There are four main "muscle things" that occur with ALS: Spasticity, cramping,
fasciculations, and fibrillations.
Spasticity is an upper motor neuron problem and is present to some degree in ALS. For some
patients it is minimal, for others extreme. Spasticity can actually be helpful in maintaining
function as the rigidity helps replace normal muscle strength, but it causes jerky, hard to
control movements. Spasticity causes a tightening of muscles that results in a stiffening of
that part of the body in an exaggerated reflex. It is actually triggering both the muscles to
flex and the muscles to extend that part of the body at the same time. It can occur in any
muscles - the arms, legs, back, abdomen, or neck. A simple touch can trigger it and it may last
only a moment or persist indefinitely. Spasticity isn't always painful but it can be,
especially if it triggers muscle cramps that add to the pain.
Muscle cramps are very common in ALS, probably due to muscle fatigue or irritability from
screwed up nerve impulses. They can be terribly painful and can occur in any muscle; feet, legs,
arms, abdomen, chest, back, and (my all time favorite for sheer pain!) the neck and jaw. They
can be in small muscles or affect big ones -- good old-fashioned charlie horses. As the muscles
are affected by ALS, cramping is noted in that area. The cramping becomes less severe with time
because the weakening muscles simply can't work up a good cramp anymore. They tend to be
repetitive. Once a muscle starts cramping up, it does so over and over for a miserable hour or
so. They tend to occur more if you have overdone exercise, if the muscle is cold, or if
circulation is decreased. Holding a book up to read in bed on a cool night will just about
guarantee some whopping good hand cramps and result in interesting finger gestures!
Fasciculations (muscle twitchings) are probably due to nerve irritability. They occur in
smaller muscle bundles inside large muscle bundles and can be observed as well as felt.
Fasciculations are not so much painful as irritating. It can feel as if someone is popping corn
under your skin! They can be incredibly persistent and keep you from sleeping.
Fibrillations occur in single muscle fibers within a muscle. They cannot be felt but can be
seen on EMG (Electromyelogram). Fibrillations occur in conditions besides ALS.
Is it Spasticity or Cramping?
The first step in relieving these recurring pains is determining whether they are due to
spasticity or cramping. Medications that work for spasticity don't necessarily work for
muscle cramps and vice-versa.
Spasticity affects larger areas of the body - arm, leg, trunk, neck. All the muscles in the
area tighten up and the entire area may be so tight it hurts. Muscle cramps are generally
limited to a single muscle and the pain, although intense even in small muscles, is limited in
Spasticity often begins with an odd sensation, sometimes described as a quiver, rushing and
spreading through the area and becoming painful as they tighten the muscles and more painful as
the muscles tire. Muscle cramps start out painful and just get worse as they tighten up.
Spasticity in the legs generally causes them legs to stiffen out. In the trunk, back or
neck it causes your body to arch a bit. In the arms it may flex or extend the arm. Spasticity
is often most striking when you first wake up or start to move after sitting still for a while
and can often be connected to a sensory trigger. That trigger can be as mild as a gentle touch
so the connection may not be made.
Muscle cramps often affect the hands and feet making fingers and toes curl incredibly
tightly. Spasticity is more widespread, less likely to affect just those muscles, and more
likely to stiffen them out than to curl them.
Spasticity can usually be helped by medication but can be a very stubborn problem. One
consideration in treating spasticity is to find a balance between relieving excessive and
painful spasticity and maintaining a certain level of spasticity which can be helpful by
replacing muscle strength.
The meds for spasticity are primarilyBaclofen, Dantrium and Zanaflex, tizanadine
Although Baclofen is often listed under meds for cramping and prescribed for it,
the indications say "Clinically, baclofen is used to treat spasticity." In my
experience, Baclofen did not reduce cramping at all. However, if spasticity is triggering
the cramping, Baclofen may reduce cramping by reducing the spasticity. Some patients experience
weakness or tiredness while taking it but these problems can often be reduced if the dosage is
decreased. In 1996 the FDA approved the use of Baclofen, delivered by an implanted pump, for
the treatment of spasticity due to spinal cord injury and this is now being used for ALS and
Zanaflex is less likely to cause weakness but may cause sleepiness. This can often
be minimized by starting with a low dose and gradually increasing it until spasticity is
Dantrium has been used for spasticity, but because of its potential for causing
liver problems, is less frequently used since other meds are now available. It does seem
to still be used for bladder control problems caused by spasticity however.
The meds for cramping incude:
Valium and other muscle relaxants may be used for muscle cramps. However, their
side effects and cost make them a second choice to quinine in my opinion.
***Update. Mexilitine is gaining in use, but like Quininine has possible affects on heart rythm.
Quinine (Qualaquin, Quinine Sulfate) is a drug long used for muscle cramping but
in 1995 the FDA made it available by prescription only because of its very rare but potentially
severe risks (heart arrythmias). Even so I would
certainly recommend asking your doctor about trying quinine. Additionally, the FDA removed
muscle cramping from its list of uses because leg cramps are not life threatening and therefore
not worth the potential risk of quinine. Making matters worse for ALS patients who experience
severe muscle cramps daily, the FDA limited quinine to a single formulation available only as
Qualaquin -- which costs around $5 a tablet! All of this was done and continues in effect even
though research shows quinine to be effective against cramping, and that no other drug is
significantly effective. #*%&! So we are left to suffer or find a doctor willing to order
Qualaquin outside of the FDA listed use, and pray that insurance will cover it. If you find a
doctor willing to write a prescription for generic quinine sulfate, save money by having the
prescription filled by an Internet Canadian pharmacy. Or drink Tonic Water. The amount of
quinine is probably too low to have any effect, however.
I do not recall what dose I took, but do know that too large a dose will cause weakness. I am
told the smallest tablet made is 260mg. I would recommend beginning with half a tablet and
increasing to a whole one if it is ineffective. It is also available in 200 mg capsules.
It is much less expensive than the other drugs prescribed, and, in my experience, the most
Like any drug, quinine does have some potential side effects (and cannot be taken by pregnant
women) but it does not cause physical and psychological dependence as Valium does in long term
use. Aside from the weakness when I took the larger dose, I noticed no other immediate side
effects. After more than 5 years of daily use, I did notice sweet foods started to loose any
sweet taste, especially chocolate. Quinine is very bitter so I assumed it was the culprit since
I wasn't on any other meds at the time. It was a minor problem and when I did stop taking
quinine, I found the ability to fully enjoy an Oreo was gradually restored!
There are other medications and home remedies to try. Retigabine (Trobalt) is mentioned as is a spoonful of French's mustard! Be very careful about self medicating with
potassium or magnesium -- check with your doctor about safe dosages.
I have not heard of anyone having any real success in reducing the fasciculations
(muscle twitching) with any medication.