The Trouble with Fibromyalgia is...

I write this first post at 2 am. I took my muscle relaxer that is supposed to be helping me sleep at 10 pm. As you can tell it is working fabulous and now you get the overly exhausted version of this blog (sarcasm). I am writing this blog because I am finding out more and more that there are options out there. I have read more than one book, blog, article, anything that talks about Fibromyalgia Syndrome over and over again and they all talk about some mysterious cure that works for some but not for all and if you pay just a small fee, you too can find out what that special cure that may or may not work for you is. And thus lies the trouble with Fibromyalgia...nobody really knows what the heck it is and everyone has their own idea of what the "cure" is. My Rheumatologist wants to give me drugs that don't work or masks the symptoms or makes the symptoms worse. I know that he is just doing what he knows best, but it just ain't cutting it. The articles and books that I read say that it is a natural remedy that works and who needs drugs. So, here starts the blog of my journey. I want my cure. I will try everything possible that I can to blog my results and hopefully, just maybe, someone else can read this and possibly find help through my journey.

A little background on me:
My name is Jennifer. I am a wife to Zac and a mother of two small boys (Levi, age 6 and Kyle, age 2). I am an x-ray technologist for a local hospital and work full time on weekends doing 2, crazy 16-hour shifts. I am a pretty normal stay at home mom through the week. I help out at my church and am quite active there. My faith plays a huge role in my life and is probably one of the only reasons that I haven't gone insane yet. I emphasize the YET!

My fibro journey thus far:
My pain started around age 16 or 17. (I'm 33 now so it has been a while and with the fibro fog that I deal with, memories are starting to fade a bit.) I remember having horrid pain in my neck and shoulders. I would get severe knots. I just thought I was an extremely stressed out teenager. There was a lady in my church that worked in physical therapy. She would sit through choir practice and work on my knots, or "rocks" as she liked to call them. I had massage therapists tell me on more than one occasion that I was way to stressed out to have a back like I had at such a young age. The problem was, I really wasn't too stressed out. I mean, back then I thought I was stressed with making good grades, having a job, a social life, etc, but in comparison to now, it really wasn't too bad. It progressively got worse and I remember while I was in college the symptoms began to effect other parts of my body but I just chopped it up to the stress of school. I just wasn't raised to go to the doctor for minor things like chronic pain. You just took an ibuprofen if it got too bad and sucked it up the rest of the time. One day at work (maybe even when I was in clinicals-again, fibro fog is brutal), I looked down to see my hands swollen and red. They hurt and felt warm but I felt cold. It was odd. I showed one of the radiologists and he told me to make an appointment with my family doc to see if I could get blood work drawn while I was having symptoms. I was able to and the findings were inconclusive. I was sent to a specialist, Dr. Sakr, a rheumatologist. And thus is the day that I got the diagnosis. He looked at my lab work and said that it showed that I was healthy. He poked on me and asked me to rate the pain which was all 7 or above on the pain scale and he nonchalantly looked at me, "Ah, its simple. You have classic fibromyalgia." Never heard of it. He put me on Cymbalta and Lyrica, the two classic Fibro drugs and wanted me to follow up in a month to see how things were going. In that month I took my meds which helped greatly and read every book that I could about Fibromyalgia. I basically learned that my immune system is "hyper-sensitive". It means that when I ram into a wall, instead of my body saying, "Ow, that hurt!", it says, "Alert, alert, the human has broken her arm. Commence melt down sequence!"  It explained a lot. It also meant that I wasn't going crazy, which I was previously starting to wonder.

Time went on and I continued my regimen of meds, and excercise when I could make time for it. I then got pregnant with my oldest son. Meds were stopped immediately and surprisingly my symptoms were gone too. Pregnancy healed me. Granted, then I had to deal with all the uckiness of pregnancy. I popped out the kid and had a HORRID post week in the hospital where I was so sick and so was Levi. With all the stress, guess what....yep, the Fibro symptoms returned. I started back on my Cymbalta and Lyrica and I don't know what changed but the side effects were horrible. I suppose the Cymbalta still "kind of" helped but the Lyrica started making me dizzy. I remember being in Wal-Mart and having to clench onto my cart, new baby looking at me, while I waited patiently for the dizziness to stop. I started wondering what I would have done if that happened while I was driving. I stopped Lyrica that day along with the Cymbalta. I went back to toughing it out until I could see Dr. Sakr.

