Living with a Brain Disorder: Debbie, 31-35, Chronic Fatigue Syndrome, OCD, Dysautonomia

Interviewee: Debbie, age 31-35, from new Jersey was diagnosed with “Chronic Pain/Chronic Fatigue Syndrome/Fibromyalgia – April 2000 Obsessive Compulsive Disorder – about 10-12 years ago suspect Dysautonomia Brain Injury – June 15, 2002 – suspect post concussion syndrome Carpal Tunnel Syndrome – 1999 Hypersomnia – 2000 medication withdrawal seizure June 15, 2002 significant other of person with cerebral palsy (3 1/2 years) teacher/care taker of children/adults with multiple disabilities (14 years) Where – various NJ locations”.

I seem to know more than the doctors. I have a few dozen books, research on the internet, and network with others with my conditions through online groups. I believe that Fibromyalgia is a Neurological Condition. When I had the seizure, it seemed to reset my brain-the symptoms were greatly reduced and have been slowly coming back ever since. Before the seizure, the exhaustion and pain were unbearable and I could not walk unaided-i used knee braces daily and a walker or other supports (the back of my boyfriends wheelchair, shopping carts, etc.) routinely. I strongly believe that Electo Convulsive Therapy and the implantable electrical brain stimulator that is being investigated for depression are the most promising treatments. another posssible treatment is Hyberbaric oxygen therapy-None of these are being researched for Fibromyalgia as far as my knowledge although I have heard that the theory has come up before. Instead, researchers are wasting time and money of treatments that only have a minimal effect. The Oxygen therapy is available, but is time consuming (difficult for an employed person) and expensive-about $4000 and not covered by insurance because it has not been researched-although my insurance is more than willing to pay for treatments taht do not work.

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My symptoms started when I was 5-I was never able to physically keep up with my peers-the fatigue became bad the first time I had Mono at 19, the pain that had been bearable for the most of the time became unbearable in September 1999 after I bruised my hip. Before I got really sick at 19, I was on track to graduate from college a semester early, I held as many as 4 part time jobs while a full time student earning mostly As and Bs and volunteering as an EMT. I ended up graduating a year and a half late (not being able to earn a full time professional salary during that period). I’ve been in and out of work on disability as complications arose-suffering financial hardship. Since 1997, I have tried drug and therapy treatments including homeopathic for the OCD, but have only had minimal relief. Since 2000, I have tried a laundry list of treatment for Fibromyalgia/CFIDS/Chronic Pain-including medications, physical therapy, psychotherapy, electrical stimulation to painful areas (not nervous system), and alternative therapies including acupuncture. Non on the medically recommended treatments have helped-some have caused harm. I am on the verge of Exhaustion everyday-no matter how much I sleep. Right now the pain is bearable most of the time, but it is getting harder to walk. Not even Narcotics helps with the pain when it gets bad-ice packs are helping for now(doctors tell me to use heat, but it could get to the point that they dtop working. I found wrist braces that help the Carpal Tunnel. At the worst point I lost feeling in both hands. I pay out of pocket for the wrist braces as well as the knee braces, because the doctors don’t listen. When I tell them the brace helps-or I need something to keep my knee straight-they give me another precription for narcotics which I tell them don’t work and they tell me to take them day and night even when the pain is only a problem at night and ignore me when I ask them to explain. One drug, Zanaflex, caused by BP to drop to 60/40 and pulse to 40. This happened for months the doc told me it would help me sleep-I was actually passing out-even though my vitals stayed low throughout the day, the docs never noticed there was a problem. Another drug caused me to gain 30 pounds-aggravating the pain-I was never warned about these side effects nor were they listed on the phamacy print out nor were there monitored by the docs. I found the possible post concussion syndrome is aggravated by sunlight and incandescent light-I wear anti glare glasses, stay out of the sun, and keep my indoor lighting low (even though eye doctors preach that I should use bright light by the computer and when reading) I don’t read much anymore-The associate cognitive problems make it difficult for me to follow a story. When I was in high school I was asked to join the Forensic team, now I have difficulty verbally expressing my self. I have found the doctors that claim they specifically treat Fibromyalgia know the least about it-I told one that I was in so much pain I wanted to amputate my legs-his response was that the condition isn’t so bad. Another would change the subject every time I mentioned Fibromyalgia. At one point my chief complaint was knee pain-after 8 months and many visits to the doc his response was that he didn’t know my knees hurt.

For the full interview, please visit the project page.

The GNIF Brain Blogger Living with a Brain Disorder series of excerpted interviews aims to provide unedited insight into the often mysterious minds of brain disorder patients by publishing interviews and professional commentary with afflicted individuals of mental health and neurological or “brain” disorders (e.g. Alzheimer’s, autism, bipolar disorder, depression, developmental disabilities, Parkinson’s, and schizophrenia). The project will encompass the world spectrum of afflicted individuals to identify socio-geographical etiologies, impact of stigmatization, access of medical and mental health information and treatment options, and other features of health promotion.