Looking back now, I realize that my Fibromyalgia symptoms probably started in college. I was in Navy ROTC, and had to go to San Francisco for a month on an aircraft carrier, the USS Abraham Lincoln. What a great experience that was! On the way home, I had to take a red eye flight. Thank goodness I was in a row of 3 seats by myself, because my legs were going crazy. I knew restless leg syndrome existed, because my Mom suffered from it. From that day on, if I was at all tired in class, my legs would be just so fidgety. But I was able to keep it in check with exercise & folic acid.
When I graduated from college and headed to my first duty station, I was almost immediately depressed due to the switching shifts and loneliness. It was also around this time that the migraines started. I didn't know anything about fibromyalgia at that time. I was focused on getting my PCOS diagnosed.
I moved to my next duty station in 2000. This was a stressful move, and a stressful new job for me. My migraines began to get worse, I was gaining weight, and feeling awful alot of the time. Low grade fevers & achiness began to plague me. But I just couldn't figure out why I was achy like I had a fever, but never actually had one.
My allergies & stuffiness got alot worse during this time. I was diagnosed with "cough variant asthma" and was prescribed a steroid inhaler & zyrtec. I began feeling more and more depressed. I really thought I was becoming a hypochondriac. I had constant leg, hip, and foot pain. I was taking ibuprofen 3 times a day, until GERD flared it's ugly head. So my doctor switched me to Prilosec & Celebrex. Around 2003, I started seeing a psychiatrist, who prescribed Lexapro. I felt better, but not great, and still needed all the other meds. Nobody ever mentioned fibromyalgia to me, and I still didn't know about it.
My weight had gotten high enough that I went for a sleep study, hoping to get a Cpap machine. I was diagnosed with mild apnea (no machine), but severe Periodic Limb Movement Disorder / RLS. I started on Requip and due to the better sleep, began feeling a little more alive.
Due to a rash on my foot for over a year, I was eventually ruled out for lupus in 2005. During that spring, I also did a trial of Topamax, to prophyllactically treat the migraines, which were getting worse and worse. The Topamax was fine, until I needed to increase my dosage. Then I began to have memory, stuttering, and losing word problems. I also had an eye twitch that began to get severe. So I stopped the Topamax and went back to prn migraine meds. In June of 2005, I had such severe right lower abdominal pain, that I had a pointless appendectomy. During the surgery, the doctor found adhesions in my abdomen -- adhesions that shouldn't have been there, because I'd never had surgery before. That started a full round of workups to rule out Crohn's disease. Of course, I didn't have it.
Soon after my surgery, I moved back home to VT, and the allergies/stuffiness got better. For a time, so did the achiness. But the move was a lot harder than I expected it to be, and I decided I needed to switch from Lexapro to something else. I talked to my primary care provider (a nurse practitioner - she's great for a lot of things; not so great with others) and we decided to try Cymbalta, which helped the headaches & some pain. But soon I was at the "max" of 60 mgs, and it wasn't helping as much. Migraines were less intense, but I couldn't take my relpax anymore because of it's interactions with Cymbalta.
The summer of 2008 became the straw that broke the camel's back. Marital problems, and my mom had surgery requiring me to take almost a month off from work to care for her. Right after these two things resolved, my husband was admitted to hospital. Almost a week from his release, our beloved male bullmastiff, Sampson, began having bleeding from his mouth. He was diagnosed with an overwhelming osteosarcoma of the jaw, and we were told we probably had 4-6mths left with him. He died one month exactly from when his symptoms started. Pure devestation. 4 days later, my husband lost his job, and mine was getting more and more stressful.
I began to feel the worst I've ever felt. I would get home from work (I work night shift), and just crawl into bed bawling my eyes out because everything hurt so much. One day, as I was walking back to my computer, something in me said "fibromyalgia". Fibromyalgia? What? So I looked it up online, and was astounded. Absolutely flabbergasted. Could not believe that no one had ever even brought up the words. And I saw validation for all the times I felt sick. Realized I wasn't a hypochondriac. I read as much as I could from the internet, and then bought books and learned more.
I went to see my primary care provider, but she was out from shoulder surgery. I had to see the practice's Physican's Assistant, whom I had never seen before. She had such a look of scorn on her face when I suggested that I thought I had fibromyalgia. So we did some tests, I was negative for RA, and hypothyroidism. She promised she'd look up some info and get back to me. Never did. I waited until my primary care provider was back to work in November, then practically ran in to see her, thinking, "she'll believe me. she's known me for 3 yrs now." Ah, no. I could tell she didn't think I had fibromyalgia either, but she did refer me to a rheumatologist. Of course that practice was so busy, I couldn't get an appointment until January.
I was so nervous about that appointment. I was afraid I'd have to spend a long time listing out all of my symptoms, and then still be told, "No, I don't think so." What a relief instead, that the doctor talked to me for about 5 minutes, then said, "absolutely you have fibromyalgia. Now what can we do to help?" Talk about relief! I was so relieved I cried. We decided to increase my Cymbalta to 90mg and added Trazodone to the mix. 4 days later, I'm sleeping so much better.
Of course, as one thing ebbs, another flares. Now my low back is almost constantly throbbing if I'm standing or walking. That doesn't work so well since I'm a nurse. I need to find a way to get it under control. I don't want to be a victim, don't want to stop working. But I feel so much better just knowing that I'm not crazy, not a hypochondriac. I have so much hope that I will find the right mix of activity, work, complementary therapies, and meds to live a happier, fuller life from now on.
Diagnosed 1/19/09.
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It was soon after this that I had the strength to end an awful marriage that largely contributed to the onset of my fibromyalgia. Of course that caused flare-ups, but I now have some idea of my signs before a flare-up, so I'm able to stop the awful decline. Power and control over my own life again -- Marvelous!!!