My First Rheumatalogy Visit ?'s

Discussion in 'Fibromyalgia Main Forum' started by Sansofpa, Jun 30, 2012.

  1. Sansofpa

    Sansofpa New Member

    I posted to other topics regarding results of my first Rheuma visit,
    but have serious concerns about something he said regarding FMS.

    This is his "specialty" and that's why I was referred to him, and
    he's an MD for 44 years.

    His exact words, "do you know that Fibromyalgia is only
    sensitivity to pain"? I didn't respond. He prescribed an Rx
    and said it would ease my pain sensitivity issues and I'd
    live happily ever after.

    If what he said is true, how do I make sense of everything
    else that's perquacky with me?

    Yes. I do have pain, lots of it but, I need answers for:

    *A huge, distended lower abdomen that I've never had in my life.
    *Blurry vision; light sensitivity
    *Can't tolerate any noise
    *Frequent headaches, when I've only ever had migraines
    *Fatigue and sleepy by 2 p.m.
    *Low Vitamin D; keeps getting lower
    *Cold/Heat sensitivity
    *Swollen feet, ankles, lower legs
    *Swollen upper gums where my wisdom teeth were removed 40 years ago
    *Tremors/shakes mostly in the morning
    *Feeling of bugs crawling on my legs
    *Pulsations all over my body and pulsating Tinnitus
    *Major weight gain and I eat better food, and less food
    *Buckling knees
    *Very stiff joints in the morning; mostly hands, thumbs and ankles

    I could continue, but I really can't grasp the answer, "coincidence"
    when the only health issue I've had since 2000 is my back.

    How can I wake up every single day and have something else
    wrong with me?

    If what he's saying is true, that FMS is nothing more than pain
    sensitivity, how can I possibly continue telling any doctor that,
    "today I have this or that going on"? No wonder some of us
    are not being taken seriously if that's what some doctor's think.

    Honestly, anyone who knows me, believes me, especially those at
    work because I've had perfect attendance and received awards for
    it, for over 2 decades. New doctors that I must now go to, positively
    must think I'm nuts.

    My Gyno totally believes me. He's been my Gyno since 1979 and
    also knows throughout the years I've had extreme difficulty taking
    pain meds.

    This Rheuma got disturbed with me. He asked when my last mammogram
    was. I didn't respond immediately, because I couldn't remember when it was.
    He snapped and said, "What, is it that long ago that you can't remember?"
    I basically got scolded for not responding to him as soon as he asked the
    question, but I honestly didn't have the date on the tip of my tongue. I gave
    him a look and he moved on to the next question.

    On my next visit on August 7th, I will be asking him about some of
    my other issues. My visit was too long for me to ask about fingernails,
    as I had planned to do.

    I'm just so baffled and frustrated by not knowing why all these health
    issues are happening and if I just might have another condition that
    hasn't been diagnosed . . . if they are not FMS related.

    Thanks for being in my cyperspace world . .

  2. spacee

    spacee Member

    You have one really bad Rheumy.

    Is it possible to find another one?

    With the 3 min rule at my clinic, I am so scared of ever having to change
    docs with my complicated history.

    BTW, an astute eye doc who was filling in for my reg. one. Asked me if
    I finished the eye drops given by the other doc. He could tell by the blank
    look on my face that I have undiagnosed dementia. And told the nurse
    to write down that I should be given ONLY written directions.

    Did the other eye doc do that? Nope. Why? Cause I don't LOOK demented.

    Feel bad for you.

  3. Sansofpa

    Sansofpa New Member

    I was originally referred to the Rheumy's son; they are
    in practice together, but the appointment they gave
    me was 4 months out, so they called and bumped me
    up to the Dad; who I saw.

    I'm giving him another try on August 7th because
    he gave me much needed relief with the Tender Point
    injections in my butt, and he did find the Thyroid
    nodules that no one else found. Also at my next
    appointment, I'm having a Bone Density Scan in
    his office before I see him.

    I'm wondering if what you mentioned about Dementia
    could be true for me. At my Neuro visit, he spent way
    too long looking into both of my eyes; I didn't ask
    why . . just thought he could see my brain through them.
    I'm not sure if not answering timely for you was the
    reason for the "undiagnosed" dementia, or if our eyes
    are a clue, too. Do you know how doctor's can
    determine we have the early signs?

