My Fibro Story – 9 Months of Trying to Feel Like Me

I won’t give you my whole life story, but in terms of food I ate like most other kids in the 80’s and 90’s. Top Ramen, Macaroni & Cheese, Kool-aid, Tang, Cheetos, fruit snacks, pop, candy, etc. When I became an adult, I ate pretty good with the exception of something bad every now and then, or so I thought. I began having children and worked full-time. With all of the stress life brings and trying to manage work and home life I started eating bad foods and just didn’t care or even think about it. After having my second child, there was extra stress and I really just didn’t feel like myself at all.

With a full-time job, two children, and a husband in school life became very overwhelming. I was very depressed and started to feel like a robot, just moving along trying to manage my life. I couldn’t seem to lose the weight from having another child and thought it would help to drink diet sodas, zero calorie drink mixes, use zero calorie artificial sweeteners, lite yogurts, reduced fat or no fat products, etc. Little did I know, they all contain additives like Aspartame. I wasn’t eating the best either but really felt like I shouldn’t weigh as much as I did, and feel as bad as I did.

In February of 2012, my grandpa passed away. He played a fatherly role in my life and this was very hard on me and my family. Then work really started getting crazy and with the stresses at home, my health started going down. It was around August that I started getting headaches more frequently and had a couple of full blown migraines. Headaches continued and then this eye twitching developed. I started documenting everything in an iPhone app. Then I started getting these body twitches. Just little twitching here and there randomly. We were putting together a new bed for my daughter and I didn’t think I strained myself but my neck and back were hurting really bad the next day. I felt really nauseous too. I made an appointment with the doctor. I just didn’t feel right and honestly hadn’t felt like myself in a while. I started getting these chest pains before I left to my appointment. I remember thinking on my way there that I just need to get there and they will check me out and know what’s wrong. I was sitting in the waiting room and everything was spinning and I just felt sick. My arms started to go tingly. I decided I better tell someone what was going on. So I got up slowly and told the receptionist how I was feeling. She rushed back and two other people came out with her. They put me in a wheelchair and wheeled me into the exam room to start checking my vitals. Blood pressure was a little high, pulse was fast, arms still tingly. I was trying really hard not to lose it but I was worried that there was something seriously wrong with me. So I was calmly trying to answer all the questions. They ended up talking to me about anxiety and prescribed me Lorazepam. I really didn’t feel like it was all anxiety. They ordered an EKG, blood test and pregnancy test, just to be sure. I wasn’t pregnant and EKG/blood test were fine. I thought I had the weekend to recover from whatever this was, but I wasn’t getting any better.

After an urgent care trip, more testing, more doctor visits and no answers, I was running out of hope. I was also getting worse. I had seen several doctors, a chiropractor, and a neurologist. I had blood tests, EKGs, an ultrasound, chest x-ray, CT scan of my chest, and many different prescriptions of things. I had a bad experience with the neurologist. She was rude and kept talking about anxiety again which made me annoyed and I started to wonder if there was something in my chart saying, “She has anxiety but won’t admit it.” I felt worse after this. The rushes to the head had become more frequent and I just felt all around weird. Like I wasn’t really there. My legs felt weak, like they were really sore and separate from the rest of my body. When I would walk, I wondered how they were moving. There were shooting pains down my arms and sometimes my legs, and my vision was squiggly. I had dizziness, nausea, and sometimes everything would seem extra loud. I would space off and it felt like my eyes were really wide. This happened frequently, especially when I was driving. I would be looking at something or reading something and my eyes went all over the page, like I couldn’t focus. Then I got dizzy. If I stood up too quick, the room was spinning. All these things played out in my head. Am I on the computer too much?? Should I just get that alignment at the chiropractor? Should I go see rheumatology (autoimmune diseases)? Should I see an inner ear doctor? Should I go get acupuncture? Should I get an MRI?? Is it all REALLY from anxiety? I would try to act like everything was okay but was screaming inside: What’s wrong with me?? Will they ever figure it out?? Will I be like this forever?? It’s so scary not feeling like yourself and feeling like you are somewhere else.

