Fibro Warrior of the Week (#2)
FWOTW: Mary D’Auria Allen
Location: Riverhead, NY USA
Mantra: I have Fibromyalgia, but it doesn’t have me! Take control with diet, exercise & supplements. Gluten free recipes, Fibromyalgia research, CFS, Depression & Health.
We’re very happy that Mary Allen agreed to be our second FWOTW! She’s been a Twitter friend since we started FibroDaily.com, and her struggle with Fibromyalgia has relevance for us all. -FD
FD: Tell us a bit about yourself – Where were you born, where do you live now, family, interests, etc.
Mary: I am 46 years old. I am the oldest of five children from a strict Italian family. I was born on Long Island, NY and still live here with my husband and 2 teenage daughters. I have a B.S. in Early Childhood Development. Before I became sick with Fibromyalgia, I worked in a preschool and loved it. My whole world revolved around raising my children in the best way possible. Now I can’t even catch up to them! I am interested in gluten free recipes, products, and foods that naturally eliminate inflammation. I love to crochet, volunteer (especially with my daughters), listen to music (‘Let It Be’ is my favorite song) and watch reality TV. My celebrity crush is Simon Cowell, so right now my favorite show is the X Factor. I live in a quiet middle class neighborhood near the ocean, bay or sound. I love the beach and watching sunsets. I love doing anything with my daughters. I am Catholic and my faith plays a big role in my life. One of my biggest goals in life is to pass on my faith to my children.
FD: When did you first suspect that something wasn’t right? What happened?
Mary: About 5 years ago I noticed that I was tired. Not regular tired, but extremely exhausted, even if I slept all night. I also had increasing severe headaches, about 3 per week. I also felt like I had the flu. My whole body ached and throbbed with pain. My muscles would lock up after being in one position for a period of time. I felt paralyzed (still do) by stiffness and could not move right away, taking some time to “warm up”. I had to take a muscle relaxer and wait for about an hour before attempting to get up. I also had brain fog which caused me to forget everything. I drop things all the time and lose my balance and fall. I was in so much pain, I thought I was dying.
FD: When were you diagnosed with Fibromyalgia?
Mary: I wasn’t diagnosed with Fibromyalgia until 9/2010, at a state hospital. I was in such bad shape I ended up in their ER. They had me stay and did lots of tests. I found out that I have Cervical Spinal Stenosis, Fibromyalgia, and Chronic Fatigue Syndrome.
FD: When you received your diagnosis, how did it affect you?
Mary: When I received my diagnosis I was glad they found out what is was, but I was also scared. Basically after telling me I had Fibromyalgia, they discharged me with no instructions. My primary care physician sent me to a rheumatologist who was very kind, but did nothing to help me. He just kept running more tests. No one in my family believed the diagnosis of Fibromyalgia and they still do not. They think the pain is all in my head. I realized early on that I had no support. The rheumatologist almost killed me by putting me on Prednisone. My body did not react well and my symptoms got worse. My primary care physician took me off of it right away, but I suffered the consequences for months.
FD: Since then, how has your outlook on life changed?
Mary: I was already depressed and after the diagnosis my depression worsened. I was desperate to find someone to help me, but quickly realized that no doctor wanted to take my case or my insurance. I figured I would have to get used to the pain and live with it. Then in 12/2011 I started having intense stomach pain & IBS (around the same time as the Prednisone). The pain was so bad that I was bedridden from 12/2011 to 3/2012. I lost 50lbs just lying in bed. I was in and out of my local hospital and the doctors at the hospital could not explain my stomach pain. They did every test possible. It eventually got to the point where they would see me coming, give me a Valium and send me home.
My primary care doctor told me that IBS was part of Fibromyalgia and prescribed medicine to help my digestive system. The medicine did not help. It wasn’t until I did research on my own that I learned that eliminating gluten from my diet might help. So I went gluten free. I immediately felt 50% better. I could finally get out of bed, but doing anything more than that was a problem. My stomach pain lessened a great deal, but I still had debilitating symptoms of IBS. After 3/2012 the progression of improvement was painfully slow. So I did more research & learned that not only should I be gluten free, I should also be on an anti-inflammatory diet. Boy, did that make a difference. For the most part my IBS is gone.
