Treatments for CFS/ME and Fibromyalgia (abridged version)

43 Pages·2011·0.19 MB·English

by  Maija Haavisto

This is a free abridged eBook version of my book Reviving the Broken Marionette: Treatments for
CFS/ME and Fibromyalgia, published in 2008. The original book has 346 pages and is available
both in print and as an eBook. It contains descriptions of all the drugs featured here, as well as all
the different drug groups and types.
Besides most descriptions, this free version also omits a lot of other content, such as the Preface,
Introduction, a short section where I discuss the terminology I use (CFS/ME/fibromyalgia), three
appendices (Drug interactions, Surgery and Vaccinations), Glossary and Index, as well as all the
references—more than 1,000 in total.
For this eBook the contents of the book have not been otherwise altered, except that I have added
asterisks to mark drugs that are commonly available over-the-counter. (In the original book there is
more detailed availability information for all the drugs.)
The book's website is at http://www.brokenmarionettebook.com. The printed book can be
purchased from Amazon and most other online bookstores, but for the full eBook version you have
to go to the book's website.
Disclaimer
This book has been written for informational purposes only. It has not been authored by a medical doctor
and as such should not be considered medical advice. It cannot be used to treat, prevent or diagnose any
medical condition and is not intended to substitute or replace professional medical care.
The author has gone to great lengths to verify all the information presented in this book. Nonetheless, the
sheer volume of reviewed material makes it impossible to guarantee complete factual accuracy. All
information is subject to change and some may already be outdated by the time the book is available in
print.
The author or the publishers and distributors of the book cannot assume responsibility for the accuracy of
any of the information contained herein, or of the consequences of treating the information as medical
advice. All treatment–related decisions and their consequences are the sole responsibility of the reader
and their doctors.
Reports of any errors, omissions or changes to the information contained in the book can be submitted to
the author via electronic mail to the address [email protected]. If verified, the author
will attempt to publish them on the website of the book at http://www.brokenmarionettebook.com. The
author cannot guarantee that all such information will be received or posted on the website.
CHAPTER 1.
Sleep aids, tranquilizers and muscle relaxants
CFS/ME and fibromyalgia are frequently associated with major sleep disturbances. This is even a part of
the Canadian diagnostic criteria for CFS/ME. Most likely the disordered sleep is not the cause of the
1
fatigue or other symptoms, but it can often worsen them and lower quality of life. Even modest sleep
deprivation increases the secretion of inflammatory cytokines such as IL–6, which can contribute to pain,
fatigue, malaise and flu–like symptoms. IL–6 in particular causes muscular hyperalgesia (heightened
2
sensitivity to pain).
The sleep problems can include low quality of sleep, sleep apnea, insomnia, hypersomnia and hypnagogic
states. Other related problems such as nocturia and involuntary movements are also common. According
to Dr. Robert Bennett restless legs syndrome is the most common sleep disorder in fibromyalgia and up to
one fifth of the patients suffer from sleep apnea.
3
Patients often experience frequent awakenings during the night and cannot easily fall asleep again. Thus
quick–acting medications may not always be of much help. The quality of sleep may suffer because of
frequent need to urinate. In such cases medication for nocturia should be considered.
The “Z drugs”
zolpidem (Ambien, Stilnoct, Stilnox, Zoldem, Ivadal)
As the half–life of zolpidem is only 2–3 hours, some patients may wake up at night and cannot fall asleep
again. Compared to the other Z drugs zolpidem appears to be slightly more effective, better tolerated and
less likely to lead to rebound insomnia on discontinuation. Jay Goldstein notes that zolpidem works as an
5
effective analgesic for some patients and is sometimes activating.
6
A small double–blind study concluded that zolpidem improved sleep and daytime energy levels in
patients with fibromyalgia, but other symptoms such as pain, tender points and morning fatigue did not
get better. Patients in the placebo group actually reported more adverse effects than those getting
7
zolpidem. In a large survey of fibromyalgia patients zolpidem was ranked as one of the most effective
mediations. Zolpidem may also help nocturia and restless legs.
