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Fibromyalgia Doctors ? Story About Author's Search For Diagnosis And Cure...
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Looking for a Doctor, a Fibromyalgia Doctor? Go Directly to Our Doctor Locating Resources ListBefore Such People As Fibromyalgia Doctors..Medical History BF [Before Fatigue]
Growing up as a child I experienced many common illnesses associated with the developmental years. In my teens I did come down with three not so common disorders.
Entering puberty I had bout with a ligament disorder in both knees called Osgood Slaters [sic] disease. In my teens I had an acute and then chronic infection in my right knee called osteomyelitis. After that a persistent skin disorder known as lichen planus.
Then Came Noticeable Chronic Fatigue
It was 1978 when I started seeking medical advice for being evermore fatigued. The fatigue had built up to a point where it was starting to interfere with my daily activities. The initial response from our family physician, Dr. Oscar Devera, was to say that I might be a little run down, give me a shot of vitamin B-12 and see if I could arrange some time off from work to get some rest. This last piece of advice I never did figure out if the doctor was pulling my leg or being serious. I was in no position to take an extended vacation or leave of absence as he suggested, with my being the sole means of support of my young family.
Around the same time on my mother's recommendation, I started to see an allergist because fatigue could be one reaction to allergies. I did test positive to some tests and went regularly for injections. Although I did feel some improvement I never really got the relief I desired.
The family physician did sent me for other tests including blood work, glucose tolerance tests and the like with no positive results. All tests would come back with negative or inconclusive findings.
Finally Some Physical Evidence
From 1978 to about 1980 the fatigue and aches and pains had increased so much that it was definitely taking an effect on my lifestyle and my work performance. I was nearing my wit's end with extreme confusion, frustration, fear and turmoil. At times the torment of fatigue, the terrorizing fear of the unknown, and the developing inner discussions of not wanting to live this way anymore were getting the best of me.
About that time I noticed that at times of my greatest fatigue I would develop suspicious, warm to the touch, red, sunburn like patches on both my knees. Thinking there may have been a connection with these newer symptoms to my old bouts with osteomyelits, we conferred with the Orthopedic Surgeon, Dr. Trenkle, who successfully treated me for that condition many years before.
Now...The Pursuit!
The good news was that there was no return of osteomyelitis occurring. According to Doctor Trenkle the "red patches" were a possible indication of some inflammation so he recommended me to a rheumatologist, Dr. Sullivan.
As part of my initial physical exam the rheumatologist ordered a work up on my blood. When the test came back, the doctor was surprised that there was little indication of any inflammation in my body even though I still continued to have the red skin patches, resembling a bad sunburn on both my knees. What he did not expect showing up was a higher than normal level of an enzyme known as CPK, for short.
The level was many times normal, but not in the catastrophic levels one would normally associate with diseases such as muscular dystrophy. Being quite puzzled, the Rheumatologist recommended I see a neurologist. At the recommendation of our son's Pediatric Physician Dr. Sheldon Miller, who my wife Nancy and I thought very highly of, we went to see Dr. Sydney Lewis, Neurologist.
At this point I am probably boring you with all these names and details. Needless to say the medical treadmill I was on really started to accelerate at this time, at times feeling like it was in hyper-drive. During this period I was unable to work for a period of about six months, all the while trying to obtain a diagnosis, no less a cure.
The list of the types of doctor's, professionals, and organizations that I sought help from should be an indication of how dedicated my wife and I were to getting some answers. Many of the doctors were tops in their fields. Many took on my case as a challenge, all ended up believing that I was suffering from an unknown physical disorder and was also suffering emotionally due to not knowing the cause of my dilemma.
The list includes The Nassau County Medical Center, a teaching hospital, Dr. Kellerman, Head of Neurology, Columbia-Presbyterian Medical Center, NY [at both these facilities I was given many tests including and sometimes more than once such as EMG, EKG, muscle biopsies, blood work up, psychological evaluations, and many others I can not remember], Mercy Medical Center, Rockville Center, NY, where I signed my self in for two weeks of psychological evaluation apart from any done previously at the other facilities, Counseling and Group Therapy at a Nassau County Mental Health Clinic where they helped me deal with the frustrations of not knowing why I felt the way I did, and the inability of the medical profession to come up with any answers. There were many more professionals who thought they could help that I conferred with and followed advice from including chiropractors, nutritionists, herbalists, osteopaths, etc.
Maybe A Change Of Scenery Will Help??......New Home And A New Search For A Fibromyalgia Doctor!
