In 2006, after receiving a procedure in my lower back to try and help control pain, I started getting an odd stinging sensation in my upper left thigh. It was a small, oval area about 9 inches by 4 inches. I really only felt it when I was standing, so I ignored it. Bad move.
Within weeks, it was spreading. Within a month, it was in both legs. Later it was my entire lower body just below the waist.
I was in the Air Force at the time. The stinging had also started to include a bruised feeling, sharp shooting pains, and odd dull sensations in different areas. The stinging was now there all the time and changed its location depending on what I did.
In the middle of this mess, I got new orders.
After moving to my new duty station across the country, I settled in and began trying to find out what was going on. My new job included A LOT of standing. At the time, every doctor was concentrating on my lower back.
My first appointment was not all that great. I drove through a tropical depression to see a neurosurgeon. The doctor told me that there was some slight arthritis and slight bulges, but nothing to explain what I was getting. No pain medication was given either, since I was still on active duty.
I gave it a month and scheduled another appointment when the pain didn’t stop. This time, I got a different doctor. She had the same answer; there wasn’t anything she could do. She did refer me to a neurologist, chiropractor, pain management and a mental health specialist.
Aside from the pain, I was now having problems with fatigue, memory loss, and problems concentrating. I carried a spiral notebook which I named my “memory” and wrote everything down in it for work. I also had a few blackouts that I couldn’t explain.
All of these issues were taking a heavy toll on my depression. I went to a mental health therapist who evaluated me to see if the pain was “in my head.” That came up negative in his opinion. He suggested bio feedback and a few other treatments.
We were having financial problems and I picked up a second job delivering pizzas. That only added to the issues. At work, I was in a position that was not in my intended career field. The Air Force doesn’t like that. So they moved me to a job inside my career field.
At the time, I was in full medical appointment mode. The joke was that I would go to one appointment and it would spawn three more. Neurology had no answer for me. The chiropractor wasn’t working. Pain management wasn’t working, so I was sent to physical therapy. When I got to physical therapy, I told them that the stinging pain now included my groin. They sent me to the ER right away. This happened three times.
The pain was still ramping up in intensity. By 2007, I had to quit my second job as it was way too painful to keep up.
In my new Air Force job, I was gone three out of the first five days. I came back to work the next Monday and was met by a Navy Captain, who wanted me to write down every appointment I had so he could check with my doctors and make sure I wasn’t lying.
On Tuesday, I was asked if I had every discussed going before a medical board. On Wednesday, I was reassigned to my original work station. I knew the writing was on the wall then.
I went to a course that the military offers when you are getting out called TAPS (transition assistance program). Most of it did not pertain to those of us getting out for medical reasons. When they had local hiring agents come give us tips, I asked what I was supposed to say about my medical issues. I was told to not say anything about them.
My only hope was filing for VA disability. They painted the process as being very easy and even gave tips on how to get higher ratings to qualify for disability.
In July of 2007, I was put on the temporary duty retirement list. I was to be re-evaluated every 12 to 18 months to see if they were going to kick me out of the Air Force or take me back in. I at least got to keep my base privileges and health coverage.
I filed for VA disability compensation. I knew I would not be able to work. Memory problems still prevailed and the pain was excruciating. I visited the VA hospital, since the local base did not take retired members.
The nightmare continued. I had to go over every test I had before, every specialty I had seen before, and every treatment I tried before. The only difference was, I got pain meds. After much experimentation and many failures, I was put on hydrocodone.
On the financial front, we were struggling. I went from $1,750 every two weeks to $1,100 a month. I tried to work with our mortgage company and with the VA. Both told me to call the other and refused to work with us. I sent in what I felt I could, trying not to take food off the table for our very young kids.
In 2008, all of the partial payments I had been sending to the bank got sent back. We knew what was next. The bank seized our house. We ended up moving into my wife’s parents’ house and filed for chapter 7 bankruptcy.
I went to the VA where we live now and was in for a shock. During my processing appointment, the doctor told me he wasn’t interested in hearing me explain my symptoms! He wanted me to repeat all the tests I had completed at least a dozen times. I tried for a month to change doctors and had no luck. I decided to go to the base, since the local base takes retired members.
Now comes the change of luck. The doctor I got was VERY good. He actually listened! He decided to work with my pain medicine and get me on something more appropriate. A test on my liver showed that it was turning fatty helped in that decision. He also decided to test for something new: small fiber fibromyalgia. He took 2 skin plugs from my left leg. About a month ago, I got the news. I do have small fiber fibromyalgia.
This is both good and bad. Getting a diagnosis helped with acceptance, but there is no cure on the horizon. I’m very sensitive to heat and overheat easily. I even get daily hot flashes, migraines and vertigo. I have found a natural remedy that helps with the vertigo and migraines, in the form of feverfew. I’m working on growing it in the front lawn.
My past active lifestyle is a thing of the past. I can ride on a full suspension mountain bike on regular roads though. Anything without a suspension hurts. I grit through and do things around the house as well. However, I usually have to take a lot of breaks.
I filed for social security disability, so that we could get out of the in-laws house. That took a year but, I finally got that. I’m also finally off of the temporary duty retirement list. I was lucky enough to be rated high enough to keep base privileges.
I wish doctors would listen more. It seems that you get 2 or 3 appointments with them and they decide it is all in your head. I had one neurologist insinuate it was in my head while telling me I have an “aura of sadness” around me. Well duh, I’M IN PAIN 24/7. How happy would you be?
The other thing I want doctors to know. We’re not after the high when we’re in pain. You know what? We don’t even get high. I have yet to get a high off of any dosage I’ve ever been on for pain. I’d be off of it in a second if I thought I could take the pain. But I just can’t.
Larry Knight lives in Medical Lake, Washington
National Pain Report invites other readers to share their stories with us.
Send them to firstname.lastname@example.org
The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.