It is 1 in the afternoon and I am still in my jammies (leave me alone Google Chrome!), dammit! I also still feel like I have cotton for brains. Is it the weather (cold front with rain) or is it the middle-of-the-night-sex that woke me up two nights ago? If only we lived closer to where my hubby worked. Then, he could come home for a little afternoon delight and I would get the endorphin’s (Google Chrome tells me I need the apostrophe, are they correct?) when I need them, not when I don’t. Since I can’t seem to get going in the a.m. and I’ve decided to be kinder to myself on this aspect, I’m going to have to completely revamp my schedule. I think it was too much to ask for anyway. Thanks to Jodi Ambrose for making me feel better about my night owl ways (http://jodiambroseblog.com/2012/09/22/tirade-time-oh-yeah-its-on-dont-read-if-you-dont-like-cussing-for-the-sheer-fun-of-cussing/). I used to be a morning person and the fibromyalgia and insomnia happened and I just can’t do it anymore. Vampires, I mean, Fibro-fighters, unite!
…with my head cut off.
That is my brain today. Not my body. My body could only manage like-molasses-running-uphill. My brain is jumping from one idea to another and worrying over one thing after another.
As my husband would say in his best Yoda-voice “Meditate You Must.” I capitalized all of those because every time I hear Yoda speak, I imagine him saying it like that.
I need to get back to my basic plan from my previous blog post. My 5 daily goals and that’s it!
I start reading blogs and before I know it, I am second-guessing myself left and right.
1. Shower every day. (done)
2. Do one load of dishes (next) or laundry (done) every day.
3. Write 5 positive thoughts about your life every day. (This has been the hardest one for me to do.)
4. Meditate or do yoga or some other relaxation technique every day.
5. Hug your kids and kiss your husband every day.
Ha! Reminder done! Jedi-high-five everyone (Whoosh*).
*Whoosh is the sound made when you use The Force.
I know that you are supposed to enjoy your time on this earth and be thankful for all you have, but can I just rant and wish for the future for a moment? I cannot wait for menopause! At least I think. Please correct me if I’m wrong, but having fibromyalgia and chronic pain and fatigue has got to be easier without the monthly aggravation (additional pain, nausea, fatigue) of PMS, right? Please, someone tell me that it gets better. Right now, I would not be surprised if there were little humanoid, clawed beings trying to scratch their way out of my uterus. My forehead feels like it’s the heaviest thing on my body and everywhere I look I see those shadowy images I get right before a migraine.
I have not had an issue with this in so long that I don’t know what to do with myself. Let me clarify. I have a hard time going to sleep but once there, I’m out. I still wake up tired and have fatigue but I was getting at least 6 – 8 hours of sleep a night. I take amitriptyline to help me sleep and that is what has helped me to sleep. Ever since I lowered my Lyrica though, I’ve been a little wonky. I was doing okay with one in the am and one in the pm but the last couple days I thought I’d test out just taking one at night. I guess I have my answer, huh? Trial-and-error really sucks. My doctor suggested taking it a month at-a-time but I don’t know if I can do this any more. Also, while driving to pick up my kids from school today, a moth flew at my windshield and I literally gasped and jumped. I’m lucky I didn’t jerk the steering wheel. I’m kind of bummed about this development because I was hoping I could function without the Lyrica, but I’m just too jumpy and jittery. I think I had an easier time going off of the narcotics. Too bad they don’t make something to wean you off of the Lyrica.
I am currently reading The Fibromyalgia Handbook: A 7-Step Program to Halt and Even Reverse Fibromyalgia, Third Edition by Harris H. McIlwain, M.D. and Debra Fulghum Bruce, M.S. I have to start out by saying that after my last post, I finished reading Step 1: Start With Medical Treatment and found that the author said almost the same thing I did.