This is the period of time that I like to call the Pharmacy years. During this time I was put through the ringer in the pharmacy world. With the two best "Fibromyalgia Drugs" gone out of the mix, Dr. Sakr had to get creative. I tried Flexoril but that left me with a hangover and I can't be hung over with a kid to take care of. I was put on Klonopin. That was even worse. I resorted to Skelaxin and Ibuprofen as my go to drugs. Dr. Sakr did talk me into doing physical therapy during this time. It was a God-send. I had got to the point to where I couldn't get down on the floor and play with my kid. It was agonizing. Physical therapy strengthened my core and worked to get me functional again. I still use these exercises to help strengthen my core. I actually went for a small period of time after physical therapy with very few symptoms. It was great. Dr. Sakr also put me on Tramadol shortly after Therapy and that was what I took faithfully and I finally felt like I was on the mend.

Then comes the time of my life that I would like to refer to as the HELL years. I went through a period in my life that just wasn't that great. It was a stressful time in my marriage and to make matters even  more stressful I found out I was pregnant with Kyle. I had just lost 50lbs and was not planning on getting pregnant. This gross amount of stress sent me into the worst fibro flare of my life. I thought it was just pregnancy stuff at the time, but I realize now that it was full blown fibromyalgia at its worst. I was only allowed to take tylenol and baths for the pain. It just didn't cut it. I prayed and decided that me being in a constant state of stress and pain could not be healthy for the baby. So I started my Tramadol again and took it as sparingly as possible. I prayed safety over Kyle and that the effects of the medication would not harm him. I took hot baths while I drank ice water and that seemed to help as well. I was in survival mode. My OB doc sent me to physical therapy which helped as well. It was the worst 40 weeks of my life. And what was cool was that the complete opposite happened after Kyle was born. My fibromyalgia symptoms seemed to go away. I had several months of very mild pain that could be controled with just ibuprofen. It was wonderful.

That brings us to my current life. I would have mild flares after pushing myself too hard at an event or staying up late and getting up early several days in a row. I would just change my ways or my diet and the flare would go away. Not the case anymore. I feel just as bad as my pregnancy with Kyle, if not worse this time. For the past 3 weeks I have been in a flare. I went several days staying up late and then getting up early. My job has become more stressful and I find myself not enjoying it as much. I am the sole supporter of the finances right now and pretty much run this house. My husband is a great guy but has a load of his own as he finishes school and prepares to get a job for the fall. I am stressed, I'm not getting sleep, and my diet hasn't been the greatest so of course I am in a flare. The only problem is that the extra sleep, the diet changes, and the stress reducers aren't helping this time. That is unacceptable. So what do I do, I read. I am back to the basics. I am reading everything that I can and I am finding that there is a lot more information than there was 10 years ago when i was diagnosed.

So my journey begins:
I have read several books. My favorites have been "Figuring Out Fibromyalgia" by Dr. Ginerva Liptan. Her book talks about her own journey of getting her diagnosis during med school, having to take a year off, the stigma among her colleages that caused her to keep her disease a secret until after she graduated, and all the tests that she did and her take on everything along the way. GREAT BOOK! "Treating and Beating Fibromyalgia and Chronic Fatique Syndrome: A Step-by-Step Program-Proven to Help You Get Well Again" by Dr. Rodger Murphree is also great! This book is a WEALTH of knowledge. With my medical background I enjoyed it because it got down to the why and was backed up with medical journals and gave real life proven help in Dr. Murphree's practice. Sure, it had a list of supplements that you can buy that help and his own developed system, but the knowledge is still worth every ounce of time reading it. I am perusing other books that I checked out at the library but those two are the ones that I clung onto every word. Their books were different because they said from the beginning that they just weren't going to settle for pills that don't work and to suck it up. So these are the two books that I am working with the most. And from those two books I am developing a plan of action.

My plan of action:
1. Meet with Dr. Sakr and discuss medication options since others I have tried haven't worked.
2. Meet with a nutritionist at place of employment to discuss diet and exercise options.
3. Figure out my insomnia issues and start sleeping schedule that actually works.
4. Once insomnia plan is started, start diet of clean eating...nothing processed, no sugar, very much like the 17 day diet of which I have done in the past, just not as strict.
5. Start working out again more than once a week and try to get rid of extra weight.
6. Start taking supplements that I have ordered based off of Dr. Murphree's book to see if they help along with a woman's multi-vitamin.
7. Continue reading and finding out all I can about this disease.
8.Blog my success and failures and hopefully help others on their journey.

I'm sure that there will be other things added to this list, but for now I will stick with these. I know that this first entry is long but I feel it is necessary. I hope that if you read this that this journey of mine will help you in your own. Blessings to all that read!