I blog mostly about fibromyalgia and chronic migraines (although I have hypermobility syndrome, asthma and hypothyroidism as well)
Introduce your condition(s) to other Health Activists. What are 5 things you want them to know about your condition/your activism?
1- fibromyalgia is a syndrome with many symptoms but the key ones for diagnoses are widespread pain lasting longer than three months, sleep dysfunction and fatigue.
2- cognitive dysfunction is also an issue with FM and studies have been shown this is not a result of poor sleep or depression but rather due to the pain. Pain impairs the ability to concentrate and focus. “FM patients performed more poorly than their age counterparts on all aspects of the study such as working memory, free recall, recognition memory, verbal fluency and vocabulary with the sole exception of information processing.” cognitive dysfunction and fibromyalgia
3- Sleep dysfunction with FM, in general, is an overall unrefreshed sleep, studies have shown we have disrupted stage four sleep patterns which is the restorative sleep and so even if we sleep ten hours we wake up feeling like we had very little. Also, 80% of growth hormone comes from delta sleep and the lower levels of growth hormone contribute to many things including increased muscle pain. However, other sleep dysfunction include frequent wakings, delayed onset insomnia, grinding teeth, hypnotic jerks, restless leg syndrome and sleep apnea.overview of FM and sleep dysfunction
4- There are three specific drugs treatments of FM: Lyrica, Cymbalta, and Savella- none of which statistically have proven to be that effective. I take Lyrica and do find it to have some effect.
5- The worst thing by far about FM as an invisible disability is the doctors and researchers who do not even believe it is a real condition despite the brain scan evidence or neurotransmitter irregularities or high levels of substance P found in FM patients. This is because there is no known cause yet although recent research is along the lines of neurological or neuroimmune. Having a condition that is still debated like this means you cannot expect to get great treatment or even good treatment or even… treatment. Sometimes the stigma is horrific. However, there are good doctors out there, you just really have to hunt them down.
1-chronic migraines means more than 15 migraines per month- mine are currently daily.
2-migraines can occur with or without aura- mine does have an aura but what I would like others to know is that this can be more complex than sparkly lights. It can include numbness and tingling, nausea, speech problems, problems with writing, problems with hearing, a variety of visual auras, balance problems, vertigo.
3-migraines are not headaches they are a neurological disease. The pain experienced is, in fact, a symptom and is not necessary to the phenomena… some people have what is referred to as a silent migraine that involves the symptoms in #2 but without the pain. To describe it as a headache can be very insulting.
4-In some cases people such as myself experience some neurological phenomena outside of a migraine episode. Such as a persistent migraine aura… have a visual aura of some sort outside of a migraine attack, like halos, scintillations, warping objects, flickering visual field and many more. Under this category is often placed visual snow, the staticy snowy moving visual phenomena that are constant which I also have. Another separate phenomenon that I also experience is called Migraine associated vertigo (MAV) or episodes of vertigo triggered by motion or just randomly but again can occur outside of a migraine episode.
5- Lastly I think it is vital that people know migraines can kill. Whether by the increased risk of stroke and heart attack or by suicide. I have heard of many suicide stories and think every one of them should be the last. I myself could have been one of those stories because the pain can be that blinding and maddening. But I lived to tell the tale. All chronic pain can be devastating because of the level of pain and I think it is vital to remember that. When we are getting poor treatment and our pain isn’t being managed we are at a great deal of risk because we have this mentality that we must ‘push through the pain’, fight the good fight, do have we have to do… paying very little attention to the strain and consequences of pain until the cost is too high the bear, but yet we all know how difficult it is to get just help for pain management when medications are not working… so when the pain becomes a problem, well, we feel rather like we must simply cope with it or… not. Being aware that pain has a price and pain tolerance has a limit is a damn good thing because we then acknowledge doctors will not deal with the issue, or cannot, so managing pain becomes something more complex. Psychologists, for example, can help with coping strategies and meditation. Pain clinics may offer more alternatives. Physiotherapy helps with the neck and they can give you some nifty exercises. We learn we must expand our repertoire because doctors have very little of the answers to our survival.