To make a very long and frustrating story short, after a period of time, my family and I relocated to Stafford County, Virginia from Long Island, New York. We did pursue in Virginia at different times and during the times of more acute physical problems various medical professionals including the Muscular Dystrophy Clinic at Virginia's University Hospital, Charlottesville, VA [due to the continued presence all these years of the elevated levels of CPK enzyme in my blood stream].
It was in Virginia that I first was diagnosed with Chronic Fatigue Syndrome then Fibromyalgia.
The main course of survival has been to work with doctors who can treat my symptoms to get me through each day as productively and as comfortably as possible. While living in Virginia I have consulted specialists in internal medicine, neurology,
rheumatology, etc. I have been recently diagnosed with mild sleep apnea and do CPAP therapy at night but the results have been less than spectacular. I also had a flare up of osteomyelitis during the six months I was recently not able to work and had to undergo two surgeries and intravenous antibiotic therapy to get a handle on this infection in my right leg. It seems that the staph germ was able to lie dormant in my system since my last acute infection of osteomyelitis when I was a teenager. WOW! As far as fibromyalgia symptoms relief, I have had the best results from a family physician who has some understanding of fibromyalgia. He is the closest thing to a Fibromyalgia Doctor I have found, even though he does not call fibromyalgia treatment one of his specialties.
Well, this brings me to April, 2002 and the beginning of this Web site.
The above is a preamble to the Web Log [fibro log] I intend to keep and update on a fairly regular basis describing my condition, thoughts, ideas, possible insights, reflections on my past, my concerns about my future, how I am coping, etc., all in the hope that it may be beneficial to the many fellow suffers out there in their walk with Fibromyalgia and many related conditions.
As mentioned on the home page of this web site, I returned to work on January 28, 2002, after about a six month spell of being too ill to work. I am with the same employer but am not doing the same type of work. My employer, Merchants Tire, was kind enough to allow me to return to a job that is less stressful and also does not require the hours I was used to putting in previously. Of course, there was a drop in compensation, but it is understandable. Winning a big lottery prize would be great, but I am a realist and I was just happy to be currently usefully employed.
© 2002-2006 Managing My Fibromyalgia.com
"Patience is waiting without worrying."
Search For Fibromyalgia Doctors ? Check With Others On Our Message Board..
Would You Like To Find A Doctor Who Treats Fibromyalgia In Your Neck Of The Woods?
Here Are Some Links To Web Pages That Have Lists Of Doctors, Many Recommended By Patients.
We Have Gleaned These From Posts On The "Managing My Fibromyalgia Forum", As Compiled By One Of Our Valued Contributors. Thank you, Crazee8.
http://fmscommunity.org/findingadoctor.htm
The Care providers listed here, have been referred by FM/CMP/CFIDS patients who have had a good experience with the provider. No care giver may self refer to this page. They include Drs in the United States, Canada and South Africa.
http://www.med-help.net/Fibromyalgia-Doctors.html
1) DOCTORS THAT TREAT CHRONIC INTRACTABLE PAIN,
Fibromyalgia, CFIDS, & Myalgic Encephalomyelitis
2) These listings are sent in for posting by either a patient, or the doctors themselves.
http://www.sover.net/~devstar/provider.htm
1) Some of these doctors are knowledgeable in the fields of FMS and CMP. Some are simply willing to listen and support their patients. This information comes from many sources. This list is an attempt to help people find doctors and other health care providers and supporters who have other FMS and/or CMP patients whom they have cared for in an appropriate and kindly manner.
http://www.co-cure.org/Good-Doc.htm
1) This page represents the index to the "CFS & FM Good Doctor List," a collection of listings, of doctors who have been recommended by and for CFS/CFIDS/FM patients.
http://www.rheumatology.org/directory/geo.asp>
1) Doctors listed here are in the United States or International and you can check a box to see who are 'Members providing Patient Care'.
http://www.doctorsforpain.com/physicians/north_america.html
1) These Drs treat patients who have chronic pain. You should call their office to see if they treat fibro patients.
PS. As I have mentioned previously, we *cannot* answer online questions about available medical professionals in any areas, nor many technical questions and questions about recommended treatment protocols via email. We would need a dozen or so staff members in different specialties to do so. If you cannot find your answers on these Web pages, try asking these types of questions at our Managing My Fibromyalgia Forum
Any Comments Or Suggestions? We Would Love To Hear From You!
