On the occasion of forwarding my last payment to you, I thought that I should bring you up to date on my condition. In our six years together, I thought what we had was a good patient-doctor relationship ever since I first came to you in 1991 (two years after being rearended while stopped at a light by a druggie doing about 60 mph). You diagnosed me with FMS in about 15 minutes and I was grateful to finally have found what was wrong with me.

My first discomfort with our relationship came when you essentially foiled my lawsuit against the driver that hit me. I remember that I was angry because she got off scot-free, but I was too befuddled to do anything about it. If I knew then what I know today, I would probably be enjoying a nice settlement.

Obtaining my medical records last Fall was an eye-opening experience into our relationship. Prior to seeing them, I could not understand why my evolving and worsening symptoms were basically dismissed by you. From my interpretation of the records, you apparently believed that my primary diagnosis was depression.

Unfortunately, by doing that, whether tacitly or in fact, you've ignored the research concerning FMS and/or CFIDS. Studies have found that the depression usually seen with FMS and CFIDS is concurrent and not a cause of the disease.

However, to be fair, when asked, I always honestly replied that I was depressed. Who wouldn't be? I was losing my beloved career, had lost my marriage, and was even having trouble cleaning my house. In addition, I've certainly had episodes of severe depression over the years. You or Jane had probably seen them all. They were examples of situational depression associated with episodes where I did not know what was happening to me physically or were from the events surrounding my marriage and was feeling helpless and hopeless. Those situations arose quickly and were resolved in an appropriate manner with a minimum of Prozac.

Throughout it all, certainly the drugs prescribed helped, but they eventually became a hindrance.

Early last year, I became most uncomfortable with our relationship when, for the third time, you told me that my condition was secondary to my lacking "nookie." How dare you?

Because I didn't feel that I was any more depressed than anyone else with a chronic condition, I weaned myself off all my drugs to see just what was underlying. I found just what I suspected - I am not clinically depressed. If I were to be relieved of this disease, I would return to being a normal, vital, employable person. The depression I have is a result, not the cause, of my disease.

By taking high doses of amino acids, vitamins, and minerals, I am now in remission of my tender and trigger points, IBS, migraines, tinnitus, bruising, carbohydrate craving, buckling knee, and most other symptoms I now realize are usually associated with FMS and CFS (and which you never found I had). However, because I still had the extreme fatigue and the sleep dysfunction, I sought help from another doctor.

I have been found to have hypogammaglobulinemia. It is severe enough to medically justify treatment with IV gammaglobulin. My extended immunodeficiency panel shows all those T-cell abnormalities normally associated with CFS. You may recall that I repeatedly asked for this testing from you. Instead, you mislead me into believing that the testing had been done and was normal when, in fact, it had never been done. You also denied the existence of CFS.

You also never found my Neurally Mediated Hypotension and I am now on treatment for it.

I felt that you were not believing me when I said I had no energy and was incapable of normal "activities of daily living." I even brought you a long letter explaining all that to you because, since I was having significant cognition problems, I assumed that was the reason you were misunderstanding my situation. When I checked at a later appointment, you denied reading it. When I asked about other research items I had faxed you, you said, "Do you think I have time to read everything patients send to me?" None of those items were in my chart.

I took an early retirement from the hospital in '94 because I could no longer tolerate the stress that came from people wondering how I ever could have been a Nurse Manager or Supervisor with the decreasing cognitive function and fine motor skills I was experiencing. Had I known that all of that was secondary to the FMS and CFS, I would have applied for (and probably received) a full medical retirement and wouldn't be in such dire financial straits as I now am.

Essentially, I have been partially disabled since about 1991 and have been totally disabled since August of 1995. That was not from lack of desire to work nor depression. I even tried my hand at running my own part-time business, but lost the whole thing because I didn't have the energy to promote it like it needed nor the stamina to handle more than one-two visits a day. Also, my cognitive problems continued to worsen so that I had trouble inserting IV's and was afraid of causing an automobile accident or harming a patient. I only was able to work 54 part-time days in the whole of 1996 and nothing since. Yet, as far as you were concerned, there was nothing wrong with me that a little Prozac or "nookie" couldn't cure.