8 9 10
Paradoxically, in some cases zolpidem is able to arouse people diagnosed as being in a permanent
vegetative state (a deep comatose state thought to have almost zero hope of awakening). This may seem
11
to bear no relevance to CFS/ME and fibromyalgia, but later the drug has been shown to help many other
neurological conditions as well, such as Bell’s palsy and Parkinson’s disease. It can be hypothesized that
12
zolpidem might be worth a try in severe CFS/ME. Other similar sedative drugs do not appear be effective
in this use.
Carbamazepine, phenytoin, azole antifungals, many different antibiotics, nefazodone and verapamil may
either decrease or increase the blood levels of zolpidem.
Zolpidem is available in the United States, the United Kingdom, Australia and many other countries, but
not in Canada. It is very inexpensive. A quick acting oral spray formulation is waiting for FDA approval.
zaleplon (Sonata, Starnoc, Zalep, Zaplon, Zerene)
zopiclone (Imovane, Zimovane, Zileze, Zopiclone)
eszopiclone (Lunesta)
Benzodiazepines
diazepam (Valium, Stesolid, Diazepam, Apaurin, Seduxen)
alprazolam (Xanax, Alprox, Frontin, Helex, Tafil)
temazepam (Restoril, Normison, Euhypnos, Remestan, Levanxol)
clonazepam (Klonopin, Rivotril, Paxam, Clonapam, Antelepsin)
Clonazepam is a stronger anticonvulsant and muscle relaxant than most other benzodiazepines. It is
probably the most commonly used benzodiazepine in CFS/ME and fibromyalgia. Usually a small dose of
0.5 mg is prescribed. Paul Cheney, one of the most prominent CFS/ME specialists, swears by
clonazepam. According to him very small doses during the daytime can improve energy levels. He
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believes this to because of the inhibitory effect GABA has on the NMDA receptors, reducing excessive
nitric oxide production.
Clonazepam is also recommended by Charles Lapp, another CFS/ME expert. He believes the best sleep
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aid is a combination of clonazepam to induce sleep and trazodone to maintain sleep. In a fibromyalgia
newsletter published in 1999 nine experts listed the treatments they considered the most helpful and
clonazepam made it to six lists. This opinion is also shared by the fibromyalgia patients, who ranked
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clonazepam among the most effective medications in a large survey.
28
Because of its muscle relaxant properties clonazepam is often used to treat pain similar to diazepam.
Some patients with CFS/ME note improvement in both cognitive symptoms and flu–like pains and
aches. Clonazepam proved helpful for dysautonomia of CFS/ME in a small study. It often works for
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restless legs and sometimes for skin tenderness and headaches. Dr. David Bell believes clonazepam is
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effective for those who feel “tired and wired,” but not for the sleepy– fatigued type.
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Carbamazepine, phenytoin and St. John’s wort can decrease and azole antifungals, macrolides,
diclofenac, nefazodone and verapamil increase the blood levels of clonazepam.
Clonazepam is available in the United States, the United Kingdom, Canada, Australia and many other
countries. It is very inexpensive.
lorazepam (Ativan, Merlit, Lorans, Temesta, Lorapam)
triazolam (Halcion, Trycam)
Other sleep aids
See also:
anticonvulsants (CHAPTER 3), trazodone, mirtazapine, mianserin, olanzapine, risperidone,
quetiapine (CHAPTER 5), dextromethorphan, cholinesterase inhibitors, hydroxyzine,
diphenhydramine, doxylamine, cannabinoids, parenteral magnesium,
ranitidine/cimetidine, granisetron/tropisetron/ ondansetron (CHAPTER 9), acamprosate
(CHAPTER 10)
melatonin (Transzone, Circadin)*
ramelteon (Rozerem)
sodium oxybate (Xyrem, Alcover)
Sodium oxybate (gamma–hydroxybutyrate) is an endogenous substance which has been used as an
anesthetic. Unfortunately it has gained a questionable reputation owing to its use as a recreational and
“date rape” drug. It is only lately that it has been approved for the treatment of narcolepsy and specifically
the cataplexy attacks caused by the condition.
Sodium oxybate is a highly effective sleep aid and helps many people whose insomnia is not relieved by
other agents. It is a powerful muscle relaxant and may act as an antidepressant. It increases growth
hormone secretion. In studies with FM patients sodium oxybate has not only improved quality of sleep
53
but fatigue and pain as well. Trials of the drug in CFS/ME and several more for fibromyalgia were
54,55,56,57
running at the time of the writing.
