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| new to board, not to fibro - long
Hello All,
I just came across this board today while doing some research. I usually don't post to message boards since I never find the time to get back to them, but I really feel like I need a support system now, and I can see that this is a very caring place to be....
a little about myself...I'm 34 years old, have three wonderful children and a hubby of 16 years. I am a professional and work full-time, though lately I have been taking a lot of personal time to rest. I love to read, do beadwork, and hang out with hubby, the kids, the cats and the new puppy! I'm very lucky in the sense that I have a wonderful family and great friends who are totally supportive of me, even if they can't fully understand what I go though day to day and I love them for that...
about my medical history: dx'd w/CFS in 91 after MVA. With a little one, it was pretty rough, but started feeling better within 6 mos. Shortly after, had a 2nd trimester miscarriage - dx'd w/Antiphospholipid syndrome (blood clotting disorder). Several yrs passed of trying to get preg, found out I had "secondary infertility", due to polycystic ovary syndrome (PCOS), gave up trying, and got preg 1yr later!...had 2nd child uneventfully. FMS symptoms started shortly after her birth but very mild.
fast forward four years ('97). Family vacation. within two days, I could barely walk from the pain in my feet, ankles & legs. broke out in malar rash & rash in any area that was exposed to sun. Paralyzing headaches. By end of week, could barely move.
Within a week of getting home, found out I was preg yet again! (though I was on b/c to control outrageous bleeding from PCOS). Within days of finding out I was preg I was so "sick" w/"fibro" symptoms that I could not get out of bed. I literally spent weeks 10-32 on strict bedrest in pain, in a sleep/wake "altered state of consciousness" (for lack of a better description) and bled often from "mini-abruptions" under the placenta. Developed undetected gestational diabetes. Preterm labor at 32 weeks, delivered.
Fibro came on full force and unrelenting after my son's delivery (6 years ago). Severe exhaustion, severe pain, dizziness, weakness, IBS symptoms, horrible cognitive issues, UTI's, can't sleep (when I can I spring up as soon as I start dreaming), trembling hands, jerking limbs, Basilar migraines, buzzing, tingling in hands and feet & they go numb. photosensitivity, auto-immune issues, ringing in ears, flashing in eyes, you name it, I got it. my whole system is going totally haywire! the only thing that I haven't had (yet) is depression, thank goodness.
problem: Where I live, there are limited specialists, and even fewer covered by my insurance. I'm on my 4th Rheumatologist (1 was an arrogant jerk, 1 moved to another state, 1 died). My current rheumy acts like it's a pain to treat me because I "don't respond" to "normal" treatments for Fibromyalgia (antidepressants). I tried asking if maybe I didn't have "normal Fibromyalgia" since I had so many other issues going on and she practically kicked me out of her office. since then she has been cold and distant. last visit I left in tears after she flat out refused to look at my ankle which had been (and still is) bothering me and she changed my vists from every 3 to every 6 months.
My other problem: now, for some reason, all of my symptoms seem to be flaring up even worse then before, I'm so tired I can only work about 4 hours per day, I'm eating up my personal time and getting nowhere as far as treatment. My boss is getting annoyed, and my family just doesn't understand why I am sleeping almost constantly when I am home (nor should they have to because I shouldn't be this sick).
went to primary care doc today to tell her about the rheumy, and that I thought the CFS might be returning. Also wanted to know if the PCOS could be causing some of the exaggerated symptoms I've been having (hormone fluctuations make my fibro flare - though rheumy denies a hormone connection). And what did she do? She REFERRED me out to more doctors! An Endocrinologist (for PCOS), and Infectious disease doctor (for CFS or possible lymes) and a new Rheumatologist.
I KNOW that this is what she is SUPPOSED to do, send me to a "specialist" to deal with these issues, but I just don't feel like I can go through my medical history again with yet another doctor, take the time to establish a raport, have them realize that I am not "making this stuff up", and then finally decide to get serious about treating me.
First...THANK YOU for letting me VENT...
now...maybe i'm going about this the wrong way?...My primary care doc is a Family Medicine doctor. Should I be seeing an Internist? would they be more apt to treat the "whole person" and not make referrals out to specialists so quickly? any suggestions? words of wisdom?
maybe I come on too strong or too "educated" with the doctors and intimidate them (suggested by one of my dear friends)? how do I not "just be me" when I go in? If I KNOW that my hormones make the "fibro" worse, of course I'll argue that point until I'm blue in the face!
anyone have any idea if this really isn't fibro?....or if it really is only (as in a singular diagnosis, not *only* as dismissive) fibro, even though blood tests come back funky all the time? (ana mildly positive, rheumatoid factor +, lupus anticoagulant +, anticardiolipins +, sed rate elevated, no hormonal studies done - PCOS based on US and other symptoms/observations, thyroid function tests done 7 years ago were fine, no blood sugar tests since pregnancy, guess Endo will do).
Thank you for listening and for any advice that you can give. I really appreciate it!
Take care...
~Amethyst
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