One Man's Story

One of my patients kept a pain diary for seven years to document his ordeal.  Doctor after doctor failed to diagnose or explain his pain to him, much less find him an effective treatment.  His persistence paid off in the end, finding therapies that helped lower his pain and keep him sane until he ultimately stumbled upon The Trigger Point Therapy Workbook by Claire and Amber Davies, which led him to understand what his pain really was and then to search me out.

Excerpted from Myofascial Pain and Treatment: My Story

by S.S.

I am approaching the eighth anniversary of My Ordeal as I call this experience, which began as a feeling of slight numbness and tingling, and became progressively worse, and developed increasing, constant pain.

In the beginning, the many doctors I went to could not diagnose the pain, which I now know is myofascial, caused by a muscle knot. I had never had anything like this before in my life. I sought out both physical and non-physical alternative treatments. It is my desire that what you read is both informative and inspiring.

I experienced vertigo at work in February of 2009 that sent me to the George Washington Hospital Emergency Room. The diagnosis was benign positional vertigo, and there was no recurrence.

However, I soon after developed a burning sensation in my entire left leg, left hip area, and left rib cage area just under my arm pit. I was referred to a neurologist and had an MRI of my brain and neck with contrast. She was not able to find a cause for the burning or vertigo, and prescribed the drug Neurontin (used for seizures) which I did not fill right away. There was a breakdown of communication as I was not assertive enough to press about the cause of my condition when the Neurologist did not seem to have an explanation. My neurologist then ordered a pelvic and lumbar MRI and a motor nerve conduction test, which indicated that I had about 50 percent of sensation in my left leg versus my normal right leg. Additional blood tests were normal except for a lower level of B12. I stopped seeing the neurologist after that.

With the burning sensation being constant 24 hours per day, with the only relief being during sleep, I decided to try acupuncture. I has 11 visits from May 2 to August 22 that did not solve the issue either.

My discomfort level during between March and October 2009 varied from 5 to 8.

I couldn't do anything to decrease the burning sensation other than to avoid strenuous physical exercise - my jogging workout - which I continued to perform during the first 6 to 7 months of this ordeal. The discomfort level stayed near constant during the first seven months. It became a nearly unbearable 7 to 8 by that August. I called my neurologist to see if she had any diagnosis yet. The only thing she mentioned was that there was a slight disk hernia in the L5 area of my spine. I then tried taking the Neurontin for about a week, but I did not see any results or lessening of the discomfort so I discontinued use.

Pain is an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage. It is the feeling common to such experiences as stubbing a toe, burning a finger, putting iodine on a cut, or bumping the funny bone. I do not like to classify my sensation as pain, but more as discomfort. I guess that they are one and the same, but I prefer to think of it as discomfort.

The main area the discomfort was in was my entire left leg from toes to hip, with the main concentration in the left hamstring and thigh area. I describe it as a burning sensation since it was constant: 24 hours a day, and very steady. I kept a daily pain diary about this during my visits to various doctors during that calendar year. The sensations included burning, hitting the nerve in your funny bone, and that feeling you get when you sleep on a body part for a while and lose sensation, and then get tingling while the sensation returns. They could also be described as as having a muscle rub such as Ben Gay all over the leg and then having a heating pad on top of that, or a small ball of fire inside my left thigh/hamstring area.

I observed that the intensity seemed to spike when I performed vigorous physical exercise such as jogging or swimming. It was like having an electronic ankle bracelet that increased the pain, as though punishing me for exercising. It wasn't life-threatening, but it was lifestyle-hindering.

By September I was feeling desperate. The possible disk herniation sent me in search of a rehabilitation clinic, hoping that physical therapy and traction might help.

The physical therapist evaluated me with range of motion and reflex tests. Everything was fine. She looked at MRI films suggested traction for the slight bulge of the L5 disk. I had some relief but after two more weeks nothing much changed and the PT decided the pain was caused by a pinched nerve and not a herniated disk.

I then began my visits to the Virginia Spine Institute where I was also prescribed Naproxen and Neurontin and had further MRIs ordered. After staying on the two drugs for a month and then returning to the Rehabilitation Clinic for six more weeks of physical therapy the burning sensation did not go away, but was more tolerable at a 2.5 to 3, the best since the previous March. During that six weeks at the PT Clinic, I did lumbar stabilization exercises, received ice, heat, TENS, ultrasound and massage. Although this seemed like a good approach, it did not solve the problem.

The doctor at VSI performed a spinal injection in October 2009, thinking perhaps the nerve bundle around the tailbone was inflamed and that a steroid injection might work. Unfortunately this did not provide any relief and finally the doctor at VSI told me after several visits somewhere in mid-November 2009 that he did not know the cause and had no diagnosis.

The final doctor I saw in 2009 was a neurologist recommended by the VSI. I told gave him the entire story including all paperwork MRI films. He prescribed the drug Lyrica and ordered another extensive blood test (five or six more vials of blood and I will state here that I do not like needles). Again they were normal except for a slightly lower level of B12; I pressed him for a diagnosis and some answers as to what I had. He said that he did not know and was doing all he could, and tried prescribing the drug Nortriptyline. I took this for about a month until mid-January 2010 and then stopped. I was very disappointed canceled further appointments.

I was out of leave and did not want to take off more work in attempts to figure this out.

Over the next several months, my doctors tried me on Cyclobenzaprine, Tramadol, and Tylenol w/Codeine,, with very limited results, nothing lasting.

In July of 2010, my mother found a Reiki healer, a spiritual approach I was willing to try since Western medicine had been unable to find a source for the problem or provide any measure of relief. After receiving a Reiki treatment that did a lot of good, I decided to become a student and learn more about Reiki as a self-healing practice. Over the subsequent six years I continued to both study and receive Reiki, and my pain level gradually dropped from 7 and 8 down to 1 and 2 by the summer of 2016.

I then began to learn more about myofascial pain and its causes from two books purchased on line, “Trigger Point Therapy for Myofascial Pain” and “The Trigger Point Therapy Workbook.”

It turned out that I what I had been experiencing was myofascial pain caused by a muscle knot called a trigger point, which is a very contracted part of the muscle that causes spikes in my level of pain. Pain gets the flare-ups when you further contract a muscle that is already tight.

Now that I knew more about my condition, and wanting to get rid of the residual pain, I found a myofascial trigger point specialist named Michele Macomber who operates Myofascial Trigger Point Therapy of Maryland from her home office. I began treatment with her in June of 2016. She studied my posture and the condition of my upper left leg muscles and began to work on releasing all the residual trigger points or knots in the area. She also prescribed several therapeutic leg stretches and introduced me to some helpful self-treatment tools that I began to use and will continue to use.  After my first treatment my pain level became a 0.5.  Within a couple of weeks I was describing it as 0.1. As of the writing of this paper the pain level CONTINUES TO GET LOWER AND LOWER.  I know the discomfort is there, however it does not limit my movement or exercise in any way.  I am not sure if the pain will completely disappear however I do think that it will continue to diminish over time as I continue to use the tools, do the stretches and get treatment from Michele.