For New People: Muscle Fatigue vs Weakness

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notme

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Hello

This post is for those that are concerned they have ALS.

More and more new folks here are asking questions about weakness. Here is a very simple explanation in layman terms.

Perceived weakness is a 'feeling'. It's not an actuality. Clinical weakness will show up on a clinical exam--often weakness you have not yourself noticed yet.

Perceived Weakness

You feel shaky. Your arms get tired when you dry your hair, hold your arms over your head, or your hands feel weaker when you try to grip something.

Legs feel weak. You think you are dragging your foot. Your legs shake. You can't walk as much as you used to. You can't run as much as you used to. Walking up the stairs exhausts you.

The above are muscle fatigue. Not weakness. When your arms or legs get tired with exertion, it's muscle fatigue--totally different from muscle weakness.

Your tongue feels funny. You think your words are slurring, but others haven't noticed it yet. You choke once in a while on a piece of food. Your throat clicks when you eat. You can hear it clicking

True Weakness

You don't feel shaky--you are shaky. You can't lift your arms to dry your hair. It's impossible to lift one or the other. This shakiness is from the weakness--not to be confused with a tremor.

Your hands are simply unable to grip something like a door handle. You don't have the ability to lift a jug of milk from the fridge. Your fingers absolutely will not push the buttons on a microwave. (This can begin with just one finger)

With our legs--you lift your foot and the toes literally drop down. You can not hold the foot level. You can not walk on your heels.

In Bulbar onset, the voice will gradually get thick and you will slur. Other people will notice it. You are choking quite often on liquids at first. Not just once--but most of the time.

Sensory Issues

You have tingling: Good news--ALS does not cause tingling. Tingling is an issue within sensory nerves. ALS does not affect sensory nerves.

You have pins and needles: Again, good news for you. ALS does not cause this sensory issue either--though many things do, ALS isn't one of them.

Your leg/arm is numb: Again, good news. This is also a sensory issue. ALS doesn't affect sensory nerves in any way.

The folks here with ALS or other MND issues have gone to the doctor when one or more of the above TRUE WEAKNESS STRIKES. For most, it's a loss of ability in a hand, foot, or in their speech areas. Motor Neuron Diseases like ALS almost always start Distally in one limb at a time. While there are conditions that have different presentations, the forum here is only able to answer questions about ALS.

Please--before you hit post--read the post by Sadiemae regarding twitching and BFS, and read all the Sticky Posts. If your answer is not there, ask away. Don't be amazed when we say "Have you seen your doctor yet?"

If the answer is no--you can be sure that will be our response 99% of the time. We are not doctors. We are not ALS specialists. We are folks living with ALS, caring for those with ALS, or we've been here so long for other reasons, we're part of the family here. We do our best to be supportive, but please, state your concerns clearly, tell us what tests you've had and the results. Keep your questions to one post so we don't have to look for your concerns.

Remember, many here are answering with one finger, or a toe mouse, or head gear with an eye-tracking program. Most of us can't type fast, and we go to great effort to help. Be considerate of those that answer you.
 
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Grateful

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I'm bumping because it's really useful information; please read it because it can save a great deal of needless anxiety!
 

vickim

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What a great post. I wish everyone new would read it. How do you bump a post like Grateful did?
 
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Barbie

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Patty this is awesome post! I hope manyof the folks coming here read this and really really think about what you said. ALL SO TRUE!
 

notme

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Vicki, simply posting bumps the thread to the top page again :)
 

vickim

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This is such a great post I think it should be a sticky!
 

ysabel

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Wow i didnt know what bulbar was but over the past 6 months or so my voice has changed starting with a tremor in my voice and word sluring. I have had people tell me this including docs.
The doc and nurses hold my hands to help me get up and down the rv to the mobile medic because i dont walk well at all. And my right arm especialy is weaker than my left. Holding this cell is hard.
I cant walk on my heels or tippy toes.
Im getting worse. They are sending me to the neurologist at the als clinic at ucsd to run test,
I did have tingling but that was accounted for due to the antibiotic doxycycline which also caused sun sensetivity.
But i know ms can mimic als so no jumping to conclusions here.
But still frusurated that im losing my abilities more and more.
When a man about in his mid 80s passes me with his walker i think wow i am slow.
Sometimes im on the phone with a family member and they notice my labored breathing and think i am sighing at something they said.
But im waiting as patiently as possible on my diagnosis.

Also update too today im 46 and my youngest sister rented me a nice room near where i get my care here in downtown san diego just till my social security disability comes in.
 

Howestrin1984

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Very interesting post. My wife would often experience muscle twitching and shakiness, she has nocturnal epilepsy. However, there are instances when she is awake that she find it difficult to even hold a pen and write her name.
 

JamieL

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Great post! Thanks for taking the time to type that all out. Not sure how you're doing personally at this point in your journey, but I know that if nothing else, this must take quite a bit of your energy. I for one am grateful and amazed by each and every PALS (and CALS) on this forum!
 

