a warm hello & introduction.

Discussion in 'Fibromyalgia Main Forum' started by oceans, Jan 6, 2003.

  1. oceans

    oceans New Member

    i only just recently found this message board, and since have been consumed with the interminable information & the supportive, caring people here.

    the bright side to this syndrome is the nature of other people also afflicted, the understanding and comfort found in others with Fibromyalgia can be life-saving in dark times.

    so, hello, my name is kate, and i live in Canada, province of British Columbia. i've been living with FMS/CFS for almost five years.

    i've only just begun to understand this syndrome and available treatments, and i've only just had a definitive diagnosis though many physio therapists & massage therapists have suspected.

    unfortunately, my doctor seems interested in only a phlegmatic relationship, and is not exactly, inspired to help me. he has denied me access to pain meds with the suggestion that i need to learn to live "around" the pain, but the pain is intrusive, harrowing, and more often than not, continuous. not that the idea of "living around the pain" isn't romantic (ha) it's just absurd. even with excercise, massage, yoga, healthy foods, long, hot baths, aromatherapy, counselling, etc, etc there are still many nights during the week that i can't move.

    the town i live in isn't exactly ideal for resources, and i'm having a hard time finding a replacement doctor. i've come to find a lot of doctors are unwilling to take on "pain" patients- but i keep trying. the ones that would like to take me on have already got more patients than they can handle.

    i don't know if i'm suffering from any other auto-immune diseases but it would be nice to have the attention of a compassionate practitioner who is willing to help.

    lately i've begun to get headaches, but the pain has spread from just the lower back area to the entire back, legs, knees, feet & neck over the last 2 years.

    nothing i have tried has worked, amytriptyline(sp?) seemingly had no effect, and i've only been prescribed tylenol 3 & 4 for pain, which were unhelpful. presently i have a prescription for remeron which i haven't yet filled.

    i'm sure i'm forgetting a million little details, but for now this is what was in mind.

    i'm slowly but surely educating myself and becoming acquainted with all the facts and information regarding FMS and any help or personal advice would be welcome.

    so, now you know my history, please to come in and tell me yours.

    ~
    kate.
    [This Message was Edited on 01/06/2003]
  2. jaster45

    jaster45 New Member

    Well Kate it sounds like you have been through a great deal.I had suffered for years with CFS/FM too.I just posted my story on the message board and the therapies in which I found effective under nutritional considerations for CFS/FM must read.

    I hope you gain some insight and hope from this.

    Hang in there,

    Jaster45
  3. oceans

    oceans New Member

    jaster45 & kid-sonny,

    thank you for your replies and empathy.

    there is so much research to be done, so many theories, ideas... i have copious amounts of hope.

    Jaster45, i'll have to look up your story.

    thanks again, and take care.

    ~
    kate.
  4. sheri

    sheri New Member

    Its nice to meet you! I think this is a wonderful site also, and I am sure you will find lots of helpful info here, if anything, its good to have others to commiserate with! I agree with kid-sonny, that if some of the md's really knew what this was like, perhaps more would be done for sufferers.Its sad that a lot of the medical profession does not recognize fibro...I enjoyed reading your post-and was appalled that you were told to "live around" your pain.Thats a shame! How does one do that?
    I, was in bed the other night with a hot water bottle under my thighs, bio-freeze rubbed on my lower back and shoulders, (anyplace I could reach). Right now its almost midnight and had to have testing done with ultra-sound today. After 2 hours of the rubbing on and under my rib cage, and stomach, and kidney area, I am hurting . So sore.
    I know many can identify if they have fibro. It is true that those with it feel pain more intensly and longer.
    Hope you post often and join chats too!
    Blessings to you, sheri
  5. darlamk

    darlamk New Member

    Hello from South Dakota! I think you will find much valuable information here and lots of emotional support. I have had FM for over 12 years and recently stopped working due to increasing problems after a neck injury. Good luck to you with your quest for knowledge!
    Sincerely,
    Darla
  6. 1maqt

    1maqt New Member

    So sorry you have Dr who is not helping you. It sounds like he has maade you feel like it is all in you head. Well, it isn't..You are a very special person in the sight of God. Noone should treat you with such disrespect.

