Raise your hand if that was the statement made by your doctor or that you read. I guarantee that it is a statement which is hotly contested by people with ALS worldwide. I also guarantee that a majority would say that statement is full of shit. The truth is that it is a true statement. It is also false.
Here is what I think. ALS , the disease, is the death of motor neurons within the brain and spinal cord resulting in muscle wasting. That is technically all that ALS is. Now if you think about it, that process in and of itself is completely painless. I feel no pain from my neurons degenerating. That is where I believe that the medical field takes it too literally. I know it is not believed by all, but I think that is where the notion of no pain stems from.
Truth be told, there is in fact a fair amount of pain involved. Both a physical and mental aspect. Early in my progression, muscle cramping was probably my biggest enemy. Now, I was an athlete most of my life. I played sports, worked out, engaged in outdoor activities and worked a physical job up until I fell ill. Cramping was no stranger to me. ALS cramps are straight from Hell !! I have never experienced cramping the likes of these. They happen often and everywhere. There are very few body parts I have not had cramps in. Have you ever had a cramp in your throat?
Fasciculations. A new vocabulary word for most folks. These are twitches of the muscles. You know how a horse will twitch to shoo flys? Yeah, I can do that to. All over my body even my eyes, nostrils and scalp. Except I have no control over them. While they are not really painful, they are quite annoying and can lead to some aching. They are also a major contributor to overall fatigue. The constant contractions burn a lot of energy.
Joint pain is another issue. Thankfully, up until now it has not been too bad for me. Most of it comes from lack of movement. Range of motion decreases so muscle shortens. Making it painful to move beyond certain points. Contractures fall in with this. My hands are in a perpetual fist right now. This makes my fingers feel sore. My shoulders often ache from sleeping in one position for extended periods as turning in bed takes much effort.
These are just a few examples of the pain associated with ALS. I hear stories from others who are further along than I and it can get much worse. It’s a shame that there is a division between what many experts believe and what we, the patient , experience.
Same here….they were confused mnd is never sensory and I could feel the twitches the acid like lacerations pin prick insect crawling sensations. and what not …..Before onset of symptoms I even had some.strange internal organ abdominal muscle wall pain or.scratching which gave rise to crawling insects followed by muscle twitches…
I thought I am intelligent enough to perceive all this Nd my doc will be happy to know what is like in mnd….on the contrary I.was told…Mnd is not sensory
I’ve had ALS for 26 years, but no pain. My hands are curled, also. I no longer have muscle twitches, or if I do, I don’t feel them.
Before and after my diagnosis, I too, was active. I was always exercising and walking around everywhere. About ten years ago, I could no longer workout by myself, and got very stiff. Then in 2015, my husband and I hired a part-time caregiver and she gradually began exercising my legs and feet. Then gradually began moving my arms and hands. Now, three years later, she exercisings every limb and muscle in my body, seven days a week, and I’ve never felt as good as I do now.
I highly recommend this, if you can no longer workout by yourself. It’s made all the difference in how I feel and act.
Thank you for your insight. That is great advice for all of us.
You’re welcome. It’s made a big difference in my life.