“Although there is no quick fix, you can find success with treatment using a trial-and-error procedure.” (pg. 97)
While this is an extremely frustrating process and can leave you feeling like a guinea pig, with Fibromyalgia, there is little choice. That doesn’t mean that finding the correct mix of medications and supplements is impossible but it is different for everyone. My doctor made a very valid point to me. It was something that I had read before but didn’t really consider being a problem for me. Just because you have fibromyalgia, doesn’t mean you don’t have anything else. The majority of blogs I’ve read on Fibromyalgia are written by people suffering from more than just Fibromyalgia. My problem is that my old doctors were saying that all I had was Fibromyalgia and wouldn’t look at anything else or even consider that maybe my normal was different than the standard normal. As soon as I said the “F” word (Fibromyalgia), nothing else was considered. My doctor is currently running a clinical trial on me to see if thyroid medication would help me because I have almost every symptom of under-active thyroid. He also has me taking adrenal support and magnesium malate. My previous doctors wouldn’t even consider doing anything like that. My former neurologist also gave me a big speech about how the vitamin industry is not regulated and tried to tell me that generic medications are only required to contain 20% of the medication (according to my insurance company this is false). He really discouraged anything not put out by the drug companies. Step 1, in a nutshell, is start with moist heat twice a day and if you still have pain then add medications.
Step 2 is to exercise daily for mobility and energy. One of the big questions I had at the beginning of this chapter came out of this statement:
“…exercise is more effective in easing the symptoms of fibromyalgia than medication or alternative treatments.” (pg.99)
If exercise is so successful, why not start with that? I’m pretty sure that every doctor I’ve seen has suggested yoga, but I was reluctant to believe that yoga would cure all my ills. One of the hardest things for me to understand with this disease is that there is no quick fix and no magic pill. At least not yet. I’ve since started doing the stretches contained in Step 2 and have begun to notice the benefits. I listen to my body and when I feel the tightness start, I do the warm-up and then the stretches. I’m considering going back to a physical therapist, although the last time was torture. One of the ideas in this chapter that I really like is to warm-up and do stretches before doing daily living activities like showering, laundry, or dishes. My biggest obstacle to working out has always been that I don’t have time with all the other things I have to get done, especially when most normal daily living activities take all the energy I have. I also have the DVD Anchor Bay’s Healing Yoga for Aches and Pains (thanks again to my awesome library) and whenever I am at home and feel in a lot of pain despite all the pills I’m taking, doing just the first section of deep breathing and stretching helps. I would also like to try out the warm water pool we have nearby (25 min. drive) but I’m still waiting to hear on my disability appeal.
This chapter has a lot of great alternative ideas for getting exercise daily and explains how to divide your day so that you do get in the necessary exercise and stretching. I would encourage all my fellow Fibro Fighters to check out this chapter if you are having trouble getting motivated to exercise or if you are like me and just don’t think you have the time.
No experience necessary. If you are young, creative and muscular, then you are the one I am looking for!
Pre-Chew beef-jerky and rice-krispy treats (unless you have a better idea for how I can eat these without jaw and teeth pain the next day)
Assist me with any other dining related difficulties, including:
Taking my three-year-old to the restroom when she finishes eating and constantly asks to go, even when she just went. Prepare for at least 10 trips to the restroom.
Wrangling my three-year-old when she gets bored and starts running around the table full-speed while squealing with glee, tripping unsuspecting waiters and annoying everyone in her vicinity.
Chewing for me when my jaw starts to hurt, usually about 5-10 minutes into the meal.
Cradling my head and humming to cover up my snores when I grow too exhausted to stay awake. I would also appreciate a gentle reminder to close my mouth when I’m zoning out so I don’t drool. Don’t waste your time snapping in my face, I zone out all the time.
Summer: Being a human blanket for me in the sub-zero air-conditioning (I am always under the vent for some reason).
Winter: Being a human blanket in case of seating in the draft from the door or poorly insulated windows in the winter.
Warning: I do not mention pay because with the exception of pre-chewing and humming, my husband already does all of these things for me free-of-charge.
I know the title doesn’t seem like it should have anything to do with fibromyalgia, but my library has been so instrumental on my path to wellness. I’m not well yet, but I’m learning something new every day about fibromyalgia. I can’t tell you how many books I’ve checked out on the subject and I just requested more. The High Plains Library District in Weld County, Colorado is so wonderful. Even if a book I want isn’t at the library in my town, I can request it online or have a librarian request it for me. They make it so easy. If there is a book I want to read and the High Plains Library District doesn’t have it, I let them know and they get it. They also offer CDs,audio-books and e-books, which are especially nice for those with fibromyalgia because it is so much easier to hold an e-reader or listen on a laptop than to have to hold a book, hold the book open and turn the pages. I actually gave up one of my favorite activities, reading, for a while because when I tried to read my hands would shake, I’d get painful spasms and I couldn’t concentrate on what I was reading because of this. I now have a Kindle and I have perfected the art of book-propping to avoid hand and arm strain.
