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    Muscle Weakness When Waking Up

    Hi all,

    First time here. Hopefully this is appropriate in the MS forums. I don’t know what else to do. Thanks for your time reading this long post and any input is appreciated.

    SHORT VERSION:

    Only when I sleep, again, I say, *only when I go to sleep*, and I wake up usually 3-4 hours later (but sometimes as early as 1.5 to 2 hours later), I feel muscle weakness below my neck. When I say below my neck, I mean my arms, hands, stomach muscles, leg muscles. My feet, jaws, and neck muscles are not affected. It feels like I’ve been exercising for a million years, and I’m feeling lactic acid or something. That’s the best way I can describe it. It can be so incapacitating that I can’t get out of bed without help.

    HOWEVER, after 3-4 hours, it goes away on its own, magically, leaving absolutely no trace whatsoever.

    Does anyone know what this is?


    LONG VERSION:

    BACKGROUND AND FREQUENCY: I am a male, in my mid-30s. For the most part, I am healthy, with no major diseases. I do have seasonal allergies to tree pollen (Alder). I am probably 25-30 pounds over the weight I'd like, but I'm not in any physical problems (i.e. huffing and puffing walking uphill). I go hiking all the time. For the past year+ or two, the symptoms first started occurring every 4-5 months. Recently, it seems to be happening every 2-3 months. On days that I go to work, I sleep about 5.5 to 6 hours (I do 4 days a week -10 hour shift). I work sitting in front of the computer daily. On days I don't go to work, I can sleep anywhere between 8-10 hours. Having said that, it appears to revolve around sleeping. My family has no history of muscle issues or narcolepsy. I have no major diseases and do not regularly take medication, except for seasonal allergy medication (around this time).


    SYMPTOMS: When I wake up in the morning (and it can be 1-2 hours before I normally wake up, or around the time I usually wake up), my legs, arms and stomach muscles become very weak. If while sleeping, if I attempt to raise my arm straight up, I feel as if my muscles and tendons are very weak and painful, especially if I extend and retract my arm. I can feel my shoulder muscles being very sore too. If I lift my leg (as in sitting down and lifting my legs to put socks on), the muscle pain on my front upper side of that leg is so acute that I can't. I have to lift my leg up with one hand and cross it over my other leg in order to even put socks on. If I try to squeeze my fingers, my finger muscles feel like they are at maybe 20-30% capacity only. When I am in bed, turning/tossing around, such as turning from facing the ceiling to sideways, is extremely painful on my stomach muscles. It feels like I did 10,000 sit-ups the day before and today I'm paying for it. In fact, it takes half dozen tries just to do something that simple!!!

    For example, I might wake up maybe 1-2 hours before I would normally wake up, and notice these symptoms. I then realize I need to go release myself (urinate) but it's so hard and painful to move; I'd struggle to even get to the side of the bed. When I do get to the side of the bed, I have to pretty much mimic movements like a toddler where I face down on the bed, stick my legs out and then let my legs drop off the side of the bed. When my feet hit the ground, I rest for maybe 30 seconds and then, as if trying to carry 100 pounds, force myself up very hard to even stand up. If I attempt to get up from bed unto my feet, I feel weakness in my legs. I can walk around, but I know something's different. Weird thing is once I do stand up, I can move around. But, just the act of trying to get up is so hard. When I sit down, if I lift my legs up (like kicking the air), it's very painful on the muscles on the front of my legs. It seems like "contracting" muscles are affected. The best way I can describe it is it feels like I've been exercising hardcore for many days straight. My muscles feel that weak and that painful! One morning, I had to wake up my wife, and asked her to help me sit up on the bed, so I could get up and go to work.

    Here's the kicker: if I do NOTHING and go back to bed, or simply force myself to go to work, the symptoms gradually go away. After 3-5 hours, there's absolutely no trace that I just had those symptoms. It's like nothing ever happened! I can run, jump, do WHATEVER and it's like someone just turns the switch on and off. Also, when the symptoms are full blown, my neck muscles are fine. I can move my head up, down, left, right, and I feel no pain. I am able talk fine, chew and can swallow fine. No drooping faces or anything.


    CAUSES: I've noticed these symptoms occur without any triggers I am aware of. For example, one time it occurred the morning after I was exercising. But most of the times though, I haven't done anything, and I mean ANYTHING strenuous the day/night before!

