When were you diagnosed?
I was diagnosed with Fibromyalgia last year, but was also diagnosed with Dysautonomia, Mitral Valve Prolapse, and Sleep Apnea two years ago after being sick for 13 years prior to my diagnosis. I believe that the Dysautonomia, malfunction of the Autonomic Nervous System, (where everything that your body does automatically goes awry), lead to my Central Nervous System sensitivity with the Fibromyalgia. This is just a scientific theory of mine. I also am equivocal for Scleroderma, too, which means I'm on the border between negative and positive for this test.
What symptoms, Dr visits, etc lead up to your diagnosis?Actually, 15 years ago in 1998, I had gone to a Neurologist, Cardiologist and Rheumatologist. Being a nurse, I have some medical knowledge. Initially, I had a virus that left me with severe pain in my left eye, and right sided weakness, and neuritis, but to no avail, all my tests were negative. I thought I had optic neuritis with possible Multiple Sclerosis, or a slight stroke, which runs in my family. My dad also had a brain aneurysm at 59. I knew something was wrong with me, but the doctor's couldn't find anything, and I was tired of going to doctors. I was hypertensive at the time and put on medication for that, plus my cholesterol was high, also. So, my primary care physician had me on medication for that, as well. My vision loss and nerve pain concerned me, but I decided I would wait until something else occurred. I had the flu in November of 2002, and ended up with my Eustachian tube malfunctioning; my right ear felt as if I was hearing through a tunnel, and had surgery on that ear in March of 2003 by Dr. Davis, an ENT here in Huntsville.
In the fall of 2004, I coughed up a 1/4 cup of frank blood, which concerned me, because I could end up with a pulmonary embolism, so I went to the emergency room the next morning. After waiting 8 hours, (don't ever go to the emergency room, unless you're dying), chest xray, and lung scan, they determined I had kyphosis of the spine, and a mass in my lung. I'm thinking I have lung cancer or TB after leaving the ER. When I was sent to the Pulmonologist 3 days later, he told me I had bronchitis. I didn't even have a cold or a cough. Then in October 2008, I had severe dizziness, vertigo, and vomiting and could hardly walk and went back to Dr. Davis, and was diagnosed with Vestibular Neuritis, which he said would go away in a few weeks. In April of 2009 I had the same symptoms and diagnosed with the same thing, even after being tested for Meniere's Disease. For three years I was dizzy all the time, fatigued, nauseated, and weak, and finally after running my car into curbs, just driving 5 minutes from my house on three separate occasions, with major damage to the under carriage of my car, not to mention scraping the side of my car, God told me it was time to go back to the doctor. I was also having a lot of pain in my left side, and was scheduled for a colonoscopy. This ended up being paid for by the insurance company the day I had it scheduled, since my husband finally was able to go full time from part time work.
I searched the internet and found nationwide testimonials on Shay's ear clinic in Memphis, and Dr. Pappas from St. Vincent's in Birmingham. I called desperate for an appointment for Dr. Pappas in Birmingham. My son lived in a small home that we bought there, while he was attending physical therapy school at UAB. When I called, their first appointment was in three weeks, and it was Dr. Pappas Jr., his son. I figured the apple didn't fall far from the tree. What I didn't know at the time, but of course God knew, he had done a thesis on Autonomic Vertigo. Even before testing me, he knew what was wrong with me, and sent me to the Autonomic Disorder Center of Alabama, also in Birmingham, to Dr. Susan Jane Phillips. There, I was diagnosed with Dysautonomia/Mitral Valve Prolapse, and she sent me to Dr. Adams at the Sleep Disorders Center of Alabama of UAB, where I was also diagnosed with Sleep Apnea.
Dr. Pappas tested me with 4 ear tests including Menieres and I was negative for that. I had no hearing deficit either. Then after telling Dr. Phillips about the pain in my legs a year later, which I just figured was a part of the Dysautonomia, she sent me to a Rheumatologist, (who I had already been to 14 years previous, Dr. Macon Phillips, of Rheumatology and Associates in Huntsville), and I was diagnosed with Fibromyalgia. Meanwhile, I had already been on Gabapentin for Trigeminal Neuralgia on the right side of my face, neck and jaw, several weeks prior to my visit, so Tim Byrum, my nurse practitioner, continued me on the same medication, and continued to increase the dosage until I reached what he thought was good for my pain level, although I've just increased it recently, within the last 3 days. I was also very low in Vitamin D3 at one point, and have gotten my numbers up by taking supplements. I've just been diagnosed with Osteopenia, and was taking calcium, as well, knowing that osteoporosis runs in my family, too.
