The Fibro Fairy and I Don't Get Along

I have been asked many times what it is like to have fibromyalgia. I have lots of analogies to help people understand in a nutshell but it's different for everyone. I think you first have to understand the very basics about the disease.
Fibromyalgia is an autoimmune disease that lives in your spinal fluid. Living there gives it access to you entire nerve network as well as your muscles and your immune system. It's also a bully. It never shows up alone. It always brings a friend. For some it's IBS. For others it's migraine or another autoimmune disease. It actually has around 90 different friends it can team up with to kick your butt on a daily basis. With me, it brought cmp - chronic myofascial pain. CMP is a tough opponent all by itself and in my case I think I was diagnosed backward. CMP is not an immune response initially. CMP comes from repeated physical trauma. Fibromyalgia is hereditary, passed from Mother to child. Usually Mother to daughter.
Now, don't go thinking my husband beats me. He doesn't. My childhood was a slow walk through a special part of hell and I was badly injured while working in a nursing home in my early 20's. CMP and Fibro work hand in hand to knock me down daily. They didn't realize how stubborn I am. I keep getting back up.
This past winter the getting up has been harder. Pain with fibro varies from being stabbed all over with an ice pick to intense muscle spasms that stop you in your tracks to feeling like someone poured a layer of gasoline in the space between your muscles and skin, all over your entire body and then lit it on fire.
The longer it goes uncontrolled, the more hyper-sensitive to pain you become. The other day, I very lightly stubbed my pinkie toe. It should not have hurt at all but it dropped me. Pain shot straight up my leg, into my stomach making me nauseous and I just sat on the floor clenching my teeth until it passed. It really made me mad because that just should not have hurt at all! I often think it's stupid to hurt this badly. I bruise easily, which irritates my husband because he knows that each bruise was agony initially and I didn't tell him about it and let him hug me like a child. It's a really irritating disease.
Those of us with chronic pain have become experts in medications and nutrition. It becomes a quest to find ways to drastically minimize the effects so we can live semi-normal lives. I have become a clean eating proponent because I know how much it helps me. I refuse the new medications because they are dangerous. I go old school. But sometimes, like tonight, it doesn't matter what medications you have in your arsenal or how well you are eating or exercising, sometimes your the windshield. Tonight I'm the bug. No sleep for me. The pain is too great. Sleep is a battle with fibro anyway. I can not fall asleep without help. No sleep means no R.E.M.  No R.E.M. sleep means no healing from today's assault on my body which means tomorrows assault will have a cumulative effect and the pain will be worse and then I will hurt too much to sleep tomorrow night and the cycle will continue until I finally just pass out from exhaustion. Then the worst part of it will ensue....fibrofog. I HATE fibrofog. That is when you can not remember what you were supposed to be doing, where you put your coffee cup (knowing you just set it down), feeling like you are sleep walking through your day. My family often tells me that I will tell them the same thing two or three times a day during fibrofog. Well, that's because something important popped into my head that you needed to know and I honestly don't remember telling you the last two times. And hey, if I'm saying the same thing over and over and can't remember doing it, at least you know I'm not lying to you! :)
Fibrofog and fibromyalgia mess with your short term memory. You transfer short term memories to long term memories during R.E.M. sleep. Without sleep and then add fibrofog, you lose those short term memories. I can only remember major events from my childhood and I have lost much of my children's childhoods. That is why we take so many pictures so I can trigger those memories and they won't be forever lost to me.
I am extremely fortunate in that I have a husband and children who understand what is happening to me and help without offending me. They don't treat me as an invalid. We handle it with humor and they gently guide me to help me remember things like where did I put my list of things to do today? I am a list maker. I sit down at night while my mind is clear and write down all that I need to do the next day. My big challenge is not losing that list!
Fibrofog comes and goes. It's awful during a flare, which I am currently going through. But while I may not be able to get out of bed because of pain in the morning, I know that it will subside and life will keep moving. Most of all, I know that no matter how bad the flare ups get, I am one blessed woman because I have a family who understands and loves me. My son said 'God Mom. It must suck to be you." Ummm not so much. Some things suck and I would like to punch the fibro fairy in the throat but other than that, I'm good. I consider myself to be one of the lucky ones.
Too many people with this disease are not understood even in their own households. They are left feeling desperately alone. It's an awful thing to hear about. Like I said, I am blessed. I might be in a daily battle and I might get knocked down. But by God's good grace, a loving family and the extra large dose of stubbornness that I was born with, I'll get through this and I will enjoy my life in the process.
There is a whole lot more to fibro and cmp but now you have a solid view of what daily life is like. So if you know someone with fibromyalgia or any autoimmune disease, cut them some slack. They didn't ask for this and they are doing combat every single day just to stay on their feet. They are not their disease. In fact, they are probably the strongest people you will ever meet. I know. A lot of them are my friends and I am awed by them.
If you want to know more, there is plenty on the web and I will be talking about it from time to time as it aggravates the tar out of me. But if you have questions, feel free to ask. I do not mind a bit. In the meantime, I hope you are all sound asleep! :)