ALS and Pain

[Dagmar]

John, the one thing I’ve learned from reading our forum member’s comments – – is that we all have slightly different variations of similar symptoms. That said, my own experience was to have achy pain in my shin and thigh of the leg that had foot drop. This was during my first year. But the combination of medication, regular range-of-motion movements, and changing my over-use of those muscles from walking/swimming/etc., helped the pain subside. Can’t remember having any similar pain in any muscle group ever since (12 yrs later).

I’m sure you’ll hear from our other members who will share their experiences with pain.

[Jean-Pierre Le Rouzic]

> I have been told multiple times by a Neuromuscular specialist that MND are painless.

The two people in my family who had ALS did not complain of pain, but maybe that still had pain.

I think neurologists tell that ALS is painless because the current definition of MND is (obviously) about dysfunctional motor neurons.

My personal opinion is this is just a century old myth: TDP-43 mislocated, misfolded proteins which are present in 95% of sporadic ALS are found in many places in the body.

Plus MRI shows that anomalies in many parts of the brain and spine, not simply in the motor area as the definition of ALS, or the very name of MND imply.

Last: There are many studies discussing ALS starting at the interface between the nerve and the muscle it activates (the neuromuscular junction) and then spreading. This matches well the experience of many patients who had first a “small problem” with one dropping foot or a thumb loosing strength and ulnar muscle mass.

If this is true, most ALS cases are not motor neuron diseases but something like a distal axonopathy. Search for “ALS dying back hypothesis”

[John M C]

Thank you both for the response and info. Dagmar, I think overuse is directly related to my level of pain. Jean -Pierre, I will do some research into that area. Thanks again for the information!

[Bill Corrigan]

I was diagnosed 3 months ago, and I mostly experience pain as a cramp or a pull of a muscle. Primarily in my legs where my condition is the worst. It always associated with movement, such as contracting or expanding a muscle.
If I feel other pain, it is soreness, from the times I over exert myself, which I try not to do.

I don’t feel acute burning pain. I hope this helps.

[John M C]

Thanks, Bill. I appreciate any information I can get at this point in the process!

[John Addy]

My pain is all about my cramps, I have no pain other than that. Sorry I could not be of more help.

[John M C]

Not at all. I appreciate your contribution!

[Mary]

My husband was diagnosed with ALS with Respiratory Onset in September 2021.  We were told there was no pain associated with ALS.  In Bill’s case other than breathing and of course the rapid progression of losing the ability to use muscles, PAIN …..has been his biggest problem.  He has the typical head drop which is associated with Respiratory Onset and this is causing a lot of pain.  He is also experiencing pain in every joint which he has  muscle atrophy.  Elbows, wrists, shoulders, and neck pain are constant.  In our different support group discussions he is not alone.   Always keep in mind that everyone is different, but there are folks with pain associated with their ALS.

[Howard Rhoades]

John:  My history is very similar to yours.  The only pain early on was infrequent cramps.  Now that my legs are almost totally disabled however, I experience sporadic pain in certain joints – I.E., knees, ankles, hips, and occasionally my feet.  There is no pattern, no unusual activity,  just everyday living in a wheelchair.  Inquiries at my ALS Clinic have resulted in my doctor suggesting that arthritis or something not related to ALS and resulting from minimal leg activity is to blame.  So a glass of water and ibuprofen are on my nightstand for those times when the pain disrupts my sleep.  The frequency this solution is once or twice a week.  I am reminded of a friend’s definition of the letters we see everyday; ALS equals Adjustable Life Style.  It’s been accurate for the last four years!  Howard

[John M C]

Thanks for your response, Mary. While I have read many scholarly articles that describe ALS as painless (in addition to my Dr) there is clearly a subset of individuals who do, indeed, have pain as a major symptom. And, based on your support groups it sounds like its a fair percentage.  I am not sure why ALS specialists would make such a blanket statement as “ALS is a painless condition” since ALS is such a diverse condition with an array of presentations, rates of progression, and affects every one differently.

It is reassuring to me to hear it from those who have experienced it directly and I appreciate you taking the time to comment. I wish you and Bill the best and hope he finds relief.

[Jean-Pierre Le Rouzic]

I am not sure why ALS specialists would make such a blanket statement as “ALS is a painless condition”

Because it’s supposed to be a disease affecting only motor neurons. Motor neurons do not convey sensory information at all, that’s the specific function of sensory neurons.
Motor neurons send information from the motor areas in the brain to the muscles while sensory neurons send information from their extremities to the brain.

Yet for me there is something weird in the statement that ALS affects only motor neurons, because in a PNS nerve there are both motor and sensory neurons, even in the corticospinal or corticobulbar tract there are sensory neurons (~40%).

Given this close proximity, how could a neuron disease affect only one type of neuron and not others? Something similar was already argued by scientists but I can’t remember the reference.

[Mary]

In Bill’s case the pain was one of the first noticeable symptoms and probably  helped to delay his diagnosis.

[John M C]

Hi, Howard and thanks! I am still able to walk some and I think that is definitely part of my problem as the more “normal” I try to be the greater the pain I experience. However, in the past I could spend the evening or weekend on the couch doing nothing and my pain would improve. Now its always there and there even with and during prolonged rest.

I appreciate your input. “Adjustable” is definitely a big part of it. Best regards to you.

[John M C]

That makes good sense Jean Pierre. Yet there are those for whom pain is an issue.

[Jean-Pierre Le Rouzic]

Yes indeed.
This publication states 56% of people with ALS experience pain:

doi: 10.3390/jcm11040944.
Pain-Related Coping Behavior in ALS:
The Interplay between Maladaptive Coping, the Patient’s Affective State and Pain
Ina Schlichte, Susanne Petri, Reinhard Dengler, Thomas Meyer, Aiden Haghikia, Stefan Vielhaber, Susanne Vogt

pubmed.ncbi.nlm.nih.gov/35207215/

[John M C]

Wow, that is eye popping!

[Pauline Kaza]

I also have RA. and Fibromyalgia.  It is difficult to discern which disease is causing the pain.  Troubling to me some days.  Stretching and heat help

[Chris King]

I have pain plus cramps somewhat relieved with Baclofen which was just increased at ALS clinic visit still low dose and feel it helps somewhat. My right arm and bicep have hurt plus swollen before officially diagnosed but never explored as upper motor neurons are only responding on EMG? I’m a firm believer in whatever normal we can do keep at it to our ability and willingness! I do wall yoga 4 times a week makes the difference between walking and somewhat talking which isn’t great but still feel like me most of the time. We can’t be defined by this disease nor should we be!

[Jean-Pierre Le Rouzic]

> My right arm and bicep have hurt plus swollen before officially diagnosed

It looks like inflammation?

> but never explored as upper motor neurons are only responding on EMG?

What do you mean? EMG is about detecting skin surface electric activity of muscles. So IMO inferring status of lower and especially motor neurons is as reliable as doing astrology.

Did you take a second piece of advice, from a rheumatologist as your right arm and bicep hurt and swell?

[John Addy]

I only have cramps all over my body.  They hurt worse in the abdomen. I also have scaly skin on my forehead especially around my eye brows.  I have minimal muscles in my hands and arms.  I am positive about this because of my faith.  I know where I’m going after this so my  anchor is in the Rock