    At the Neuro, the same thing happened but I wasn't
    scolded. He asked me what is meant by the saying,
    "don't put the cart before the horse". I went blank
    and didn't respond. I was really thinking of an
    intellegent response, but it was taking too long. He
    moved on to the next question.

    Growing up, I believe all of my elderly relatives had
    dementia from things they did. My parents told me
    they had "old timer's disease". This was back in the

    My Dad had it, but he also had cancer and heart
    disease, then died, so I don't know how rapidly
    it would have progressed. My Dad's uncle, who
    he cared for, had it bad. That's my Grandfather's

    I never researched dementia, so I'll put that on
    my list of things to do. Honestly, I live with a
    sticky note board at my computer, at home and
    at work, because I do forget, frequently.

    I was so upset last month. I got a notice that
    I didn't pay my cell phone bill. That is so unlike me.
    My bill paying records are flawless. I have OCD,
    since I was 11, and my youngest son has it since
    he's 3.

    The Rheumy did write everything down, on a
    napkin, like the OTC cream he wants me to try
    for my neck pain, and the cervical pillow he
    wants me to buy. I go to every doctor visit
    with a rather large tablet and don't hide my
    writings during my visits. I even ask the doctor's
    how to spell words, medical terms and meds that
    I don't know how to spell. I also started asking
    for copies of their written notes to keep for
    my own records.

    Must you follow-up with anyone because of your
    eye doctor's statement?

    Anyway, I'm working on my list for my next
    Rheumy visit and researching professional medical
    journal articals that indicate any of my other
    symptoms to refer to, when I ask him if there's
    anything that should be done with my laundry
    list of them.

    Thanks for the input,


  4. Mikie

    Mikie Moderator

    I'm so sorry for all your health issues. I'm also sorry your doctor was such an ass. There are good docs and docs who may be good except they know nothing about treating our illnesses. If you can find a doc who specializes in what ails us, it would be better than seeing different specialists, especially if they don't even realize that we have cognitive issues. We may not have dimentia; we may have brain fog, cognitive problems and issues with memory.

    FMS "travels" with a lot of other conditions so you may have other things too. Thyroid issues are common. I hope you can find help. Sending up a prayers.

    Love, Mikie
  5. Sansofpa

    Sansofpa New Member

    During my first visit last week with the Rheumy, he found a lump
    in my neck on the right side of my throat.

    He scheduled me for a Thyroid CT Scan.

    When I got to the facility, they changed it to an Ultrasound
    because the lump was missed on a recent CT Scan and an MRI.

    I have 3 Thyroid Nodules; each 1 cm and close together.

    The Tech, from her experience, thinks once the Rheumy reads
    the report, he'll order a Biopsy. I'm also going to ask for another
    TSH and bloodwork that Jam mentioned to me.

    So, until the Rheumy gets and reads the report and I have my
    follow-up visit, I only know I have 3 nodules. I imagine the
    report might indicate something about them besides their size,
    but I don't know.

    I won't be hearing anything soon, because the Rheumy's
    (nearly 100 year old) Mother died 2 days after my visit.
    And . . he already had plans to be away 7 days for a lecture.

    My next appointment is on August 7th and I'm also having a
    bone density test there on that day. I have osteonpenia so
    they need to see if I now have osteoporosis.

    My Vitamin D is under 4, which is non-existent and I just started
    an Rx for 50,000 iu's of Vitamin D3. I took one, and don't notice
    anything different . . good or bad. It gave me serious stomach
    pain, so I took Tums for a few hours.

    Because this Rheumy gave me 100% relief from injections in my
    (butt) Tender Points, I am returning and begging for them in my
    neck/shoulder/upper back area. The pain there is sometimes
    relentless and alone at home, I'm almost always topless..LOL

    I have so many lumbar spine issues and to get relief is just

  6. Sansofpa

    Sansofpa New Member

    I was referred to this Rheumy by my Physiatrist who said I
    needed to see a Specialist for my FMS and back issues. The
    referral was to his son, but I settled for "Pop" because I wanted
    an appointment sooner than 3 months out. Guess I should have
    waited for Junior . . LOL

    I don't know if I mentioned this before, but he spent an awfully
    long time looking in my mouth; just as much time as the Neuro
    spent looking in my eyes . . straight through to my brain, I think.

    I found, who I believe, will be a great doctor for me. She's a FP,
    but sees and treats just about everything. Short of hiring a private
    dectective, I believe my research is valid leading to my selection.

    I cannot keep missing work time, so I'm going to be making my
    appointment, hopefully a few days after I see the Rheumy on
    August 7th, and try to get a second opinion from her regarding
    my Thyroid . . in the event I'll question his decision.