Despite its bad reputation sodium oxybate is a safe, well–tolerated and non–addictive drug when used
according to the instructions. Most people experience no morning “hangover” of any kind. Side effects
can include nausea, confusion, headache, tremor and dizziness. Sodium oxybate has no known metabolic
interactions with other substances, but taking it with any other sedatives (including alcohol and muscle
relaxants) is dangerous.
Sodium oxybate is available in the United States, Canada, the United Kingdom and some other European
countries, but not Australia. It is very expensive and thus most likely inaccessible to patients lacking
insurance or those whose insurance does not cover it.
Muscle relaxants
See also:
clonazepam, diazepam, sodium oxybate (CHAPTER 1), flupirtine, thiocolchicoside
(CHAPTER 2), gabapentin, pregabalin (CHAPTER 3), cannabinoids, parenteral magnesium
(CHAPTER 9)
tizanidine (Zanaflex, Sirdalud)
orphenadrine (Norflex, Disipal, Biorphen, Relaflex)
baclofen (Lioresal, Liotec, Baclofen, Clofen)
Baclofen is an agonist of the GABA receptor. It is used to treat spasticity in e.g. multiple sclerosis.
B
Baclofen may also help to relieve aches, cramps and related symptoms of CFS/ME and fibromyalgia,
including muscle weakness. Like sodium oxybate/GHB, baclofen increases the secretion of growth
hormone and this response in CFS/ME does not differ from that in the healthy persons. Baclofen can
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also help bladder problems , GERD (acid reflux) and trigeminal neuralgia.
68 69 70
Dr. Jay Goldstein believes that baclofen is one of the most effective treatments for CFS/ME (especially
for pain, including headache) and he uses a dose of 10–20 mg three times a day. He has found it helpful
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for anxiety and sometimes for fatigue too. If baclofen produces adverse effects, he suggests trying
estrogen, oxytocin, mexiletine or reboxetine, which have somewhat opposite effects. Dr. David Bell has
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found that baclofen does not work very often, but when it does, the results can be dramatic.
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Baclofen can lower blood pressure, which may be problematic for many patients with CFS/ME.
Drowsiness, dizziness and nausea are common side effects. Some people may experience a worsening in
muscle weakness, especially if they also use tricyclic antidepressants. The treatment should not be
discontinued abruptly, as that may lead to seizures or other withdrawal symptoms.
Baclofen is available in the United States, the United Kingdom, Canada, Australia and many other
countries. It is inexpensive.
carisoprodol (Soma, Carisoma, Somadril)
cyclobenzaprine (Flexeril, Flexitec, Flexiban)
chlorzoxazone (Parafon Forte, Paraflex)
metaxalone (Skelaxin)
methocarbamol (Robaxin)
dantrolene (Dantrium, Dantrolen, Dantamacrin)
CHAPTER 2.
Painkillers

Non–specific anti–inflammatory drugs (NSAIDs)
aspirin (Aspirin, Bayer Aspirin, Aspro, Aspirina, Disprin)*
ibuprofen (Advil, Motril, Brufen, Nurofen, Ibutop)*
naproxen (Aleve, Anaprox, Naprosyn, Proxen, Apranax)*
indometacin (Indocin, Indocid, Elmetacin, Indocollyre, Indogesic)
piroxicam (Feldene, Candyl, Piroxicam, Felden, Artrilase)
meloxicam (Mobic, Movalis)
etodolac (Lodine, Elderin)
nabumetone (Relafen, Relifex, Nabugesic, Naburen)
diclofenac (Voltaren, Cataflam, Almiral, Diclac, Diclogesic)*
Diclofenac is well tolerated and because of its selectivity for COX– 2 it has a lower risk for
gastrointestinal complications than most other NSAIDs. It is usually taken 2–3 times a day. It is believed
to have anti– inflammatory modes of action that other NSAIDs do not have.
Diclofenac has been shown to increase plasma levels of beta endorphin. This may be helpful for both
18
pain and other symptoms. One study found diclofenac effective against E. coli bacteria and suggested it
as a treatment for urinary tract infections. Headache, dizziness and itchiness are fairly common side
19
effects. The risk of liver toxicity may be higher with diclofenac compared to other NSAIDs.
