Does ALS cause pain?

[JPatricia]

I know most people know the answer to this but my boyfriend of 6 years was diagnosed a few months ago and i am still trying to figure all of this out. Its a lot to learn and google isnt always the best source.

My boyfreind's hands shake a lot and when he holds them out his fingers like constantly move i guess is the best way to explain it.

He says it doesnt hurt but I'm just so scared that he is in pain or he will be in pain soon.

I just want to know whats really going on with him and what to expect.

 

[carex]

Patricia,
I've been dx'd for nearly a year. I'm Bulbar, so I haven't had much experience with limb problem, as yet. However, I have had some shaking episodes (hands and arms), but I did not experience any pain. A fair share of Bulbar related discomfort, but no pain per se. There are others here that could elaborate in greater detail, but I don't believe your BF is having any real pain at this stage.

 

[JPatricia]

Ok thank you. The doctors said his is bulbar onset as well started with togue fascinations and speech change.

That and his hands shaking are the 2 big things that we have seen change so far over the past 5 months or so.

 

[affected]

If he says there is no pain, then there probably is not.

Pain with ALS normally occurs when there is a lot of spasticity joined with a lot of muscle wastage around joints. This causes the joints to freeze up and becomes very painful.

Also when there is a lot of muscle wastage most PALS need hospital beds and alternating air mattresses or other like ROHO overlays to allow them to sleep without pain due to the pressure on joints from being so wasted.

I hope that helps.

 

[tripete]

This is fro a post I wrote earlier this month;

The experts and the different websites that we read will all tell us that the malfunctioning motor neurons and subsequent muscle wasting is not painful. And while technically this is true it is also misleading. As in my experience ALS is very painful.

Physically -

We go through excruciating muscle cramps in every imaginable part of the body. This morning I was awoken by my left forearm cramping so bad that it caused my fingers to curl and lock. While this is not the motor neurons dying or the muscles wasting away, it is caused by ALS. What little muscles I have left in my arm have to do extra work to just function during the day. That, with the work that the fasciculations constantly put on them, cause them to fatigue and cramp. The worst for me is when my neck and jaw cramp and lock up.

We go through extreme headaches. These headaches are most likely caused by CO2 building up in our blood as we sleep. This is caused by our breathing muscles not properly expelling carbon dioxide. Again it is not the motor neurons acting out or the muscles dying, but it is a direct result of these things happening that causes our diaphragm to no longer function, causing us to not properly remove the CO2 from our body, leading to incredible head aches.

We go through joint and complimentary muscle pain. As certain muscles die, it puts additional strain on our joints and other muscles. Last week the muscle on the top of my left foot was in extreme pain. This was caused by the other muscles around my foot weakening and being dead, putting more strain on the small muscle at the top of my foot. A muscle not meant to do the work that it now has to do. Again this is not pain from motor neurons dying, or muscles dying, but it is caused by those things happening leaving our bodies in a weakened state.

We go through coughing and joking fits. I do not know why our bodies secrete so much phlegm but they do. It is in some way a direct effect of this monster. It is painful in the cramps, the headaches, and the soar throats that it causes. Motor neuron or muscles dying may or may not be the cause but either way it is painful.

Mentally -

I cannot even begin to explore this. The anguish our minds go through and that of our loved ones is more sever than any pain that can be imagined. We waste away a little more each day and can do nothing to slow it or stop it. It is truly out of our control.

Conclusion -

There are of course Medications, the Bipap, Venting, Feeding Tubes and other things that can help manage all these pains. These are all viable options and good for some. For some of us though, we choose to live with the pain. For me the mental clarity is worth the pain. I also choose to "fight" this disease by letting it take its course. I will, by Gods Grace and Mercy, try to serve my family with any form of energy that I can muster. I will not let ALS take away my love for them by making me mean and bitter. The pain will not negatively effect who I am. I cannot stop ALS, but I can define who I am and what my actions will be. It is all that I have.

 

[KimT]

I've had pain since the beginning. Mainly cramps and sciatica from sitting too much and wasted muscles in my glutes.

Overuse of muscles also causes me a lot of pain as does poor posture and overdoing it.

The bottoms of my feet hurt. They lost muscle and fat. The palms of my hands hurt but I keep stretching them so that might be part of it.

 

[Paul Wicks]

As others have stated, ALS can cause pain, and in fact it's a myth that persists even among professionals that it doesn't.

I wrote a commentary on this a few years ago but I'm afraid it's behind a paywall. Here's an open access review: Pain in Amyotrophic Lateral Sclerosis: A Neglected Aspect of Disease

Cheers

Paul

 

[Lkaibel]

Brian has had some pain from the start. Cramps, general soreness. My friend's husband 3 years in has next to no pain. I think there is much individual variance here. Now, his neck and back hurt even though his EMG and exam shows no weakness in those areas. Dr said that may or may not be ALS related at this early stage.

 

[Atsugi]

My PALS experience with pain was this:

The actual paralysis involved no sensory symptoms. The muscles simply got very weak and then quickly failed to work anymore. No feelings, no pain.

Once the muscles were unable make tiny adjustments, the pressure would be constant, and result in pain. For instance, after her foot muscles were paralyzed, simply having her weight standing on her feet while standing would eventually become painful on the bottoms of her feet. So she used the wheelchair and wore no shoes. We placed a whole lot of soft padding on the foot pads of the wheelchair.

Once the muscles no longer moved, the unmoving joints hurt. So we did Range of Motion movement "exercises" a couple times a day.

Once she was mostly immobile, the blood tended to pool in her legs. This swelling was painful. So at first we massaged her feet and legs. Then we used an automatic pneumatic "sequential compression sock" which was great.

Sitting in her wheelchair compressed the butt fat so that the bone squeezed the skin against the chair. This was the greatest pain. So we moved her often, hourly, from sofa to PWC, from PWC to bed, and so on.

 

[Nuts]

Patricia, my husband developed tremors in his hands in the year before his diagnosis. They have gotten worse as his arms weaken, but they don't cause pain.

As others have said, there is great secondary pain in ALS. It happens when muscles fail and limbs freeze up. Physical therapy and range of motion are very important for PALS.

Becky