There are four main "muscle things" that occur with ALS: Spasticity, cramping, fasciculations, and
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 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 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 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
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 rhythm.
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 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. 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 muscles weaken.
I have not heard of any consistent success in reducing the fasciculations (muscle twitching) with any