I know now that doctors don’t know how to help me, and that I have to help myself by doing research, adjusting my diet, and asking for muscle relaxers and pain medication. I also started physical therapy. I started out in a warm pool and now I am exercising using equipment 5 days a week. It isn’t easy, but I don’t want a repeat of last winter, so I push myself through it.
FD: How does Fibro affect your day to day life?
Mary: Fibromyalgia effects my daily life in the following ways: Pain wakes me up several times a night. It hurts to lay down. If I am lying on my side, that area will become sore within 1/2 hour. I have to keep changing positions. My last pain wake up is around 5am. I then take pain medication and a muscle relaxant. I feel paralyzed by muscle stiffness and can’t move. After waiting for the medicine to start working, I try to get up, but about 1/2 the time I fall. When I am on the ground I again feel paralyzed and I can’t move. I have to wait a few minutes & try again.
When I finally get up and get moving, I (painfully) take care of our pets before taking a hot, hot shower. The hot water running over me feels great, I could stay in there all day. But then I have to wash my hair and just the motion of putting my hands over my head is extremely painful. Once I survive the shower, I feel a little better.
Normally by the time I get out of the shower and get dressed, the medicine is working. I’m able to take the kids to school and go to physical therapy. This is also painful. When I am done, I can’t wait to get home and lay down. I usually end up falling asleep until it is time to pick up the kids. Then I take my 2nd and final round of muscle relaxer and pain medication so I can function when the kids get home so I can make dinner and take them to after-school activities. I am usually done with physical activity for the day by 7pm and lay on the couch until 9pm before I go to bed – only to repeat the whole cycle all over again.
FD: What can’t you do anymore because of Fibro?
Mary: Because of Fibromyalgia I can not climb stairs without help. I have a handicapped sticker for my car because I can not walk far. I miss out on a lot with the kids. Last night one of my daughters was in a school play, but It started at 8pm and there was just no way I could make it. I was in a lot of pain, had a severe headache and was exhausted. I am hoping to make it tonight.
I have missed sunsets, walks, and bike rides. I have missed outings to the beach, going fishing, going to concerts, fireworks displays, and taking the kids to carnivals. I haven’t been to a parent/teacher conference in years. I used to be so involved with my children’s school, now I can’t help them anymore.
I never imagined that I would be a “ghost” in my children’s lives. I never thought I’d be turned away from doctors. I realize now that I am on my own. When I go see my primary care physician I now have to do research and bring notes. I need to do her job for her. I research on the Internet and talk to others with Fibromyalgia. When I go to the doctor, I already know which muscle relaxers and pain medications will work for Fibro. I have to ask her to write a prescription for physical therapy. If I don’t, she won’t think of it on her own. I never thought I’d ever have to do all this. I never thought that a doctor would have no clue what to do with me.
FD: Name something you do now that you never would have imagined happening before your diagnosis.
Mary: Growing up in an Italian family meant lots of homemade pasta, homemade bread, homemade pizza & tons of baking during the holidays. I never imagined living gluten free. I can no longer make my grandmother’s recipes, which she wrote on index cards for me before she died. There is a mourning process for me going on since I became gluten free. Especially at this time of year, I am flooded with happy memories of baking with my grandmother and getting ready for Christmas. I often ask myself – what would my grandmother want for me in this situation? The answer of course is that she would want me to be happy and healthy, and if that meant not eating gluten then so be it! She would want me to find ways to cook without gluten. I imagine that she would want me to be proactive in this process.
Happy memories of my grandmother are one of the things that help me get through tough times, and all of the memories revolve around cooking Italian food! What prompted me to go on a gluten free diet was the extreme abdominal pain I was experiencing last winter. The answers I got from doctors were that either there was nothing wrong, or IBS is a symptom of Fibromyalgia, so get used to it. That didn’t seem right to me. I had heard of IBS being a symptom, but I felt that the pain I was experiencing went deeper then that. I was so bad that I was pretty much bedridden. I didn’t want to live that way anymore. That is when I took matters into my own hands. I did research on IBS with Fibroimyalgia. All of the answers I found online led me to eliminate gluten from my diet. So I did and was rewarded with good results.
