A quote from Einstein says that the definition of insanity is doing the same thing over and over and expecting different results. I guess then, in addition to fibromyalgia, I must be suffering from insanity. You be the judge.
1. I'm in pain every day. (Fact/Thing I Want To Change)
2. I take the same medications every day. (Doing the same thing)
3. I eat the same type of food every day. (Doing the same thing)
4. I believe or tell myself that tomorrow will be better. (Expecting a different result)
5. I don't feel better tomorrow. I always have pain. (Getting the same result)
So, what do you think. Am I insane?
Monday, June 21, 2010
Turn Of The Coin
Poop & Tuna
So, for a couple of weeks I've been a good girl and taken all of my meds including the pain meds. The problem with pain meds is when you take them regularly, you get constipated. I mean, you can't poop to save your life. I'm eating bran, raisins (hate prunes), trying to be active, I'm doing everything that usually works and BAM!, the plumbing backs up. So, I'm telling my husband about it, looking for ideas, looking for help because I'm going to have to cut back on my pain meds for a couple of days and I know I'm gonna hurt like a mother and my almost four year old says, "Poop is a bad word!" I'm thinking, good thing I didn't say, "I can't take a shit to save my life!" Anyways, for some reason, being constipated, cramping up, and experiencing severe fibro pain did not stop the laugh that came from the bottom of my belly. I can just picture our family using the word tuna in place of every other word you can think of for poop. Husband "What 'cha doing in the bathroom for so long? Are you okay?" Me, "Yeah, I'm just trying to push out a huge tuna."
Do Not Pass Go
You can't win when you have severe fibromyalgia. You can't plan anything because you could wake up tomorrow hurting so bad that holding the urine in your bladder all day would be more acceptable than having to roll over (Oh God, that hurts), have to move your legs to a position that they could touch the floor (There are no words to describe this pain), then actually put your feet on the floor (Holy tuna), and then stand up (Are you f***ing kidding me). By the time you've actually reached a standing position, you might as well motor because laying back down will hurt just as much. So, you head directly to the bathroom. Do not pass go (say hello to your family), do not collect $2000 (your meds) because once you're moving forward, stopping before you reach your goal is not an option.
Miracle?
So, as I've stated before, I've been taking my medications regularly so in my mind, I should be done with experiencing the above paragraph on a regular basis. I figure, hell I'm following the doctor's instructions, so it's gonna get better. Honestly, that's what I was hoping for, but I had some doubts that it would actually work. So, I did it. I upped my Vicodin to two pills per day, in pain or not. I decreased my fentanyl from 37 mcg/72 hours to 25 mcg because it was causing me tummy trouble we (me and doc) thought. I went back on Klonopin and Flexeril everyday and continued to take my Lyrica. I was so surprised. I felt better. I did have the "tuna" problem, but I could work that out...no pun intended. For five days straight, I felt almost good. I still hurt wh
en anyone touched me, but I could function enough to leave the house. It was a mini miracle.
WTF
Then, Saturday morning came in with a crash. I woke up aching at around 4am and went back to sleep. Should have taken my Vicodin then, but figured I'd be okay until my regular schedule. I wasn't. It was hellish! To go back to aching, burning, hurting everywhere without even having to move was going to be my ruination. To realize that something that I don't even know that I did put me right back in the hole that I've been fighting so hard to get out of was so disheartening. It might as well have been the turn of a coin because I have no clue what I did wrong. That's the thing with fibromyalgia. You don't know. All the best laid plans and such don't seem to matter. You see they do and they don't. You can push yourself to the point of exhaustion and cause a flare. That makes sense, so don't do that. On the other side of the coin, you could relax watching movies and baking cookies with the family all day, enjoying every moment and cause a flare. Now, that doesn't make sense.
