Tuesday, September 28, 2010

Let's Go Shopping!

Trying to manage Fibromyalgia without a doctor that is compassionate, on your side and willing to work with you is impossible. Simply impossible. I have seen more than my fair share of medical professionals that were doubters, unkind and knew far less about CFS and Fibromyalgia than I did. I would ask them, challenge their knowledge, and find they had no clue. I would set out to each appointment with a glimmer of hope, a bit of optimism that someone could help me, only to leave in tears, sobbing my way home crestfallen and despondent. Yet the information is out there... Let's be honest here, folks, Fibromyalgia is hot! The number of patients are on the rise, as many as 6 million in the USA alone! It is on the cusp of gaining major recognition as Pfizer advertises the life out of Lyrica. We now have 3 FDA approved drugs to manage symptoms, and while they may not work for everyone, at least it is no longer considered "all in your head" by certain sectors of the medical community. Yet many doctors remain clueless. They will whip out that prescription pad and stick you on whatever non-narcotic drug you can tolerate, whatever drug the rep has left the most samples to distribute, whatever Big Pharma has told them will work, side-effects beware. They will force you to battle them for narcotic pain meds, treating you like a junkie, with no true grasp of how much torture you are really in. They will tell you to eat less and exercise more, with no concept as to how bad you hurt and screwed up your hormones are, what a victim you are to the side-effects of the drugs you are already on. See they don't truly understand the illness and all the multitude of symptoms that go with it. It is not just a pain syndrome! I see the The American College of Rheumatology is proposing a new set of diagnostic criteria for Fibromyalgia that includes common symptoms such as fatigue, sleep disturbances, and cognitive problems, as well as pain. As awareness campaigns are springing up left and right we are gaining the confidence to talk about it, no longer ashamed the doctor could not come up with something more "real" to diagnose us with. So there is no excuse for the way we are still treated and dismissed by certain archaic medical professionals.

It is their loss, actually. As the numbers of Fibromyalgia patients increase they are missing out on a fabulous money making opportunity by staying clueless about it, sticking their heads in the sand of the dark ages of that horrible "blame the patient" mentality most of us have had to endure. I say we take some pride in ourselves and our diagnosis and stop supporting these doctors that treat us so poorly! It is critical to have the right combination of meds to manage this illness, keep the pain at bay, insure sleep at night. And this is NOT the same for everyone. Part of the problem with Fibromyalgia is that it is such an individual illness, custom to each patient. So as an important step of The Fibromyalgia Crusade, my awareness campaign that I am launching soon, lets go shopping! Let's change the doctor experience entirely. Let's take control of this crucial aspect of our management and take pride in ourselves and the true reality of what we are dealing with. Lets stop moaning and complaining and expecting the same unsympathetic doctor to suddenly care and set the tune of the doctor visit so it is under your control. I know this is extremely difficult when you are in so much pain, fog-brained and exhausted, but this is quite possibly the most important step to getting Fibromyalgia under control, so put everything you have into it! If you are without insurance or on Medicade you will have to fight all that much harder for yourself.

It should go something like this:

 1. Seek out referrals, research, educate yourself. Know the latest treatments and drugs. Here are some links that may help:
When you call to make the appointment let the receptionist know you are looking for a doctor to work with you in managing Fibromyalgia and verify they have other Fibromyalgia patients successfully managed.

2. DRESS FOR SUCCESS! No, don't wear a business suite but DO NOT walk into that appointment a disheveled mess. Wear some attractive clothing, brush your hair and pinch your cheeks. Put a little lip gloss on. Appear like a sane, rational and normal person that is ill. Yes, the "you don't look sick" aspect is frustrating but you must be taken seriously and not dismissed as a mental case. This is much easier to convey if the doctor is looking at a patient that appears to "have it together".

3. Bring all your previous test results. Blood tests, imaging, etc. Your current and previous doctors should give those to you no problem. But DO NOT transfer your entire medical records from an "unsuccessful" doctor to a new one, just bring in any previous test results.  

4. Start an accurate and easy to glance at daily symptom chart to bring to your appointment. Simply list all your symptoms and assign them a number (1-10) for each day. Keep it simple, neat and easy to read. It is hard with the Fibro-fog to come across as a sane, coherent individual so documentation is necessary. Bring a list of your current medications and ones you have tried in the past. Bring everything you possibly can so if you find yourself in the Fibro-fog of your life you can still have a successful appointment. The  more organized and pro-active you appear the more seriously you will be taken.