However, the results where not good enough for me. I still couldn’t go anywhere unless I knew they had a bathroom. I couldn’t go on long car rides or to a beach that didn’t have a bathroom. IBS can strike at any moment, without warning. I knew that there was something not right and I needed to do more research. I remembered that every time a doctor did blood work on me I was told that my “inflammation markers” where high. None of the doctors could give a reason for it or what to do about it. I learned through my research that eliminating certain foods and eating non-processed foods like whole fruits, vegetables, beans and unprocessed foods naturally high in fiber may make a difference. Gluten and processed foods can cause IBS, aches, depression, headaches, exhaustion, and pain. I quickly added beans, fruit, foods high in fiber and a fiber supplement to my diet. I eliminated all junk food, even if it was gluten free. The results were amazing. I no longer have IBS or any abdominal problems/pain.
It is a hard diet to stick to, I miss bagels and pizza the most, but I know it’s what I need to do to help myself. My next blood test after changing my diet showed no inflammation. All of my research was done on the internet. There is tons of information out there about diet and Fibromyalgia. I encourage anyone with Fibromyalgia or similar condition to eliminate gluten from their diet and add foods that are naturally anti-inflammatory. I do not have Celiac Disease. I am gluten intolerant. Both Celiac Disease and gluten intolerance can be made worse by emotional stress, infection, and certain proteins found in grains such as wheat, rye barley, oats, fried foods, processed foods and fast food.
FD: What has been your experience with seeking medical treatment for Fibro?
Mary: My experience seeking medical treatment has been hell! Either they don’t want to take my case or they don’t take my insurance. Once again, I am online trying to find a Fibro doctor that takes my insurance, but so far I can’t find one.
This journey continues to be so frustrating and distressing. Right now I am relying on my primary care physician. She wants me to try another rheumatologist, but I’m not so sure. My experience with rheumatologists is that they don’t believe you, your symptoms, or Fibromyalgia. I hate having wait months for an appointment, only to get disappointed all over again.
On the looking up side, I found the best Pain Management Program that exists on Long Island & they have one doctor who takes my insurance. Sounds good, right? Well, I won’t know for a while. I am on a nine month waiting list. Finding a good doctor that believes you and that has experience with treating Fibromyalgia is such hard work and full of disappointments.
FD: How has Fibro affected your relationships, friends, family, partners?
Mary: I didn’t have a good relationship with my family to begin with. Now, they don’t believe my pain or my Fibromyalgia. I have no support. My kids are frustrated with me because I keep forgetting things that they have told me because of fibro fog. I can’t work to help support the household. I miss school events because of pain. I feel like a failure. I feel alienated by my parents and my siblings.
My biggest challenge is just getting through each day, doing the best I can. I know that I can only stand one outing per day. I take my medication at select times according to my children’s schedule. The most painful thing is telling them “I can’t” when they want me to do something.
FD: What inspires you to keep on fighting?
Mary: What inspires me to keep fighting is my children. I want to be a good mother. I want to be able to do things with them. I want to take care of them. I don’t want to be an outsider in their lives. That’s why I push myself to exercise, even though it is painful. I would do anything in the world for them. They are my best friends and I want to be there for them.
FD: What advice do you have for other people who are living with Fibro?
Mary: My advice for others with Fibro is not to give up. Fight for a doctor who will help you. If your insurance covers it, go to physical therapy, go to a chiropractor, and get massages on a regular basis. Take your pain medication when you need to, but also research what supplements are good for someone with Fibro. Find out if your town has a heated indoor pool. Know your limits. Rest when you need to. Plan your day ahead of time, based on your limits.
FD: Do you have a good Fibro story you can share?
Mary: None of my experiences with Fibro have been funny. They are all painful and distressing. I feel embarrassed because of my fibro fog and sad when I miss out on things. I wish I had a funny story, but I don’t.
FD: No worries. Finding humor in all of this is not always easy. What’s important is that we’ve all learned a lot from you. We wish you the best and hope you’re able to find relief sooner than later, and our fingers are crossed that the new doctor is a good one. Thanks for your time!
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