Chronic Fatigue Syndrome, Chronic Pain, Fibromyalgia, fibromyalgia warrior, Spoonie

Fibromyalgia Scrapes Away Your Body & Life, by Beckie Thomas

Fibromyalgia warrior, Beckie Thomas suffers from Fibromyalgia. Beckie has added her face and story to Faces & Stories of Fibromyalgia. I am so grateful that Beckie has shared this, as each story told raises awareness and helps fellow sufferers.

You can connect with Beckie by following her on Instagram.

Fibromyalgia scrapes away your body and life, by Beckie Thomas
Fibromyalgia scrapes away your body and life, by Beckie Thomas

My name is Beckie and I am a 43-year-old single mom of 2 incredible young ladies. I live in central Florida and am originally from Massachusetts. I have Fibromyalgia (FMS), Chronic Fatigue Syndrome (CFS), Diabetes, and Asthma. Looking back, I probably had FMS most of my life. I know it is controversial, but I believe this is a progressive disease that gets worse as time goes by. It scrapes away at your body and your life and steals a little bit at a time. The following is a brief overview of my journey…

As a kid I was very active, I loved hiking in the mountains, sports, going out with my friends to do different activities like roller skating and swimming… I just couldn’t be still. Then when I hit my teens I began to have less energy and lots of pain in different areas like my legs and arms. My doctors did tests and the only thing they found was I was “borderline anemic” and had very low blood pressure. So they told my parents I can expect to be low energy and “get a little less out of life”. And also said my pain was “growing pains”. As time went on I continued with the lower energy and pain but it came and went so I just ignored it and went on with life.

Fast forward to 2007 and I end up having a double surgery, a total hysterectomy and gallbladder removal. Prior to this I had gone to at least 10 different doctors due to abdominal pain, bad periods, low energy, always feeling like I am getting the flu, just many different symptoms. Most of the doctors said it was because I was obese, which at the time I was. One suggested gastric bypass surgery, which I did almost go through with. But I decided not to go through with it. Finally, I went to a woman doctor and after ruling out other conditions we found that I had gallbladder issues and issues with my uterus. When the surgeon came to see me after the surgery, she said she had no idea how I was even walking upright because my abdominal and pelvic area was so full of adhesion’s that she now knows why I was in so much pain. So…. To all those male doctors and my (now ex) husband, it was not in my mind and it was not because I was fat and lazy. At any rate, at first after the surgery it was a relief because the stomach and abdominal pain was less. And I had a little more energy because I wasn’t bleeding 3 weeks a month anymore. However, I started feeling these weird sensations. The only way to describe it is if you have ever had IV contrast for a CT scan and you feel all warm all over and your nerves are awakened and you feel like you will urinate on yourself. I thought I was having a stroke, my mind was dull and my limbs felt weird. I was told it was hot flashes from the hysterectomy. I called 911 a couple of times, one time at a restaurant, because it was so scary. Kept being told it is menopause. Besides this I just always felt like I was getting the flu, that kind of feverish, achy feeling. I called out a few times because I worked at a cancer center and didn’t want to get my patients sick. Also, I was sometimes just too exhausted to go in. My doctors said that sometimes it takes a while for the body to stabilize after a hysterectomy. So I again just went on with life.

Fast forward to 2010. I am laying in my bed with the window open watching my kids play in the back yard. It is a nice cool day and the breeze is nice and crisp. The kids are laughing and running around with our dog. I want to go out and play with them, but I just can’t get out of bed. I feel like I have been run over by a truck. Everything hurts, I feel like someone has put a wet blanket over me, I literally can’t move. My head feels disconnected from my body, you know like when you have taken cold medicine and you feel like your head is floating above your body. Everything aches, even my hair. Two days before this I had finished, and passed, my NCLEX test and was now officially an RN (registered nurse). Finally… after the years of struggle, time lost from my kids, not working because the schedule at this school makes it impossible (the school actually made me sign an agreement that I would not work full-time). So after over two years of living a nightmare, and finally it was over. After the NCLEX I came home and laid down in bed. I felt like I was getting the flu. I stayed there basically incapacitated for days. Now, I didn’t realize this at the time, but this was a Fibromyalgia (FMS) flare up. After years of low energy and pain, I was actually having my first flare. Or at least the worst I have had to that point. This lasted for about the whole month. I just figured it was my body getting over the constant activity and stress of nursing school and the NCLEX. My husband thought I was just delaying getting a job and was over being the only one working so this stress was of course making everything even better. 

