Muscle Burning - No Wasting

[tripete]

More newbie questions. I do not show any "visible" muscle wasting at this time, I do have definite weakness by my standard (not clinically) and it seems that any form of exertion with my hands, legs, or lungs causes the muscles to burn and ache.

Is it normal to have such burning and fatigue? It is almost debilitating, yet I do not see any signs of wasting.

My doctor said my ALS began in my lung muscles. I am some what terrified that my lungs will be the first to go. At the same time it feels like my hands (they are increasingly clumsy) and legs (the persistent burning and aching) are on the edge of forcing me to stop working.

This is all going to fast since my diagnosis and these questions just keep coming.

 

[Atsugi]

Couple things have me confused. First, you said your doctor told you your ALS began in your lung muscles. That's surprising to me. Maybe someone can explain that. The lungs normal breathing is a function of the autonomous nervous system, which is no affected by ALS. Only the motor neuron system is affected.

Perhaps he meant your diaphragm muscles. The deep breaths we take to clear our lungs are affected by ALS.

Second, you must know by now that burning and aching and fatigue are not pains of ALS. These are pains from overuse, and in ALS, muscles are limp and unusable.

 

[affected]

I'm not sure either but will have a go here.

I would think that Pete means the diaphragm and intercostal muscles.

I don't know about burning, but fatigue is very much a part of ALS. It's amazing how many muscles are actually quite small to start with. Individual muscles may be weakening as the nerve impulse is not reaching them correctly and they are dying and this causes the clumsiness and walking becoming difficult. Visible wastage can take some time after that depending on just which muscles are attacked first and how big they were.

I think the hand is a great example. So many little muscles in the hand, and so many for specialised purposes. Whilst Chris's hands still looked ok he was having problems with particular types of hand uses. Squeezing the finger and thumb movements were one of the first, but carrying things became harder too and I feel that was added to by unsteady walking. By the time visible muscle wastage was obvious in his hands he had a lot of trouble doing most fine motor tasks. But get something in his hand like a tractor wheel, a brush cutter, and he could go for it as he didn't need those little fine motor muscles, just had to hold on and move.

He never mentioned burning, but he did fatigue.

I don't know if you are trying to do too much and the burning is a result of you over-fatiguing the muscles. As the muscle wastage became severe but Chris could still move his arms about he would often reach forward just a few mm too far and get terrible cramps in his arms. I knew this was because a wasted muscle was stretched too far. So I don't know if the burning is because you are trying to over-force wasted muscles to work. The action of working muscles right adjacent to wasted ones may make them move and work to some degree?

Just a thought

 

[tripete]

Yes it was the diaphragm muscles that he referred to that causes my breathing problems. The burning I am referring to is probably fatigue as it reminds me of how I felt the day after running my first marathon.

I had gone through MANY different pulmonary test prior to the ALS diagnosis and was always told my lungs where good (above average). As usual when Emory and the University of Fl did my pulmonary breathing test sitting up I had very good numbers. Then Emory had me lie down and my numbers dropped well below average. He explained that it was because I did not have gravity helping me to expel my breaths and that this was due to muscle weakness.

So i guess it is normal to have the extreme fatigue (what I am calling burning) from everyday activities without visible signs of muscle wasting?

 

[autumnrain]

Lack of muscle wasting and clinical weakness is a great sign! Two major components of ALS - clinical weakness and muscle wasting! God bless you and hope you continue with the same trend!I have similar symptoms but I don't have any muscle burning!I do have muscle fatigue.

 

[slopokahontas]

I describe my pain in my legs as burning as well! Almost as if I did a work out to the extreme where your muscles are hot. It is worse for me when it's cold. My legs feel better with heat on the ironically since they feel on fire, but the heat really helps!

 

[affected]

Tripete you need to consume HEAPS of calories every day and you should take them in regularly.

 

[Candle2014]

My mother reported a burning sensation from before diagnosis along with cramps and twitching so I would say that it most definitely can be a feature of ALS. My mother experienced the burning sensation and was in pain throughout, which is also not supposed to be a feature. I think the fact that there is such a variation in people's experiences is what makes it so difficult to diagnose.

 

[gooseberry]

Tripete my husband presented with a paralyzed left diaphragm and atrophy in his chest and shoulders. He had shortness of breath also. He never described a burning sensation he has always said his limbs feel heavy like there are weights attached to them.

However, als is a.different ride for everyone.

 

[MaxEidswick]

>My doctor said my ALS began in my lung muscles.

have you gotten a 2nd opinion?

if not, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!