Over the summer I felt that I had made an almost full recovery from my Fibromyalgia. Modifying my diet to one that consisted of low grains, no gluten, and no processed foods changed my life. I felt like a new person. The summer has ended and so has the concept that diet alone affects my Fibromyalgia flares.
Fall has always been a rough time on me because of the change in weather; the decreasing sunshine and the cooler weather can wreak havoc on most sufferers’ Fibro. In June of this year I was diagnosed with vitamin D deficiency, and so I made a big effort over the summer to get morning sunshine so my body would make its own vitamin D. I just felt like the supplements the doctor put me on wouldn’t be absorbed properly given the current state of my digestive system. My gut is still healing from the years of abuse from chemically treated processed foods. Now that I am back to my work as a middle school librarian, I’ve been missing my morning walks in the sunshine. Is that why this year’s fall fibro flare has been so bad or is it something else entirely?
I have been back to work for about 8 weeks now, and on average have taken about one sick day per week. The pain and stiffness have been so bad at times that it was difficult for me to hold a phone to call the doctor. Of course there have been days that I have gone to work and suffered through times when trying to carry just a few paperbacks was a chore. It has gotten so bad that several people have mentioned the “D” word – Disability. I cringe. My response is that I am only 32 years old and I have a Masters degree. I want to work. I want to have a career. I shouldn’t feel like this.
So I went back to keeping a food journal, and also started tracking my work activities, along with my chemical exposures at work using Google calendar. My doctor diagnosed me with environmental illness upon my return to school because I was reacting to fragrances the students wear, along with the VOCs the laminator puts off into the library. The days the lamminator is on I feel extreme nausea, fatigue, dizziness, and the fibro fog hits me so hard I can barely walk around the library.
I’ve tried all kinds of medications, and most of the time the side effects seem to make me feel worse not better. However, as a last ditch effort, my family doctor wanted me to try Savella. I was optimistic that it would help. If medicine will help me cope I will take it, but if it is not effective I don’t see the point in overtaxing my liver and kidneys. I was only on the Savella for 3 days before I was advised to discontinue the drug due to chest pain. I was still on the lowest dose in the titer pack, and was feeling dizzy, nauseous and that fog came back. I am just baffled that Savella and Lyrica are marketed for Fibromyalgia treatment, when the side-effects they cause can be so similar to what they are trying to treat. I don’t want to feel like a walking zombie, and I don’t think I should have to suffer with chronic pain either.
I hit rock bottom about a week ago. I am so sick of trying to figure out how to cope with this syndrome, but yet I persist because I am only 32. I want to work and I have an almost 4-year-old son. What I discovered while tracking my day to day schedule, with my food diary and chemical exposure, will not surprise you. It may annoy you because you have heard it many times before, but I think this not-so-hidden trigger is really just stress. I went from enjoying my summer holiday, to being thrown into the lion’s den that is middle school. My fight-or-flight reflex has gone into overdrive triggering a horrible Fibromyalgia flare.
So at my lowest point, I went back to my rheumatologist begging him to help me cope with the pain caused by the stress and anxiety. The doctor laughed at me and offered to put me on some medication. He wanted to try Savella, but I told him of my bad experience with it, and he said, “Well I would like to try it again.” I told him it hadn’t been a week since I had taken it. He said, “What about Cymbalta?” My response to that was, “Isn’t it essentially the same thing as Savella?” It is also an SNRI, and I just thought that I would probably react to that one with chest pain too. “So we will go back to the Lyrica then.” Ugh.
I told the rheumatologist that when I was on Lyrica before, that I could barely drive. I was so fatigued and foggy headed that I almost got into two fatal car accidents! His response was, we will just put you on a low dose and you can take it at night only. We will pair it with Flexiril, a muscle relaxant. I just said “Okay.” Obviously this doctor was not going to listen to me. I had to spend more time explaining to him why my job was stressful than we dealt with treatment. Shouldn’t the fact that I work in a middle school be red flag enough that my job is stressful? He said, “How do you want me to advise you? Maybe you should leave your job.” And do what exactly? I love my job, even though looking at my calendar I discovered that most of the time I am literally suppose to be in two places at once, the broadcasting studio and the main library. Instead of just giving me some drugs that will make me numb, how about you refer me to someone that can help me cope with stress? But I guess it is easier just to give me some drugs and send me on my way than actually do anything to prevent triggering the Fibro flares in the first place.
I left his office and headed for the pharmacy. I was still debating whether or not I wanted to go back on the Lyrica, but I had to pick up my Vitamin D pills for the month anyway. I decided to speak (I mean cry) to the pharmacist. She suggested trying Nerontin over the Lyrica, if I decided to go back on that type of medication. Mostly she recommended I find a new doctor. I seem to go through doctors like water.
I spent the afternoon trying to find someone that specialized in environmental illness with no luck. Many mainstream doctors, like my lovely rheumatoligist, don’t seem to recognize it as a valid diagnosis. Remember when the diagnosis of Fibromyalgia didn’t hold any water? Well at least Fibro is becoming more recognized today. Pharmaceuticals are marketing drugs for treating it so, now doctors have options for helping treat patients with a diagnosis of Fibromyalgia. I think perhaps the only way someone with environmental illness will be able to be treated is through holistic medicine. Giving me more drugs doesn’t seem to make me feel better. Sure you can numb my hands and arms so I can’t feel the burning pain sensations, but that doesn’t really fix my problem.
Besides going to the rheumatoligist, I went to Dr. Charles Turner’s office for a somewhat weird body-balancing treatment (BBT), that uses accupressure to sort of reprogram your body not to react to certain foods, chemicals and emotions. This is based on Nambudripad Allergy Elimination Techniques (NAET), which comes out of more eastern medicine practices. I’ve only had two treatments, and I do seem to improve each time I have one, but I have no idea why this works. More than the BBT, I think the adrenal support supplement they gave me is helping me get through each day. I seem less emotional, I have more energy, and less pain on the supplement.
I didn’t start back on the Lyrica, and I am hoping that I won’t have to do so. I’m continuing to research adrenal insufficiency and stress coping mechanisms. I’m a type A perfectionist, people pleaser to the core. Learning to say no without feeling guilty is the next thing on my to do list.