Diclofenac is available virtually everywhere. Many different preparations exist, including immediate
release and modified release tablets, gels, creams, suppositories, sprays and patches. Oral forms are
inexpensive. Diclofenac is available over–the–counter in Germany, Australia and New Zealand, but is
usually prescription–only. Topical creams and gels are often available over the counter. In Arthrotec
diclofenac is combined with misoprostol (see CHAPTER 10). In some European countries a combination of
diclofenac and codeine is sold as Combaren.
flurbiprofen (Ansaid, Froben, Flugalin)
celecoxib (Celebrex, Celebra)
etoricoxib (Arcoxia, Tauxib)
Narcotic painkillers
codeine (Tricodein, Codicaps)
oxycodone (OxyContin, Roxicodone, Proladone, Oxynorm)
hydrocodone (Vicodin, Lortab)
hydromorphone (Dilaudid, Palladone, Palladon, Opidol)
morphine (Avinza, Kadian, Kapanol, Skenan, Oramorph)
fentanyl (Duragesic, Durogesic, Actiq, Fentanyl, Sublimaze)
methadone (Dolophine, Methadose, Physeptone, Metadon, Metadol)
pethidine/meperidine (Demerol, Dolantina)
buprenorphine (Buprenex, Subutex, Temgesic, Transtec, Butrans)
dextropropoxyphene/propoxyphene (Darvon, Doloxene, Depronal, Abalgin)
tramadol (Ultram, Zydol, Tramal, Zytrim, Tradonal)
pentazocine (Talwin NX, Fortral, Fortal)
Pentazocine is an atypical opioid, which only has weak affinity for the mu opioid receptor, but acts as an
agonist of the kappa opioid receptor and the sigma receptor. It is rarely prescribed and its primary use is
1
the treatment of mild to moderate pain. It is less prone to causing sedation, nausea and hypotension
compared to typical opioids. Sigma1 agonists may be useful in the treatment of depression and cognitive
problems. Pentazocine has also demonstrated anticonvulsive action.
42 43
Jay Goldstein lists many different possibly beneficial mechanisms for pentazocine in the treatment of
CFS/ME and fibromyalgia, not as a painkiller but for general symptom relief. According to him it works
44
for some patients for whom all other treatment has failed. He includes
two case reports of seriously ill patients refractory to other treatments, whose symptoms were greatly
relieved after just one pill of pentazocine and naloxone.
Pentazocine is more likely than other opioids to cause hallucinations and other psychiatric side effects. It
has been suspected to cause adverse effects when combined with the muscle relaxant orphenadrine.
Smoking may reduce blood levels of the drug.
Pentazocine is available in the United States, the United Kingdom, Canada, Australia and some other
countries. In the United States pentazocine is only sold in combination with naloxone, an opioid
antagonist. Because naloxone is not absorbed from the stomach, this does not affect the efficacy of the
drug, but prevents intravenous administration. In spite of this, pentazocine is a Schedule IV drug in the
United States.
Migraine and headache treatments
See also:
melatonin, muscle relaxants (CHAPTER 1), NSAIDs, acetaminophen (paracetamol), narcotic
painkillers, botulinum toxin, Sarapin (CHAPTER 2), anticonvulsants (CHAPTER 3), tricyclic
antidepressants, moclobemide, phenelzine, buspirone, L–tryptophan/5–
hydroxytryptophan, lithium (CHAPTER 5), clonidine, beta blockers, calcium channel
blockers (CHAPTER 6), nicergoline, ergoloid (CHAPTER 7), DHEA, naltrexone (CHAPTER 8),
NMDA antagonists, cholinesterase inhibitors, cinnarizine, cannabinoids, parenteral
magnesium, acetazolamide (CHAPTER 9), montelukast, telmisartan, captopril (CHAPTER 10)
pizotifen (Sandomigran, Sanomigran, Mosegor, Pizotifen)
cyproheptadine (Periactin, Peritol, Viternum)
sumatriptan (Imigran, Imitrex, Imigrane)
naratriptan (Amerge, Naramig)
ergotamine (Ergomar, Migril)
dihydroergotamine (Migranal, Dihydergot, Seglor)
intranasal lidocaine (Altaseptic, Xylocaine)*
Intranasal lidocaine spray can be used as an abortive treatment for migraine headaches. Some studies have
not found it effective, but most have demonstrated efficacy in about half of the patients. Lidocaine not
59,60
only relieves the pain, but nausea and photophobia (light sensitivity) as well. In some patients, however,
the efficacy is short–lived and the headache comes back. Local stinging and swelling is a common
adverse reaction. Nausea, dizziness and sedation are also possible.
