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My Relationship with Fibromyalgia

This is “literally” a painful topic for me to write about, especially being labeled a hypochondriac by uneducated hateful and healthy people. I have lived with this monster nearly 20 years, longer than any relationship I have ever had, besides my 28 years as a mother and it’s unbelievable to even type that knowing it has stole nearly half of my life. Not one day since officially & on record diagnosed since May of 2001 have I known a day without pain. Even through my early teens I suffered with the early signs so I don’t really know what life is like or remember what it was before it. Understanding fibromyalgia; a name given in 1976 a Latin word “fibro” (fibrosis) & Greek term “myo” (muscle) & “algia”( pain). In 1990 the American College of Rheumatology established guidelines for diagnosing Fibromyalgia. Understanding Fibromyalgia is difficult especially if you do not have extensive medical knowledge. It is a very complex medical condition that involves every part of your body including your brain and nervous system. Most of the smyptoms associated with fibromyalgia come and go, usually coming back more intense. All fibromyaglia sufferers agree the pain never subsides. Having fibromyalgia is comparable to having the flu every day of your life. You would think that if someone was experiencing that level of pain and discomfort there would be a clear defined visible and obvious reason and that pain should not jump from place to place. Why is just a light touch to the body hurt equally as bad as someone landing you a left hook? Why does your skin feel like you have been sitting in a furnace? I can say with confidence, no matter how hard one tries to understand it as a non sufferer you will not, as sufferers we still do not.

It is very confusing. Combined with the slough of negative medical test, with my opinion patients being emotionally abused by the medical industry through the years, telling them it was all in their head, this leading to mulitiple suicides. I, just like many other sufferers considered this as my only option to relieve the pain and along with how we are treated. However, in the last few years a host of scientific evidence and research studies have revealed this is a very real condition that plagues thousands of sufferers.

Imagine that you were planning a bridal shower and was expecting only 20 guest, 3 of your friends said not to worry that they would come early to help, but they never fulfilled their promise. Now instead of 20 a 100 guest have showed up and you now are overwhelmed. This is what is happening with our pain signals. Our pain cells send to many pain messages “guests” up to 5x the amount of a normal healthy person, causing even the simplest of things like mild pressure, headaches, and itches to into extreme pain. When these unwanted guest send pain signals to our brain they are processed by a little thing called serotonin. Sadly it is something we do not have or produce, you know like the friends that did not show up like they promised. This explains why we have pain in tissues and organs that show no signs of damage. It is not in our heads or something imagined, it is misinterpreted sensations from poor communication between our pain receptors and our brain that signal we are in extreme pain for which we feel. Our brains are actually lying to us, however we are not lying to others. These unwanted guests amplify a host of other signals or triggers turning up the volume to 60. Everything in our brain detects light, noise, odor and our pain. This leads to sensory overload causing anxiety, fear, and panic attacks. Most people with chronic illness like fibromyalgia are sick the majority of the time. It is hard for people to see why we can not make our lunch date on Monday, but Wednesday we are hiking 5 miles. Often this is why people have said “she is not sick, she is just lying to get attention.” Not sure who would want to be in pain for negative attention.

When we get stressed, our symptoms get worse. Imagine your worst day ever and all you want to do is go to sleep but your awaken by your husband snoring loudly all night and the neighbors dog barking. In the following morning your are so desprately tired, rushing around the house trying to get the kids off to school and on your way to work you realize you left your wallet and have to turn back, but now more problems are on their way. You hit a traffic jam making you 20 minutes behind, so you try to speed up and suddenly a dog runs out in front of you and you have to swerve to avoid a car accident spilling your hot coffee all over your lap. That is just the start of your day. You still need to  grocery shop, cook dinner, clean up, do the laundry, help the kids with homework, take the dog out, pick out the clothes for the next day, pack lunches, answer emails, the door, the phone, get the kids to bed, only to finally hit the bed to your snoring husband & alarm that already reads 2 am and set to go off in 4 hours all while your dealing with the pain of the restless leg, painful periods, memory loss, muscle twitches, itching, burning of your skin, migraines, jaw pain, bladder, kidney pain, back and neck pain, severe chest pains, shooting, burning, throbbing, aching, stabbing, stiffness, food allergies, wheezing, nausea, acid reflux. All while being exhausted in a fibro fog on repeat and in slow motion while under the microscope of denial from people who call you a lazy liar that will never experience any of your pain. Could you do it? Fibro sufferers were never asked this question, we literally woke up one day to this complexed condition. After years of being a Guinea pig to the medical community, multiple tests, treatments, along with trial and error medications. I decided 2 years ago to go completely natural after an Emergency room visit nearly dying from fentanyl patches as my doctor of 17 years had me over medicated on lethal combinations of drugs.