5. Clearly state your symptoms and hardship without a desperate or emotional charge. Explain what you are doing that is working and what your greatest obstacles are. Challenge the doctor to work with you so that your Fibromyalgia is managed and does not rule your life. If after all this you have a bad rapport or feel degraded or condemned, gracefully exit the appointment and never go back. Then start over again with a new doctor.

Look at it like this... if the red dress does not look that great, go back out to the dress department and try on that green one, and if that one is just ho-hum go try on the blue one, keep trying until you find the one that makes you look amazing! That same attitude needs to be applied to your doctor. Take the emotion and desperation out of the anticipation of each doctor appointment and go in with a curious open mind. Wait to see if they impress you. Lower expectations lead to no disappointment! And trust me, you will eventually find a doctor you click with. Hopefully one that will get your pain under control and help you sleep so you can start the process of rebuilding your life. Take responsibility for your health and stop lining the pockets of these apathetic doctors with your hard-fought money! It is absolutely time we were taken seriously, but until we demand it, it will never happen. Medical science will figure out the mess we are in one day... Until that day comes we are the suffrage movement, the civil rights movement, a revolution...The Fibromyalgia Crusade!

Thanks for joining,
Leah


 

7 comments:

  1. Leah, Thank you for being a crusader for people who are suffering with Fibro. This article sounds like my story......I did take things under my control and found a caring doctor who changed my life but not until I was completely degraded and emotionally depleted by the local medical community. I agree with you and thank you for your insites but there are a couple things I would add: you need an advocate to go with you to your appointment and to help you with your paperwork. By the time we need to take matters into our own hands, we are so unable to do so because of the pain, fatigue, fog, etc. I remember the days. If we could have an advocate who would be willing to work with people to accomplish this, it would be very helpful.

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  2. So true. Someone to take notes, ask the questions you forget to ask, hold the Dr. accountable to more than just a sick and confused patient!

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  3. ENDOMETRIOSIS AND FIBROMYALGIA

    Your advice is so sane and rational. It is important in finding a doctor that you approach it in this way. Trust your own instincts, and be organized and "scientific" in how you present yourself. When my ob-gyn did not believe I had endometriosis it was so upsetting. I think she discounted my pelvic pain as IBS, because she saw on the medical records I had filled out that I had fibromyalgia, depression and IBS, and decided then and there that I was not credible. In other words, she made a judgment about me that was not based on the medical facts, but some irrational prejudice. Later, I would learn that it was also based on ignorance. Don't ever assume that a doctor knows more than you do. The fact that you have fibromyalgia matters even for doctors you go to with completely different health issues.

    I kept a calendar and noted when and how severe the pain was. I finally went in one day and saw this woman's colleague, and basically put my foot down, making her understand that this was so severe I could not function. They began to treat me with monthly hormone-supressing injections, which made me sick with exhaustion and mental confusion. When that didn't help I had to INSIST on exploratory surgery because it was the only way to diagnose endometriosis. My family doctor, who used to be an ob-gyn, believed me. He had been treating my general health and fibromyalgia for years, and I had his respect. We collaborated on managing my fibromyalgia symptons. A colleague of his had endometriosis so severe she had to have part of her bowel removed. So, needless to say, he took me seriously!

    On the day before the surgery, I went to my final appointment with my boyfriend. As we sat in her office, she continued to insist that although she would do the surgery, she still did not believe I had endometriosis! My boyfriend had to take me to that visit in a WHEELCHAIR because the pain was so severe I could not walk. As soon as we left I broke down into complete hysterics. Was she actually trying to torment me, as if my constant pain and disability weren't enough? This was a terrible example of following the Hippocratic oath. Not only was there a lack of empathy here, but a lack of humanity! I would not treat a DOG the was I was "treated" by this physician.

    I will never forget the moment after the surgery when I began to wake up, and my boyfriend was right there, waiting to tell me that a large blood-filled cyst was found on my ovary, and the entire ovary had been removed. NEVER had I felt so vindicated in my life. I KNOW what is happening in my body - when the symptoms became severe I ACTUALLY DIAGNOSED IT MYSELF from information I found on the internet.

