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MAY 1, 2015
How a Fish Changed My Life
By Manage My Pain User, Karen
Karen felt challenged trying to explain her symptoms to others
Meet Karen - one of our amazing users who has been gracious enough to share her story. It's amazing how an infection caused by a fish has resulted in a life of agonizing pain, diagnosed by fibromyalgia.
Read her powerful story below.
Tell us about yourself I'm a workaholic. In the past, I typically held more than one job at a time. I never worked only 40 hours a week. I've raised a child, run my home, and have taken care of family. I currently own and operate a Real Estate Brokerage.
When did you first start experiencing pain? In 2007 I contracted a terrible, rare infection called mycobacterium marinum while cleaning a small fish tank. After a small surgery to determine if there were any foreign objects in my finger where the laceration was, I was placed on antibiotics for 6 months to treat the rare disease that I had acquired - known as aquarium granuloma. I felt like I had the flu almost right away and 8 years later I still feel like I have the flu most days.
How did you pain evolve? Since my symptoms were those of the flu and I knew I'd battled a terrible infection in which some people lose limbs, I surmised the infection never really went away. So after talking to the Infectious Disease Doctor several times with the same complaints, he sent me to a Rheumatologist, who, after a couple of visits, diagnosed me with Fibromyalgia. As a result of, or in addition to, it's really unknown, I also suffer Irritable Bowel Syndrome. Obstructive Sleep Apnea, Hypertension and I'm overweight.
What challenges have you experienced getting the care you needed? The primary challenge for me is the public's view and lack of understanding regarding Fibromyalgia. I personally don't like the label though. I know I'm blessed because, while I suffer daily and my quality of life is definitely affected, I don't have a disease that is causing deterioration or will progress leading to death. Because FM is relatively misunderstood, I've been denied for SS Disability, and I've felt some doctors have little faith in what I'm saying. I'm concerned that all of my concerns/symptoms are swept under the proverbial FM rug and therefore disqualified as significant.
I can't explain myself well enough to help people understand, and that's frustrating.
How did you find Manage My Pain and has it helped? I was looking for a way to make sense of the symptoms I was having since I couldn't find any patterns and I found MMP. It must have been 2011 or so. I would take the reports to my doctors, which helped form plans of treatments. It also helped me understand myself and realize I matter. I also used the reports for my SS Disability hearing.
What have you tried to manage your pain? I have tried so many different medications and primarily rely on Tylenol for pain these days. So I take responsibility for my illness by watching what I eat, resting as needed, avoiding tasks that I don't have the energy for and above all work to decrease stress in my life.
Any inspirational tips to help others who might be looking for help as well? I suggest not letting the "trying to figure it out" stage become overwhelming. The priority is take care of one's self, this is paramount and often lost in the shuffle because we all want answers but finding them takes energy. This is how MMP helps because you can lay down and fill out the information on your phone. You can record yesterday's events today when perhaps you feel better. After all that's the point, to make life easier.