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Still searching for answers

Posted In: Medical Stories 0 Replies
  • Posted By: stevemiller99
  • August 17, 2009
  • 04:18 AM

In 1982 I was jogging and felt a pain like a bee sting in my left hand. I didn't think too much about it at the time, but over the next few days I noticed that every time I stretched my hand or put it in my pocket I felt excruciating pain (like a cigarette burn) followed by numbness in the area surrounding the pain. Over the next several years, I've had more and more of these incidents in my hands, arms, legs, and feet. At the moment I have them in my left foot, left knee, left index finger, and right pinkie. This is problem #1

In 1989 I slipped on an icy patch on base and landed on my backside and hands. I was very sore for a few days and had difficulty walking. I woke up one morning about 6 weeks later with severe pain in my forearms and legs. This is problem #2.

The USAF clinic doctor was unable to find anything wrong and sent me to a neurologist who diagnosed my condition (basically problem #1) as mononeuritis multiplex. He made this diagnosis after a CT scan, an MRI, 2 EMG's, and a series of ECV's. Stumped by the bilateral extremity pain (problem #2), he sent me to Fitzsimmons Regional Army Hospital in Denver for a rheumatology consult. These guys were absolutely clueless, provided no meaningful inputs, and prescribed bilateral epicondyle braces (tennis elbow). At this point, the pain was getting worse and I was having great difficulty walking, writing, or exercising.

The Air Force refused to consider medical retirement (no diagnosis), but with no way of knowing what was wrong, a prognosis, or at what level I would be able to function; I turned down my next assignment and left the Air Force. I spent the next year being poked and prodded without any progress. Over this period, I was diagnosed with ALS, MS, RA, and hyperchondria.

I found a job in Phoenix in 1990 as an engineer and noticed that the heat aggravated my condition. I kept in the air conditioning, started exercising again, and generally noticed improvement until I fell and broke my wrist in 1992. This was a tremendous setback as I noticed a number of symptoms returning.

In 1993, I decided to get an answer. I made an appointment at the Mayo clinic through a referral from the VA. I arrived at the Mayo at 7 am on a Tuesday, spent 2 hours getting signed in, and spent 5 minutes with a doctor. Over the next 2 days, I went through every test the USAF had done 4 years earlier: CT, MRI, X-rays, bloodwork, EMG's, nerve conduction studies, etc. At the end of the second day, I spent another 5 minutes with the doctor who basically told me there was nothing wrong with me. Since he did only a cursory exam (basically tested my reflexes), I was sure he'd based his diagnosis only on the tests. Through an administrative screwup, he sent me his letter of consultation intended for the VA which basically stated that I was making the pain up and if I persisted in complaining about the pain I should be sent for a psych eval.

I lived with the burning sensations and the extremity pain until I was in a serious auto accident in 2001. I was rear ended and ended up with a concussion and sprained neck and back. I went through 18 months of therapy including chiropractic, accupuncture, and conventional medicine. I just decided to move on since nothing really helped. This is problem #3.

6 weeks after the accident, I was laid off from Honeywell. Finding a job was a nightmare: I couldn't focus, I didn't know what day of the week it was, had constant migraines, and was in constant pain on top of my "normal pain".

After a year without health insurance, I found a retail "survival" job which included health insurance along with my minimum wage.

Over the course of the years, several people (not doctors) mentioned that my pain was probably fibromyalgia. I did a lot of research on it but never pursued it.

In 2006, I decided again to seek out the cause of my extremity pain which continued to get worse. My PCP referred me to a rheumatologist who basically told me: men don't have fibromyalgia, it was basically a made up disease, and my pain was caused by overuse (tennis elbow, again) despite the fact that I didn't play tennis and had only limited range of motion in my arms.

In 2007, I had terrible back pain from several old USAF injuries and went to a pain specialist who performed a series of injections on my back. While going through these, he mentioned that my extremity pain was most likely fibromyalgia but there really wasn't much he could do for it. He did, however, prescribe tramadol for the pain.

In 2008, I started to notice swelling in my joints and went to another rheumatologist. He diagnosed the swelling as mild arthritis, changed my anti-inflammatory, and told me that fibromyalgia didn't really exist but was considered a catch-all diagnosis for general aches and pains.

In June of this year, I went to a new PCP who referred me to a different pain guy. This one actually listened. We talked for about 20 minutes. When he mentioned that an injection might help my extremity pain, I persuaded him to do it right then. The injection relieved the pain almost immediately although it paralyzed my right arm for about 2 hours. This was the first relief I've had in 20 years. I went back 2 weeks later to have the left arm injected. At this appointment, he talked about the possibility that my pain was actually CMP (chronic myofascial pain) and that addressing the trigger points was key to getting it under control.

Since that time, I've been researching CMP and fibromyalgia. I've discovered that they can coexist (that's why some of my pain is gone but there is still a lot left), that there has been considerable research done on triggerpoints and CMP (http://www.sover.net/~devstar/), and that my mononeuritis multiplex may be a manifestation of central pain (http://www.centralpain.org/index.html).

I'm very interested in hearing of any connection between these 4 diagnoses (CMP, fibromyalgia, mononeuritis multiplex, and central pain). With my poor experiences with rheumatologists and neurologists, I'd also like recommendations of possible medical specialties (or individuals) which have proven to be of help.

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