Sorry, I know this is long but I had to get it all out somewhere. I really have no where else to turn! :( I pray that some of you can please give me some insight and help me find out what I can do next because I'm about
drained of giving a $&!+ at all anymore.
I was dx with Fibromyalgia in Nov 2007 by a brief visit with a non-rheumatologist doctor who claimed to "specialize" in rheumatology. The dx was confirmed later the following month by a true rheumatologist who didn't even bother to check all of the 18 points and really just looked at my symptoms list that I had provided. That Rheum gave me some pills to pop, which seemed to worsen the symptoms and subsequently sent me to P/T. My PCP has treated me for the most part and when my symptoms began to worsen over the last 7 months and then show changes in January (2011), my bloodwork was repeated. Tests showed the same positive ANA (which I've pretty much ignored), but also very low (2.7) white blood count and "High/Elevated" results in monocyte percent, RDW CV, Erythrocyte Sed Rate, and C Reactive Protein tests. Today I saw a new rheumatologist, referred by my PCP, to go over all this recent blood work that was concerning my physicians and her partners (and in turn, me) especially in light of the worsening conditions I've been exhibiting for over a month now.
Firstly, let me just say that I really feel like I've accepted the Fibromyalgia Dx (hate it, but accept it) and understand that there is no cure and I'm going to be burdened with a rough road ahead of me given my every day stressors and the fact that I have five children to care for on my own - two of which are not even old enough for school yet! I have personally opted to keep my treatment as natural and holistic as I can because 1) I have shown throughout the years to be of the 5th% of persons who regularly, negatively react to drugs/antibiotics and I just don't want to bother taking any more chances on drugs for a condition that is largely misunderstood by the medical community just so that pharmaceutical companies can rake in the dough to pay for their beach homes! And 2) I'm nursing a baby and my ability to bond with her that way, and give her the best start (when she may one day be trudging down a similar road as mine one day in terms of health) as I possibly can is worth every tear, wasted hours on the couch when I'd rather be doing something productive, therapy session that really doesn't help, and anguished moments where I have to say, "I can't afford it" to my kids because I don't have a solid income to give them the extras in life.
I do also understand that Fibro has symptoms that mimic other symptoms and vice versa. I also know it to be fact that R/A and Lupus run heavily in BOTH maternal and paternal sides of my family, and if you go up one more generation - nearly every one of my great aunts/uncles and grandparents have SOME form of arthritis (including my mother). And because it runs in my family and my initial diagnosis of Fibromyalgia seemed to be more of a way to shut me up rather than to actually review my extensive health history and run diagnostics, I feel it is quite possible that I may have something more going on than just Fibro alone.
I thought that this might be the day that I find out what all my OTHER symptoms are coming from but sadly, the rheumatologist was a complete tool. A polite one, but a tool nonetheless. When I first arrived, I gave the nurse a 6 page packet of recent symptoms, meds I am on, doctors I've seen, known medical issues I've had in the past or have a diagnosis of, and Known Family Medical issues. I also brought with me my symptom notes form that I created to keep track of daily symptoms, pain, meds taken, activity level, etc. These include color coded front & back views of the human body that I fill out and mark my pain
locations. I ALSO brought with me a ziploc baggie of hair that I collected from brushing before/after showering and what was shed during my shower (and strung onto the wall for safe keeping) so that he could see how much hair loss I've been suffering from over the course of 3 days. Note: this did NOT include the ample amounts of hair shed throughout the course of a day on my clothing, in the car, onto food, clogging my drain, breaking my vacuum, etc. Finally, I brought in several photos of myself after having been bitten by a mosquito and the severe swelling it caused (as well as numbness & tingling, breathing problems, etc) over my entire face and sinus cavity.
When he came in, he briefly looked at the packet and asked what all the "stuff" was for. I explained that I wanted him to have a clear image of what I've been struggling with and what my concerns were. He tossed the packet onto the counter and dismissed it all - didn't bother to look at it at all.
The exam was brief. I was fully clothed (sweatshirt, jeans & shoes) the entire time. He looked in my mouth and under my tongue. He listened to my heart. Had me breath in and out twice and then pressed THREE of my fibro tender points to confirm I had pain (which of course i did). That was it for the exam.
