17 replies to this topic

[angeline]

Hey I was wondering do the muscles of N patients feel weak throughout the day? If so, why? What can be done about it? Also, does the muscle weakness get worse with age?

[SoTiredOfBeingTired]

Hey I was wondering do the muscles of N patients feel weak throughout the day? If so, why? What can be done about it? Also, does the muscle weakness get worse with age?

I'm noticing the same thing. Some days worse than others. Especially in my legs but I find that there are some days I keep dropping things too.

[Linna]

I have a lot of muscle weakness.

[SoTiredOfBeingTired]

Can cataplexy develop later? I notice a tingling in my legs but when I'm crying but I've never lost control of my muscles. I'm noticing now, though some days are better than others, that I will lose my grip on something I'm holding or it takes much more effort to climb stairs ect. This has just started happening more and more and it's troubling because I'm an otherwise in-shape 34 year old mother of three who was always on the go.

I've noticed mine got worse after every one of my pregnancies but it could have something to do with age too.

[angeline]

Can cataplexy develop later? I notice a tingling in my legs but when I'm crying but I've never lost control of my muscles. I'm noticing now, though some days are better than others, that I will lose my grip on something I'm holding or it takes much more effort to climb stairs ect. This has just started happening more and more and it's troubling because I'm an otherwise in-shape 34 year old mother of three who was always on the go.

I've noticed mine got worse after every one of my pregnancies but it could have something to do with age too.

I think cataplexy can develop later or it can develop slowly in short episodes and disappear. I had strange episodes when I was 9, 19, and 27. My legs just collapsed. It was weird. I had no reason to fall. The episode when I was 27 was severe; I was weak all over, my chest was heavy, I felt like I was going to pass out, my limbs stopped working, my speech slurred like a drunk for at least 4hrs. The hospital checked me for heart attack, stroke, TIA, etc. My speech returned, my limbs started working, the whole thing disappeared again until I was 29 then it started happening all the time. My torso tingled a lot for 10 years, then my limbs started tingling, then my face...So I think C can lie dormant for years then come to life. Mine accelerated in my early 30's then accelerated again around 43yo.

I hope you can find something to get your symptoms manageable that doesn't cost too much. With 3 children, I know you are feeling a lot of emotions right now. I will pray for you....

[angeline]

I have a lot of muscle weakness.

Linna, how long have you had N? How long have you had muscle weakness? Do you feel it gets progressivedly worse? Or does the weakness come and go? Does hot weather make it worse? Does exercise in hot weather make it worse? What relieves it?

[wisher]

Yes, I get muscle weakness, often in my arms and legs (which are also the most affected by my cataplexy). I've had N symptoms for the past 15-ish year (at least) but only very recently diagnosed once my cataplexy got much worse. The muscle weakness has only been happening for the past 3-4 years, and it was one of the symptoms that started me on my long journey toward a narcolepsy diagnosis.

[Archer]

Muscle illnesses, such as muscular dystrophy and dermatomyositis, are typical causes of muscle weakness. Other typical causes include sensors conditions, such as Guillain-Barre syndrome, amyotrophic lateral sclerosis, stroke, and even a pinched nerve.

[kyethra]

Yes, I used to have many many muscle problems.  Before I was diagnosed with Narcolepsy, I was diagnosed with CSF/Fibromyalgia.  It developed along with the N around the time I turned 21 after a few months of some very odd medical issues.  I spent a year in twice weekly physical therapy just to get strong enough to start to be able to use the weight machines in a gym and get my muscles to working all properly again-- some of them weren't doing that after my medical problems.  I had a terrrible time building strength-- it would take months of physical therapy and work just to gain the smallest bit of muscle mass.  And I also had plenty of muscle spasms and I would need to take a couple different muscle relaxers to help with that.  Constant headaches from them too, etc.  After I started on the Xyrem, things immproved immensly.  Cymbalta, which I started prior to that helped too. I still have Fibromyalgia and it reminds me sometimes.  When I get sick and stuff it flares up.  My muscles aren't the same-- I am more prone to fatigue or cramping.  I recently started taking a fencing class again -- it has been a decade and was something I enjoyed before the N.  Those muscles don't respond the same way! It was a little easier and faster and stuff before. 

