Meet Erin Bailey, a Fibromyalgia warrior who shares her story and personal tips on living with fibromyalgia.Name: Erin Bailey
|Erin Bailey - Fibromyalgia Warrior|
Location: (City / State / Country): Frostburg, MD USA
Occupation: M.S. Graduate Student – Applied Ecology & Conservation Biology
Kind of occupation: Part-time
Year when symptoms started: 2010
Diagnosed in: 2013
Marital Status: Engaged (together for 7 years)
1. What's your story? How and when were you diagnosed with Fibromyalgia? Were you misdiagnosed at the start?
My onset was sudden. My childhood dog passed away over spring break my sophomore year of undergrad. A few weeks later I started to experience pain from head to toe. I was just radiating with pain even sitting still. I also started to wake up with excruciating headaches. Thinking it was just a stress reaction, I went to my primary and got anti-anxiety medication (Celexa). Fast forward three years, my symptoms had progressed and changed. I had seen a neurologist, rheumatologist, genetic counselor, and an ENT doctor, and had been sent on several wild goose chases ranging from terrifying mentions of brain tumors to a possible diagnosis of hypermobile joint syndrome.
I finally saw a rheumatologist that seemed committed to finding me a diagnosis and helping me with my pain. She ran every test she could think of and then some. My diagnosis actually resulted from a trip to urgent care when my back went out while shopping. I was in pain in a way that didn’t make sense to the doctor I saw and she asked if I had fibromyalgia. I went home and researched it and then asked my rheumatologist about it. She looked up the diagnosis criteria and I fit it perfectly. I went home with a frightening diagnosis and a new prescription plan to try. Now looking back I can see clear symptoms of fibro even from a young age including severe bouts of abdominal pain, tendonitis, plantar fasciitis, chest pain, persistent facial pain, and worse than usual growing pains.
2. How would you describe your pain and what kind of symptoms do you face regularly as well as occasionally?
I regularly suffer from deep pain that radiates through my hips down the length of my legs and in my hands, muscular tightness and pain in my back and neck, facial pain, tension headaches, forgetfulness/fogginess, depersonalization, fatigue, constipation, muscle twitching, insomnia, fatigue, and paraesthesia. Less often I suffer from hot flushes, chest pain, blurry or spotted vision, dizziness, and tinnitus. My symptoms change and consistently surprise me. New symptoms sometimes appear long enough for me to freak out and get a referral to a specialist and then disappear once they have inconvenienced me.
3. Do you have any other medical conditions along with fibromyalgia?
I have fructose malabsorption (diagnosed in 2009) and IBS. I manage my fructose malabsorption by avoiding all dietary fructose (so most fruits and sweets).
4. How has your life changed with Fibromyalgia?
I have to plan things ahead of time and I struggle to stay in control. Before volunteering to do anything or taking part in a new activity, I have to think seriously about how my symptoms will be affected and whether or not it will be worth it. I don’t give my time away easily, I ration it according to how I feel in a given week or day. However, the upside of having fibromyalgia has been discovering my personal strengths and taking pride in them.
I try to remind myself that I do what the average person does every day, but while jumping hurdles that no one else sees.
5. How has fibromyalgia affected your relations?
It can create tension when people refuse to acknowledge the severity of fibromyalgia symptoms. It is not like having a cold and it is not like having a baseball injury or soreness from exercising. Overall though, I have been lucky to have understanding people in my life that I can rely on. My fiancé is extremely helpful. He listens to me, helps when he can, and encourages me, while not letting me pity myself too much. He provides just the right balance of support, which has been invaluable.
6. How has fibromyalgia affected your career?
My career involves a lot of physical work outdoors during certain times of the year. I chose this career before I realized the impacts fibromyalgia would have on me. It can be difficult to keep up, but it is definitely an incentive to stay physically fit. I think that the more fit you are, the more able you are to manage your symptoms. My advice to young people diagnosed with fibromyalgia is to take advantage of your situation and get your body into a healthy state (whatever that means to you) while you’re still young so that you will be better able to manage your symptoms as you get older.
7. What kind of specialist you are consulting?
I am not currently seeing anyone, but have seen the best results with a chiropractor. I recommend looking for a chiropractor with a pain management plan that is adjustable based on your changing daily/weekly symptoms.
