Article I Read That May Explain Some Doctor Reactions

Dr.Bob,
I take Tramadol 100 mg slow release, once a day, for two years, so I can continue to work
There are other drugs thatpeople should be aware of, make sure they get drug interaction list from their
Pharmasist. It may seem strange but I can't take ultram 50 mg tabs, make me twitch.
I am seeing a doctor who promotes, heathy eating, protein with each meal. Lots of veggies
I am not to overdo, which is hard not to do. My life is family complicated, and have a physically demanding job.
Money, got to have it or be homeless. Always a catch in life. Oh also cold makes fibro worse
Winter, stay warm, do no use cold treatments. Got to, take care.

Welcome Bob! Beings that you also suffer from fibro and the many other associated illnesses, I just wanted to welcome you as the person. Being a physician in the forum is such a treat. I hope we can ask you questions, but also open up to you if you have questions for us. I personally have suffered with insomnia, chronic pain, arthritis and degenerative discs for years. Slowly, my issues have increased to include chronic fatigue, overall pain, headaches and migraines, colitis and IBS and now anxiety. Having had a minor heart-attack at 49, I've really had a wake-up call in life. The forum has been a wonderful place to voice whatever you are thinking about. What I have discovered is that many on the forum have questions or words of encouragement and many also have suggestions on what's worked for them or how to get through a difficult situation. I have gone through my share of venting and complaining and have tried to also provide encouragement and support.

Thank you so much for the valuable information and insight you provided. It has been much appreciated by me and obviously others. I personally didn't have any change with Tramadol and continue to keep hydrocodone close for when I have bad days, or if I really want to get something physical done. I'm currently on Cymbalta, but not sure what I think of it yet. I'm getting tired of taking so much medication quite honestly. My goal is to make some drastic changes in life and hope that I can get off some of what I'm currently taking.

If you ever just want to be Bob, and not Dr. Bob, don't hesitate to say so, otherwise, we'll feel free to continue to pick your brain and draw on your wisdom..... ;-)

Thank you Dr. Bob for your knowledge and support! And thank you for explaining things from the doctor's point of view!

This makes me so angry, To think that there is Lazy bums out there trying to collect Disability when they are capable of working. this is why Doctors don't trust us. I can't wait until the day when Fibromyalgia test confirm the illness. That will be a good day for all of us.

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

Good luck to you too Dr. Bob....Wise words and a positive attitude. The journey each of us is on is like a river trip...We're bumping along the rapids. We can fight what's happening to us, or accept it an roll with the flow. I think all of us get down once in a while. It stands to reason that if a person is struggling through multiple health issues, it's going to get to you. I agree with you that many people enjoy their lives with various health conditions. I can say that as my issues worsened and new autoimmune diseases developed, my husband finally got it and has been my rock. He's stepped in where I can't. We're both scared because we've lived pretty comfortably and since I'm the major bread winner, the loss of my income is HUGE, but I just can't do it anymore. I can't pretend at work. Before I was put on a medical leave of absence (by my physician), I would be just great one day, then the next 3-5, I'd be out. It's difficult for people to understand how that works because on the outside, we look normal and healthy.

Pain meds help me to move. Used to be if I really wanted to get something done, or do something that requires physical activity (riding quads, horses, yard work, etc.), taking a series of pain meds before I started and 4-6 hours into whatever I was doing, then another before the end of the day. Now, while it helps, sometimes the significant fatigue prevents me from even getting off the ground with getting something done.....That's okay, I'm coming to be at peace with it. I have never been closer with my husband and now that I'm on leave, I have gotten to spend so much more time with my daughter. Things happen for a reason....Maybe the reason is that the multiple illnesses will force me to be home more than I would have been otherwise. It'll become clear as time goes on.....

Hi,

I read your story several times before writing because I didn't want to make a mistake in this reply. When your illness began, you were able to cover your symptoms with pain medication. Over time, this little trick was less effective and your symptoms evolved into an illness that was medically diagnosed. You say that Autoimmune diseases began to show up. Well, is that Fibro? I am just putting myself out there to seek truth. There are many autoimmune diseases ,, Google them. The best known are Lupus and Rheumatoid Arthritis and there are some yet to be discovered. Patients can complain of symptoms similar to Fibro but lab work reveals a positive finding and a diagnosis can be made. This is not Fibro,,, it is the illness itself which often can be treated.