    ***The only thing I've been able to link my episodes to is sleep.***

    Usually it happens 3-4 hours into my sleep, right as I am about to wake up. One evening last week, I fell asleep early, and slept for maybe 1.5 to 2 hours. When I woke up from that nap, I noticed mild symptoms. That is the first time I've experienced it in the evenings. It's always, always, always been in the mornings. I do not recall having any dreams that were disturbing either. I don’t sleep walk (my wife can attest to that). I’m tempted to just record myself sleeping or something on video.

    I posted online at (site removed), and only 1 doctor responded, thinking I got MS. I posted on Yahoo Answers, but no one knows. I went to see my doctor, but he didn’t know either. He doesn’t think it is MS or fibromyalgia. In fact, I saw my family doctor AND one of his associates and they just looked at me dumbfounded.

    Does anyone know what this is? Could I just be so tense at night sometimes that it triggers my body to do this? Is there some waste byproduct that my kidney isn't filtering out (somehow only at night) that's causing my muscles to be weak? Please provide me links with evidence on these types of issues if someone comes across them. I understand someone will always be first at something and it is possible that I am the first person to experience these symptoms. I can’t find anyone describing these same symptoms anywhere.

    Thanks!

    #2
    That's a pretty strange one, but the consistent sleep connection and "only below the neck" parts make me wonder about your spine. Is your head properly supported when you sleep?

    In my opinion your best move would be to see a physiatrist. They are all about musculoskeletal/nerve interaction (and fixing it without surgery when possible). Personally, I see my physiatrist a lot more than my neuro, and the physiatrist is the one I'd see first for anything that even *might* be related to my spine (he's also the guy who first sent me to a neuro & my eventual MS dx)...

    Here's more on physiatrists:
    http://www.aapmr.org/patients/aboutp...ysiatrist.aspx
    1st sx 11/26/09; Copaxone from 12/1/11 to 7/13/18
    NOT ALL SX ARE MS!

    Comment


      #3
      Hi kaswyn,

      What you are experiencing sounds quite strange.

      You may want to ask your Primary Care Physician for a sleep study to determine if you have some type of sleep disorder.

      Information about sleep disorders:
      http://www.sleepfoundation.org/articles/sleep-disorders
      Diagnosed 1984
      “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

      Comment


        #4
        Overheating

        Hi,

        For a period of time, I would wake up with debilitating double blindness. It would go away after an hour or so. My doc and I realized that I was overheated at night and that was contributing to the increase in the symptom.

        Comment


          #5
          What your describing doesn't sound like MS! I think the other posters are on the right track. It sounds like maybe you have some kind of mechanical problem with your neck that shows up when your lying down for hours or sleeping. An MRI can really help in looking for a problem. Or you have some kind of problem related to sleep. In that case a sleep study can help in looking for a problem there. Maybe people in a sleep forum can give you more information?

          It sounds like you really have to start working with your doctors and getting the right tests done. I think that people online can give you good ideas of what you probably DON'T have but only your doctors can do the right testing and tell you what you DO have. I think you can take MS off your list until you've looked at other possibilities first.

          And I think that doctors who answer questions online must do that because they don't have enough real patients and might not even be qualified to answer anything but the most basic questions. Remember that not everybody who graduates from medical school passes their licensing exams or is actually qualified to practice medicine so they have to make money somehow. Maybe that's why an online "doctor" told you you could have MS when it doesn't even sound like MS?

          Your asking some good questions but some of the stuff is so basic that your doctors should already have tested you for it. A sleep study for a guy with sleep related problems sounds like a no-brainer. A neck MRI to look for mechanical problems and blood tests in the morning sound like no-brainers. If they haven't tested you then maybe its time to move on and find some doctors with more experience? Good luck! I hope you find some answers soon.

          Comment


            #6
            Thank you everyone for your insights. It makes sense now that I think about it. I'll look into something like a pinched nerve or something during my sleep, and keep a good awareness of my sleeping positions. I have a memory foam pillow that I've had for 4 years or so, so I don't think that's the issue as it's not worn out or anything.

            Comment


              #7
              Possible LEMS?

              It sounds like it could possibly be Lambert-Eaton Myasthenic Syndrome (LEMS).

              Having weakness that gets better with exercise is an indicator of LEMS, as is the fact that the weakness is below your neck. During sleep, your muscles have been relaxed for hours, so the weakness will be more pronounced upon waking.

              It's a rare disease, so that would explain why you are having trouble finding anyone else with similar symptoms.

              It can be diagnosed by a neurologist through nerve conduction testing and checking if you have anti-VGCC antibodies present in your blood.

              Comment


                #8
                Welcome to our forum! Glad you found us!

