Thursday, June 6, 2013

From Rose's Garden: Fibromyalgia and Food Sensitivities

Rose starts her Gluten Free Health Challenge with the post that resonated with so many readers. She entered the contest to become part of this challenge, and was chosen as one of three winners. The following is what she shared with us all.

Rose will be posting her journal entries on the first 3 Thursdays of every month from now until December. During this time, she'll be receiving free health coaching from Shirley Plant of Delicious Alternatives and Iris Higgins of Your Fairy Angel.

Five and a half years ago, I was told that I have Fibromyalgia. This was after seeing countless doctors...many, including my family doctor, thought I was losing my mind. They told me that I was just depressed and that was why I hurt throughout my entire body. In hindsight, of course I was depressed!! I could barely function and all that doctors wanted to do was throw drugs at me! I am a person who has always shyed away from drugs, but I was put on one cocktail that had me crawling down my hall to get to the phone and call 911. When the paramedics arrived, they told me that I could have died from the drug combo that my doctor had prescribed!

I have had so much blood work done...testing for just about every syndrome known to mankind!! Tests always come back negative. I can't tell you how many times a different doctor has told me that they think I have Rheumatoid Arthritis (RA) and insists on testing for it before treating me. RA has never been confirmed.

About 4 1/2 years ago, I found a kinesiologist who practices three hours from where I live. I had to find people to drive me there. My husband and kids thought I had lost my mind, but I felt like a natural path was my only hope. This fellow was in his 70's and put me on a very strict diet, which I followed for four months because I was so damn scared. After about a month of this severe diet, along with taking over 100 different supplemental pills daily, my pain was almost least it was manageable. This fellow told me that I had Candida and I had to do a very severe diet to get rid of it. I fell off of the diet when I started to feel better, and since then I still struggle daily with my Fibro. The diet that worked for me was, essentially, organic meat and veggies. I couldn't even have fruit. And no dairy or gluten of any kind.

I couldn't afford to continue to drive three hours one way to see this fellow, and the supplements almost bankrupted us. In September of 2009, my big toe on my right foot started bothering me when I would walk for exercise. It kept getting worse and worse until I saw an orthopedic doctor and had X-rays. The doctor came back into the exam room afte seeing my X-rays and started shooting questions at me about autoimmune disease. I told him that I had Fibromyalgia, but nothing else that I was aware of. And guess what??? He got this look on his face and started shaking his head and said, "You were misdiagnosed." I am certain that you have RA. He then showed me my X-rays. The joint in my big toe was, essentially, gone!! Disintegrated...and he told me that the toe next to it was headed in the same direction. I told him that I had been tested several times for RA. He insisted that I would have to be tested again or he wouldn't treat me. He then told me to have my family doctor order the test and have the results sent to him. This doctor practices an hour from where I live.

I walked out of that building in tears!! I had driven by myself and I was just overwhelmed! I drove home and made an appointment to see my family doctor. When I saw him, he started arguing with me. "You don't need to be tested for RA, Rose! You've been tested how many times already, Rose?" When I explained to him about my toe joints, his response was, "This could have been a prior injury that you didn't know about." I pleaded with him to test me so that the orthopedic doctor would help me with my toes. He finally ordered the blood work and, of course, it came back negative...again!

I sent the results to the orthopod who is an hour away, and made an appointment to have an MRI. After he read the MRI, he told me that my only option for my big toes was for him to fuse the base joint. I now have a plate and 3 screws in that toe, and it doesn't move at all. He thought he might be able to save the joint in the toe next to the big toe. I had surgery in June 2010, and couldn't walk that entire summer because I had to heal. He fused my big toe and drove a long pin down through the top of my second toe that ran through all the joints in the toe. He was trying to straighten the toe out and help the joint to stop deteriorating. The second toe is now severely deformed because that was the price I had to pay for having a huge-ass pin driven into it and staying there for two months. So far I have had no more trouble with my toes...knock on wood!!

In January of 2011, I saw the orthopedic doctor again because my right ankle (same side as bum toe) was really bothering me when I tried to exercise. He did an X-ray and told me that the joint had a huge divet in it and the cartilage was deteriorating. In June 2011, I had a cartilage transplant in that ankle and wasn't able to walk the entire summer, again! So far, the ankle is doing well.

I still have problems with Fibromyalgia symptoms...pain, stiffness, sore muscles, joints, por sleep, you name it. In October 2012, I sent my stool away for testing. I spent a ton of money and also had DNA testing done. My DNA tested positive for gluten intolerance. I have two copies of the gluten intolerance gene, which means that my mom and dad both have at least one copy and that each of my kids has at least one copy.

I learned that I have severe gluten intolerance, and am intolerant to eggs, soy, and dairy. I so need this challenge! And to prove to myself that I can do this and come out feeling better and stronger!! I have gone off of gluten and dairy for short periods, but have never made it very long without giving in.

I follow so many health blogs, but I just can't seem to stick with it!! I need this, Iris!


1 comment:

Dorothy said...

Dear Rose, It was so interesting to read about you. That's a whole lot of health issues to deal with and I feel for you in your struggle to search for the answers. I, too, have some issues with my foot and especially my right foot and big toe. (I'm trying to avoid surgery at this point) You know what I'm realizing, reading all of the challenge blogs. We are all going through a significant life experience, something very powerful. What I'm realizing is by sharing our stories and being connected through this website and facebook page, we are not alone. We are all connected. So we don't have to go through it by ourselves. That support is important that I realized when I first started the challenge. I'm here to hold your hand and to hold everybody's hand here on the challenge. That includes the coaches who are helping us too. And Iris, lovely Iris. Thank goodness for this challenge. Rose, I look forward to your next post! Big hug, Dorothy


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