    And . . I got hate mail from my Urologist. I had to cancel my
    last appointment because it was the same day as one of my
    tests. He scared the bejeebees out of me by saying, "blood in
    your urine can be life threatening and I'm not taking responsibility
    for anything that happens to you". What the heck kind of
    statement is that? My appointment was last month and I planned
    on calling to reschedule, but more tests and doctor visits got in
    the way. I have microsopic hematuria, OAB, urgent/frequent/
    nocturnal urination, Urethra Papilloma and Interstitial Cystitis.
    I had a Cystoscopy last year and have 3-day cytology tests
    every 3 months and see him every 3 months. Sometimes my
    urine cells are atypical, have bacteria, etc., but I always have
    blood in my urine. The Cystoscopy showed no cancer, and no
    mass. Geez . . no rest for the weary!

    Like you, a few years back and for many years, when I had
    issues I lost weight . . lots of weight to the point of anemia.

    What a difference a diagnosis makes.

    A few flares ago, I had horrible lower tooth pain and there
    was nothing wrong with those teeth. I remember asking my
    dentist if she thought I might have TMJ, because at that
    visit I had jaw pain, too. I was never at the dentist when my
    gums were swollen, but when they are, I can barely eat
    because they swell so badly in the back, that my teeth don't
    even touch.

    I'm sorry for all you have, too and glad you don't have the
    maternity abdomen . . it's not attractive at my age. The
    swollen lower limbs don't really hurt, but they cause some pain
    because my shoes feel so tight, and my knee-hi panty hose
    dig into my calfs and leave dents.

    When I'm naked on these swollen days, it literally looks like
    string is tied around my body from all the lines and dents
    caused by my swelling. No bras . . they gotta' go on the
    way home from work . . that is the worst feeling because
    I have that really bad, burning pain in that area of my back.
    Air hurts me!

    Thanks for the vote of confidence and why did anyone ever
    coin the phrase . . Misery loves company . . but, it's a blessing
    for me with all of you out there :)

    Take care,
  7. SherylS

    SherylS Member

    When they check your thyroid, just TSH won't do any good. You need T4, T3, and Reverse T3 to really see what is going on. But it is hard to get a 'regular' doc to do that. Usually need a naturopath or holistic. You should also see if they would do a stool or blood test for yeast. Candida can cause so many symptoms.
  8. Sansofpa

    Sansofpa New Member

    Thank you . . those are the tests that Jam said I should have, too, so
    you must both be very knowledgeable in this area.

    If the Rheumy won't order them, my GYNO friend will.
    I grew up with him and he's feeling a bit down because
    he can't be my doctor for all of this stuff going on with
    me now. All my test results get sent to him and he just
    can't believe it.

    I'm a yeast carrier, in my throat, but "knock on wood", that
    hasn't flared. I'm assuming Candida inside my body or
    blood somewhere? Not sure of where you mean it would

    My urine has bacteria, but not Candida.


  9. spongebobmama

    spongebobmama New Member

    My Primary Care Dr never has convinced me he believes FM is real. The last visit w/him was so disappointing. Just was short and flip w/me. Really hurt after 20 yrs under his care. Now I only see him to keep my scrips alive. He needs to retire.He's not old but he has lost his passion for his craft. He is not a healer, he should have chosen another career choice. Wrong calling,oh so wrong
  10. Janalynn

    Janalynn New Member

    You poor thing, nothing worse than feeling 'blown off' by someone who is in the profession to help you.

    A lot of the symptoms you have are very common with Fibro. You can read the long list of common symptoms here on this site.

    Ruling out other issues (or identifying them) is of course a great idea. Even if you didn't have thyroid issues, you can still have the symptoms you do. BUT, it's obviously importantly to find out exactly everything that is going on with your body.

    I don't know if you've written a follow up post since your appointment. If you haven't please do!
  11. neoplus1

    neoplus1 Member

    Who will listen and not brush off anything you have to say is so important. I just recently had an appointment with my first Rheumy and I get the feeling he doesn't know much about ME/CFS and Fibro. Despite his lack of knowledge, he is very easy to talk to and open to everything I had to say. I told him I tried antibiotics before and they helped and instead of just trying to claim placebo or anything like that, he told me that antibiotics are being shown to do more than just fight bacteria.

    I hope your second Rheumy appointment goes well and better than the last. Take care.

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