The CDC and NIH recently had a two-hour nationally broadcast conference on CFS expressly for the education of medical personnel. All of the points I've made were included in that conference. Perhaps you should have availed yourself of that program or attempt to get a transcript of it for CEU's.

I would hope that you would not make the mistake with others as you did with me and dismiss the severity of FMS and the existence of CFS. "First, Do No Harm."

Sincerely,

MARILYN J. KERR RN

I have been diagnosed since December, 1995. I was diagnosed by a Nurse Practitioner (she LISTENED) at the local Arthritis Center. How I got to the Arthritis Center was in a round-about way, so let me explain.

I had been experiencing pain in my neck and right shoulder since an auto accident in 1989, but symptoms seemed to be progressing. I developed a more generalized chronic pain, and extreme pain & burning in my left ankle, which radiated upward into my left knee area. (I am overweight and always attributed my pain to my weight--which doctors did as well.) In July of 1992, I got my first teaching job. (I had been a secretary for 13 years following high school graduation and went back to school in 1988). I found that I had a terrible time trying to write on the blackboard. My arm felt "heavy" and fatigued. I went to see my medical doctor and then my orthopedist about the two problems.

They couldn't identify either problem, but the orthopedist put my ankle in an aircast and sent me on to a Rheumatologist for the arm, thinking that perhaps I had some early arthritic process occurring, inasmuch as my ANA was elevated.

The rheumy was no help...he took cervical x-rays and told me he couldn't find anything that would cause the arm fatigue. He ordered an MRI and a lot of blood work, but of course, all tests came back negative.

The ankle pain continued to plague me, and teaching became more and more difficult for me. I didn't understand how I could have gone through college with straight As when reading the newspaper became a chore. I had no concentration. I wasn't sleeping, and had dozens of other symptoms that I now know as FMS. I was beginning to feel like I was losing my mind. I knew that SOMETHING was wrong. Why didn't it show on tests?

The ankle pain sent me to seek help at a pain clinic, where they gave me drugs but no hope; to a neurologist, who had no answers; and finally to a podiatrist, who performed TWO surgeries on my foot/ankle, including the removal of a 5 cm "Neuroma", which left me numb and still in pain.

A friend took pity on me and referred me to a physical therapist who had helped her daughter with myofascial release. I called the therapist to make an appointment, praying for some relief. When she told me that she couldn't see me--that she wasn't in private practice and was connected only through the Arthritis Center, I cried. Literally. She was my last hope. She took pity on me and after some "finagling" agreed to see me if I would go through the Arthritis Center and have an evaluation by the Nurse Practitioner there. I was desperate and agreed to do whatever she asked of me.

After asking me a lot of questions, the NP asked if she could do an exam. She started poking at me and I saw STARS! When she hit my most tender of tender points (above the buttocks), I jumped in pain. She tried to palpate the other side to see if there was a tender point on the other side. "Trust me," I said to her, "And don't touch me there again!"

She left me so that I could dress and when she returned, she brought a pamphlet. I remember her words so well..."I'm not sure about your ankle, but I think that I know what else is going on with you..." and handed me the Fibromyalgia pamphlet that is published by the Arthritis Foundation. As I read it, tears streamed down my face. My demon had a name.

I wrote so much about my pre-diagnosis days, I failed to tell you about life after being diagnosed.

The local Arthritis Center tries to "package" FMS treatment, with an occupational therapist, a physical therapist and a psychotherapist. Not a bad program, except that the Rheumatologist associated with the program has a TERRIBLE bedside manner. I always felt that I had to CONVINCE him that I was in pain.

About 8 months ago, I left his care and transferred to a family care practitioner. He is young, progressive and aggressive in his thirst for knowledge. He reads anything he can on FMS and encourages me to bring in materials for him. When I told him that I was planning on attending the Conference in May in NYC, the first thing he asked was, "Make sure you bring me some information!"

This doctor, Frank Eder, MD, is a doll. He gives me the pain meds I need because he KNOWS I'm in pain. When I note that someone on the List is having success with a new treatment, he's more than willing to experiment with me if I ask him to. He is wonderful, a great listener, and one of the most compassionate people I have ever known.

After years of frustration without a diagnosis, I feel lucky to have such a great doctor. This disease SUCKS, but if I have to have it, I'm glad to have it with Frank Eder, MD.

Rhonda

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