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    Old 01-19-2005, 06:49 PM   #1
    AmethystInLight's Avatar
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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...

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    Old 01-20-2005, 08:45 AM   #2
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    Re: new to board, not to fibro - long

    Hi there,

    Everyone's FM symptoms are different, and a lot of people have some other health problems at the same time, perhaps that is what's going on with you?

    Your family doctor is NOT qualified in any sort of specialty. Be glad that you are getting the referrals. I know how annoying it is to go through doc after doc but it's kind of like finding the right combo of medications -- you have to go through them all, like trial and error. A rheumatologist is who you should be seeing for fibro but if you still don't get anywhere, perhaps ask that rheumy where you should go next (or keep going back to your family doctor for more referrals).

    Best of Luck

    Old 01-20-2005, 09:03 AM   #3
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    Re: new to board, not to fibro - long

    I would not give a definite positive to fibro with some of the + blood tests you have had. Maybe you want to fins a specialist you like and trust and have another full panel done. I dont like that you had +lupus, sed rate elevated, etc.

    Fibro is a DX of exclusion and if there are any "what-ifs" in the blood work, they all need to be thoroughly explored and eliminated before a DX of fibro.

    Good luck

    Old 01-20-2005, 02:45 PM   #4
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    Re: new to board, not to fibro - long

    hi there, all my symptoms started after childbirth. im waiting mri. i have migraines,dizzyness,tingling,shooting pains,etc, love aprilx

    Old 01-20-2005, 03:37 PM   #5
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    Re: new to board, not to fibro - long

    Hi Newbie...
    Bless your heart....I've been there. I have a medical history documented an inch thick. As I look back, now, going on 15 years, Doctor visits have been my worst experiences, period. Just about the time I feel 'bonded' the relationship goes bad and I get referred. Unfortunately they write the perscriptions, do the tests, etc.

    I've found that I am my best Doctor..this is going to raise some eyebrows, I know. I continue to keep detail accounts of all visits, test results, dates of perscriptions and rate Drs. 'good or bad'! I take this typed journal every time I go for an appt. (I hate talking about my's bad enough to feel it rather than stirring up the mud.) Sometimes I send it ahead of me so they don't have to ask so many questions!! (They send their applications to us, right??) I also go on ***** and research the issue..then print it out as evidence that I'm not crazy and that I know what I'm talking about.
    Finally, I keep medical charts weekly. Every medication whether perscrip. or over the counter and comments so that I can present that too. (Don't you hate it when the nurse asks what you're on? As if you can remember all of them, let alone the mgs and how often.)

    I have found that after reading all of this information they end up being pretty honest with me...."Yes, I can help or no...there's nothing new." If we're paying them $200-$300 a visit (insurance helps) I demand competence.
    I usually find out that I know as much or more about Fibro. than they do!!
    Research and boards help.

    Give yourself a pat on the back for all of your endurance. You've learned alot about many things. Pain and suffering have a way of teaching us virtures. Someday, someone will need your shoulder and you'll be a great help. People with 'conditions' have a way of influencing many around them in a good way. I bet you're a very special person.

    Thinking of you,

    Old 01-20-2005, 05:30 PM   #6
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    Re: new to board, not to fibro - long

    Hello All,
    Thank you for your support and your advice. I was so down last night! I guess I just had had it with doctors…I’m sure you all can relate…but today? Well…I’ve had one heck of a day today. My family doc told me that it would take 4-6 months to get in with an Endocrinologist. Last night I did some searching on the internet and happened across a post from a person in my state who said that a particular Endo was “wonderful, listened, asked questions, etc.”, and he was on my insurance plan. I made up my mind that he was the doc I was going to see no matter how long it took to get in. Does anyone believe in fate? I called today at 9:30 am. He had a cancellation. I got an appointment for 2:00 this afternoon! Is that outrageous? So off I went, unprepared, no medical records into the great unknown….

    He turned out to be the nicest doctor I have ever met! Not only that, but in the 1.5 hour consultation, he sat and listened to every symptom I have ever had, and even prodded me for more, and didn’t rush me at all. He was very concerned for my condition. He felt that a lot, but not all of my symptoms WERE related to hormone imbalances (though my rheumy has vehemently denied it for years!). Turns out that in addition to the PCOS, I also have an enlarged thyroid, “reactive-hypoglycemia – risk of diabetes type2”, plus some vitamin/mineral deficiencies. No wonder I’m so tired I can barely function!