    ENDOMETRIOSIS & FIBROMYALGIA

    Cont'd next post...

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  4. ENDOMETRIOSIS & FIBROMYALGIA, Post #2

    This woman was incompetent. When I went in for my first post-surgery visit, she gave me a full-color 8" X 10" glossy of the offending ovary with the cyst. She made no reference or apology about her previous attitude and behavior. And yet, I STILL continued to have severe pain! The drugs they give you to suppress the hormones responsible for your monthly cycles made me feel like I was having a full-body relapse into active fibromyalgia. Up to this time I was still able to work full-time. I was 41 years old and had already had fibromyalgia for ten years.

    A co-worker urged me to get a second opinion - to go see an endocrinologist at George Washington University Hospital. The endocrinologists treat infertility, and endometriosis is a leading cause of infertility. I dragged myself there with a folder of medical records and my surgical trophy, that color photograph. I sat at a table in a small meeting room, and told my tale of woe to one of the doctors. I told her how I had been treated, and although I was happy to have been justified in my own intuition, I was still very ill. Then I pulled out the photo (don't we just wish we could pull out our fibromyalgia experience in a color photo - hard, irrefutable evidence!). She took a look at it, then excused herself, left the room and came back with another doctor. They both looked at the photo, then at me, and said "You have endometrial lesions all over your peritoneum."

    They then put the picture on the table and pointed it out to me. They could see this at first glance! There is a sack around your abdominal and reproductive organs, called the peritoneum. They showed me, that in the the background of the picture, behind my ovary, there were patches of discolored tissue. This is why you are still having pain, they told me. I ended up having two more surgeries and finally a hysterectomy to stop the cycles. My wonderful doctor was at the cutting-edge of surgical treatment of this condition, and he was determined to resolve my pelvic pain. He was compassionate, patient, and gentle, the polar opposite of my previous physician. I had one of the worst cases he had ever seen, and he took out as much tissue as he would have if I had had cancer.

    Cont'd Part 3...

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  5. ENDOMETRIOSIS & FIBROMYALGIA, Post #3

    Endometriosis is difficult to remove completely because it is not always visible, and even one cell can have it. He did the best he could, until the only option left was the hysterectomy. I actually began feeling better after I was at home recuperating. Then, about a month after the surgery, when my body began to feel the affects of the lost hormones produced by my now-removed ovaries, my fibromyalgia came out of remission with a vengeance. I had always felt worse around my period, when the monthly hormonal changes aggravated my fibromyalgia symptoms. I had always known in the back of my mind that a total hysterectomy could make me feel this bad on a permanent basis, and unfortunately, that's exactly what happened. With crushing fatigue, constant pain and non-stop migraines, I was never able to return to work. That was ten years ago, the beginning of being completely at the mercy of this horrible disease. Still, it was preferable to the unbearable pain of the endometriosis. My pelvic pain and abdominal muscle spasms took years to heal, but they finally did. After the hysterectomy, I basically spent the next two years in bed.

    Hormonal changes definitely have a lot to do with fibromyalgia. This is why I believe that it more commonly affects women, and tends to either onset or worsen following menopause. I tried some hormonal replacement, first testosterone, which made me fat, and then estrogen, which brought back the endometriosis, proving that it was impossible to remove it all even after the hysterectomy. What I did not understand before is that endometriosis is considered to be an auto-immune disorder, like lupus or rheumatoid arthritis. Both endometriosis and fibromyalgia are mysterious illnesses, with no known cause or cure. Recent research has shown that 30% of women with endometriosis develop fibromyalgia. I mentioned this to my rheumatologist, who confirmed that he has seen this frequently in his practice. Fibromyalgia appears to have a close connection with immune disorders in general. In my constant search on web sites and message boards for new information on causes and treatments, I have often seen that people with fibromyalgia also have auto-immune disorders, especially rheumatoid arthritis, lupus, and MS. I think there is something about an immune disorder that sets up a condition or weakness in the system that often prefaces the onset of fibromyalgia. It seems to happen far too often to be coincidence.

