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| Dawn of RunningWith.org |
Fibro Warrior Wednesday is back after a short break for the holidays. This week I’m interviewing Dawn of RunningWith.org . We’ve connected on Twitter and G+ lately and I find her to be rather inspiring, I hope you will as well. She was diagnosed in late 2007 at the age of 35.
What lead up to your diagnosis (symptoms, dr visits, etc)?
I had a constant pain in my ankle that would not go away and got worse over the course of 5 months. After 3 visits to my primary and getting nothing more than a shrug and an ace bandage I made an appointment myself to see a Rheumatologist.
Did you have pain in other areas besides your ankle?
I had pain in other places besides the ankle. My back, wrists, arms and legs, neck and shoulders were the worst! But I was making up excuses for it like carrying the car seat, sleeping on a bad mattress, bad sneakers, or I didn’t sleep enough, maybe I worked out too much, needed a multivitamin, old age, stress and a host of other explanations.
Did the Rheumatologist diagnose you right away?
The Rheumatologist did diagnose right away. He was feeling my leg to check my ankle and when applying pressure to various spots on my calf muscle I would wince and moan, so he got curious and started asking questions about my other pain, then did that tender point test and after I almost died, he told me that’s what it was. At first I had no idea what it was, but then I went home and googled it and just cried. I felt so much relief that I was not crazy, but also felt pure devastation. Knowing I would probably never have a cure in my lifetime was very depressing.
Were you working at the time?
I was running a licensed daycare out of my home. I had been full time but due to increasing unexplained pain over the previous 2 years I had reduced my hours to only about 10 a week.
What was your family life like (married? kids? etc?)
I was(still am) married with 3 girls, at the time ages 1, 4 and 18 years. I was very busy but found it harder and harder to keep up.
How did your family initially handle your illness?
At first my husband was relieved that I had an answers for all the unexplained pains, fatigue and illness. But then he worried since there seemed little could be done about it. The kids didn’t really understand except that I was tired all the time.
How has your family/ work situation changed since Fibromyalgia entered your life?
I ended up finally having to quit work to go on disability. My body became of such little use; it was all I could do to take care of my own kids. My marriage became strained because I was always moody, angry, or withdrawn and we had no idea how to fix it. I spent a lot of time at the doctors trying to get better only to have more and more prescriptions thrown at me. I was very unhappy wondering if I would get even worse at any moment.
What do you feel is the most challenging aspect of Fibro?
For me it’s the psychological warfare it inflicts. You can be your own worst enemy. You have to learn something new every day and be able to adapt to every change and that is almost impossible. You can doubt yourself, give up hope, wish for death, or wish for miracles, and then at the drop of a hat life is good again. You think it could all be worse and you are hopeful and optimistic. Your relationships can change, you second guess your friends, wonder if your family believes you and if they don’t, there’s more emotional conflict. You wonder if you are weak, if it was your fault, if it’s a punishment or a lesson. You change eating, sleeping, and exercise patterns. You try different medications, therapies, and tricks and always feel like a guinea pig in a lab. Even different doctors have different theories and you just lose yourself somewhere in all of it. That’s the hardest for me. Losing who I was.
Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
I also have TMJ, Adrenal fatigue, Hypothyroidism, Misophonia, Pulsatile Tinnitus, Hyperacusis, CFS, and a slight anxiety issue. Some are isolated and have no impact of the Fibro but the others (tmj, adrenal fatigue, anxiety and hypothyroid) definitely make my symptoms worse. When I gain weight it strains and stresses more muscles and joints which increases pain. When I get stressed or anxious it triggers muscle tightness which creates more pain, and the more pain I have the more tired and stressed out I become, thus creating even more pain.
What (if anything) have you found/ done that has improved your symptoms?
Regular exercise has helped immensely. Some days I can do a very intense workout and other days just light stretching in front of the tv. But, the key is to move a little every day so you don’t become deconditioned, because that can also create, yet again, more pain. I found physical therapy, massage, and a TENS unit to all be very helpful. Also I changed my eating habits. Very little dairy, red meats, processed foods and when I do its grass fed, organic, and natural to reduce inflammation, and limit the amount of hormones, chemicals and additives I am ingesting. No caffeine, soda, alcohol and things of that nature. I introduced some supplements (such as adrenal supporters, serotonin and thyroid supporters, B12, and magnesium) and that has greatly reduced the need for prescriptions which I am not a fan of. I do take one for the thyroid and an antidepressant and but both are very low doses.
What is the best advice you’ve received regarding Fibromyalgia?
I really never received any advice other than the standard “exercise and eat right”. My accumulated knowledge came from scouring the internet, reading books and talking to others with Fibromyalgia. But I can say the best advice I WISH I got would be to keep trying new things and don’t give up because there may be something, or a combination of things right around the corner that will help you feel better and you will be happy you found it. There is always something to try.
What made you want to blog about your health issues?
I knew that if I felt like no one else in the world could possibly understand what I was going through, there were others feeling the same way. I wanted to find them and let them know they are not alone, and they should not feel guilty, worthless, or weak. That it’s all normal. That what they are thinking and feeling is normal for what we are all living with.
What was the worst advice that you followed?
“You don’t need a specialist”
That is wrong. You need 2 or 3 or 5. You need them and they need to be able to work together to get you the best care and the most relief so you can have your life back.
What is one thing you’ve learned about yourself since your diagnosis?
I learned that I am stronger than I thought. Much stronger. And that makes me feel like I am winning this fight one day at a time.
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