Dragons
I kind of look at my fibromyalgia like I would a dragon. It is an almost inpenetrable, gigantic fire-breathing animal with long, sharp talons. On close inspection, it seems impossible that anyone could ever slay it. But, this summer, I saw this cute, funny, touching children's movie called How To Train Your Dragon. Reflecting on that movie got me thinking. Maybe my dragon, fibromyalgia, can't be slayed, but could be trained. It doesn't mean that it would always follow my lead (hell, my dogs don't) and, sometimes it would get out of control, breath it's fire and weild its talons, in which case I would have a flare, but in the end at least I'd have some control. The reality is that my fibromyalgia isn't going away anytime soon. So, I'm going to have to learn to handle it. Us fibromights, so named because we are mighty, need to take our meds, be as active as works for us, plan to rest whenever we need it, throw guilt out the window, and enjoy every good moment we get. This is not an easy thing to do, but neither is training a dragon. All dragoning aside, there are going to be ups and bottom of the barrel downs, but as long as you can remember that there will be a good day again, sometime, then each one of us can get through this.
So, for a couple of weeks I've been a good girl and taken all of my meds including the pain meds. The problem with pain meds is when you take them regularly, you get constipated. I mean, you can't poop to save your life. I'm eating bran, raisins (hate prunes), trying to be active, I'm doing everything that usually works and BAM!, the plumbing backs up. So, I'm telling my husband about it, looking for ideas, looking for help because I'm going to have to cut back on my pain meds for a couple of days and I know I'm gonna hurt like a mother and my almost four year old says, "Poop is a bad word!" I'm thinking, good thing I didn't say, "I can't take a shit to save my life!" Anyways, for some reason, being constipated, cramping up, and experiencing severe fibro pain did not stop the laugh that came from the bottom of my belly. I can just picture our family using the word tuna in place of every other word you can think of for poop. Husband "What 'cha doing in the bathroom for so long? Are you okay?" Me, "Yeah, I'm just trying to push out a huge tuna."
Do Not Pass Go
You can't win when you have severe fibromyalgia. You can't plan anything because you could wake up tomorrow hurting so bad that holding the urine in your bladder all day would be more acceptable than having to roll over (Oh God, that hurts), have to move your legs to a position that they could touch the floor (There are no words to describe this pain), then actually put your feet on the floor (Holy tuna), and then stand up (Are you f***ing kidding me). By the time you've actually reached a standing position, you might as well motor because laying back down will hurt just as much. So, you head directly to the bathroom. Do not pass go (say hello to your family), do not collect $2000 (your meds) because once you're moving forward, stopping before you reach your goal is not an option.
Miracle?
So, as I've stated before, I've been taking my medications regularly so in my mind, I should be done with experiencing the above paragraph on a regular basis. I figure, hell I'm following the doctor's instructions, so it's gonna get better. Honestly, that's what I was hoping for, but I had some doubts that it would actually work. So, I did it. I upped my Vicodin to two pills per day, in pain or not. I decreased my fentanyl from 37 mcg/72 hours to 25 mcg because it was causing me tummy trouble we (me and doc) thought. I went back on Klonopin and Flexeril everyday and continued to take my Lyrica. I was so surprised. I felt better. I did have the "tuna" problem, but I could work that out...no pun intended. For five days straight, I felt almost good. I still hurt wh
en anyone touched me, but I could function enough to leave the house. It was a mini miracle.WTF
Then, Saturday morning came in with a crash. I woke up aching at around 4am and went back to sleep. Should have taken my Vicodin then, but figured I'd be okay until my regular schedule. I wasn't. It was hellish! To go back to aching, burning, hurting everywhere without even having to move was going to be my ruination. To realize that something that I don't even know that I did put me right back in the hole that I've been fighting so hard to get out of was so disheartening. It might as well have been the turn of a coin because I have no clue what I did wrong. That's the thing with fibromyalgia. You don't know. All the best laid plans and such don't seem to matter. You see they do and they don't. You can push yourself to the point of exhaustion and cause a flare. That makes sense, so don't do that. On the other side of the coin, you could relax watching movies and baking cookies with the family all day, enjoying every moment and cause a flare. Now, that doesn't make sense.
