Terrified, pain in knees back other issues.

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Terrified, pain in knees back other issues.

Postby Arkansan on February 20th, 2016, 10:51 pm

So I'm back again. This time my knees keep having pain around the knee cap, and my left feels like it hangs up or pops sometimes. My upper back is hurting as well. The other day the muscles around the left knee twitched like crazy! Sometimes on that knee it almost feels as if something is sliding around.

Anyone else have these issues?

I have been working out hard for a couple of weeks now, hitting the heavy bag and doing boxing training. Could that be it?

Also another issue I'm worried about, my central sleep apnea. I saw a poster on here say a lot of PALS have sleep issues for years before their dx. Mine was diagnosed when I was maybe 15 or 16 tops, now I'm 26. Could it be an indicator of future trouble. Honestly seeing that post sparked a full blown panic attack.
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Re: Terrified, pain in knees back other issues.

Postby Strive on February 21st, 2016, 1:08 am

Hey Arkansan. Sorry to hear things have been rough. Keep in mind common things are common. You are a 26 year-old who has increased physical activity including boxing which involves lots pivoting , movement and stress on muscles/joints. You've probably just got some soft tissue strain, ie you pulled something, overworked yourself, maybe even did a ligament/meniscus something like that. It's normal to push yourself hard and be sore afterwards, maybe even injure yourself. I suspect the twitching is just your normal twitching exacerbated by being stressed out about it.

As for the sleep apnea, it's a pretty common thing. A quick google search says 1 in 5 Americans. Obviously the vast vast majority of sleep apnea just have sleep apnea, end of story. I wouldn't worry about that at all!
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Re: Terrified, pain in knees back other issues.

Postby Arkansan on February 21st, 2016, 2:14 am

Strive wrote:Hey Arkansan. Sorry to hear things have been rough. Keep in mind common things are common. You are a 26 year-old who has increased physical activity including boxing which involves lots pivoting , movement and stress on muscles/joints. You've probably just got some soft tissue strain, ie you pulled something, overworked yourself, maybe even did a ligament/meniscus something like that. It's normal to push yourself hard and be sore afterwards, maybe even injure yourself. I suspect the twitching is just your normal twitching exacerbated by being stressed out about it.

As for the sleep apnea, it's a pretty common thing. A quick google search says 1 in 5 Americans. Obviously the vast vast majority of sleep apnea just have sleep apnea, end of story. I wouldn't worry about that at all!


Hey, thanks for taking the time to reply! I really appreciate it.

Yeah the muscle stuff I can kinda talk myself out of. Because honestly I worked out hard for like 3 weeks and I am embarrassingly overweight. Now that I'm all worked up over it I'm having the same symptoms on both sides of shoulders and knees.

The sleep apnea really bothers me. Mine is mostly central sleep apnea which is caused by a signal issue in the brain vs obstructive sleep apnea which is caused by well something physically restricting breathing. It seems like many ALS sufferers or at least some of them had central sleep apnea prior to their other symptoms. It just scares me and central sleep apnea seems to be much more rare than regular sleep apnea, I've seen some estimates say that 20% of total sleep apnea cases are central.

Anyway I'm just all worked up again. Anyone else here have central sleep apnea?
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Re: Terrified, pain in knees back other issues.

Postby Arkansan on February 22nd, 2016, 8:22 pm

Well now things are kind worse and kinda better. Both knees are having the same issue now as are both shoulders. I'm back to having near constant twitches and my legs feel "off" or unsteady somehow. I'm still tripping out over having central sleep apnea, do any other users specifically have central sleep apnea?

Also I'm having a lot pain, like dull aches all over.
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Re: Terrified, pain in knees back other issues.

Postby Arkansan on February 23rd, 2016, 7:24 pm

Well today things were somewhat better. Not as much pain in general still some random body aches.

However today if I try to raise one foot and then squat on the opposite leg the left doesn't seem to want to go down as far and is painful behind the knee cap.

I have also noticed that my left in particular pops at the knee from time to time and if I practice one of the kicks I normally can do with ease there is a pop in the joint however I can manage to do it.

My left knee also buckled today when I was walking right as the weight was put down on it.

Why would all these problems with my knee caps set in so suddenly? I worked out fairly hard for a few weeks, hitting the bag for 20-30 minutes a day and some light jogging from time to time.

I'm really scared all this change is from weakness developing in the muscles. To top it all off my twitches seem to be back particularly in my legs and if I use them.
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Re: Terrified, pain in knees back other issues.

Postby Yuliasir on February 24th, 2016, 12:52 am

SUdden problems with knee cap mean one of several things^ 1) you got it damaged (maybe with the self-tests too); 2) you become hyperaware to your body condition. We have normally over 100 transient pains a day in our body, seems like you count every one.
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Re: Terrified, pain in knees back other issues.

