Hi. I haven't had the energy to write my "bio" for this site-do enjoy reading other's info-helps not to feel so alone. FMS is relentlessly destroying my life...I am a RN of 27 years; unable to work as a nurse since March, 09. We're financially devastated; I am in the process of applying for SSDI. We moved across the country in Jul--spent a couple of weeks in a tent in some beautiful sites-all we could afford. Now in a very sm rural town, husband is teaching at local school. Insurance will not be in effect until Oct-no MD yet, pain is escalating-"Excedrin" doesn't touch it.
The short version of the long story:
I am 53 years old, the mother of four grown children-two sons and two daughters-and grandmother to 15.5 (includes 9 who are technically ‘step’ grandchildren, I claim as my own); I have two adult stepchildren. I am also a registered nurse of 27+ years; but, have been unable to work as a ‘nurse’ since March, 2009. I continued working on a gradually decreasing schedule doing quality reviews, data collection, reports, etc. until early February, 2010—the last 2-3 months was primarily online from home for a few hours per week as I just could not tolerate the pain and fatigue which was exacerbated by just getting ready and getting to the hospital and making the long trek in from the parking area. It takes me two to three hours just to get myself going to start the whole showering/getting ready process…
I am not entirely sure where my journey with fibromyalgia began; but, know that I hate where it has brought me. “Hate” is not a word I use lightly… A few lifetimes ago, actually in the early 1990’s, while working as an emergency department nurse, I went through a period of time (weeks, perhaps months…) when I would have a low grade fever on a daily basis in the afternoon. I would feel feverish, slightly achy, tired, nothing very specific and certainly not debilitating, but noticeable. I saw a couple of physicians, had numerous lab tests done, had an abdominal CT scan (in case there was a cancer ‘hiding in there”); and, never had any definitive diagnosis—some ‘positive’ lab values, like elevated sed rate and ANA (but negative RA…), weak positive titer for EBV (maybe I had mono as a child?? I did have a tonsillectomy & adenoidectomy at about age 6 or 7 years)…I really don’t remember all of it and whatever “it” was just finally faded away. Also during this period, I had an injury to my low back while working in the ED—MRI showed degenerative discs, bulging & herniated discs in the lumbar-sacral region--treated with rest, Physical Therapy, spinal manipulation, and non-steroidal anti-inflammatory drugs (Feldine-inflammed my liver). The back issue resolved and I went back to work…It was not unusual for me to work lots of overtime/two jobs, take additional classes, and keep up with all four children—birthdays, holidays, sleepovers, sports, etc… I did crafts, cake decorating, was a Mary Kay Beauty Consultant in my spare time. We frequently had 20 or more guests at the house for holiday dinners and I would do all the cooking and preparation…
In addition to the removal of my tonsils and adenoids as a child, my surgical history includes a tubal ligation, a gastric stapling and banding with removal of my gallbladder (1993-eventually lost 130 pounds and basically kept it off until 2006 when my body just fell apart!), a hysterectomy with removal of the ovaries due to multiple fibroids and ovarian cysts in 2002, I have had three colonoscopies due to a strong family history of colon cancer. There were two small adenomatous—but benign—polyps found on the first colonoscopy, only small hypoplastic polyps—never become cancerous—the last two. I also had a endoscopy done in 2005 and was found to have a hiatal hernia, and that the stomach stapling had pulled apart in some areas creating multiple pouches in my stomach…yes, I have GERD.