 

Do I have C?  I don't think so.  If I do it is very small and totally managed with my meds.  As my neurologist and I sometimes discuss that doesn't mean I won't develop it and I always remind him I don't want it. 

[Mmartens3]

I have muscle weakness. Not like cataplexy, just general muscle weakness. I can't lift things that most people can without fatiguing and hurting my back/neck. I have occipital neuralgia headaches that are caused by my lack of muscle strength in my neck. I cannot lift even the first weight on the weight machines. I can't even do the 2 lb bar bells for more than a couple of reps. Exercising daily helps my headaches. My neurologist says I do not have fibromyalgia or a muscular disorder. Has anybody's dr made a connection between this general muscle weakness and N?

[DeathRabbit]

Well I have had isseus with that myself. I think it does sort of take the umpf out of our motor neurons to get such crappy sleep. I know there are some days I get n the gym and can't do anything for crap. HAve you tried smelling salts? I haven't myself, but a lot of professional weight lifters will use them, because it wakes you up and gets your CNS really fired up. Also, what meds are you on? And have you had your test level checked. Mine is okay now, so I'm off the shots, but I had low testosterone due to my N. It's actually a common symptom of N, but I would guess due to the embarassing natrue of feeling less "macho", it's not bandied about as much. Also, test doesn't get checked in your standard blood work load out.

[Linna]

Linna, how long have you had N? How long have you had muscle weakness? Do you feel it gets progressivedly worse? Or does the weakness come and go? Does hot weather make it worse? Does exercise in hot weather make it worse? What relieves it?

 

I was Dx with N at age 35 and I am now 44.  I am sure I have had it since I was a teen.  My aunt has it, as does one of my sisters.  I would say the muscle weakness is progressively getting worse.

I have continues muscle weakness.   It occurs on most days, severe in the morning,  a little better in the afternoon. By evening I feel like I am going to pass out, just want to lay down.   Sometimes I feel like I am just dying.   It hurts, its depressing.  If I cannot combat it with movement, or caffeine, I give into a nap.  Sometimes I sleep 10 seconds and feel better.  Sometimes I sleep all through the evening until my alarm goes off for work the next day.

 

Exercise can sometimes help and sometimes it incapacitates me.  It depends on how long I wait.  For example, if I feel a episode coming on, if I try real hard to do something- sometimes the weakness will lessen for a short while (30 min) only to return to feelling weak again.

I guess the severity comes and goes. 

To relieve it I try one of the following depending on the severity:

 

Less Severe: I feel weak, my legs are HEAVY hurting and don’t want to move.

Move about, interact with family members or my dogs, walk, bicycle.

 

Mid Severe: I feel as if I am going to fall down, my legs are heavy, my arms are heavy, everything hurts, my eyelids are heavy.  I feel like I cant move.  I take my Bp and it is usually low 90/50.   So I try to drink tomato juice with lots of sodium to wake up…If I cant fight it,,,I get in bed and  try to watch tv,,,,usually fall asleep for about 20 min , when I awaken I am still tired but no muscle weakness.

 

Severe: I feel like I am dying.  Everything is heavy, It feels as if a big monster shoe is pressing me down into a whole, and my muscles are too weak to lift myself out.  I feel like my chest is heavy too.  Wonder if something id major wrong… BP 99/50.  .usually pass out.   L

 

I am trying a new vitamin that seems to give me a slight boost.

