My lovely history that many say is "all in my head"

Leah Benton - lbenton2@embarqmail.com

Posted 2008-11-02

In November during a trip from Texas to Tennessee for Thanksgiving 2007 I noticed that sitting became uncomfortable or short periods of time. It is quite a trip, and I had two children to "occupy" me so I thought nothing of it. When we arrived back home and the Holiday's settled down, I realized the pain was actually staying and it has also become part of my sitting at any place in the home as well.

KEY POINT, I am a SEVERE self diagnosed "Type A" personality so I continued to ignore it and it assumed it would get better. I played sports for 3 months of the year and coached 5 months or the reaming year, I was not a sedentary person. I was a call center supervisor so I was able to move around several times a day and that became an increasing need in order to reduce to pain. Meetings became embarrassing because the looks I would make while attempting to stand were no longer ignored and I was be questioned a little more. I began to sit on the sides of my rear causing the disc herniation in L4-5 to worsen, thus to pain for my entire lower body to increase.

I was promoted and the stress increased, but as did the time spent sitting during the day, which of course increased to a minimum of 10 hours during the normal 5 days a week and began to include some time on the weekend. The pain increased, but I really didn't think it had anything to do with my life/workstyle.

I first saw my family doctor who ordered x-rays for all lower parts as well as the tail bone specifically to rule out a broken bones. Those came back normal so he then ordered an MRI for all areas mentioned and the slight disc herniation was discovered. I met with my Neurosurgeon within a month and he prescribed ant-inflammatory as well as physical therapy. I was pleased to hear that my spine was in good condition and as a matter of a lifelong weight problem I was shocked. I had been in at least 4 rear end collisions during a time from of 20 years and the news of having a relatively good spine was a great relief. My ability to sit for about 30 minutes was the limit at this time. The pain going from a sitting to standing position began to really be noticed around this time.

It really seemed no one really knew what it was or what to do. I was really really really frustrated. Did I mention I was Type A? Not knowing why something was happing and what could be done to fix it became an illness in it self. My depression increased week by week. I had severe family issues at the same time, this only added to the stress and was I basically "Stoned" during the family times (multiple deaths in a short period of time.)

I had a follow up with the Neurologist after about 8 weeks, ($80 dollars a week later for physical therapy co pays), more frustration and fewer answers. It seemed the Neurologist had no real answers so he referred me to a "Pain Doctor.'

My first visit with this group made me uncomfortable, I had never experimented with drugs, and if I was going to be prescribed them I'd like to know that the Physician knew me and my family history well. Fifteen minutes in a room with a nurse and then finally the doctor could not do this. I followed his regime and found no real relief.

My insurance changed requiring that I find a new Pain relief doctor and that was the best thing that could have happened to me and my family. I was introduced to John Wages who I think was knew to the Practice group so I was able to get in to see him quickly. He spoke with me for about 20 minutes (two way communication, truly wanted to understand the pain, and offered to do some research, call the prior physician, as well as the Neurologist. We planned to come back to see him in a few weeks. He did proscribe some anti-depressants that were to assist with Nerve pain, another to help me sleep and some mile pain medication. I think at this point I was almost maxed out of Percocet, increased Elavil, and Cymbalta. My job required me to be active 24/7 and to request a day off was not as simple as asking. I was an account manager that impacted 100's of employees. FMLA is great, but in these types of jobs it's not really the option.

Subsequent visits the treatment increased to injections, infrared radiation and a few more which really provided some relief for a while and he became more educated on the disease by working with his peers as well medical research. The relief between the injections lessened to a point where they lasted merely 1 2 weeks between the procedures.

Unfortunately, during this time the time my body began to reduce my ability to sit for only 5 minutes without severe pain. I began to work part time from home to allow me to type while lying in bed (which led to carpal tunnel, neck pain, etc, so that was not the answer) but this was the best answer for me. The medication made me extremely tired and simply getting up at 6 am became a chore. I hadn't mentioned before, but I also had a 3 year old I had to do the hair dress, bathe, and get to school.

I woke up every morning crying, lunch periods in my car crying, and cried myself to sleep. How could anyone expect to live. I thought I was going crazy, I began to avoid standing in public because the rising from a sitting position was what I liked to compare to a " kick in the gentiles for men," it was not a simple ouch. I could not think as well as I used to, maybe a 3/10 and my reaction time to questions and resolutions 3/10. There was so much more to working than showing up. In addition I had a family to raise. My depression grew and grew and I had never really experienced this in my life.

I requested that Dr. Wages allow me to place me on Short term disability, which turned into Long term disability due to the medical trials that were done during this time and the inability to function due to the depression. My Case Manager immediately told me that she might have to use the "Mental Health" plan for disability since there is no REAL proof of the pain.) That was by far the most insulting thing I had been told. When will the medical field catch up to this disease. The danger and subsequent causes of these disease?

I took the disability and after a month of so, was denied so I have been unpaid since August of 2008. My credit is destroyed, we have lost a vehicle and I cannot afford to go to the Therapy needed for the depression. I'm sick that people and even some doctors don't know of care to know of this disease. I personally have been blessed with Dr. Wages and I can honestly say I could have resulted in suicide if it weren't his belief in me and knowing that "I'm not NUTS!")

My claim with Aetna was denied do to lack of communication from their Peer (Dr) and my physician (their doctor supposedly call mine 2 times in a 3 day period, simply attempts in less than a week and I' lost many material items as well as being unable to keep up with the medical appointments and medicines.. WE are filing a claim with Aetna and copying the State of Texas Insurance board along with a complaint with Aetna..

Has anyone had had these issues as well? Thank you for your time and patience in reading my letter, I'm so desperate,

Leah Benton, TX age 41

What is coccydynia? | Investigation and diagnosis | Treatment | Coping with coccyx pain | Find a doctor or specialist

Medical papers | Personal experiences | Links to other sites | Support groups | Site map