I was diagnosed with Chronic Fatigue Syndrome when I was eight years old. This was in 1991 when most mainstream doctors knew virtually nothing about the disease. The doctor who diagnosed me with CFS only rendered this diagnosis because he had no concrete explanation for why I was presenting with the symptoms that I was. My mother had taken me to the clinic because I was frequently truant from school, laid up on the couch and unable (fibromyalgia or, as some school faculty members suggested, unwilling) to move.
When the doctor asked me what was wrong, I told him that my nerves hurt. He looked at me, baffled, and said, “What do you mean hurt?”
As an eight-year old I wasn’t the most articulate person in the world, but I tried to elaborate nonetheless. “I don’t know,” I replied. “Like, my hands and legs, they feel real weak and…” I couldn’t think of another adjective to describe the sensation I was experiencing other than to say, “painful” or “throbby.”
What I was experiencing was wide-range muskuloskeletal pain and inflammation of the joints. These are the symptoms of both Chronic Fatigue Syndrome and Fibromyalgia. Later, in my teens, a doctor would tell me that what I was actually afflicted with was/is Fibromyalgia. Both are believed to be immunological diseases. Neither is believed to be contagious and researchers have yet to find a cause. Many suggest that it develops in persons with genetically inferior immune systems who catch Mono (Mononucleosis).
Today we are told that an estimated five million people are afflicted with Fibromyalgia. There are tons of myths about Fibromyalgia and CFS, the most common being that CFS is “the kissing disease” (a label that should be stricken from the record now that doctors know it is not a communicable disease) and that only women can suffer from Fibromyalgia. Although women account for the majority of Fibromyalgia sufferers, men and children can also get it with symptoms typically manifesting in early middle age.
When I was growing up, school psychologists and PTA members insisted that it was “all in my head,” a not-uncommon pedestrian diagnosis that is all too unfortunately parroted by many in the mainstream medical community. Fortunately, books have begun to be written and papers published in prominent journals. Little by little, Fibromyalgia has become a widely acknowledged disorder and one that is being treated in a number of ways.
Many clueless American physicians advise their Fibromyalgia-afflicted patients to simply get more exercise and write them a script for Neurontin. This is a two-pronged slap in the face because a) when you are suffering from a disease that zaps your energy and causes widespread pain and fatigue, the last thing you feel capable of is an aggressive workout regimen, and b) because it only takes a Google search on the patient’s part to discover that the muscle relaxant you just prescribed them doubles as an anti-depressant; no person afflicted with Fibromyalgia wants to think you are giving them a happy pill and labeling them as crazy.
As mentioned above, understanding of and treatment for Fibromyalgia is growing and now there are doctors who won’t just write you off. Instead, they have been prescribing drugs like Lyrica and Cymbalta to treat the problem. But this is where the conundrum comes in:
As a former attendee of CFS support groups and a frequent visitor of Fibromyalgia-related forums, I can tell you that Lyrica was only effective for one out of every five people I talked to. I, myself, was prescribed this powerful—and, I would add, dangerous—drug for my Fibromyalgia and I can tell you that it had a dire outcome that was not included in any list of its known side effects. After only taking one dose of Lyrica, I woke my family with violent night terrors. When they attempted to wrest me from these night terrors, I lashed out, thrashing around and kicking a hole in the wall. They described my physical movement as being like that of a grand mol seizure.
I tried taking Lyrica on and off for over a month, but every time I swallowed a dose, the same problem would occur. My doctor kindly swapped Lyrica out in favor of Savella, a similar drug. This one is notorious for causing and that’s just what it did to me except this retention came with a bonus, what one might call a double-whammy. Not four hours after taking Savella, I couldn’t urinate despite my bladder feeling like someone was inflating it.
