Fibromylagia pain is bizarre, unrelenting, widespread, and I sometimes think of it as a living thing inside my body. While science does not fully understand it, so far all the research points to a problem in the brain and the way interprets signals from the body, misinterpreting normal signals as pain. There is nothing at all wrong with any of the areas of the body that feel pain.
The worst part of FM pain is that painkillers are ineffective. Whatever pain you have, you just have to ride out. Why this is so is not completely understood, like just about everything else concerning fibromyalgia.
A 2007 study from the University of Michigan Health System found that patients with fibromyalgia had reduced binding ability of a type of receptor in the brain that is the target of opioid painkiller drugs such as morphine. A 2011 study published in the American Journal of Medicine showed little benefit from opioids for those diagnosed with fibromyalgia, while there are many possible negative consequences. The study does point out that opioids are frequently prescribed to FM patients, though. It is just that the current science shows that they probably do more harm than good.
Ironically, since it is misinterpretation by the brain that causes these sensations of pain, some types of pain are intense enough to give me a headache. Take that, you misintepreting brain! The headache is real pain. I can take Acetaminophen, and it will help my headache, but do nothing at all for any of the other pain. No pain medication I have tried, including Vicodin, seem to have any effect.
The usual suspects may not work, and popping a pill when you have pain is probably not an option. What does seem to help are drugs that you take on a continuous basis. For me, milnacipran (Savella) has clearly reduced my pain levels. It has also done a lot more for me, as you can read in my Return from the Abyss entry. Others report reduced pain using pregabalin (Lyrica), duloxetine (Cymbalta), and milnacipran (Savella), and the more narcotic-like painkiller tramadol (Ultram). For some, over time, the pain reduction effects of these drugs seem to be reduced, which is why a strategy of switching them around every so often works for some people.
The only opiod approved by the FDA for fibromyalgia is Tramadol (Ultracet), a combination of the synthetic opioid tramadol and acetaminophen. That might help my pain and my headache, although I have yet to try it. In reading the review boards where people describe their own experiences, it seems to be, like all FM drugs, very hit and miss. It helps a little for some, much more for some others, and does nothing for many. It can keep you awake at night, which is counter productive, and the long term effects are not clear. It can also be addictive, but when you have what is basically permanent pain with no cure, this is the least of your concerns if it works.
I have found that exercise helps. It is really really hard to exercise when you are in pain, and you can not do intense exercise. That can be a pain trigger. Even when I hurt, I try to walk regularly. It seems to help me, and the science so far seems to indicate that it is generally helpful to FM patients in reducing pain.
Many FM sufferers have sleep problems, and I do notice that I have more pain when I do not get enough sleep. It is sort of a vicious circle, as when I have the rack pain I toss and turn all night unable to get comfortable and waking frequently. This might be why this sort of pain tends to last so long, as I have to get to the point of utter exhaustion before I really sleep.
There is acupuncture, but the reports are mixed. It does seem to relieve pain in some, but is not a long lasting solution, providing only temporary relief. My pain is constantly changing, and I can never predict when it will be mildly annoying or truly disabling. There is no way to schedule a treatment fro when I might really need it. For those who have constant disabling pain, a short period of relief might make sense. There is a second reason this has so little appeal to me. So much of my pain has been the stabbies (see my Words for Snow entry) where I feel like I am being stabbed. While at this point I could care less about the pin prick of shots or having blood drawn, I don't want to be stabbed for real to deal with my pain. Psychologically, this just has no appeal at all. It also almost seems like a homoepathic “like heals like” approach, and I detest homeopathy, and you'll learn why in upcoming entries about quack medicine.
I have a thought about accupuncture, completely unsupported by any science whatsoever, and not based on any direct personal experience with it. So take it for what it is worth. Sometimes I have small areas of pain. I have discovered that by pushing down on these areas very hard, enough to induce a real pain response, it can sometimes seem to reset the pain. It might be that the real pain resets the fake pain signal. It might also be why the Tens system (transcutaneous electrical nerve stimulation), which provides a continuing electrical tingle, seems to work for some, although it did not work for me. It does not seem to work when I have larger areas of pain, or more intense pain. I just wonder if there is any similar underlying root effect between my pressure technique and accupuncture.
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