• 8 months ago

    Lessons Learned about Fibro Pt. 1

    Hello Everyone,
    I am writing this post in order to help others who have been suffering with this diagnosis. I was diagnosed with this and Chronic Fatigue Syndrome or CFS in 2012. At that time there was not a lot of information out there and even fewer doctors who had come across this. I was initially sent to a psychiatrist for "behavioral modification" in order to address this as it was much more commonly thought to be a psychiatric disorder instead of a neurological one. Thankfully the consensus has changed and there are more out there that do recognize this as a physical entity with overlapping mental health aspects. I will discuss more of the mental health in a moment. First I would like to take a moment to talk about the physical portion.
    I am not a doctor nor am I a scientist, however, there are a lot of things that I have tried and there are a lot of things that I have observed. Please understand that what I present to you are all things that have not been "scientifically" proven. Also, what works for one may or may not work for all so please, use your own best judgement in response to anything you read in my posts. Now that the "official" stuff is out of the way I will start in.
    I have noticed that there are certain similarities among those that have experienced this illness. The first is that a significant back or spinal injury has happened to most. Illnesses such pneumonia, hepatitis, mono, staph infections, and other invasive types have occurred within ten years prior to a back injury that predates the onset of fibro. Fibro mimics lupus, MS, and at times parkinsons, as well as transient ischemic attacks. The major differences in these illnesses between fibro and the others is that the others show up on medical tests. I will say again that what I am saying are only observances that I have made. I do not have any correlating evidence. There may be a link in the way that fibro comes about. I am purely speculating that there is a potential genetic predisposition that becomes activated when an injury occurs that leaves the spinal fluid/cord exposed to an infection that then triggers the illness. Once the illness is triggered the body's response becomes one of almost continuous activation of the adrenalin hormone in the brain which can then rewrite how the respondent nerve endings process pain signals. This could explain why when we are in pain it is difficult to process higher thinking such as problem solving, complex communication, or complex emotional response sequences. This is only a theory.
    I have many in the medical profession who have told me that fibro is not a progressive illness yet I have many occasions where in my symptoms become much worse and then lighten up. Over the years the "episodes" I have experienced have increased not only in duration but in intensity. I have gone from being able to be fairly active to partially paralyzed and bed bound then back to active. I have had temporary blindness at one extreme and severe light sensitivity at the other. My body can go from being painfully sensitive to touch so much so that just wearing clothes is too much all the way to being completely numb no matter what the stimulus. I have repeatedly been tested for everything under the "sun" to determine a "true" diagnosis with the medical community coming up with blanks. This is incredibly frustrating as well as baffling. If you are in this position understand that you are not alone in this. You are not imagining things and yes your body is doing it's best to confound you.
    On the bright side there are some good observations that just may help you out. Pay attention to the weather. When low pressures exist in the atmosphere you are more likely to feel the effects of fibro much more. When the pressure is high you have a good chance of feeling pretty good. Warm is better than cold but hot is too much. Try to find the balance that works best for you. Pay attention to the temperatures, the pressure, the amount of sun that makes you feel your best. Some that I know have found great relief in acupuncture, alpha stimulation, tens unit machines. Personally I have found that meditation, time in a heated swimming pool a couple of times a week, some yoga (fused so can only do a bit), tai chi, easy hikes, and socializing have helped me more than a lot of the drugs that get prescribed. Being active when it hurts can be a real challenge but trust me when I say that even a small amount of movement everyday will help much more than not. Don't try to climb Mt. Everest, set small goals and achieve them. I moved into a two story house with the simple goal of being able to use the stairs ten times in a day. Might not seem like much but it can be a lot on certain days!
    Eat healthy and light. Not only can the medications upset how your body breaks down food fibro can do quite a tricky job as well. Experiment with different types of food to see what your body can work with. I spent five years in unbearable stomach pain due to not understanding how my digestion had changed. Pay attention to how food makes you feel. Pay attention to how much water you are drinking and your appetite. Talk to a nutritionist to help design a food plan that will help you. If you find that you are not eating or drinking a lot you need to reach out to your doctor. Those are warning signs you have to pay attention to. Also, be aware that pain does funny things do us. I have stood for ages in front of an open refrigerator door in great pain looking for something, anything that would help. Sounds stupid but it does happen.