Dpm00

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Dear community

Thank you for reading my post. I write you today in hopes of getting a clearer understanding of my symptoms and ALS. I understand you guys are not Dr's, however as I read through the threads it seems individuals living with ALS seem to have a greater understanding than professionals, at times. After all, it is you who feel the weight of this terrible disease. A little about myself: I'm a 36 yr old male, I'm active in the gym (lifting 5 days weekly)and play hockey a few times a week. My muscles are often sore, at times feel as though they are about to cramp, but dont and yes, I twitch. A lot. I've never given it much thought until I realized how often it occurred. As I sit now, I can feel all types, the jerky type, bubbling one ( kinda feels like a fart under the skin) however most of the time they pop. Today they seem more concentrated on left calve and around that area, such as just above the Achilles' tendon, although I also feel ones popping off in my right shoulder, thigh, and calve every so often. most of the time, they're spread out. Naturally I looked up my twitching symptoms in google and now of course regret it! I've read up on BFS, and sounds as though my symptoms point in that direction, however the ALS possibility continues to loom. This week I started twitching on my tongue. That's a new one. I now feel like my mouth gets tired eating. I don't slur, but I'll find myself thinking I will and in mid sentence ill stumble or sound as though I slurred. Physically, I do feel as though I've lost a step in hockey, my hands feel a bit dumb, but I'm able to button my shirt, lift heavy objects, walk in my toes, jump, and walk on heels... Pretty much, done all the self hypochondriac tests one would administer on themselves when stressed about illness. Ive even had my others take these tests. Today, at hockey i asked my friend to stand on his tippy toes one foot at a time so that I could compare my own performance in balance. I never explained to him why, just told him I was messing with humans wanted to see if I could get him to do it.

I have a fair amount of muscle on me is it possible that the twitching is happening in smaller areas or muscles as I compensate with my other muscles around it? I've read clinical weakness comes before twitching, but I've also read individuals with ALS who experienced body wide twitching w/o really feel weak. At this point I do not know what to believe. I went to see an 80 yr old Italian dr earlier this week, I told him about my twitching and he proceeded to educate me on diabetes, high blood pressure and cholesterol, never really addressing my concern. When I reminded him why I was there and my fear of ALS, he said, "don't worry, you don't have it". He was a sweet man with kind bedside manner but I insisted on a simple reflex test. He hit me a few times with the hammer, commented my right leg was heavier than my left. This freaked me out, I asked him what did the reflex test show you, his answer, "nothing, you're fine". I said, you sure, are you just saying that? and in Italian he said, I'm not bullshitting you, go home and eat a plate of pasta. I really want to believe him, behind those kind old eyes I want to believe he was being truthful, and not thinking statistically, I'm too young, or I was just over anxious.

I have an apt scheduled for a neurologist this coming week. I've done so much research that I've exhausted my head in believing I have an illness, even against my better judgement. But with ever twitch there is a reminder of what I could have. I know it can't be lack of calcium, I eat tums like candy all day bc of my GERD ( can't have that plate of pasta sadly) which I take meds for, however its not a common side effect to twitch.

Like I've said, I've read my post by ALS fighters, friends, family, caretakers and people like me, alarmed, worried, and stressed. We've all asked the same questions, raised many of the same concerns, I've sworn I wouldn't need to reach out, here I am. Thank you for hearing me out, writing this has made me feel a little better. I'm not sure how you've perceived my tone, but I can say, I'm bruised terribly by fear and anxiety.

Sincerely,
Dpm
 

Dpm00

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Apologies about grammar, I'm writing from an iPhone that decided to create its own word as to what I intended to write.
 

vickim

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Hello Dpm

Go to your neuro appt. It will make you feel better. He/She will do am exam and ask questions. You will ask questions and I am sure the dr will tell you that all is well. BFS can be annoying but it can be lived with. If you can do all the things you say you do I would guess that there is no als. Everyone twitches and stumbles over words from time to time.

You could be lacking in your vitamin level because of your GERD. Have a few blood tests done. Stress and fear will cause the twitching to become worse so try to relax and stop testing yourself. Onlly a dr can do the right kind of testing and self testing will only cause more anxiety.

You seem to be a pretty smart guy and I am sure everything will turn out fine. Good luck with your dr appt. Peace.
 

Dpm00

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Vicki

Thank you for you comforting words. I've posted this on its own thread as well bc I'm unsure how forums work. Looks like i'm Not as smart as you suggested, ha. Again, thank you for your ears and kind reply. With my Gerd first experienced was with globus sensation. That is what really got me going. It went away, however back again, guess its my stress bring it on.
 

vickim

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It is amazing what stress and anxiety can do to one's body. Some people refuse to take it seriously and it can make you really sick. Jut see what the dr says and go from there.

It would be better if you used the thread you started. this thread is considered a sticky and most won't post on it unless it is relevent to the subject.
 
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