The pain perpetuated into the late afternoon, at which point I attempted to force myself to pee. As urine finally began to flow in the dullest stream possible, I pooped my pants. Sorry, but there’s no other way to say it. To use clinical terms would only do a service to a drug that did nothing but cause me, the patient, a gross disservice. And then there was Cymbalta…yawn…
Cymbalta is a powerful anti-depressent anti-anxiety medication that acts as a serotonin inhibitor. It has been linked to suicide in some patients. Five patients committed suicide during a Cymbalta trial. And the craziest part of all? After this happened throughout the development of the drug, Cymbalta hit the market and the pharmaceutical company responsible for it warned of potential side effects by simply saying it may cause “suicidal thoughts” as opposed to suicidal actions.
As anyone who suffers from Fibromyalgia or CFS knows, depression is part and parcel of the condition. Feeling like crap all the time would give anyone the blues. Ergo, anyone coping with Fibro should not be taking something that could make them more fatalistic or crestfallen, to say nothing of straight up wanting to die.
Life should be treasured, we know this, but for Fibromyalgia patients this is easier said than done. We want to live life and appreciate life, but we’re frequently down in the dumps and in tremendous amounts of pain.
This is where nootropics come in. With smart drugs and herbal supplements blowing up online, it is no surprise that several nootropic proponents have started to seek out alternatives to mainstream Fibromyalgia drugs.
In her 2008 book “Reviving the Broken Marionette,” Maija Haavisto writes, “Nootropics are potentially a highly useful class of medication in the treatment of CFS/ME and fibromyalgia, but they tend to be poorly known to doctors in the United States, as they are mostly used in Europe to treat conditions like Alzheimer’s disease, stroke and ADHD.”
The following is a list of some nootropics which have been found to be of use in combating the symptoms of Fibromyalgia:
Perhaps the most controversial of the bunch due to its stimulant nature, this racetam is said to help with the brain fog that is associated with Fibromyalgia. Is it normal for those suffering from the disease to have a lack of focus and a feeling of tiredness accompany their pain and fatigue. Piracetam helps eliminate these symptoms due to its status as a congitive booster. One online poster said that it could improve Fibromyalgia’s “transketolase abnormalities.” Regardless, Piracetam is not prescribed to treat pain, so use with caution and do not expect all of your symptoms to vanish as a result of taking it.
Some say this is the pick of the litter in terms of Fibromyalgia nootropics. It is also a stimulant and it has been credited with providing CFS sufferers with more energy and a sharper mind. On the flipside, however, one study of the drug found that only twenty percent of participants received any benefits from being on Vyvanse. The Fibro Doctor even said that while drugs like Vyvanse and Adderall can be implemented for instant energy, their effect in the long term can be a “disaster.”
I say this only to offer both sides of the coin. For those looking to remain hopeful, I found, in the course of my research, a variety of resources that vouched for Vyvanse as a valuable tool to help treat Fibromyalgia symptoms. Two users on this forum reported major effectiveness in terms of Vyvanse’s ability to combat their fatigue.
Nimodipine has been studied extensively in CFS patients. In one such study, it was found to vastly ameliorate twenty five patients’ memories, immune systems, pain and fatigue. As a dihydropyridine calcium channel blocker, Nimodipine promotes blood flow to the brain, jacks up energy levels, treats migraines and improves exercise tolerance.
This potent compound derived from Griffonia seeds has been proven to treat Fibromyalgia across innumerable clinical studies. By causing a reduction of pressure points, 5-HTP diminishes the acuity of pain in the human body and improves the quality of sleep. This leads to patients feeling well-rested and less fatigued.
There are a host of natural herbs and supplements out there that are promoted as helping to alleviate the symptoms of CFS and Fibromyalgia. They include green algae supplements, St. Johns Wort (personally, I obtained absolutely no relief from this one), Ginseng (ditto, no relief on my part), Ginko-Biloba (not me), L-glutamine and Bacopa. Dr. Downing-Orr has suggested ginko-biloba works well in concert with L-glutamine and evening primrose oil. As with most things in this world, these might work for one person, but that doesn’t mean it will work well for all people.
Everyone is different and I strongly encourage you to read up on all of the above and more to determine what might be right for you. Good luck, good dosing and, as always, emancipate your mind.