Despite all these issues/surgeries, after I had the hysterectomy in 2002, I felt pretty well. I had some stomach issues; but, they were transient and generally easily treated. That all came to an end in early 2006. In January, 2006, my husband and I both decided to stop smoking and did so on January 16. We purchased a treadmill in February and started a walking program—we wanted to be in good shape by spring when he resumed his weekly golfing so that we could walk the course. I turned 49 that January 29 and planned to be in great shape by my 50th, a year later. By mid-February, my asthma which had been mild and not even requiring prescription medications, became severe. I had to use home nebulizers, take bouts of prednisone, and could barely breathe—no more treadmill or exercise. I began to rapidly gain weight. I ached all over and was exhausted. My hair was shedding by the handful. I was freezing all the time—not new for me, had this symptom for years and it was winter at high elevation—but it was much more pronounced; I could not get warm. I was sad, depressed, irritable; I thought I was losing my mind. I did research and tried numerous supplements; I just continued to feel worse and worse. I developed terrible pain in both shoulders and arms and plantar fasciitis in both feet… Finally, my physician ordered a battery of lab tests—I was hypothyroid (TSH was 25) and had an elevated SedRate and positive ANA (1:1280) –here we go again. I was tested for rheumatoid arthritis (RA) and again it was negative; there was some question of Lupus—never resolved as positive or negative… I started thyroid replacement and eventually also took Lexapro for several months…the pain went away, I felt better, though could not lose the weight (up 60-70lb), and still tired very easily. I would have days though when I would wake up and feel like my old self, happy, energetic—usually followed by a day of pain and fatigue due to overdoing everything I could…
In 2007-8, I made some changes professionally and had some major stress in that arena; but felt OK physically other than the weight issues and less energy. I had left management/administrative positions and was working with patients again in direct care settings and really enjoyed my work. Shift work and long shifts did make me tired—it had been a long time since I worked night shifts. In January, 2009, I went to a new physician (I had moved) and she did lab work-my TSH was greatly elevated (why??)—increased the dose of my medication. In February, 2009, I began to have gradually increasing low back pain radiating down my right leg and extreme right knee pain.
In March, 2009, I went to an orthopedic clinic and saw the spinal specialty nurse practitioner…had xrays of entire spine and an MRI of the lumbar-sacral spine. The MRI revealed the degenerative disc disease, multiple bulging discs, some nerve compression on both sides-worse on right-and facet joint arthritis… On to three sets of epidural steroid injections with minimal, temporary relief of the low back/leg pain. I had now developed severe upper and middle back pain which was just dismissed as “compensation” due to the low back issues. The knee pain was ignored. I developed radiating pain down the left leg. During one exam, while walking on tiptoe, I suffered a stress fracture in my right foot-wore a boot for 4 weeks—had me off balance, worsened the back and knee pain, had reactivation of plantar fasciitis in the left foot!!! I did land-based physical therapy, chiropractic, took numerous supplements, went on gluten-free diet, took Lyrica with bad reaction, had Reiki and Jin Shin Jujitsu (energy/acupressure type treatment). I did aquatic therapy in a warm water pool—felt nice, at least I could get in some exercise-but, I crashed the rest of that day and the next. Finally was given injection of steroids—there was no change in the pain and I was ‘officially’ diagnosed with fibromyalgia.
I have had increasing pain, fatigue, and additional symptoms since…no remission. If this is a flare I wish it would end!
I am majorly depressed and have bouts of anxiety. It is difficult to understand any reason to go on living-I am still grieving the death of the old me, unhappy and frustrated with the new me. Every day is more pain, more fatigue, less ability to do anything… How does one learn to let go and accept what is???
We have lost a house, a car, and used up our retirement savings; and, I feel responsible. I can’t help our children or grandchildren or even give them Christmas/birthday presents.
I filed for Social Security Disability in May, 2010—still in the initial application phase. They sent me for a mental health exam in November; now, I have a physical exam by their doctor in January, 2011. Hurry up and wait—and pray! Update April 18, 2011 I learned on April 6 that my SSDI had been approved when I saw that there had been a deposit in our bank account! I had received an initial denial in late Jan/early Feb and filed an appeal. Per SSA, I was approved on March 23... All the 'stuff' has been processed-letters received, Allsup collected their 25 %, and I will start receiving the monthly deposits in May. :-) I feel great relief; now to focus on building the rest of my life...
Feb 28, 2010
Dec 06, 2013