Were you working at the time?No, but if I had been, I would have had to quit at that point, because I could hardly function. I was extremely fatigued, weak, nauseated, and dizzy. I had bladder and bowel issues, as well. I still have motion sickness, but with medication, I am so much better.
What was your family life like (married? kids? etc?) ?I am married to Tom Schneider, a wonderful man I met many years ago in the laundry room, at our New Orleans apartment, Frenchman's Wharf! It will be 31 years in August!! We celebrated our 30th anniversary at Perdido Beach Resort in Orange Beach, Alabama. I would highly recommend it. It was a wonderful vacation. We went on a Sunset Cruise, and also went Para sailing, but I had to take Zofran, to keep my motion sickness at bay.
We have 2 sons, Heath and Logan. Both are on their own; Heath, my first son, has been married for a year and a half to Megan; He is a Doctor of Physical Therapy, and they both live in Lafayette, Louisiana. Megan is a regional Vice President of the Shumacher Group scheduling Physicians, their assistants, and Nurse Practioners in the ER's of hospitals in the area. They just bought their first house! Logan, my second son, works at Boeing in the Space Launch Systems Program as an Integrated Scheduling Specialist, but will be changing jobs next month in the same group in Materials and Finance. He just traveled back from a European Vacation with some friends from Elementary School. It was a life time opportunity, that they will never forget!!
How did your family initially handle your illness?Actually my second son, Logan, being at home, seeing my decline, kept encouraging me to go back to the doctor, and seemed the most concerned. My husband has been a jewel in taking me to all my Birmingham appointments, because of my motion sickness and vision issues. At first, he was skeptical, because as you know, these are illnesses that are invisible. But once I started getting diagnosed, he is sensitive to my needs and very supportive. Heath was very involved in school, and having a long distance relationship with Megan, and was very distracted with his own career, but was genuinely concerned, as well.
How has your family/ work situation changed since Fibromyalgia entered your life?It hasn't, because I was not working, and our sons are on their own. However, my husband was out of work for about 10 months, then part time, which delayed me finding out what was wrong with me, because our health insurance didn't cover as much. Since I was having GI issues at the time, I finally had to get a colonoscopy done, and the job and insurance kicked in just in the nick of time. God's perfect timing!
What do you feel is the most challenging aspect of Fibro?Not always being able to what I was used to doing before being diagnosed. I was very active. I danced, horse back rode, hiked, and attended all my sons sports events, school activities. I also used to scuba dive, and ski, which I can't see me doing anymore. I'm looking forward to seeing grandchildren. I've had the opportunity to travel to see my great nieces and nephews. I'm a Great Aunt 5 times now!!
What (if anything) have you found/ done that has improved your symptoms?I'm eating a better diet, now that I'm not as nauseated, I'm walking my dog, doing the elliptical 2 times a week, and I am stretching, and attended a several yoga classes, which were helpful. I'm also on anti inflammatory supplements, Flax seed oil.
What is the best advice you've received regarding Fibromyalgia?"For the joy of the Lord is my strength" Nehemiah 8:10 "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalm 73:26
What was the worst advice that you followed?I don't believe that I've received any bad advice. I've done a lot of medical reading and have the knowledge, being a retired RN, so I'm always skeptical and tread lightly. Meaning, I don't believe all that I read, although I'm finding that taking supplements along with all my medications seems to be helping me become stronger. I am working on my diet right now to decrease inflammation, and increase my protein intake.
What would be your first advice to someone that just found out they have Fibro?My first advice to someone who just found out they had fibro, would be to give them a "gentle hug", even if it's a "cyber one", encourage them, knowing what it is like to have Fibro, pray for them, and then tell them to find a group of others with the same diagnosis for support, whether it be through Facebook, another organization on the internet, and to find a group that meets in their area, so that they can receive love from others who understand what it is like to live with a chronic disorder, which still isn't well understood.
If you would like to get to know Kim better, you can find her on Facebook, or email her at email@example.com
This is part of my weekly series "Fibro Warrior Wednesday". If you are a Fibro Warrior and would be willing to share your story, please email me.