Dragons
I kind of look at my fibromyalgia like I would a dragon. It is an almost inpenetrable, gigantic fire-breathing animal with long, sharp talons. On close inspection, it seems impossible that anyone could ever slay it. But, this summer, I saw this cute, funny, touching children's movie called How To Train Your Dragon. Reflecting on that movie got me thinking. Maybe my dragon, fibromyalgia, can't be slayed, but could be trained. It doesn't mean that it would always follow my lead (hell, my dogs don't) and, sometimes it would get out of control, breath it's fire and weild its talons, in which case I would have a flare, but in the end at least I'd have some control. The reality is that my fibromyalgia isn't going away anytime soon. So, I'm going to have to learn to handle it. Us fibromights, so named because we are mighty, need to take our meds, be as active as works for us, plan to rest whenever we need it, throw guilt out the window, and enjoy every good moment we get. This is not an easy thing to do, but neither is training a dragon. All dragoning aside, there are going to be ups and bottom of the barrel downs, but as long as you can remember that there will be a good day again, sometime, then each one of us can get through this.
Thursday, June 17, 2010
Sleep
What a precious commodity to every human being. If you are well, lack of sleep can make you a little cranky. If you have fibromyalgia, lack of sleep, which most of us wrestle with daily, means the difference between having a reasonably normal day with pain and an out of this world, want to go to the hospital, will kill anyone who looks at you sideways, God aweful, head to toes, even your eyeballs hurt day of pain. No kidding, a nice checkout clerk could ask you, "How are you today?" and you could go all Rambo on her butt because you've been stupid enough to leave the house on a day when you haven't gotten enough sleep and you are in enough pain that running cute little chipmunks over with your car seems like a good idea. So, sleep in the life of someone with fibromyalgia is very important. If you are reading this as a family member of someone who has fibro, I'm just giving you fair warning. Unless the house is burning to the ground, don't wake up your loved one with something as petty as, "Mom, can I go to the mall with Cindy?" You might not like the response.
Wednesday, June 16, 2010
Drugs
In The Beginning
I've always had a mind over matter attitude. Since I was a teen, I've had constant pain; pelvic pain, migranes, back pain, knee pain, pain in my hands, general aches, then a ten year headache caused from a bulging disk in my neck. All of this pain came before my fibromyalgia. During that time, I had to make adjustments, rest, and/or take iboprofen, but I've always bounced back and been able to go on with my life. Fibromyalgia is the first thing that has actually knocked me down to the point that I can't get up, literally. Because the pain encompasses every part of my body, I can't "think" it or "walk" it away. So, like to many other people, my journey started with medicine.
Medicines I've Tried
-Over-The-Counter - Everyone starts here, with the simple over-the-counter pain relievers. For some people Tylenol, Aleve, or Advil can be very helpful. For me, not so much.
-Topical Analgesics - This covers things like Bengay, Aspercreme, Capzasin, but my favorite one is Salonpas. You have to investigate which works best for you, but for localized pain these can do wonders.
-Muscle Relaxant - There are a variety of muscle relaxants, but the one that I've used most and still use is Flexeril. For me it helps with sleep and muscle tightness.
-Antidepressants - There are tricyclic antidepressants, SSRI's, SNRI's. Different people react differently to the large range of medications in this family. I have personally been on nortriptyline, zoloft, cymbalta. Nortriptyline was great for sleep. Zoloft helped with my seasonal depression. Cymbalta worked for my depression also.
-Antianxiety - I do not have a long history with drugs in this class. I was on Xanax for a few weeks years ago. I recently started Klonopin which mostly helps my sleep.
-Seizure Meds - I believe that this class of medication is the newest to be used for people with fibromyalgia although there are many studies going on to find new drugs. Neurontin and Lyrica are in this class and are both used to treat nerve pain. I am currently on Lyrica which does help my pain.-
-Opioids/Narcotics - Opioids are a class of pain relievers that have a very high potential for abuse because they not only relieve pain, but can also produce a feeling of euphoria. Some opioids are Hydrocodone, Oxycodone, Morphine, Fentanyl. I am currently on hydrocodone w/acetaminophen and the fentanyl patch.
