I am a mess and need help!!!!

Discussion in 'Fibromyalgia Main Forum' started by suzyloon, Aug 10, 2005.

  1. suzyloon

    suzyloon New Member

    I have. My rheumotologist says it is the same things as NM but under the criteria because she says I don't have all the pressure points they can't call it FM. Of course at the time I went in I was on Flexeril, Neurotin 600mg 3x a day and Klonopin. So I haven't been in much pain and my pressure point aren't as prevalent. DOES THIS MATTER??

    No, according to the rheumotology Dr. Goel in ST. vincent.
    I made another appt. went off my pain pills (neurontin) for a few days to have her check out again. She refused, said she was sticking to her diagnosis of Chronic Pain Disorder... I DON'T Get doctors, I think most of them are quacks...

    So then I go to my PCP and she says she wants to add Effexor XR (i am already taking Paxil CR) to see if that will help with the pain (I am successfully being treated with Neurontin which the neurologoist prescribed) (WHAT THE HELL... Just add another drug to see what happens!) She knows very little about FM but thinks she knows a lot.
    SOOOOOo I take it for 3 days and am a nervous wreck. Irritated Homicidal, anxiety etc... Went off and 2nd day off I am starting to feel BETTER.

    I can't take these idiot doctors anymore. My insurance OHP Runs out at the end of this month. I don't know what I will do. I am asking for a referral to get a second opinion. I want to get into the OHSU or see the Specialist in Portland for FM. I need to do some calling because without insurance I don't know what I can get accomplished.

    Some please help... who is the well known doc in portland?

    Thanks you everyone. I want to crawl into a closet and never come out again. I am sooo frustrated with doctors who are not knowledgeable in FM and Chronic Pain Syndrome... (which is the same but isn't...?)

    thank you

  2. suzyloon

    suzyloon New Member

  3. lvjesus

    lvjesus Member

    I remember reading a past about your being dx with chronic pain disorder vs FM, but don't remember the gist. I will try and find it though.

    I am curious why it matters what the dx is? If you are getting meds for your symptoms, will changing the dx help? I am not being smart, lest you think so, I am just wondering what you are hoping to accomplish in the dx.

    I agree with the tender point thing. The ONLY info I read that said ANYTHING other than you had to have 11 out of 18 and in all quadrants of the body is on www.fmpartnership.org. Click on "Learn about Fibromyalgia" then "Overview of Fibromyalgia" and pick you language.

    Under the heading "Limitations of the ACR Diagnostic Criteria" you will find what I mean. It is the only place I remember reading about exceptions and I was glad because I mostly had pain in my upper body and I work on the computer all day. Now I have more in the lower body, but that came later.

    BTW the FM partnership site is also liked to this site under organizations, so I know it is okay to post the web address here.

    Will you explain about the different diagnosis? Maybe we can give more advice.

    God Bless,
  4. nina2

    nina2 New Member

    From what?

    Do you have arthritis? or back problems?
    Where would the chronic pain disorder originate from?

    If you are having overall pain in your muscles( well you know what I mean) why not call it fibromyalgia.

    First mistake my dear was to be on your meds before your examination. I made that same mistake years ago and it took that much longer to diagnose me as they were blaming everything on depression.

    I went through the same thing with one medication after another with no improvement.

    I guess you need to see another doctor and get an opinion that makes sense.

    But sense this doctor has already diagnosed you with chronic pain it would not be such a big deal for another doctor to diagnose you with fms. Fibromyalgia is often misdiagnosed and sometimes takes years to pin down.

    I had been dianosed with "myalgia" which is muscle pain before finally diagnosed with fms.

    I went into my doctors office one day with a written list of symptoms that I had.

    I told her that this is what I felt like everyday. She then took notice.

    I don't no what else to add, but I can feel your frustration with this as it is justifiable.

    I hope you reach a better solution soon.
  5. suzyloon

    suzyloon New Member

    The difference is that my PCP wants to treat me in her own way and ignore what FM patients or Chronic Pain Syndrome need. My rheumotologist told me there was not difference iin Chronic Pain Syndrom than in FM except the criteria of Diagnosis for FM... Apparently I don't have all the pressure points... But I have also been taking Neurontin 600mg 3x a day... and flexeril... Before getting on this I was a mess. Leg, arm, body pain, back pain, MIgraine headaches, problems with fatigue, sleeping. Numbing and tingling in the limbs. Restless leg syndrome. Before medication for pain I went to my Chiropractor 4 times in a month and he checked my pressure points and found I had 13 out of the 18... The rheumatologist choice to ignore this because she feels he is not a real doctor... ARGHH!!!

    I am sick of PCP's, the specialists don't want to prescribe medicine they want PCP to handle that. However my doc wants to change things and add another anti-depressants here and there. She treats me like I know nothing. The problem is that I know more about FM than she does and this irritates her and she ignores what I have shared with her about FM... Chronic Pain Syndrome the same thing...

    SOOOOO.... MY dilemma is that i want another referral to a new rheumotologist to rediagnose. I want to be in the OHSU Fibromyalgic clinic but they are trying to tell me that I can't because I am not actually diagnosed with FM...

    Freaking circle of a mess... I feel hopeless and helpless to these doctors. I need to take some control back and get someone who knows what the hell they are doing in regards to Chronic Pain Syndrome or FM.

    I have had it!!!!! I want the proper treatment and the proper diagnosis. I have a book on FM and I DO meet all symptoms and quadrant pains. However the Rheumotologist told me that I didn't have enough pain in those areas... (I was on neurontin for pain) F--ckg RIDICULOUS!!!!

    OK, I feel better after venting...
    I need direction and a calm way in how to deal with getting a new dr. getting a new referral, and finding out if any of these people will see me without insurance.

    Thanks for all your help and listening.
  6. NyroFan

    NyroFan New Member

    I kept it simple. If one doctor did not help I stopped his meds and went to a new doctor. I would try that one out and if he could not offer pain relief I would try another doctor.
    The one thing I didn't do was tell each doctor I had tried others. I started fresh with each one: less explaining to do.
    I know it is expensive and I hope you have the means to get really good medical care. It is so difficult for many of us to do.
    Good luck and I hope you feel better soon.
  7. lvjesus

    lvjesus Member

    I think I understand your dilema. I hope that is spelled right. I too would either find a new PCP, and check to make sure before I go that they believe in FM, or a referral to a new specialist.

    You need someone who can treat you and what you have and not use you as a guinea pig. Seems to me a doctor who wants to help you would be just as interested in finding out what you have and how to treat it as you are.


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