    So anyway, to make a long story short, not only did he give me print outs on how to alter my diet so that I could control my insulin issues and hopefully avert developing Type2 Diabetes (if I don’t already have it – blood tests will tell), he changed some of my prescriptions, ordered a zillion labs, typed out a recap of our visit so I would remember (due to my memory issues), and dictated his notes right in front of me. Amazing! I’m still in shock. I’m sure I’ll be in more shock when I start trying to follow his diet! I thought I was already doing pretty good with my “quazi-low-carb-sneak-in-a-candy-bar-when-no-one-was-looking-because-I-did-good-and-choked-down-a-3-egg-omellette-for-breakfast diet!

    KCGage - I do agree that I have to find another rheumy that I like and trust. I have three on my insurance plan, the one I see now and two more…

    Fibrostinks (love the name!) - I do have a diagnosis of “connective tissue disorder – unspecified”, though at one time or another I have had almost every symptom of Lupus. I’m not sure if it is good or bad that the Rheumy doesn’t outright diagnose me with it. I am, however on Plaqunil, which does help a little, so I’m lucky there. I really don’t want to take steroids unless it’s a last resort….

    Aprilx – good luck with your MRI. I had one recently and it showed nothing, though I was sure it would come back with something due to all the cognitive difficulties I was having! I would literally be driving down the street and forget where I was, where I was going, how to get there, etc. Thank goodness for cell phones and a patient husband! Do you know how many times I have called him and said, “where am I supposed to be going?”, or “how do you get to such-and-such?”, he picks on me about it, but good-naturedly! Are you getting treated for your migraines? I didn’t realize that there were some really good options out there until I saw a neurologist. He put me on Topamax and they stopped very quickly. Some people have a hard time with it, but it worked great with me. He said the trick was to start out on a really low dose and work your way up.

    Julie – I would have to agree with you, I think we (all of us fibromites) know more about fibro than a lot of the docs out there! (not to say there aren’t some really good ones too, they’re just darn hard to find!) I think that is why my Rheumy got so upset with me…I’ve taken typed documents into the doctors with me in the past and they seem to get a little intimidated. I try to explain that my memory is shot and if I don’t write it down I won’t remember to bring it up… I also agree with you about demanding competence. I am expected to know the in’s and out’s of my profession, keep up on the journals, know the latest technologies, etc., etc. why not them too? Right? I also do a lot of research to see what I can find--on this my Neuro was happy to see what I brought, but again, the Rheumy just poo-poo’s whatever I mention. I think I just have a bad apple here…but again, just like you said, it’s such a pain to work so hard to get the relationship “bonded” then have it go bad and have to find another doc! I am going to take your suggestion and try to start keeping more meticulous notes on what is going on with me… and thank you for your kind words…

    Thanks again for listening, for you advice, and for the support!

    Hope everyone has a peaceful and pain-free night


    Old 01-21-2005, 06:44 AM   #7
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    Re: new to board, not to fibro - long

    hi amethyst. how did you find mri? how long was yours? was you shocked when it was neg? cheers, april x

    Old 01-20-2008, 09:02 AM   #8
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    Lightbulb Re: new to board, not to fibro - long

    I went to see a Rheumy long time ago,I was not impressed with her she checked me out and all ,Looked at the scars on my wrist (which happened years ago mind you)Told me this was all in my head and I needed to see a phychiatrist.At that moment everything went red and I really, really wanted to punch her in the head,I kept my composer walked out of the office never went back to her.I really have not had good luck with any doctors here where I live ,after 8yrs of no pain meds ,no relief,I got into see a physiatrist<sp>.I think Maine is the only state that believes in treating fibro w/o pain meds,most doctors here are a bunch of misfits anyway. Never have I seen a neurologist or an endo.On top of being hypoglycemic, I dont know wether I am coming or going LOL.I am glad to see others getting the help they deserve and not being brushed aside as some mentally Ill patient:0).There was something you said in connection to thyriodism and hypoglycemia kinda a light bulb went on, I think I need more tests done ,my doc here just does a simple blood test and makes me swallow.Thanks for the lighe bulb!!!!

    Last edited by cats2; 01-20-2008 at 09:15 AM.

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