Lidocaine sprays are widely available. They are meant for numbing the mouth and the throat, but they can
be used intranasally. It is inexpensive.
Other analgesics
See also: zolpidem, muscle relaxants (CHAPTER 1), anticonvulsants (CHAPTER 3), neomycin
(CHAPTER 4), tricyclic antidepressants, venlafaxine, milnacipran, duloxetine, SAM–e,
olanzapine (CHAPTER 5), clonidine, moxonidine (CHAPTER 7), oxytocin, naltrexone
(CHAPTER 8), NMDA antagonists, cholinesterase inhibitors, cannabinoids,
granisetron/tropisetron/ ondansetron, sibutramine, misoprostol (CHAPTER 9), calcitonin,
ibudilast, neurotropin, ACE inhibitors (CHAPTER 10)
acetaminophen/paracetamol (Tylenol, Panadol, Calpol, Perfalgan, Tempra)*
nefopam (Acupan)
flupirtine (Katadolon)
Flupirtine is a non–narcotic, non–NSAID analgesic drug with some muscle relaxant activity. It is used
especially for chronic lower back pain. It has also shown efficacy in the treatment of headaches and
migraines, cancer pain, dysmenorrhea and neuropathic pain. In Germany flupirtine is sometimes used for
64
fibromyalgia. One case series has been published about this use.
65
Flupirtine is much more than just a painkiller though; it has several properties that have been used to treat
neurodegenerative illnesses such as Alzheimer’s, CJD and some congenital diseases. It is thought to be an
NMDA antagonist and a KPNQ potassium channel opener with some alpha adrenergic action. It would
2
thus likely work well for CFS/ME, too. A patent has been filed about the use of flupirtine for overactive
bladder.
66
Flupirtine is usually well–tolerated. Dizziness, drowsiness, dry mouth, pruritus (itching) and stomach
upset are the most common side effects. There can also be nausea, headache and sleep disturbances. No
drug interactions are known. The only real downside is the short half– life—usually flupirtine is
administered 3–4 times a day. There are currently no slow–release formulations, but perhaps one will be
developed in the future.
Flupirtine is available in some European countries, such as Germany, Portugal and Italy, as well as Brazil.
It is being developed as a fibromyalgia drug under the brand name Effirma by a U.S. company, with a
phase II study expected soon. Thus in a few years flupirtine could be available in the United States and
many other countries, but currently most patients would need to order it from abroad, as many people
with neurological conditions already do. In long–term use it gets somewhat costly.
thiocolchicoside (Coltramyl, Miorel, Muscoril, Miotens, Coltrax)
Topical and intravenous pain treatments
See also: ketamine, parenteral magnesium (CHAPTER 9)
botulinum toxin A (Botox, Dysport)
botulinum toxin B (NeuroBloc, Myobloc)
Sarapin (Sarracenia purpurea distillate)
lidocaine/procaine/buvicaine injections
topical lidocaine (Lidoderm)
topical lidocaine and prilocaine (Emla)*
intravenous lidocaine
Lidocaine is also used intravenously for severe, intractable pain. It is often very effective for
fibromyalgia. Dr. Jacob Teitelbaum gives 40– 50 mg at first, which may be increased up to 300–400 mg
per session if no serious side effects occur. He notes lidocaine to be particularly helpful when given
78
concomitantly with Myers’ cocktails.
In a small double–blinded pilot study lidocaine was much more helpful than conventional treatment alone
for pain, but global improvement did not reach significance. A more recent and much larger study found
79
that intravenous lidocaine provided most fibromyalgia patients with good pain relief lasting for several
weeks.
80
According to Jay Goldstein this treatment helps up to 50% of the patients who have not benefited from
oral medication. He even considers intravenous lidocaine to be the most effective treatment for CFS/ME
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and fibromyalgia. Besides pain, other symptoms such as fatigue, cognitive problems and gut spasms often
improve, as well.