Of his first three questions he asked me if I had any swelling, any heart issues and... do I see a psychiatrist. Then he proceeded to ask me which medications I've been on. Had he looked at the notes i brought, he'd have had those answers. After only 10 minutes he concluded that I had Fibromyalgia and without my taking medications, there was nothing he could do. He said that "people like [me] come in not believing they have Fibromyalgia all the time" and that "they just need to accept it and realize there is no cure". I immediately asked about
my bloodwork (cuz DUH! I know I have Fibromyalgia, but that dx doesn't explain the abnormal blood results!). His answer, that 10% of healthy people have a Positive ANA (I already know this to be true and never once cared about
the ANA.) That the normal range listed on my tests were "bogus" and even though I do seem to have some abnormal labwork, that "it could be a number of things causing it" and he didn't feel that any of them were Rheumatological. He said that his opinion was superior than that of my PCP and her partners because he "sees Lupus every day" (that was the disease he chose to use as an example, but was in fact in question by my physicians) and other diseases and although I have curious test results, I "don't meet the criteria for "classic Lupus" or any other rheumatology-type disease". I asked him what was causing the rest of my symptoms then? He shrugged and said, "I don't know. You've clearly got a lot of things going on." he then went back to my symptoms list and pretended to read over it for about
3 seconds. He picked out the part where I listed "Bowel Symptoms" and piped out that "Well, you have irritable bowel syndrome. That's a part of Fibromyalgia." I argued that my notes didn't say that I had IBS and that my doctor and I just had a conversation last week that my problem is NOT IBS and that it is muscle weakness (which also concerns her because I am having difficulties evacuating). He refused to discuss it further. Finally, as he was about
to walk out the door, I asked him about
my hair loss. His annoyed response, "If you're really losing that much hair in the course of a few days, then within the next six to seven months you'll be going bald. You can come back then." Otherwise, I was told that there wasn't anything he can do until I decide to give in to taking drugs for my symptoms except maybe enroll in a TaiChi or Yoga class and work my way up to 20 min/day of exercise. Aside from that, go back to my PCP and ...well, basically, leave him alone and stop wasting his time.
I got home feeling angry, hurt and defeated. I decided to call the labratory that did my blood tests. I asked them about
what "normal range" actually meant for the ESedRate & CReactive Protein tests and if there were other factors that could be factored in that may alter the "normal range" because, afterall - the Rheummy refused to take it seriously because it was "a bogus test because the range didn't reflect my age or gender". According to the laboratory manager AND his technician, the normal range is the SAME range that any laboratory across the country would have applied my results to and that no, "gender and age" do not matter for those tests. So... why did the rheumatologist lie to me? Why would he completely ignore a test (particularly the CRP) that could show a VERY serious condition when it is so elevated? Who do I go to now when my own PCP sent me to this rheumatologist for answers!?
I worked religiously on my note taking for years and then made sure that it was accurate and updated last night so that I'd be able to present the new Rheummy with correct information. What a waste of time! I'm in severe pain, I'm chronically ill, my hair is falling out, my anxiety is through the roof, my depression has me near suicidal (which I don't like to admit to anyone for fear that someone will take my kids from me - they are the ONLY reason I bother to get up in the morning at all these days), I'm exhausted....
WTH am I supposed to do now? I need a clean-slate second opinion but I can't afford to go outside of this clinic as my insurance won't pay for it. What I'd like to do is take copies of my bloodwork, a brief list of symptoms & family/personal medical history (skipping any diagnoses that I've acquired so far) and present it to a new Rheummy, outside of that clinic, with the information and give NO MORE DETAILS than that. No telling him I have Fibro or PTSD/Depression. No commentary about
what I, or my PCP, suspects I may or may not have. No medical history or former Rheummy notes to interfere with a pure diagnostic evaluation & exam.
Granted, based on so many other complaints - I fear that even if I could afford an outside opinion - I may be paying out of pocket for having to re-live the nightmare experiences I've already suffered through.
SO, How DO you find a Rheummy who gives a darn? Who will take more than 10-15 minutes in an exam room with you without really doing much to EARN the money he's going to be receiving either through the patient or their insurance.
Anyone know of a GOOD Rheummy? Do they even exist???
Mother of five, beautiful children (Ages 14, 12, 10, 3 & 13mo).
Surviving: Asthma, Fibromyalgia, Chronic Fatigue Syndrome, Scoliosis, GERD, Anxiety/PTSD, Depression, RLS, Sciatica, Lupus(?)