Thursday, April 21, 2011

Your Doctor Told You What?

I was talking to a close friend on the phone the other day and she causally mentioned she was seeing a new doctor that had abruptly taken her off ALL her hormones for a month so they could test her and see where her natural levels were. She is post-menopausal and has been off them about 2 weeks now and...BIG tired and lethargic, emotional, moody and crying her eyes out. Generally in a fog and really not able to function. Her job sends her all over the country in any given week and it is simply not safe for her to be walking around like this so I naturally HIT THE CEILING! "Are you kidding me?" I shouted. I was so pissed off that I was just hearing about it now. Seeing as I am a bona fide professional patient I was outraged. That is just a plain arrogant and egotistical way to practice medicine. Where did "do no harm" go? So I lectured her about how irresponsible that doctor was in doing this and proceeded to stew about it all day. Then as I was doing the dishes that night I got REALLY mad. How dare this lady do this to her, and a countless number of other patients I am sure? Whatever happened to checking her levels as they are and assessing if they were in the right range with the hormones? How about reviewing her previous medical records that indicated she needed these hormones in the first place to verify her base levels? Oh I am so fired up I am about to write the doctor a letter myself!

Sadly enough Fibromyalgia patients are not the only ones that deal with idiot doctors. As my husband reminded me at some point in this mindless journey of one health whoa after another, You can get all "C"'s and still be a doctor. I had never thought about it quite that way and recognized this as sad but true. It is imperative each person facing any medical situation be as knowledgeable about the symptoms or conditions or treatment as possible. Clearly identify the needs, abilities and necessities involved. Research and educate what options are available. If given a new prescription check the warnings and side-effects. Know what you are getting yourself into. Be prepared. And most certainly if a treatment seems extreme or risky or unsatisfactory remember your right to a second opinion. I remember when I was so sick and undiagnosed. My life was quickly flushing town the tubes. I just wanted a doctor to believe me and help me! I could not work and was not getting better. I was desperate, and my hopes were trampled on so many times I cannot even count. It took me sitting in my doctors office, crying that Percocet was not controlling the pain, was making me nauseous and constipated and inducing terrible mood swings, for me to get it. See she looked at me and said "There is nothing else I can do for you. You need to figure out how to get yourself better". That was my breaking point, where the anger rose up above the pain and anguish and my pride and self worth said Screw you. And that is exactly what I did. Set out to get myself better.

It is such a shame I never found a doctor that could oversee the entire treatment that got me off my sofa and back to living life. It was more of a "take what you can get wherever you can get it" type of protocol. I had a resident in clinic at UCSF that was the first to believe me, not dismiss me as a head case. He oversaw the multitude of tests required to rule out anything else that shared the symptoms of CFS and Fibro. I would do internet research and take lists of medical conditions in that shared some of my symptoms and we would go through them line by line as he ruled out why they could not be the source of my problems. He oversaw my state disability and FMLA. I had an endocrinologist that helped me with medications to manage my pain and sleep and prescribed physical therapy. She is also the one that told me to get myself better. I saw a MD at The Fibro & Fatigue Centers that identified my CFS was caused by a virus. I saw a research doctor at Stanford who was running a clinical drug trial on CFS patients with my sub-set, VICD (scroll down to Resource Links for more info). I saw a sleep specialist. I saw a psychiatrist. I saw a therapist. I saw an acupuncturist. I saw a chiropractor. And at the end of all this medical care I regained enough health that I could resume life. It took years, money, patience, perseverance and a belief that it could happen. For if we do not advocate for ourselves, it never will.

Thanks for joining,


  1. I have been post Menopausal now for 15 years. My doctors many, have said that if you don't have Post Menopausal symptoms to not take hormone therapy. It has caused now cancers and other things in women they would rather not see.
    I have had CFS for nearly 5 years now with body aches and joint pain all the time.. I am wondering now if the CFS is a hormonal deficiency? Crazy, I will check on that. Thanks for posting this, and for being there for your friend! :)

  2. CFS is partly a hormonal deficiency because the stress and lack of sleep cause a dysfunction in the hypothalamic and pituatary axis that controlls most of the major hormones in the body. If someone with CFS/FM doesn't get their hormones into good ranges their sleep and pain don't improve, such complex illnesses

  3. I am getting nowhere i found out i had fibromyaliga about two years i know i just need to find out what works for me i am not on pain meds and i have it really sevrely the only medication they have me on is lyrica i dont know who to turn to or what to do do u have any suggestions and i cant find a support group near me

  4. That was my problem when I got it. I could not find any resources to explain or help me understand what was wrong with me. I run a support page on Facebook called The Fibromyalgia Fun House. Come check it out ;) Also check out The Fibromyalgia Crusade website. There is lots of info there. Good luck!

  5. As someone who works in healthcare (and who has fibromyalgia) I am reminded of the old joke: What do you call someone who graduated at the bottom of his medical school class? Answer: Doctor
    Love the Blog!

  6. I want to thank you for this blog. I've just discovered it but it helps to know others are going through similar cirumstances. I totally agree about having to create the doctor combo to get any sort of relief. I have my primary care doctor, a neurologist, and a psychiatrist so far. I have an appt with a rheumotologist later this week. It's a full time job just to keep up with the appts, insurance issues & researching for treatments! Did I mention I also have 3 & 4 yr old boys + a husband?!