My Meds Now
Even though I've been on many of the above medications in the last two years, I've been fighting very hard to cut them back, not always with my doctor's approvals. I am currently on Lyrica, Flexeril, Klonopin, Fentanyl (patch) and Vicodin (as needed). This seems to be the best combination/agreement on medications that my doctors and I can come up with for now.
Why I'm Not Doing Better
In the last two years, I have not had a break in my pain. Part of this is my extreme reluctance to take my Vicodin when I need it. Logically, I know that I need to take the Vicodin so that I can function, but fear of what taking meds like these will do to me in the long term holds me back. I know that it hurts my family when I'm in so much pain that I can't get out of bed because I can't be part of their lives. So, for the last two weeks, I have been taking my prescription. While I am not close to pain free, I have been able to get out of bed every day. That's a huge improvement.
Sunday, March 7, 2010
Pain Is My Name
How Do You Classify Pain?
Pain. How do you classify it? Burning, aching, dull, shooting, tingling, constant, in the background ALL the time. If you go to the ER the nurses and doctors want to to rate your pain from 1 to 10. Okay, I can do that. It is all of the above. It all fits me and it never stops. When I say never, I mean never. On my best, mild pain days, it is always there in the background reminding me that I am no longer well. It hurts when I stand, when I sit, when I walk, or when I try to sleep. Pain dictates how I live my life. It shouldn't be that way, but it is. Every action/movement I make could result in severe, debilitating pain putting me in bed for days at a time. So, I have to be careful what I do and how I do it.
What Ails You?
According to the many doctors I've seen, I have fibromyalgia. The Mayo Clinic defines fibromyalgia is a chronic condition characterized by widespread pain in your muscles, ligaments, and tendons, as well as fatigue and multiple tender points - places on your body where slight pressure causes pain. In reading that definition, it doesn't really sound that bad. If you've seen the commercials for certain medications for fibromyalgia, they don't make it look that bad either. Just take our medicine and life will be all sunshine and rainbows. Coming from someone who is actually living with fibromyalgia...are you freaking kidding me. There are no rainbows over here. I think they're just trying to blow sunshine up my...well, you know where I mean. There is no one medicine, vitamin, exercise or treatment for fibromyalgia. Anyone who tells you differently probably wants your money. It takes a lot of trial and error to figure out what's going to work the best for you. I've been at it two years and still haven't figured it out.
Pain. How do you classify it? Burning, aching, dull, shooting, tingling, constant, in the background ALL the time. If you go to the ER the nurses and doctors want to to rate your pain from 1 to 10. Okay, I can do that. It is all of the above. It all fits me and it never stops. When I say never, I mean never. On my best, mild pain days, it is always there in the background reminding me that I am no longer well. It hurts when I stand, when I sit, when I walk, or when I try to sleep. Pain dictates how I live my life. It shouldn't be that way, but it is. Every action/movement I make could result in severe, debilitating pain putting me in bed for days at a time. So, I have to be careful what I do and how I do it.
What Ails You?
According to the many doctors I've seen, I have fibromyalgia. The Mayo Clinic defines fibromyalgia is a chronic condition characterized by widespread pain in your muscles, ligaments, and tendons, as well as fatigue and multiple tender points - places on your body where slight pressure causes pain. In reading that definition, it doesn't really sound that bad. If you've seen the commercials for certain medications for fibromyalgia, they don't make it look that bad either. Just take our medicine and life will be all sunshine and rainbows. Coming from someone who is actually living with fibromyalgia...are you freaking kidding me. There are no rainbows over here. I think they're just trying to blow sunshine up my...well, you know where I mean. There is no one medicine, vitamin, exercise or treatment for fibromyalgia. Anyone who tells you differently probably wants your money. It takes a lot of trial and error to figure out what's going to work the best for you. I've been at it two years and still haven't figured it out.
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