This week we are getting to know Fibro Warrior, Kate. I contacted her through my Facebook page and felt that her story needed to be shared. Kate is from Southwestern PA, and she’s single. Kate was diagnosed with Fibromyalgia in November of 2012, at the age of 33. She qualified for disability last spring and is not working.
What lead up to your diagnosis (symptoms, dr visits, etc)?
All my life, I have been tired, never feeling rested. I would experience pain without hurting myself. My friends from the time that I was in college and throughout my life are now recall these symptoms and say that a diagnosis of Fibromyalgia makes complete sense. These are things that I don’t necessarily remember but once my friends shared incidents that they remembered, a lot came back to me. In the spring of 2012, I was in a therapy group and I brought up my symptoms as a concern, but my doctor at that time brushed it off as depression. Others in my group said it sounded like Fibromyalgia or CFS (both of which I have), and said that I should bring it up to the doctor. Well, I switched doctors, shared my symptoms, and she sent me for a battery of tests to rule out auto-immune disorders such as Rheumatoid Arthritis, Lyme disease, or Lupus.
All of the blood tests came back clean, but showed a severe lack of Vitamin D and iron. So, my doctor put me on 1000mg and by that point, I asked for a referral to a rheumatologist. The referral was granted, I met with the rheumatologist soon after and she evaluated me asking me many questions, but also checking via my trigger points. Areas that I didn’t know hurt, she found (i.e. the pads in between my fingers). By gently touching me in those areas, I nearly jumped out of my skin.
What was your life like?
At that point, I had quit a job about a month earlier, but it wasn’t necessarily due to the pain I was dealing with. However, when mentioning to my co-teacher (I’m an educator) that it became increasingly difficult to lift the children (I worked with 1 year olds), she stated (in a not so kind way) that maybe this wasn’t the job for me.
I was depressed, and frustrated, and anxious. I was beating myself up because I fought so hard to be independent once I left my parents house during college and once I officially moved out after I graduated, that I thought I was doing something wrong.
How did your family initially handle your illness?
My mother was in disbelief for a long time. She felt, like a previous doctor, that it was most likely due to my depression. Interestingly enough, over 25-30 years ago, my father was a leading researcher in virology, including Fibromyalgia and CFS. I can understand from a parent’s point of view (even though I’m not yet a parent) that you want only the best for your kids, including their health. But, by virtually disbelieving this diagnosis, provided to me by an MD, it only hurt more. I do have to give my mother credit though…she had gotten much better. She helps to lift my heavy luggage when I come, and doesn’t ask me to do as much of the physical labor as she had I the past. The interesting thing is, physically, I can lift a lot of weight. But with fibro, I know not to, because it’ll come back to bite me.
What do you feel is the most challenging aspect of Fibro?
The most challenging aspect to me is not knowing how your body will react to things and how much pain you will be in, not only daily, but even hourly. I’m sitting on my couch, with my laptop, answering these questions in a flare. I had a very busy weekend with a lot of travel, and that tends to trigger me. I’m surprised it took me this long, honestly. It’s definitely not the worst flare I’ve had, thankfully.
Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
I do have co-existing conditions, some of which are typical, some are not. As I stated above, I was recently diagnosed with CFS. While not officially diagnosed, I believe I have SAD. My sensory processing has changed significantly since Fibro, as I am more sensitive to touch, and certain types of material bother me. I was diagnosed with exercise induced asthma in high school, which has evolved into just “plain” asthma. Also, in high school, I was diagnosed with a form of dyslexia. In my early 30s, I was diagnosed with Mild Spastic Cerebral Palsy, something that, as a special educator, I had suspected for years. I also have severe chronic depression and generalized anxiety disorder. I have restless leg syndrome, and chronic insomnia. I think that’s it. That’s enough, right?
What (if anything) have you found/ done that has improved your symptoms?
If the flares are really bad, there isn’t much I can do aside from take over the counter pain meds and sleep. But, sometimes a bath with epsom salts helps. I try not to stay in one place for long periods of time, but during flares, sometimes that’s the only thing I can do. When I am up to it, I try to exercise, even for short periods of time. I take Gabapentin regularly, which was prescribed by my rheumatologist, and that has definitely helped. I’m grateful that I don’t get flares on a very regular basis, and that they don’t typically last very long. I think now that I am more aware of the “warning signs” typical of a flare. I am more proactive in treating my body kindly before it’s in too much pain to move.
[Tweet “I am more proactive in treating my body kindly before it’s in too much pain”]
How open are you with friends & family about your illness & symptoms?
I have learned which family members and friends are willing to listen to me talk about Fibro and its symptoms. There are some that don’t react well, so I often have to “lie” and say that “I’m fine.” Others ask genuinely and don’t judge me so I am more open to them. But, I tend to be more open about my illness and symptoms with my support groups for fibro on facebook. There, I know I am in a safe place, with people who understand what I am going through and what it feels like.
Do you blog about your illness? If so, what inspired you to do so?
I do have a blog, and I have written about Fibro but the blog is not specific to fibro and my other co-existing diagnoses. In 5th grade, my language arts teacher taught me to write using various mediums. She helped to cultivate my writing ability and helped me realize that sometimes I am better able to express myself through writing, whether it be journaling, writing poetry, etc. It’s not a blog I share publicly.
What is the best advice you’ve received regarding Fibromyalgia?
I think the best advice that I’ve received is to be “kind to yourself”. With fibro, your body reacts differently, and you need to be accommodating to what your body is telling you. I’ve learned the hard way that if you push too hard, you’ll pay.
[Tweet “The best advice that I’ve received is to be “kind to yourself”. #Spoonie”]
What was the worst advice that you followed?
I’m not sure how to answer this question, as I’m not sure I’ve received “bad” advice regarding how to deal with fibro. I think sometimes, though, my brain tells me that I can keep going, even when my body is hurting. There’s still that disconnect that I am trying to fix.
What is your favorite way to cope with your life as a spoonie?
I LOVE taking baths. I set up a bath, with epsom salts, and set up my laptop and watch a movie while the warm water and salt do their magic.
[Tweet “#Spoonie – How does a nice warm bath sound to you?”]
What is one thing you’ve learned about yourself since your diagnosis?
Trust your instincts.
[Tweet “#Fibromyalgia has taught me to trust my instincts.”]
What is the most important piece of advice you would give to someone newly diagnosed with Fibro (or even still seeking a diagnosis)?
Seek out support with those that understand what you are going through. Your friends that don’t have to deal with chronic pain or illnesses can be supportive and empathetic but they don’t understand. I am grateful for my friend who introduced me to support groups and pages on Facebook. There is no need to go through this alone.
[Tweet “#Spoonie Seek out support with those that understand what you are going through.”]
Is there anything else you’d like the readers to know?
I have made incredible friendships through a support page that I am active on. I consider some of these friends my best friends, and I have never met them. However, they understand me on a level that most don’t. On one of the support pages I belong to, the person who started the group, has asked me to help her with managing things on the page. It’s such an incredible honor. I like to pay it forward, and I think that I am starting to do so.
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