In Fibro, we are not seeing the typical inflammation of tissue or the worsening of some aspects. There is no lab work to follow to control the symptoms. We do not show antibodies to our own body. Your diagnosis is made,,, ours is not.

You write well and seem to be a bright person,,,please stay with our forum without confusing the rest of the group. Your illness started like Fibro but it wasn't and a diagnosis has been made. This is good information for our group and I thank you for your honesty.

I am guessing that your lab work revealed an autoimmune antibody or they found an antigen specific antibody. A medical diagnosis was made. If that is what happened,,, You have a new label,,, not Fibro. Many chronic illness is not detected by lab work for years. WE, as a patient, are aware that something is wrong and we complain. Our Docs can't find anything wrong and that is where we have huge problems finding a 'believer' or a Dr who has predetermined that its all in your head.

Well, the good thing is that you have discovered a specific illness that is causing your symptoms. Now,, there are other modalities of treatment. Your family is more understanding and your symptoms can get better treatment. I don't know if Fibro can be a separate disorder,, but will most probably become less of a diagnosis as your primary condition is being evaluated and treated .

There are many people in these forums with Fibro, Pain, Fatigue and without any lab findings or diagnosis. Please understand that it is only fair that your symptoms shouldn't be compared to those looking for help and sharing in a pure fibro forum. It could be dangerous if you name the drugs that have helped you, again,,, apples to apples.

It becomes too confusing to an average forum subscriber. I find it interesting that you began as fibro and after searching, have found the truth about your condition. I hope that your medication helps you and would love to know how you are doing with the 'Fibro' symptoms. It is not uncommon to go for years without a definitive diagnosis. I wish good health and hope that you feel better. Please keep in touch.

Dr Bob

I was diagnosed with fibro 12 years ago. I had a great doctor who was very understanding because her mother had fibro. I never experienced a negative attitude until this year. My doctor left the area and I had to see a new one. I am not a complainer or a drug seeker. I started having back pain that radiated down my leg so I went to the same clinic I have gone to for the last 12 years. I saw the new doctor there and even though she had my records right in front of her, she told me that people with fibromyalgia are always looking for a way to get their narcotics. I told her that I have never taken narcotics for my fibromyalgia and if she could bother herself to look at my records she would see that. I walked out and never went back.

I am now going to a pain management group for the very reason that I could not get medication
from my MD. i was given norco - 350 mg. or whatever 30 count, EGAD that equals 1 pill a day!
And he had been my MD for like 15 years. Every visit to the pain management clinic you have to
give a urine sample (I understand this, but still feel humiliated by it); you have to bring all of
your medication and you also have to sign an agreement that you will only get pain med from that
source. It is not an easy gig, so I am on pain meds which are not narcotic and a pain patch which is narcotic.
Hey, I do not want to use narcotics but this is some relief after over 20 years of Fibro.
good luck all

Resmdpa quoted

Hi,

I read your story several times before writing because I didn't want to make a mistake in this reply. When your illness began, you were able to cover your symptoms with pain medication. Over time, this little trick was less effective and your symptoms evolved into an illness that was medically diagnosed. You say that Autoimmune diseases began to show up. Well, is that Fibro? I am just putting myself out there to seek truth. There are many autoimmune diseases ,, Google them. The best known are Lupus and Rheumatoid Arthritis and there are some yet to be discovered. Patients can complain of symptoms similar to Fibro but lab work reveals a positive finding and a diagnosis can be made. This is not Fibro,,, it is the illness itself which often can be treated.

In Fibro, we are not seeing the typical inflammation of tissue or the worsening of some aspects. There is no lab work to follow to control the symptoms. We do not show antibodies to our own body. Your diagnosis is made,,, ours is not.

You write well and seem to be a bright person,,,please stay with our forum without confusing the rest of the group. Your illness started like Fibro but it wasn't and a diagnosis has been made. This is good information for our group and I thank you for your honesty.

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I wasn't sure if your "Hi....." message was for me, but it seemed like it. If not, then I've misread your message. If so, then thank you for the complement of being able to write well and seeming to be bright. I don't have a college education but I did work my way to up from clerical to management, which I have been doing for the past 20+ years of my 29 year career. I've managed a team of contract specialists, a team of 13 engineering, environmental and planning staff, and have been the agency's operating and capital budget manager. Sorry, but I was surprised, your post read somewhat condescendingly. I've been posting to the forum for about 8 months so I didn't go into all of my health issues.