Postby Yuliasir on February 24th, 2016, 1:08 am

As for CSA, it is a physiological one when we get asleep and breathing center switches to sleep mode (normally we breath with less frequency in a deep sleep phase so breathing stops for about a half a second maybe compared to normal pause, which is of course apnea, but then resumes with the less frequency and other parameters). This switching happens several times during the night as we come from REM phase to deep sleeping again.
Anxious people have excitation foci in the brain cortex which disrupt normal sleeping process, that is why we often complain for waking up with the feeling like we forgot how to breath. And that is why we often can not sleep well as prolonged breathless period happens in the phase when we are still not paralysed enough to lay quitely... and all process goes in nasty circles.

So, considering that yu have this diagnosis for 9 years without getting any need for ventialtion, your diagnosis might be related to chronic sleep disorder rather than to any MND.
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Re: Terrified, pain in knees back other issues.

Postby Arkansan on February 24th, 2016, 2:52 pm

Yuliasir wrote:SUdden problems with knee cap mean one of several things^ 1) you got it damaged (maybe with the self-tests too); 2) you become hyperaware to your body condition. We have normally over 100 transient pains a day in our body, seems like you count every one.


I suppose that I may have damaged them working out so hard while being overweight.

On the CSA thing, if I understand you correctly you are saying that it can actually be related to anxiety? Like anxious people are more likely to suffer from it than obstructive apnea like others?
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Re: Terrified, pain in knees back other issues.

Postby Yuliasir on February 25th, 2016, 2:14 am

I would say we are prone to suffer from CSA which may last a bit longer (possibly due to lower CO2 level) and occurs in still awaken phase compared to healthy people. As I said, we all have this breathing pause while getting to deep sleep phase (as well as physiological sleep dystonia or paralysis in deep sleep), but if your lobe cortex is still excited (which happens to anxious people), you would feel that breathing pause and get awaken breathless. It is the real feeling of "O my I forgot how to breath" - but this is a sign of anxious disorder rather than a sign of MND. In MND people often do not wake up (if they do not have associated mood disorder, which is not so often) and just fall into apnea state which is really dangerous and requires ventialtion aids and breathing monitoring.

Anyway, if it did not make any damage to you in 9 years, hardly possible it is an ealry sign of MND.
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Re: Terrified, pain in knees back other issues.

Postby Arkansan on February 25th, 2016, 2:43 pm

Yuliasir wrote:I would say we are prone to suffer from CSA which may last a bit longer (possibly due to lower CO2 level) and occurs in still awaken phase compared to healthy people. As I said, we all have this breathing pause while getting to deep sleep phase (as well as physiological sleep dystonia or paralysis in deep sleep), but if your lobe cortex is still excited (which happens to anxious people), you would feel that breathing pause and get awaken breathless. It is the real feeling of "O my I forgot how to breath" - but this is a sign of anxious disorder rather than a sign of MND. In MND people often do not wake up (if they do not have associated mood disorder, which is not so often) and just fall into apnea state which is really dangerous and requires ventialtion aids and breathing monitoring.

Anyway, if it did not make any damage to you in 9 years, hardly possible it is an ealry sign of MND.


Huh, well my apnea doesn't wake me up, and I'm supposed to be on a CPAP or Bi-PAP machine I can't remember which one do those count as ventilation aids? I've never woken up feeling breathless, just tired. I also have frequent bouts of sleep paralysis, but for some reason mostly if I try to nap during the day. I come awake enough to know I'm awake but can't move much, all I can do is speak and for some reason my breathing will be very rapid. Does this still sound anxiety or BFS related?
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Re: Terrified, pain in knees back other issues.

Postby Yuliasir on February 26th, 2016, 12:51 am

Yes. It is practically a sign of messed sleep phases. Tiredness is quite typical if CSA does not reach the level of waking up. Have you ever asked for the treatment of sleep disorder? There is not much progress in that part of medicine however up to date as fat as I know, but some drugs still are avaliable, and new promising ones are clinically tested right now.
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Re: Terrified, pain in knees back other issues.

Postby Arkansan on February 26th, 2016, 12:55 pm

Yuliasir wrote:Yes. It is practically a sign of messed sleep phases. Tiredness is quite typical if CSA does not reach the level of waking up. Have you ever asked for the treatment of sleep disorder? There is not much progress in that part of medicine however up to date as fat as I know, but some drugs still are avaliable, and new promising ones are clinically tested right now.


So in your opinion this still sounds more like CSA experienced in anxiety rather than how it is experienced in ALS? So ALS patients require stronger ventilation with theirs than a CPAP provides?

I did take a pill for the apnea years ago but it made me quite ill. I tried CPAP but it wasn't calibrated properly and I couldn't sleep with it, I suppose I need to get on having the machine calibrated.
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Re: Terrified, pain in knees back other issues.

Postby Yuliasir on February 26th, 2016, 1:57 pm

yes, for me it sounds quite like anxiety related.

CPAP is just a continous positive pressure in the airways, and it is comon way for extra oxygenation for people who could not get enough O2 either due to CSA or due to OSA. SO CPAP is nothing special and many people use it.

People in ALS practically need constant ventilation, as far as I understand, and usually on the late stages when diaphragm is paralysed (not due to CSA).
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Re: Terrified, pain in knees back other issues.

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