8. Has your medication changed over the years? What medicines you are having now and are they helping?
I have taken several different medications in the past, but I have learned that I suffer from chemical sensitivity. I’ve had serious side effects from every medication I’ve tried. I currently manage my symptoms (or try to anyways) with exercise, heat, rest, and stress reduction. I occasionally use prescription Tramadol or Flexeril (a muscle relaxer) when my symptoms increase during a flare. I tolerate them well, but can only take them at night because they make me dizzy/foggy/tired.
9. Have you tried alternate therapy? Did it help you?
I was skeptical of chiropractics at first, but seeing a good chiropractor who listened to me provided me with the most benefits out of any treatment I’ve tried. I had significantly reduced back pain and headaches, but unfortunately it is something that you have to keep up with and it can be costly over time.
10. What are your personal tips for relief?
A good heating pad is a must. Wrapping a heating pad around my leg or hip when they hurt or sitting with my back on it for as long as possible every day makes a huge difference for me. Also, stay hydrated and exercise if possible. Even walking for a little while each day makes a difference. And if you’re overwhelmed with pain all over, a hot shower can help you relax. Stretching while in shower helps even more.
11. Do / Can you exercise? What exercises do you do? Do you meditate?
I am fortunate because my body is able to tolerate exercising. I have tried different things, like the elliptical, workout videos, etc. and I have found that running helps me the most. I think it tires my muscles out so that they are forced to loosen up. Getting into a new workout routine can be difficult at first and I have to listen to my body, but if I stick it out I see gradual improvement in how I feel overall. I also have to thoroughly stretch after each and every workout I do.
12. Have you changed your diet / gone gluten free and did it help you?
I have a unique diet because of my fructose malabsorption and I have tried a few different diets (like limiting gluten) and haven’t seen a substantial difference. I’ve also tried taking different supplements like Magnesium and haven’t seen a difference. However, I have seen improvement since I have increased my water intake. Making sure I’m hydrated limits my occurrences of headaches and their severity.
13. What would you like to say to people who know someone with fibromyalgia?
Be patient and listen.
As frustrating as it is for you to listen to the same complaints over and over again, just imagine what it’s like living with a painful condition that you did nothing to deserve and have very little control over.
I woke up one morning with radiating pain and had no idea that it would never go away. It’s hard to accept and it’s hard to cope with, especially as a young person who has a lifetime of struggles to face. Every day is a new challenge and every day we have to wrap our minds around being okay with how we feel. It never seems fair after you’ve had a few good days to wake up in misery and not know when you’ll get relief.
14. What would you like to say to doctors?
If you’re going to say you have experience with a condition, keep up with current research. Also, try to remember that we’re (some of us) hypochondriacs for a reason – we have a weird condition that is usually accompanied by other weird conditions. It’s easy to worry that a new symptom appearing means that we have an additional weird condition.
15. What relations and activities makes you feel better?
It always helps when people check in to see how I’m feeling. I also went to counseling for a few months and it helped just to express myself and have my feelings validated. Pages on social media can be helpful when no one around you understands something specific that you’re going through. It is nice to have a few different communities of people with chronic illnesses/fibromyalgia to ask questions, vent to, or even laugh about situations that we have all been in.
16. When did you join the Fibromyalgia Awareness blog www.fibromyalgiaawareness.com / the blog's Facebook Page? What do you think about our awareness initiative?
I joined the facebook page several months ago when I decided I wanted to keep up with new information about fibromyalgia. I think the awareness initiative is very important. So many people have never heard of fibromyalgia or have negative connotations associated with it because it is difficult to diagnose. I don’t have the answer to what causes fibromyalgia, but chronic pain is a real issue that needs to be addressed and acknowledged.
Interview published on 12th May 2015, Fibromyalgia Awareness Day. This blog and its owner have the rights to this interview. Do not copy the interview on your website / print / publish elsewhere without our prior approval that includes the approval of the interviewee. However, you can share the link of this interview to help us raise awareness. The opinions in the interview are solely of the interviewee and we do not advocate the use of medicines / drugs, if any, mentioned in the interview. Kindly consult your doctor before starting any therapy or medicine mentioned here.
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Fibromyalgia (FMS), one of the most complicated syndromes, affects every patient differently. We bring to you the real stories of Fibromyalgia Patients fromacross the world. Every patient's story is a source of learning and inspiration. These stories serve many purposes like helping us understand the condition and symptoms better, helping people with similar symptoms get diagnosed in time, finding tips that work and making the 'Invisible Illness' visible so that sufferers are saved from the stress of making people understand that they really are unwell.