    I am no longer troubled with the endometriosis, but am now at the mercy of the fibromyalgia. I have no choice but to surrender my obstinate will to living with it, my shadow and my constant companion, the uninvited dinner guest who never leaves. As FMS sufferers know all too well, it can be a constant battle to maintain your sanity when you are being tortured 24/7 with chronic pain. But whether or not you scream, rant, or moan like Job, it doesn't change the facts. If there was a more blatant example of having absolutely no control over you life, this is it! But you do have control over how you respond, and how you manage your day-to-day life. Even with this short and difficult life, you can experience beauty, joy, and love. It's your choice how you want to spend this precious time. Which would you rather do? It's a divine comedy, and if you don't laugh you will surely cry. Carpe Diem! Or at least gently hug it.

    END OF POST

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  6. ENDOMETRIOSIS AND FIBROMYALGIA, Part III

    Endometriosis is difficult to remove completely because it is not always visible, and even one cell can have it. He did the best he could, until the only option left was the hysterectomy. I actually began feeling better after I was at home recuperating. Then, about a month after the surgery, when my body began to feel the affects of the lost hormones produced by my now-removed ovaries, my fibromyalgia came out of remission with a vengeance. I had always felt worse around my period, when the monthly hormonal changes aggravated my fibromyalgia symptoms. I had always known in the back of my mind that a total hysterectomy could make me feel this bad on a permanent basis, and unfortunately, that's exactly what happened. With crushing fatigue, constant pain and non-stop migraines, I was never able to return to work. That was ten years ago, the beginning of being completely at the mercy of this horrible disease. Still, it was preferable to the unbearable pain of the endometriosis. My pelvic pain and abdominal muscle spasms took years to heal, but they finally did. After the hysterectomy, I basically spent the next two years in bed.

    Hormonal changes definitely have a lot to do with fibromyalgia. This is why I believe that it more commonly affects women, and tends to either onset or worsen following menopause. I tried some hormonal replacement, first testosterone, which made me fat, and then estrogen, which brought back the endometriosis, proving that it was impossible to remove it all even after the hysterectomy. What I did not understand before is that endometriosis is considered to be an auto-immune disorder, like lupus or rheumatoid arthritis. Both endometriosis and fibromyalgia are mysterious illnesses, with no known cause or cure. Recent research has shown that 30% of women with endometriosis develop fibromyalgia. I mentioned this to my rheumatologist, who confirmed that he has seen this frequently in his practice. Fibromyalgia appears to have a close connection with immune disorders in general. In my constant search on web sites and message boards for new information on causes and treatments, I have often seen that people with fibromyalgia also have auto-immune disorders, especially rheumatoid arthritis, lupus, and MS. I think there is something about an immune disorder that sets up a condition or weakness in the system that often prefaces the onset of fibromyalgia. It seems to happen far too often to be coincidence.

    I am no longer troubled with the endometriosis, but am now at the mercy of the fibromyalgia. I have no choice but to surrender my obstinate will to living with it, my shadow and my constant companion, the uninvited dinner guest who never leaves. As FMS sufferers know all too well, it can be a constant battle to maintain your sanity when you are being tortured 24/7 with chronic pain. But whether or not you scream, rant, or moan like Job, it doesn't change the facts. If there was a more blatant example of having absolutely no control over you life, this is it! But you do have control over how you respond, and how you manage your day-to-day life. Even with this short and difficult life, you can experience beauty, joy, and love. It's your choice how you want to spend this precious time. Which would you rather do? It's a divine comedy, and if you don't laugh you will surely cry. Carpe Diem! Or at least gently hug it.

    end of 3 part post

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  7. THANK YOU SO MUCH FOR THIS ARTICLE IT WAS AMAZING SORRY THAT YOU WENT THROUGH SO MUCH. I AM GOING TO START MY OWN RESEARCH BECAUSE I HAVE A PITUATORY GLAND TUMOR I WAS TOLD 30 YRS AGO WHEN I STOP MENSTRAL CYCLE. MY PROLACTIN LEVEL WAS AT 125 SUFFERING FROM MAJOR HEADACHES. THEY DECIDED TO DO AN MRI. THROUGH OUT THE YEARS IT HAS BEEN MONITORED. I AM BEGINING TO WONDER IF ANY OF THIS HAS TO DO WITH MY FIBROMYALGIA

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