Thank you for your warm invitation to the forum. You mentioned that I am a physician, MD,, this is true,,,and I also have Fibro, Myofacial pain , Chronic Fatigue and difficulty sleeping. Having learned to practice medicine or perform surgery does not mean that we are super human. We are just regular people who have experience studying people and illness, observing how people present their problems and try to make them better. We are just like you, but having friends within the medical field and making a career of health issues gives us an advantage when we need medical help.
I see the shortfall, some diseases are easily diagnosed my medical students,, others are mysteries at tertiary care facilities. Some people just have to wait for their autopsy to find out what the problem was! Fibro is hard to diagnose but don't give up. Find a younger doctor who is compassionate and knows about the disease.
What is it that I should share with you. I am a 64 yo eye surgeon. My illness began rather slowly and I hid symptoms in order to build my practice. I knew something was wrong but I was very strong. Little by little, I began to have problems with staying up at night. I would get tired earlier than my friends. ER call was the worse. It was so difficult to run my practice and get studied as a patient for a mysterious illness. Like a bad dream, the nurses would massage my shoulder and neck between surgical cases until I just stopped performing surgery. The fatigue forced me to push myself up with my arms to move around the office from my chair. The nap at mid day only made me feel worse.
Pain began like a ghost. So many tests,,,, two unnecessary surgical procedures,,, my peers felt I was malingering. I was sick but there was no proof. If I were to continue working,,I had to hide the symptoms,,,make excuses,,,hide from the family, etc. I was so strong and successful and watching myself spiral into illness and forced from a career that made me happy.
I had a secret. what was I suffering from? Was my wife poisoning me for my life insurance? WE had 2 young children and I could barely change a diaper. Oh,,, there were good days and bad. Weather bothered me,,,I was cold and would shake with my teeth chattering. I saved my energy for work and avoided activities that would make anybody else happy. I could go on and on.It began 25 years ago.
What about the other doctors? Well, many of them did not believe that the condition was real and were of the understanding that the symptoms are a variant of depression. What about testosterone?/ How are you getting along with your wife? Just relax your muscles..take a vacation,,,stop to smell the roses. OMG,, such ignorance,,,but it was not taught until more recently. How to you make the diagnosis,,,how do you follow the levels of the disease,,what are we treating? What is this condition that doesn't make sense?
It has been getting more attention and studies have found abnormalities in the spinal fluid,, a substance P,, a specific protein . How can we treat it? Well, that is coming and we have to be patient. The doctors should be more willing to give pain medication because it helps with the chronic, gnawing, burning ,,irritating discomfort,, or the severe pain of skeletal muscle spasms. My feet have hard knots called trigger points which hurt when I walk. No body believes me. All of my senses are very acute,,,I smell smoke before anybody else,,I hear the softest sounds,,,my sense of touch is remarkable.
I don't think as quick as I used to,,, I don't move as fast,,, something will hurt,,I'll get a back spasm or feel the little pea under the mattress and be laughed at.
Doctors don't know what we feel. There is nothing else to compare it to. I tell them its like having the flu. Muscle aches and fatigue,,fever dreams,,,If I didn't have a medical background,,I'd swear I was going crazy with bugs crawling on me and my pager buzzing. We must help ourselves.
Most important: you need a safe place. Love your spouse and family and make sure they understand. Don't complain or they will run. They should understand and work with you. No smoking or alcohol,,,sleep enough,,eat nutritious foods. Gentle exercise makes you feel better and don't allow yourself to get out of shape. Swim or walk,,,don't wear your health on your sleeve. Do what makes you happy if you can. Please don't complain about money,,,do with less and enjoy it more. Get your mind off of it. Find a doctor who will work with you. They can legally prescribe narcotics if they document that other medications don't help and that there is improvement with pain pills. Don't feel guilt and don't tell people that you always feel terrible! Your friends will burn out and you Must trust your spouse to be with you forever,,,,you should share this with a spouse,,,or it's the wrong person. It's not your fault that you got sick,,,,,it could have been the other way around. And besides,,, push yourself to Make it work if the relationship is worth it,,,"for better or for worse till death do us part."
I wrote too much. You asked me to share, I have a story like all of you have. This is our cross to bear and its your choice how to live with the condition. It is being recognized,, there are FDA approved medication to try,, and many doctors will provide pain medication for you. It requires a lot of monitoring,,,trips to the office and money. I hope this information helps someone,, thank you for inviting me to speak. If there are specific questions ,,,please bring them up. You will not die from Fibromyalgia and it is up to you how you allow it to impact your lives. You will need to make changes in order live your life with a chronic problem. Many people enjoy their lives with insulin dependent diabetes, severe Rheumatoid Arthritis, Lupus,,etc. Take charge of your health and your actions,,,,enjoy the things you can and avoid the things that don't work for you. It is ok to rest and take pain medication but don't give up. Try to keep your weight down and continue to move around. My wife is my best friend!
Good luck to all of you,
Dr Bob