Here are some of the books I am looking forward to reading:
- Fibromyalgia: simple relief through movement by Stacie L. Bigelow, M. A. (ISBN: 0471348023)
- The Fibromyalgia Relief Book: 213 ideas for improving your quality of life by Miryam Ehrlich Williamson (ISBN: 0802775535
- Figuring Out Fibromyalgia: current science and the most effective treatments by Ginerva Liptan, M.D. (ISBN:9780982833971)
- From fatigued to fantastic!: a clinically proven program to regain vibrant health and overcome chronic fatigue and fibromyalgia by Jacob Teitelbaum, M.D. (ISBN: 9781583332894)
- Reversing fibromyalgia: the whole-health approach to overcoming fibromyalgia through nutrition, exercise, supplements and other lifestyle factors by Joe M. Elrod (ISBN:158054326X)
- What your doctor may not tell you about fibromyalgia: the revolutionary treatment that can reverse the disease by R. Paul St. Armand, M.D. and Claudia Craig Marek
I know that I’ve checked out some of these before but it never hurts to give something a second glance, just to see if you missed something or if you have an “Ah-ha!” moment. Right now I’m reading The Fibromyalgia Handbook: a 7-step program to halt and even reverse fibromyalgia by Harris H. McIlwain, M.D. and Debra Fulghum Bruce, M.S. Step 1 is “Start with medical treatment”. Um. Duh! I’m pretty sure that upon waking with the kinds of aches, pains and fatigue that go along with fibromyalgia, the first place most of us headed was the doctor. Included in this chapter are various methods of pain-relief like moist heat (Twice a day? How about all day?), NSAIDs, anti-depressants, muscle relaxers and every other drug that could possibly be available for fibromyalgia, as well as supplements (magnesium, malic acid, melatonin). Magnet therapy and Human Growth Hormone, are mentioned, as well as creams, liniments, lotions, injections, TENS and everything else you could think of or have been told MIGHT help.
I haven’t read beyond this chapter for good reason. How could a person read this and not be more confused than they were before? Every type of possible pain relief method is mentioned and they could all work or they might not. It’s up to the reader to figure this out? Really? First you have to find a doctor who is willing to try some of these things. My pain specialist got me off of the narcotics, which I am very thankful for, but has no other suggestion for me beside yoga. Really! I just do yoga every day and I’m all better? I did yoga yesterday, meditated for a while, but still had little to no energy, still had pain and still couldn’t sleep last night. Maybe today I’ll try my Leela by Deepak Chopra on the XBOX Kinect. Life with fibromyalgia really is all trial and error. Unfortunately, the price for my errors often leaves not only me suffering but my family as well. Mommy is grumpy/asleep/crying, the kids have to find their own dinner and the hubby gets no loving in any shape or form. I think the Fibro Response and thyroid are helping with some of the sensitivity and some of the pain but I really need something to give my energy a boost. Zoning out all morning and falling asleep after the kids get home is okay, if that’s the way it has to be, but there are so many things I could be doing if only I had the energy. I could even consider going back to work if I didn’t wake up feeling like a Mack truck hit me every morning. I think I need to re-read my goals/positivity post (It’s a lovely new day).
The point of this post was to say that libraries are great resources but I think I came around to say that you should try to educate yourself but do what works for you because with fibromyalgia, anything goes. Unless it doesn’t go. Then quit doing it because (obviously) everyone is different and even the doctor’s aren’t sure what works and what doesn’t. And don’t get down on yourself if you have to take a nap during the day or you don’t have enough energy to do the dishes/laundry or yoga that you had planned to get done. Do your best, even if your best is sitting on the couch and playing games on Facebook. Tomorrow you’ll start taking names and kicking ass. Today just may be your down day.
I have been trying to go to bed early, to see if the two amitriptyline will allow me to go to bed earlier than one o’clock in the morning. I’ve managed to go to bed earlier a couple nights, but just end up waking in the way-too-early hours of the morning like I used to do. Tonight was the last straw. I laid down at 10 pm and tossed and turned until midnight. So now I’m typing this and my arms are screaming and everyone in the house is asleep except for me. At least I know the answer to the question that’s been bugging me lately, “Could it be as easy as getting into a sleep schedule?” No. Nothing with fibromyalgia is easy. Duh!