                Now you have received some good answers so far, but I had this curiousity about this same phenomena for myself. I would wake up and could barely move my arms and legs to get out of bed. After I ate and moved around the weak symptoms start to dissipate.

                So.. I thought maybe it was the mattress pillow top cover underneath me along with my comforter on me. I wondered if this caused a build up of heat which in the case of MS, weakens the muscles, which "could be" the reason it gets better once I am up and moving around.

                What do you sleep on and cover up with? Its just a thought..

                Let us know what you learn.. and take care of you!!

                Warmly, Jan
                I believe in miracles~!
                2004 Benign MS 2008 NOT MS
                Finally DX: RR MS 02.24.10

                Comment


                  #9
                  Did you ever find out what this was? My mother has almost identical symptoms ?

                  Did you ever find out what caused your symptoms as my mother has almost identical symptoms?



                  Originally posted by kaswyn View Post
                  Hi all,

                  First time here. Hopefully this is appropriate in the MS forums. I don’t know what else to do. Thanks for your time reading this long post and any input is appreciated.

                  SHORT VERSION:

                  Only when I sleep, again, I say, *only when I go to sleep*, and I wake up usually 3-4 hours later (but sometimes as early as 1.5 to 2 hours later), I feel muscle weakness below my neck. When I say below my neck, I mean my arms, hands, stomach muscles, leg muscles. My feet, jaws, and neck muscles are not affected. It feels like I’ve been exercising for a million years, and I’m feeling lactic acid or something. That’s the best way I can describe it. It can be so incapacitating that I can’t get out of bed without help.

                  HOWEVER, after 3-4 hours, it goes away on its own, magically, leaving absolutely no trace whatsoever.

                  Does anyone know what this is?


                  LONG VERSION:

                  BACKGROUND AND FREQUENCY: I am a male, in my mid-30s. For the most part, I am healthy, with no major diseases. I do have seasonal allergies to tree pollen (Alder). I am probably 25-30 pounds over the weight I'd like, but I'm not in any physical problems (i.e. huffing and puffing walking uphill). I go hiking all the time. For the past year+ or two, the symptoms first started occurring every 4-5 months. Recently, it seems to be happening every 2-3 months. On days that I go to work, I sleep about 5.5 to 6 hours (I do 4 days a week -10 hour shift). I work sitting in front of the computer daily. On days I don't go to work, I can sleep anywhere between 8-10 hours. Having said that, it appears to revolve around sleeping. My family has no history of muscle issues or narcolepsy. I have no major diseases and do not regularly take medication, except for seasonal allergy medication (around this time).


                  SYMPTOMS: When I wake up in the morning (and it can be 1-2 hours before I normally wake up, or around the time I usually wake up), my legs, arms and stomach muscles become very weak. If while sleeping, if I attempt to raise my arm straight up, I feel as if my muscles and tendons are very weak and painful, especially if I extend and retract my arm. I can feel my shoulder muscles being very sore too. If I lift my leg (as in sitting down and lifting my legs to put socks on), the muscle pain on my front upper side of that leg is so acute that I can't. I have to lift my leg up with one hand and cross it over my other leg in order to even put socks on. If I try to squeeze my fingers, my finger muscles feel like they are at maybe 20-30% capacity only. When I am in bed, turning/tossing around, such as turning from facing the ceiling to sideways, is extremely painful on my stomach muscles. It feels like I did 10,000 sit-ups the day before and today I'm paying for it. In fact, it takes half dozen tries just to do something that simple!!!

                  For example, I might wake up maybe 1-2 hours before I would normally wake up, and notice these symptoms. I then realize I need to go release myself (urinate) but it's so hard and painful to move; I'd struggle to even get to the side of the bed. When I do get to the side of the bed, I have to pretty much mimic movements like a toddler where I face down on the bed, stick my legs out and then let my legs drop off the side of the bed. When my feet hit the ground, I rest for maybe 30 seconds and then, as if trying to carry 100 pounds, force myself up very hard to even stand up. If I attempt to get up from bed unto my feet, I feel weakness in my legs. I can walk around, but I know something's different. Weird thing is once I do stand up, I can move around. But, just the act of trying to get up is so hard. When I sit down, if I lift my legs up (like kicking the air), it's very painful on the muscles on the front of my legs. It seems like "contracting" muscles are affected. The best way I can describe it is it feels like I've been exercising hardcore for many days straight. My muscles feel that weak and that painful! One morning, I had to wake up my wife, and asked her to help me sit up on the bed, so I could get up and go to work.