Gradually I was able to resume normal activities, but noticed I felt a little off. Like my head just wasn’t right. Like it was slower or something.  After many interviews and searching I did get a job at a local hospital. I was so excited. It was a great job with a great company. I enjoyed my job and I know most people can’t say that. About 6 months into it and after my husband “lost” his job, and I became the only one working. About 2 months later I was examining a patient and all of the sudden felt like I was going to fall over. I felt this wave of exhaustion hit me like I absolutely had to sit down. So I went to the break room and sat there for a minute. That hot feeling started and I was actually starting to have what was my first panic/anxiety attack. I was sent to the ER in the hospital and was told… surprise! It was menopause. The next week or so I was experiencing the feeling more and finally could not get into work because I couldn’t drive. Eventually because I called in so much I lost my job. Then my marriage was over a few months after that and I was a single mother with no job. I do believe stress contributes to the severity of this illness. I had various jobs throughout the last few years, but due to the flare ups and my inability to have an acceptable attendance I lost them. I tried to find remote at home positions but could never find one. I did realize I had to have positions that were not patient care due to the physical demands and I knew that could contribute to my symptoms. I continued to go to different doctors because as of 2012 I still had not had a diagnosis, besides menopause.

The end of 2012, after all the tests and doctor’s visits, I finally had a Provider actually state that “no you are not crazy, you do have Fibromyalgia and Chronic Fatigue Syndrome”. While that was nice to get a diagnosis, it really didn’t change anything. FMS is an Invisible Illness. All people see is that I don’t go anywhere and do anything for extended periods of time. I don’t have an outward sign of illness so most people see me as lazy. I have lost jobs due to illness, even with documentation from my healthcare providers. The job wants to see quantifiable evidence that I am indeed ill. Most of this illness is subjective. The impact is felt by me, and not seen by others. I have had to give up so much because of the symptoms I have. I have tried different treatments but the side effects make life even more miserable. Mostly I just try to manage by not purposefully putting myself in a situation that will cause my symptoms to be worse. Summers in Florida are the hardest because the heat and humidity makes my pain and other symptoms worse. I do go on different forums for FMS patients and try to get as many tips as I can for living with this illness. I have found that when I take Vitamin D and Vitamin B complex I get some improvement. I am slowly adding other supplements to my regimen such as Magnesium and Chromium. One thing I learned is that FMS patients have difficulty absorbing vitamins. I also learned that the Gallbladder removal I had in 2007, the same time I had the hysterectomy, may have been the jumping off point that started the ball rolling in the first place.

How is my life with FMS and CFS? Well as an example, last year I had to give up Annual passes to Disney World. This hurt because my beautiful, brilliant daughter asked for Disney passes for her graduation. She worked so hard and I gladly got them because she deserves them and I was able to get help from someone to purchase them with monthly payments because we are Florida residents. And at the time I was in an upswing in the condition so I saw it as a way to get past the struggle we had the past few years with getting a divorce and all the changes we went through. To look ahead to a brighter future and fun times together. Unfortunately, due to some unforeseen occurrences at my job at the time, namely exposure to mold and other allergens, I was plunged into another FMS flare. The worst yet, I couldn’t drive to work. I couldn’t even do housework most days. And I have been in this flare for months now. So I had to give up the passes because we weren’t able to use them and the money was still being taken out. Just another disappointment on the list for my kids. And I lost my job while on medical leave just as the cherry on top. After I lost my job, I lost my home and car. We moved in with family and here I am trying to figure out my next step… I really hope that at some point I will be able to find a job at home but the search has been fruitless and now I am relying on family charity and this can’t be a permanent solution. The stress of course makes it worse. And no health insurance means no follow-ups with my doctors, not that they were much help to begin with.

This illness is insidious and takes away everything. Maybe someday there will be a cure or treatment that works. Until then, life goes on and I am fighting the invisible.

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