[Linna]

I have muscle weakness. Not like cataplexy, just general muscle weakness. I can't lift things that most people can without fatiguing and hurting my back/neck. I have occipital neuralgia headaches that are caused by my lack of muscle strength in my neck. I cannot lift even the first weight on the weight machines. I can't even do the 2 lb bar bells for more than a couple of reps. Exercising daily helps my headaches. My neurologist says I do not have fibromyalgia or a muscular disorder. Has anybody's dr made a connection between this general muscle weakness and N?

I have N and muscle weakness,  My sister has N and Fibromyalgia.

[Mmartens3]

I guess the feeling of muscle weakness goes along with the fatigue/sleepiness of N. But i just don't ever seem to have the strength enough for simple every day tasks. I have had a couple babies in the last 4 years so I had to carry them a lot. I tried baby wearing. It didnt work out. My back and neck couldn't handle it. Everyone said it would be easier than carrying the baby and you could have your hands free! Sounds great! Couldn't do it. Even carrying them in the carseat was too difficult. I had to have my 15 yr old daughter do it for me. I do carry my baby around now but I can't do it for long. the laundry basket full of clothes is difficult. I cant carry very many grocery bags in at once. And moving furniture - forget about it! Anytime I have to do anything that involves lifting, I ask my husband or my daughter to do it. My husband teases me about how weak I am and the fact that my daughter is stronger than me. The neurologist had me push on his hands with my fists to test my strength and didnt seem worried so I guess it's not as bad as I think. I guess it could be a lot worse.

[DeathRabbit]

It still might be worth a hormone panel. I know you're female, but you guys are supposed to have a some test as well, just not as much as us guys.

[Mmartens3]

DeathRabbit, I will look into it. Thanks. BTW, I am not on meds yet. Just sodas w/ caffienne to keep me alert. I have been prescribed strong pain meds for my headaches but I don't take them. I have been seeing the chiropractor and it has helped with headaches. Since I haven't been officially dx yet I am not on meds for N. I will have my sleep study on April 27/28.

[2Tired4This]

It seems to me that Fibromyalgia can be cross diagnosed with Narcolepsy a lot. My grandfather had Fibromyalgia, and my mother suffers from mild Fibromyalgia with extreme bouts of deep pain for what she feels are "seasonal" reasons. Different types of weather (barometric pressure I am guessing) are known to make people with Fibro more sensitive. 

 

I myself was also Diagnosed with Fibromyalgia long before I the N diagnosis. I actually went to this Fibromyalgia doctor with the EDS symptoms as a concern, but they were considered to be part of the Fibro symptoms. I don't what know triggers it myself but I often experience random shooting pains in my arms, legs, and shoulders. Sometimes they can be dull deep aches too that last for hours. I have a really low tolerance for pain, IDK if that's just because i'm a wimp or whatever. I do have lots of verrryyy tender spots around my shoulders and hips though. 

 

Most often I get a very strange shooting pain in the place where your leg connects to your hip. The joint I guess.

 

 

It has never been bad enough for me to honestly categorize it as Fibromyalgia pain. Even though i had an official Diagnosis 5 years back, I choose to believe that it was a misdiagnosis due to early N symptoms, which fit my problems to a T. 

 

 

 

Actually if what I know about Arthritis is correct, then I guess I could relate to that. I have lots of join pain, especially in the fingers after a nominal amount of work that requires finger dexterity. Other than typing. 

[h.wynn]

This has got me thinking. I find most things painful, but never thought of it was musel weekness. I was very strong when I was younger. For a girl that is. Not so much any more. I just figured everything is hard to do because I'm tired. That the pain was in my head cuz I was just too tired to do whatever. Could it be that my muscles are week? Is that why I am in pain? I know that my hands are week. The mornings are the worst time. I cant hold a pen or open a jar or anything that twists. It gets better threw the day, but they are always week. My hands dont hert and the rest of me does. My dr. just retired he had me taking 800mg ibprofen for pain. This could be a good enough reason to find a new dr. That and I need a new script for the ibprofen.