    There are meds. that will help, and you are deserving or what ever makes your life more tollerable.

    Have had Fms/etc. for 28 yrs.. I have been treated like a child and worse. I Read all I could and this site haaas loads of info.

    Learn all you can ,Write it down, including the medicines that are recommemded that you feel will hael you. Find a doctor who will listen, and don't give up untill you do>


    Lots of luck...........1maqt
  7. idiotsinc

    idiotsinc New Member

    Used to be a Canadian on board by the name of Father Troll. Sent him to a web site of a man named Jim Roche (another Canadian with FMS, hope the spelling's right) where there was a mention of a Doctor Donaldson in Canada that the Troll went to see. Last time I got an email from the Troll he was doing exceptionally well. Punch the info into google.com and see what you come up with.

    Bob
  8. Eilie

    Eilie New Member

    Hi, Oceans,

    What a neat "name." I'd like to join the others who have been welcoming you.

    I have been astounded at how many doctors treat their fibro/pain patients so poorly. I blithely assumed that in the 21st century, antiquated, Neanderthal medical notions about managing pain were a no-brainer. Now I know how wrong I was.

    Not that I haven't encountered my own problems, mind you. I had to leave one doctor because she insisted (if you can believe it) on my being on opioids an dopiod derviatives. Despite having horrible reaction, she persisted. I finally went running back to the PA who had been managing my care for several years. I'd only changed because my PA's location is very inconvenience. Inconvenience be dammed! She's great.

    On a couple of occasions, I've told physicians that I view my relationship with my doctors as a partnership. They are the medical experts but I am the expert on my body and what's going on with it. If they can't work within those parameters then we have no basis for a medical relationship. It worked both times, one much more favorably than the other. Gratefully, the one that didn't work as well didn't need to continue.

    I live in Boston, Massachusetts and have had fibro symptoms for four -- possibily longer -- or so years, finally diagnosed about two years ago. It was the onset of the awful all-over pain that drove me to finally seek a diagnosis! I'm every so grateful for the Internet and the ability it gives me to do research about my conditions. I regularly talke about and even take articles of interest to my PA and my psychiatrist (the first MD to whom I explained my 'parternship' concept). I'm astounded by the number of symptoms I have that are attributable to fibro and wouldn't even have know about had it not been for the ability to research and learn about fibro, particularly at this website, which I consider about the best.

    I've gone on enough -- again welcome and [[[[hugs]]]].

    Eilie
  9. oceans

    oceans New Member

    thank you all for the warm welcomes, and responses.


    eilie, thank you.

    and i have to say that way of wording your expectations for your doctor & of yourself is quite eloquent. perhaps, i should give this a try in my up-coming appointments. it sincerley addresses the kind of relationship you need and expect, i think it's upfront & articulate.

    i have two booked appointments with two seperate doctors, and i'm nervous! i am always intimidated by doctors, which is, of course, their goal (a lot of the time) i'm unsure how it will go, but i'm hoping past experiences will not be realized again.

    i'll let you all know.

    with blessings,
    kate.
    [This Message was Edited on 01/07/2003]
  10. Eilie

    Eilie New Member

    Unfortunate but true. But they're just as human as you or I. Problem is, many of them wouldn't agree with me. I used to be very deferential with MDs and have had to train myself not to be. One thing I do, especially with male MDs, is imagine them sitting on the toilet :eek:). It makes them much more human. The trick is not to start laughing.

    Blessings,

    Eilie
  11. oceans

    oceans New Member

    that's the truth & i've tried that numerous times, though i know in their eyes i suddenly appear distracted & stressed out!.

    i suspect my problem is due to the number of physicians that look at me like i'm simply a drug addict looking for drugs.

    even though pain meds are always a last resort for me, everyday.

    now i assume that is what they are all thinking, because i look well enough, if you aren't looking closely.