I have fibromyalgia. Now you may say, "It's all in your head" or "I don't believe in that" or "Isn't that what doctor's say you have when they don't know what's wrong with you" but I am here to tell you... it is most assuredly in my head and I believe they WILL discover it IS a neurological disorder sooner than later. I will also tell you that I don't really care if you believe in it because I live it, I suffer with it, and I feel it EVERYDAY. I can also tell you that doctor's are proving it IS a disorder that can disable people... it is a case of oversensitive nerves that can get so bad that it can become debilitating. Lucky most days I am not that bad.

I was going to start a diary to keep track of my health, how I feel week to week and how my treatment with my doctor is coming along. Then I thought, I am going to do this as a blog instead. There are too many people that suffer from this disorder that may not have been as lucky as me to find a doctor that is willing to work so hard to make them better. If my story can help one person feel better and be healthier then it was worth it. So... this is my story.

Not even 7 years ago I was an extremely active mother of three. I worked full time, got my three kids to their various sports, events and school activities and found time to volunteer for my community. I always suffered from minor aches and pains (some days not so minor) but just plugged along, proud of my energy, proud of my ability and proud of my life. I was crazy organized (some people would call me anal); never needed calendars or schedules cause I had it all together. In 2008 things went from okay to WOAH DID YOU GET THE NUMBER OF THAT TRUCK THAT HIT ME?!?

It started to become a daily struggle to get up, get dressed, eat breakfast and get to work. Working a fast-paced job all day damn near killed me and it was all I could do to struggle to the couch when I got home where I would die. My body felt like it was on fire. I couldn't lay on my side due to the pain in my hips. I felt like I was walking on rocks. I couldn't lift my arms to brush my hair!! Weekends would roll around I literally wouldn't get out of bed. I couldn't, I was exhausted. I quit going out with friends, could barely face family dinners and just day to day chores became mind boggling. I felt more tired upon waking than I did going to sleep. And brain fog!! I couldn't remember the simplest things let alone stay the high energy, multi-tasking machine I was used to being. I started to get really depressed and really scared! BUT I have ALWAYS believed, you don't just lay around and bitch. Get up and do something! So I went to my doctor.

I have to mention I have one of the BEST doctor's in the world!! She DID NOT just give me some blanket diagnosis that every other patient was getting. So started the plethora of tests, blood work, ultrasounds, x-rays, cat scans, MRIs. We went through A LOT of scares from deathly low iron and vitamin D to cancer and MS. Thank goodness, other than some simple vitamin deficiencies, all the tests came back negative. But that meant she was stumped. She just could not find anything diagnostically wrong with me. Then one day I came in the office and she started doing pressure tests on me. She would put a slight amount of pressure on about 18-20 different spots on my body from my head to my toes. The pain was excruciating!! She was pretty sure I had fibromyalgia... but she was quick to admit she did not know much about it and just didn't have enough knowledge or experience to treat it... but she did refer me to a doctor that did.

In March 2011, I started seeing Dr. Beverly Tompkins of The Burke Institute. Dr. Tompkins has been working with people with chronic pain disorders like fibromyalgia for over 20 years. She started researching and working with these patients when she herself developed fibromyalgia.


When I started seeing Dr. Tompkins I was taking 1800 mg daily of Gabapentin (a nerve blocker) that helped but not always. I was taking a handful of Tylenol 3s just to get me through the day. I have to admit... I was starting to think about taking medicinal marijiuana!!

So off we started, more blood work and tests. We discovered early on I am lactose intolerant (almost 80% of her patients are). I am also extremely vitamin D, iron and phosphate deficient. We made some minor and major changes to my diet and I started feeling better.

Dr. Tompkins has a 100 day rule. Most doctors (and others) will tell fibro patients to exercise a little bit everyday but Dr. Tompkins knows that any exercise actually makes fibro symptoms worse. So... the 100 day rule... no additional exercise until you have lived 100 days pain free. So I rest... easier to say than do BUT thanks to a super supportive family and super supportive co-workers I have slowed down TONS!! And I started to feel even better!!! It had only been 4 months since I started treatment. Dr. Tompkins thought I was going to set a record for being the fastest healed patient.

Then I crashed again!! I was so sick!! But it turned out this time I was seriously sick. I had developed gallstones and had to have my gall bladder removed. Because fibro will get worse when outside forces (such as a sick gall bladder) go to work; I suffered a pretty major set back. But in December 2011 I got that ole thing removed and was ready to start treatment again.

So it has been like I just started seeing Dr. Tompkins again. Still being treated for vitamin D, iron deficiency and low phosphates. Still lactose free (sometimes I cheat but boy do I pay for it).

The biggest treatment is to get us sleeping right. So I have an extra pillow top on my bed to lessen the number of pressure points. Ideal sleeping room temperature is between 12-14 degrees celsius (REALLY) but I also sleep with a heating blanket on my bed... even in summer. I am/will use fans to keep my room to the ultimate temperature. I have a small carb and protein snack before bed to keep hormone levels optimal. I ONLY sleep in cotton pajamas. I have actually had many nights of none stop sleep since starting this treatment... for the first time I can remember!!!

The best thing I have taken away from my treatments is the use of electric heat!! It is soooo important. I will reach for a heated throw before codeine now and 8/10 it works better!! I have 2 heated throws for when I am just sitting around the house and a queen size heating blanket on my bed.

The good news is I am taking 75% less codeine than I was a year ago and I am completely off the gabapentin. I am having more and more pain free days. I still have a journey ahead of me but I have hope. And so over the next little while I am going to share that hope with you. Maybe it will help you, maybe it will let you help someone else or maybe it will help you understand me better. Or maybe you will never check back to my blog again. Personally it is your choice.