                  Here's the kicker: if I do NOTHING and go back to bed, or simply force myself to go to work, the symptoms gradually go away. After 3-5 hours, there's absolutely no trace that I just had those symptoms. It's like nothing ever happened! I can run, jump, do WHATEVER and it's like someone just turns the switch on and off. Also, when the symptoms are full blown, my neck muscles are fine. I can move my head up, down, left, right, and I feel no pain. I am able talk fine, chew and can swallow fine. No drooping faces or anything.


                  CAUSES: I've noticed these symptoms occur without any triggers I am aware of. For example, one time it occurred the morning after I was exercising. But most of the times though, I haven't done anything, and I mean ANYTHING strenuous the day/night before!

                  ***The only thing I've been able to link my episodes to is sleep.***

                  Usually it happens 3-4 hours into my sleep, right as I am about to wake up. One evening last week, I fell asleep early, and slept for maybe 1.5 to 2 hours. When I woke up from that nap, I noticed mild symptoms. That is the first time I've experienced it in the evenings. It's always, always, always been in the mornings. I do not recall having any dreams that were disturbing either. I don’t sleep walk (my wife can attest to that). I’m tempted to just record myself sleeping or something on video.

                  I posted online at (site removed), and only 1 doctor responded, thinking I got MS. I posted on Yahoo Answers, but no one knows. I went to see my doctor, but he didn’t know either. He doesn’t think it is MS or fibromyalgia. In fact, I saw my family doctor AND one of his associates and they just looked at me dumbfounded.

                  Does anyone know what this is? Could I just be so tense at night sometimes that it triggers my body to do this? Is there some waste byproduct that my kidney isn't filtering out (somehow only at night) that's causing my muscles to be weak? Please provide me links with evidence on these types of issues if someone comes across them. I understand someone will always be first at something and it is possible that I am the first person to experience these symptoms. I can’t find anyone describing these same symptoms anywhere.

                  Thanks!

                  Comment


                    #10
                    Originally posted by Travelmurph View Post
                    Did you ever find out what caused your symptoms as my mother has almost identical symptoms?
                    [COLOR=rgb(75,0,130)]First of all, I am sorry you are going through all this, enuff!
                    I too can relate but its better for me now. You may need to start getting potassium and magnesium supplements in you daily. And I have a theory that we are warmer due to being under covers/comforters or laying on memory foam mattresses.

                    [/COLOR]
                    [COLOR=rgb(75,0,130)]But there is something called Periodic paralysis. I have something screwed up when I sleep/nap. When you get into the REM cycle, I guess you paralyze. I wake up, but I cannot open my eyes or move my body for a while.

                    [/COLOR]
                    [COLOR=rgb(75,0,130)]Yet I am not your doctor, so you need to tell both your primary doc and your neuro. For me it lead to a diagnosis of a rare kidney disorder called Gitlemans. Yet Periodic paralysis can also come form MS. Keep that in mind.

                    Make sure your docs know about these "other" disorders. My primary listened to me and did a 24 hour urine test. That lead to MY diagnosis of Gitlemans. But like I said, it could be other things too. Once I started getting enough potassium and magnesium its lessened a lot!

                    Let us know what you learn and I hope you get the right doc with the right answer. Let them guess for awhile, but if you continue, keep advocating for yourself. k?

                    Sending you healing vibes, Jan[/COLOR]
                    I believe in miracles~!
                    2004 Benign MS 2008 NOT MS
                    Finally DX: RR MS 02.24.10

                    Comment


                      #11
                      Hi All,

                      I am experiencing the same thing, usually after waking up, I could not lift myself up, very weak legs and arms, and sometimes it's so worst I can fall off to the ground with a tap on the back. Stairs is a nightmare for me when my symptoms attacked, but some days i dont feel any weaknesses.

                      Tried going to an Ortho and the doctor made me do some lab tests, EMG and Potassium/Magnesium results are fine. My ortho got puzzled and said that I should consult a neurologist and that I may have some problems with my peripheral nerves.

                      And for Kaswyn, did you find out what it is?

                      Thanks in advance

                      I havent gone to any neurologist yet but plan to this coming weeks or so....but to anyone experience this symptoms, what was the root cause of this for you guys?

                      Comment


                        #12
                        Any news update on cause

                        Hi, I was curious to know if you ever got diagnosed with your symptoms? I am having the exact same happening to me exactly how you have explained it. I did have an MRI done and they did see activity in the brain that could be MS, but I have to follow up with doctor to see what I will have to do now.

                        Comment

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