ALS Guidance

Live your life until you can't

Pain


Most pain in ALS is preventable. Opioids are way overused. I'm not talking about worries about tolerance or dependence.

I'm referring to the fact that opioids (going by names such as oxycodone, hydrocodone, hydromorphone, fentanyl, and tramadol) were not designed for addressing the pain of immobility. So you are adding potential side effects like constipation, shallower breathing, sleepiness, nausea, confusion, etc. while not actually adding benefit.

Stronger position, weaker pain
As noted in the Positioning page, a lot of pain comes from unstable, pressured joints, pointing to the need for person-specific positioning and aids in a lift chair recliner, sofa, motor vehicle, bed, wheelchair, floor lift — wherever they are. The goals are to offload pressure away from joints and away from bony prominences, where pressure hurts more and does more damage.

Likewise, we usually want to avoid low air loss and air cell mattresses and overlays that "turn the person" in a way that is designed to avoid pressure injuries (seldom an ALS problem) but often create pain and damage of their own in ALS. Try to imagine that someone shook you continuously and you were unable to move your muscles or connective tissue in response.

Sensory pain? That can happen.
Some 20% of PALS have some kind of itching, stinging, or tingling that is explicitly sensory. Some is irritation from dry or grimy skin. Some is neuropathic. Some is viral, such as shingles — obviously if there is pain followed by blisters, you want to contact a doctor and get an antiviral.

If it's not clear which is which, you can start with unscented non-irritating moisturizing products such as grape seed extract moisturizer after blotting the area with tepid water and blotting dry. Coconut oil-based products are another option.

This is only trying a "skin deep" approach before considering systemic drugs such as gabapentin or pregabalin for neuropathic pain. If you try one of these, or duloxetine or a tricyclic, it's wise to start at the lowest dose since side effects can be significant for anything powerful enough to affect the sensory nervous system. And any B vitamin deficiency can contribute to sensory issues.

If the pain progresses to numbness, an autoimmune MND variant that may respond to IVIG could be considered.

Eye burning/stinging/itching
Dry eye and less ability to clear gunk can occur with less mobility. You might start with a mild-to-moderate Genteal drop, morning, noon, and night if helpful. A warm wrung-out washcloth in the morning to loosen secretions may help — doing this throughout the day helps with acid tears (lactic acid that builds up as muscles break down), and of course hydration is important as always.

Of course, you would want to eye the eyes to make sure there is not a stray eyelash or eyebrow hair on the lid or in the eye, or any sign of infection.

PALS with allergies may need new or different meds, though some may actually have fewer allergies from going outside less.

A fish oil capsule daily can enhance the tear layer overall, so that could be worth trying down the road if it is safe with the PALS' other conditions and meds.

Any eye problem that persists, of course, calls for a visit to an optometrist or ophthalmologist, even if via video to start.

Some PALS lose the ability to blink and/or close/open their eyes. You can use eye drops more often, and close the eyes with paper tape at night. Unfortunately, there may not be an answer for eyes that cannot open all the way, or at all, though this does not happen that often.