > few hours of the day. I wonder if this has anything to do with > > > orthostatic intolernce/dysautonomia???I just found out that I > have > > > low aldosterone and renin levels. They regulate sodium,potassium, > > > fluid levels in the body and blood pressure. Because of this I > have > > > low blood volume. I wonder if after sleeping and lack of fluids > our > > > blood volume is lower making us weaker and or our levels of > > > aldosterone and renin are lower and we have decreased > potassium??? > > > Just a thought. Dawn anich > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 And, back a few years ago, they didn't have the motorized shopping carts, or the carts with the extra seats in them so mom can push her older kids (or two kids, or so that an adult can push another adult, etc), like they have in abundance today. At least they didn't in our small town . In fact, in my early years, I don't really recall having real designated handicapped parking spots either. Oh, they could have been there, but, what do I know, I was just a young'in . A lot of things have changed for the better, but we still have a long ways to go. Our recently built Super WalMart still has a bathroom door that doesn't have an automated door opener for the handicapped. I've seen people who have had strokes struggling to open that bathroom door (in the back bathroom... the front one is open, with a dividing wall, so no one can see in past the opening, but... if you're handicapped, and in the back of the store, and you have to go NOW!!!..... Not good!). Oh, back to the carts with the seat in them... my daughter always begs to get in that, and have me push her. I would love to do that, but it's just gotten too difficult, this past year. Well, I knew I wasn't able to do it, but I felt bad for so long, and then I found out about the probability of the Mito in our family. Well, that helped explain the " why's " of it, but it still makes me feel a little bit sad that I'm not able to do this. Well, not really, because I've always tried to teach her to leave those seats for people who really need to use them... families with smaller children, and the ones who need a seat, and have someone to push the carts for them. Well, gotta run, my housekeeper will be here any time. We have lovely apartment inspections coming up tomorrow, so have a day of cleaning ahead of us. (I live in subsidized housing, so HUD requires periodic inspections... Uggh, those are so fun!). Take care, Cin Re: weak feeling Cindy Your story made me smile. My younger son was very symptomatic when young, but we never put it all together as we can now do looking back. When he got too heavy for me to lift into the main part of the grocery cart, we would go as far as he could and then clear the bottom shelve with items so he could sit on the shelf and rest. I sure was glad when he and his brother were old enough to leave in the cafeteria while I shopped. Then it was me, who needed to rest. I didn't think I should try the shelf routine. laurie I know, even as a kid, though, I'd be say, shopping in the store with my mom, and all of a sudden my knees would kind of " give " and I'd feel weak and tired. My mom would turn around, and here I'd be sitting down, leaning up against one of the shelving displays or something. This didn't happen all the time, but looking back, I can see how the low energy has affected nearly all of my life... yeah, I hated gym class ( I " sucked " at it, I thought!), I could never run as fast as any one else, never could perform as well, etc. etc. Is it any wonder I took to book-reading and English as my favorite parts of the school day? LOL. Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2005 Report Share Posted October 12, 2005 My oldest son pushed the " fire truck " cart around with his brother and sister in it. I did try it a little bit, and that particular type was easy to move (my oldest is 8 BTW). In fact I wish the regular carts were as easy to move (they always seem to have a wheel or two off, makes it difficult to use them for support). I am very frustrated about heavy doors and lack of door openers as well, especially in clinics or hospitals. Again, my son helps if he is with me, but the poor thing is only just above 50 lbs., so he almost gets squashed by the door. I suppose I am spoiled because I am " okay " most of the time, but when I need to expend my energy, I get weak quickly. Take care, RH > > And, back a few years ago, they didn't have the motorized shopping carts, or the carts with the extra seats in them so mom can push her older kids (or two kids, or so that an adult can push another adult, etc), like they have in abundance today. At least they didn't in our small town . In fact, in my early years, I don't really recall having real designated handicapped parking spots either. Oh, they could have been there, but, what do I know, I was just a young'in . A lot of things have changed for the better, but we still have a long ways to go. Our recently built Super WalMart still has a bathroom door that doesn't have an automated door opener for the handicapped. I've seen people who have had strokes struggling to open that bathroom door (in the back bathroom... the front one is open, with a dividing wall, so no one can see in past the opening, but... if you're handicapped, and in the back of the store, and you have to go NOW!!!..... Not good!). > Oh, back to the carts with the seat in them... my daughter always begs to get in that, and have me push her. I would love to do that, but it's just gotten too difficult, this past year. Well, I knew I wasn't able to do it, but I felt bad for so long, and then I found out about the probability of the Mito in our family. Well, that helped explain the " why's " of it, but it still makes me feel a little bit sad that I'm not able to do this. Well, not really, because I've always tried to teach her to leave those seats for people who really need to use them... families with smaller children, and the ones who need a seat, and have someone to push the carts for them. > Well, gotta run, my housekeeper will be here any time. We have lovely apartment inspections coming up tomorrow, so have a day of cleaning ahead of us. (I live in subsidized housing, so HUD requires periodic inspections... Uggh, those are so fun!). > > Take care, > Cin > Re: weak feeling > > > Cindy > > Your story made me smile. My younger son was very symptomatic when > young, but we never put it all together as we can now do looking back. > When he got too heavy for me to lift into the main part of the grocery > cart, we would go as far as he could and then clear the bottom shelve > with items so he could sit on the shelf and rest. I sure was glad when > he and his brother were old enough to leave in the cafeteria while I > shopped. Then it was me, who needed to rest. I didn't think I should > try the shelf routine. > > laurie > > I know, even as a kid, though, I'd be say, shopping in the store > with my mom, and all of a sudden my knees would kind of " give " and I'd > feel weak and tired. My mom would turn around, and here I'd be > sitting down, leaning up against one of the shelving displays or > something. This didn't happen all the time, but looking back, I can > see how the low energy has affected nearly all of my life... yeah, I > hated gym class ( I " sucked " at it, I thought!), I could never run as > fast as any one else, never could perform as well, etc. etc. Is it > any wonder I took to book-reading and English as my favorite parts of > the school day? LOL. > > > Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. > > > > > Quote Link to comment Share on other sites More sharing options...
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