For your clarification though I guess I will. Through process of elimination over a period of 8-10 years, yes I have been diagnosed as having fibromyalgia and Chronic Fatigue Syndrome. It's on my health records plain as black ink on white paper. I also have various other health conditions and because of that the water does get muddy. I was diagnosed with collagenous (sp)colitis (an autoimmune disease) in 2012, which in turn has flared up IBS. I have been unable to get control of the IBS after I get the colitis under control. I just met with my gastro physician today to figure out a plan of action. I was diagnosed with IBS in my early 20's, but hadn't really had problems with it until after the colitis. Separately, I now have almost daily headaches with migraine spikes, which my neurologist indicated is probably due to the fact that I'm constantly in pain. It's rare, but apparently that can cause a person to develop migraines. I have chronic insomnia, neck pain, back and hip spasms, arthritis through my spine, hands and feet, numbness in my feet, and had a mild heart attack last October at the age of 49. I now have anxiety and depression since the heart attack.

Lastly, having a diagnosis, does not necessarily mean there is a cure. Given all the issues I listed above, I am no longer able to work. I started having to work less than full-time in December and was put on medical leave in July. When I'm in a flare or the fatigue overtakes me, I spend days in bed, and I can't even get up to eat. Another side affect....little to no appetite.

I was responding to the prior post about the use of narcotics for fibro. You will find that people on the forum do talk about the medications, both good and bad reactions. Since I have fibro and constant pain in my neck, back, hips and feet, I have found hydrocodone to be helpful for me. If I hurt all over and am having a flare, it helps me not hurt so much so I'm more inclined to move. Unfortunately, I can no longer say always, because it doesn't always help me to move anymore. Chronic fatigue has become more prevalent over the past couple of years.

I think what you'll find on this forum is that many of the people have multiple issues and some of the issues we think are unique, through some of the folk's research, we're finding are possibly/likely symptoms of fibro. Read some of the posts from Trayne91. She's also a far better writer than I...... ;-)

jrk1288 said:

I totally believe that...people will do anything to get their hands on painkillers, especially controlled substances, when they have no medical need for it. I work in the veterinary industry and we even have people asking for hydrocodone, oxycontin, etc, when a lot of those drugs aren't really used for animals. Not a common occurrence, but it does happen. Human doctors probably see this almost every day...sucks for the people who have a legitimate need for it but can't get it.

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It is true. There are people with the desire to find these opportunities, but they can't, they don't have the chance or luck. In reality this does not surprise me, because this world is like. Our job is to ask "God" is the best. Happy day.

I can certainly see how this might be a problem for doctors, however they are highly trained, and I would like to think that they would be able to see who genuinely had a condition and who was just doing it for the medication - looking at their history might be of help for this. The unfortunate thing is that there is such a small amount of actual information about the condition set in stone that it would seem that nobody truly understands it, meaning that diagnosis can be a little hit and miss, and many genuine sufferers will be under fire because of it. If you ever feel that you're not being taken seriously, always ask whether you can see another doctor, as they might be able to help you to a much greater degree.

I didn't realize how long i'd been going to the dr. trying to find a cause for my pain and fatigue until i sat and really looked at my medical record the other day. For four years i have actively been going to the doctor for various different ailments. I've had a number of blood tests and x-rays trying to determine the source of my pain. Up to this point, the pain is more of a nagging annoyance, with some days being far worse than others. I know it's not right for what i've been doing physically. and the fatigue has definitely been unwarranted.

Hi Dr Bob, I agree with Trellum - it is excellent to have someone such as yourself on this forum. Your advice and information is so valuable to us and also particularly because you are a patient yourself. I understand everything you mention regarding meds and how it works with the doctors. I have been through that all too! I'm an Australian member and we also have the same systems of authority for meds etc. My doctor has me on a patient agreement which I think is an excellent idea. It means I go to the same pharmacy all the time, I only see my doctor and no one else and I don't go outside the timing of the meds (meaning I don't come early etc). I have been on several meds for some time and I think it actually takes a little bit of time to really get the best benefit from them. It also takes the right combination of medications to make things improve, not just taking the one. I think its important to put your own efforts in to help this. I'm a strong advocate of vitamins and take seveal to balance out my levels. Having this under control allows your body a better chance to fight the symptoms. Thank you Dr Bob for being on here, it actually is really good knowing you are in case any of us have a very specific question. We can also get your opinion or advice from a patients view too.

Thanks again and I hope you continue to do well