There are four main "muscle things" that occur with ALS: Spasticity, cramping,
fasciculations, and fibrillations.
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. Cramps 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!
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, neck, or entire body at once. 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.
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
(Electromyogram). 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
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 area.
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 the 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
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 primarily Baclofen, Dantrium and Zanaflex, tizanadine HCL.
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 PLS patients.
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 relieved.
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 include:
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 Quinine has possible effects on heart
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 arrhythmias). 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
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. but 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 effective.
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 or pickle juice! Magnesium, potassium, calcium are just some things suggested but
should be used as ordered by a doctor. Excesses of these can cause severe problems. More importantly, they
are less likely to be effective to any definite degree unless your levels were low to begin with -- and
that is not usual in ALS. In ALS muscle cramping is caused by nerve irritability and/or muscle strain as
I have not heard of any consistent success in reducing the fasciculations (muscle twitching) with any