In November, I went in to see a Rheumatologist and they were able to diagnose me through testing tender points for pain. I had started thinking it could be an autoimmune disease because of the way everything was progressing. Over the weekend, the weakness and pain in my legs intensified, and then it radiated throughout my whole body. Like something was taking over. The doctor had come in and asked some questions. He went over all my information and did an exam. As soon as he started poking in different places around my body, I cringed in pain. It really HURT. Then he asked me if I ever felt rested after waking up. I said that no, I never feel rested. No matter how much sleep I get, I’m still really tired. But I thought that was a normal feeling of a full-time working mother of two. He was doing a lot of typing and then turned to me and said, “I know what you have.” My eyes opened wide and I perked up and said, “What?!” He said, “Fibromyalgia.” I was happy. I felt relief. He did a lot of talking after that. Going over EVERYTHING. Knowledge is key, diet and exercise is key, managing pain, etc. etc. I listened but was excited to leave and tell everyone that I know what I have. I have a label for all this. I’m not going crazy! Then I needed to meet with my doctor to make a treatment plan for this. There is no cure but I can treat it and manage it. That afternoon, everything was hitting me all at once. After picking up the kids, I had to tell them ‘no’ on many of the different things they wanted to do. It wasn’t fair to them but I just couldn’t do it. I didn’t want to keep living like that. To not be a mom 100% to my kids….They deserve better. And there’s no known cure for Fibromyalgia. It was very overwhelming to think that I would have to deal with this every day for the rest of my life. And, I have a label now. It is taking over my life already.

New symptoms would emerge and then go away. The doctor prescribed Venlafaxine, which is a knock-off brand of Effexor. Then I started dealing with different side-effects of the medication like acid reflux and many other things. Other Fibro symptoms would appear. It would take longer to process something or I would get stuck on what I was trying to say or remember, which is called “Fibro Fog”. A simple mental task could take longer than before. So now I get to live with Fibro Fog, chronic pain, sensitivity, and fatigue. How am I supposed to work and take care of kids?? I had to take everything one step at a time. Stress and anxiety can cause all of this to flare up worse, so I had to keep that under control.

After I did get over the shock and depression of being diagnosed with Fibromyalgia, I really did want to try to feel better and figure out what might have caused this. I started reading other people’s stories. For those that had the illness for years, it seemed like their condition had only gotten worse and they had tried all different kinds of prescription drugs to feel better. This caused all different kinds of side effects which was like a ripple effect of needing to take more prescription drugs to deal with the side effects. I did not want this to get worse and have to take all those prescription drugs.

Jeanette (my best friend and the other Admin for our website) was going through health issues as well (and received an official diagnoses later for Fibro), and we would talk about this frequently. We were looking for ways to feel better and saw this video go around on Facebook about the chemicals in the food. It really opened our eyes. She did the first big organic grocery shopping trip and I couldn’t believe the items that are available in the organic section. So on February 1, 2013, I did my first organic shopping trip (you can read about that here: http://organicfibromommies.com/2014/01/big-switch-organic-foods/). I continued to shop for organic/natural foods and started taking a natural supplement called Protandim. I gave myself a few months and then started weaning off the Venlafaxine. That was probably the hardest thing I have ever had to do. They say that weaning off this drug is similar to coming off heroin. I think it would have been a lot harder without the Protandim. Once I was completely weaned off the Venlafaxine, I felt great! I was riding my bike, which I hadn’t done in a very long time. We started getting into juicing. I continued to keep up with my health and now am able to do almost everything I could before Fibromyalgia. I still have some bad days but it is nothing like it used to be. Now we just want to spread the word and help others feel better too.

Here are some things I do to survive Fibromyalgia: http://organicfibromommies.com/2014/01/daily-tips-surviving-fibromyalgia/.