Tips for Handling Muscle Problems and Pain

[Kathy stitz]

I have read that pain is one of the least studied and poorly managed symptoms of this condition.  I have pain in my body every day to some degree.  Some days I don’t have as much pain as other days.  I recently told my neurologist this and he said, “People with ALS don’t have pain.” This is incorrect.  If you read information about ALS and people’s stories you will see that they do have pain.  I recently saw a post on an ALS Twitter page where someone wrote, ” Can neurologists stop telling ALS patients that pain is not associated with ALS? I don’t think there is 1 second that I’m pain-free. ” Do you have pain in your body and where and how often?

[Carolyn Barry]

Kathy, I’m sorry to hear you have pain everyday.  I too have pain everyday.  It is mainly in my feet and my lower legs.  Partially it is due to my AFO’s, which are made of carbon.  It seems that the metal is really the cause of the increasing pain and swelling on the sides of my feet.  I am seeing my podiatrist in a week, and I may have to consider the traditional type of AFO, that will be custom made.  I have axonal sensorimotor polyneuropathy, and my neurologist said that my pain is due to that.  She also said that ALS does not cause pain, but I have it because of the neuropathy.  This sure doesn’t make sense, as I hear many pALS have pain everyday.  I take Gabapentin for the pain, but it doesn’t seem to help at times.

[David Crellin]

I mentioned to my consultant last week that I was having reduced sleep due to pain in my right shoulder and biceps. He suggested seeing my GP or taking pain killers, and suggested it wan’t due to ALS.  I retorted that having broken my collar bone, upper arm, wrist and torn biceps all on right side meant that the biceps was permanently shorter (it has been for years) and therefore atrophy of this muscle caused exacerbated pain. Same with soulder muscle atrophy causing less support to the already damaged joints.  I had to speak over him as he wouldn’t pause to listen.

I’m fortunate that a career including time working with UK cabinet members and senior civil servants has given me the confidence and skills needed to make myself heard (perhaps a rather priveleged upbringing and education helps).

But this should not be a prerequisite to enable one’s voice to be heard.

I despair. With family and friends senior medics, they agree that it’s a mix of fragile ego, narcissim, and plain ignorance afflicting some consultants. They are too used to being deferred to. However, thankfully they are not all like this.

It seems there may be a need for patient advocates, like we find on this website.

[Lisa Ryan]

Hello, I too have pain, I do not have a diagnosis yet but I have experienced what David has said about the fragile ego and arrogance of the specialists.  I too have had to talk over the doctor to be heard and even still I do not get answers to my questions, he swiftly changes the subject or talks over me and continues his train of thought.  This is very frustrating.   I have also heard him say pain isn’t a feature of ALS..

[Dagmar]

As the article (in the start of this topic) “There’s a misconception that amyotrophic lateral sclerosis (ALS) is not a physically painful disease. That’s true on one hand because ALS does not directly cause pain. However, it’s also false because the disease does result in muscle problems that can be very painful.”

One of the first questions I’m asked at every ALS Clinic visit is: “Are you in any pain today?” – – so, not all neurologists share the ALS-no-pain mindset.

I did experience pain in my first two years; much like the 4 types of pain described in the article. I had sudden “zingers” in my feet and lower legs – – nerve associated, that’d startle me or even cause the foot to jerk. I had a constant pain of tightness in my leg muscles. And then, there was the “hum.” My body had this silent hum (but I could feel it) like I was a piano with all the strings pulled way too tight. It went away when I slept, but returned within 30-sec. of waking.

Pain is different for everyone. We each interpret it and deal with it differently. Mine was there, but not debilitating. I didn’t feel it needed medication to mask it, instead as the article recommends, I tried my own methods:

Nightly, I’d massage my feet & toes adding range-of-motion movements. I did gentle leg and body stretches. And practiced mental relaxation, mindfulness, and positive self-talk. I also looked at my day and tried to alleviate times when I was over-taxing muscles… like, water-walking in the pool was relaxing – – but getting into and out of a bathing suit plus, in and out of the pool – – wasn’t. I switched to using a recumbent bike to give my legs gentle exercise. Little things like switching from a hand-held to a electric toothbrush gave my hands a break.

I don’t feel the tightness anymore and the “hum” has disappeared. I suggest you help your medical team identify what and where the pain is coming from, and together work to help your body find the calm it needs.