“The perfect storm” I was just doing what I was told in hope’s of relief & a “normal life” all the while destroying organs to the side effects & most definitely not experiencing a normal life. So I thought what the hell do I have to lose, I tossed the meds in the trash, fired my doctor and said I can do this, I’m in pain with the medication & Doctors anyway so let’s try it without either of them. Well I have never even smoked a cigarette but had been prescribed some pretty strong pain medication and nerve blockers. I heard all the horror stories about the withdrawals and how I would probably need help to stop taking them… Well you become pretty strong when you’re a chronic pain sufferer, they were wrong. I prayed day and night as I would sweat and  shake  and yes ,even crying out to God 5 days straight but I did it and never looked back. I faced Fibromyalgia right in the eyes and said “You will not kill me Satan”. While fibromyalgia itself doesn’t kill you the medication takes its toll on your body and mind with absolutely zero benefits. It’s no more than a bandaid on an opened wound that needs air to heal. I was no longer going to be a prisoner to the 4 walls of my little world, I was no longer going to be lied to by this monster. I gave up meat, gluten, processed foods, started walking everyday at a minimum 5 miles, yoga everyday for 30 minutes, meditation, journaling, alot of praying, went back to school finished my degree, shortly after opened not one Business but 3, went back to work, traveled the world, sky dived, swam with dolphins, hiked the highest mountains, and swam in 3 oceans. While my lifestyle changed it didn’t cure me as there is no cure, or Morgan Freeman or Lady Gaga would have bought it , you see fibromyalgia does not discriminate against color, gender, fame, or large bank accounts. However, It did equip me with the tools I needed to face the devil in my second half of my life. Fibromyalgia much like him coming to kill, steal, and destroy. I took charge of my life instead of allowing fibromyalgia to do so and said “Get behind me devil”. Yes I am still in pain everyday but I am living, truly “living” through my pain. Don’t get discouraged you are a warrior God chooses the strongest to fight battles we will never understand, but we are instrumental in the fight for a cure. If there were not sufferers there would not be breakthroughs. So for now we must endure. For me I’ll do anything for my girls and grandchildren if it means mama & nana must go through in Hope’s that they do not experience it all their lives as I have, 2 out 3 of them are showing signs in their early 20’s just as I did, so than here I am devil… I wrote this with much tears & saddness thinking of the loneliness I know this condition brings, and that someone out there feels all alone or that they are different or branded in someway or being punished for something they didn’t deserve. Remember the devil is a liar and so is Fibromyalgia you are not alone & on the days that you feel you are I  follow groups where I have formed friendships that will last a lifetime, reach out to them sadly you are not the only one suffering with this monster & there are fibro brothers and sisters willing to talk you through the pain & even cry with you.. I will link below the group’s I personally follow and also here for anyone who needs me, feel free to message me. Don’t give up, you are beautiful, strong and a warrior! GENTLE HUGS.

P.s. I kept the snoring husband, I just invested in some really good ear plugs 🤣 Fibromyalgia solutions and support, Mothers with fibromyalgia, Living with Fibromyalgia and hundreds more 😉

Feel free to share your fibromyalgia stories or tips Gentle Hugs