PAIN and ALS?

[Northlord9]

Hi I'm brand spanking new here and I just wanted to know...

As ALS progresses and you start to have muscle/ nerve failure, is it painful as the muscles weakens? I mean when you try to move a dying muscle or limb does it cause pain? Does it feel like it is weak and the muscle is straining under the effort to move causing, cramps, sharp twinges, or dull burning pain and so on. Or is it just a case of one day you want it to move, but it just does nothing or moves sporadically and weakly with no pain involved, sort of like the feeling you get if you have had a nerve block for a surgery or something.

So basically is pain under effort to move the normal progression, followed by no pain and immobility? Or is it painful to the end? Or no pain at all? It's all very confusing to me. A lot of ALS web info says the progression is painless and some say it does causes pain. Or is it like everything else I've come to find out about ALS... There is no straight answers.

Thanks for any info you'll can give me!

 

[ShiftKicker]

Mod note- Moved thread

 

[GregK]

Atrophy doesn't imply pain. I feel absolutely no different than I ever have, stuff just doesn't move.

Pain comes in early stages from cramps, in late stages from weakened joints bending 'wrong'.

 

[Northlord9]

So muscle skeletal and neurological afflictions like joint hyperextension, sprains, cubital tunnel syndrome, carpal tunnel syndrome, and tennis/golfers elbow could all be secondary complications that can arise as ALS progresses in the early and late stages?

 

[ShiftKicker]

Are you under the care of a physician? Is this for you or a person you know? Are you just curious? Might be helpful to know the purpose in your questions. Your statement that something like tennis elbow being secondary symptoms as a result of ALS is kind of a jump. Equal to assuming a cough is lung cancer.

 

[Northlord9]

Oh I understand what you are saying... and I totally agree with you, just because someone might be having a flare-up of tennis elbow doesn't mean ALS. I just mean it as a secondary complication after diagnosis of ALS. I mentioned tennis /golfers elbow simply because it is a problem with inflammation of tendons and joints primarily do to over use or weakness. Much as I understand the tendons and muscles tend to weaken due to ALS as the muscle atrophies.

To answer your other question, my wife's uncle Bruce died from ALS when she was young, and here lately she has been a bit... Um I'll just call it "worried" about some symptoms she has exhibited. And that I've exhibited... And that the kids have exhibited... And so on... And so on... I'm just trying to get some knowledge here to try and help combat some of her anxiety. I suppose they may seem like silly questions to some of you, and I truly hope I'm not offending anyone buy asking them. I'm just wanting to learn from people with real life experience instead of from a book or web article.

 

[ShiftKicker]

I think it's important to have real, in person, medical attention when it comes to anxiety like that. When someone's concerns about health affects an entire family, an ALS forum is the last place to be. I am in no way dismissing symptoms as "anxiety", but a forum of strangers's advice will net zero benefit-proper medical attention is important.

 

[swalker]

I am sorry you find yourself in this position and especially sorry your wife lost her uncle to ALS.

As others have already written here, none of the questions you pose would cause me to remotely consider any form of motor neuron disease, including ALS.

What does come across is that your wife could be suffering from a from of medical anxiety. Medical anxiety is a real medical condition and it is treatable. But, it is not treatable with simple rational discussion about why ALS is not a likely diagnosis for her or anyone else in your family.

Providing you with details about ALS will not help either you or her in this situation. I encourage you to get her evaluated by a medical professional as soon as possible.

Steve

 

[Northlord9]

Well she is seeing a counselor, and she has seen a doctor about her anxiety. She (the counselor) was the one who suggested I arm myself with some knowledge on the topic/topics that stress her out, so I can better help calm my wife down when she starts panicking over this little thing or that. The counselor isn't available 24/7 so I've got to pick up the slack sometimes.

Thanks for your condolences, I never knew Bruce but from what everyone says about him he was a really funny, active, and a very charming fellow. He was my wife's favorite Uncle. I had seen some home movies of him and he did seem to be a cool guy. (thick Scottish accent) as the old saying goes "the flames that burn brightest, burn out the fastest."

Anyway I am here sort of like a reporter interviewing witnesses to a horrible crime. (in this case ALS) I know people here are not doctors and not everyone's experience is exactly the same , but who would know better about how the disease effects people then the people living with it. I'm just trying to fill in some blanks to some questions that I didn't really see a complete answer to.

As a wise man once said "you can get a real good look at a T-Bone steak by sticking your head up a bulls ass! But I'd rather take the butchers word on it."

 

[GregK]

So, you have no current need for information but you thought it just peachy to have quadriplegics answer your curiosity by having them waste precious time Using tedious eye-gaze to tap out answers.

Ain't you just a thoughtful type.

Forum rules prevent me from saying more.

I hope you're just damned happy with yourself.

 

[ShiftKicker]

Northlord- You came here to satisfy curiosity and use terminally ill people as a resource for a person who does not have ALS. It's not so simple as folks not having to answer if they don't want to. This forum is here for people with ALS and their caregivers. This is not the place to work out health anxiety- even by proxy.

Note- thread closed. ALS forums are not here for people to engage with members in order to satisfy curiosity or work through health anxiety.