Angry Vent being treated like hypochondriaTriggersSuicide

Discussion in 'Fibromyalgia Main Forum' started by lynnintn, Apr 15, 2007.

  1. lynnintn

    lynnintn New Member

    No need to respond. I just need to vent.
    After being sick for 4-5 years and seeing about 5-6 doctors, I am just now getting a diagnosis. After being diagnosed w/Hashimotos thyroiditis and possible FMS and severe depression, I tried to kill myself 2 X and was in the psych ward for almost 3 months. I had ECT (shock txs) forced on me under threat of court order. Since that time, no doc had taken me seriously re:the horrible pain I endure daily, the memory loss and cognitive difficulties. I have had tons of abnormal labwork but no one I have seen ever took me seriously or took the time to investigate the cause of my problems.

    My new neurologist has diagnosed me with antiphospholipid antibody syndrome (APLS) based on my MS-type symptoms, labwork (abnormala clotting factors such as Lupus anticoagulant and protein S) and borderline + RF. I had a pulmonary embolus at age 22 and almost lost 2 babies which are indicators of APLS. I even mentioned to my neuro that I suspected ALPS or mixed connective tissue disease before he tested me. Well, it had taken years to get a diagnosis that my docs will now take seriously. This particular dx. also means I possibly have Lupus, based on all of my labwork and symptoms. This APLS is pretty serious so I will be seeing a hematologist and a rheumatologist next. I have been walking around with a very high risk of heart attack, stroke, new blood clots, etc. and NO ONE EVER LISTENED TO ME UNTIL NOW. I am just so pissed I want to march into my past doctor's offices and say "see, I am sick and you were too stupid to investigate or too egotistical to really listen to my thoughts on what might me going on". My neurologist said thank God I have been taking aspirin for all these years for joint inflammation and pain or I could be dead from a stroke or another pulmonary embolus.Several folks in my family have had deadly aneurysms in their 50s and 60s whic my neuro said were likely due to APLS, an autoimmune disease with a genetic component. I also have had a family history of Lupus and RA.

    I m not happy to have APLS and possible Lupus, but at least I know this pain is not "in my head". One of the reasons I did try to kill myself was due to the pain and I do have pretty severe bipolar depression.

    I have resorted to obtaining some hydrocodone online (all legal with a doctor in my state that requires medical records and talks to me before I can get refills and requires medical records. Aspirin, hydrocodone and prednisone are the only meds that allow me to function at all.

    Our medical establishment sucks (I am an RN who has also applied for SSD). Finding a doctor who listens and cares is rare and at least I am blessed for finding my new neuro. It is simply ridiculous that we are treated as hypochondriacs and nut cases and only get lucky if we get a definitive diagnosis. It is WRONG that we have to go through so much, especially since most w/autoimmune diseases are women, in order to be taken seriously.

    Anyhow, thanks for letting me vent here. I cannot keep any kind of diary (online or written) per my attorney during this divorce from my perverted abusive husband.

    I am taking a pain pill so I can sleep. My heart goes out to all of you on these boards as I know my story is NOT unique.

    Love,
    Lynn in TN
  2. enjoysue

    enjoysue New Member

    I know there was no need to respond but I felt a need to after being off the boards due to extreme pain. I too did 4 treatments of ect to try and get a grip on my depression and pain. Also am divorced from an abusive ex so I support you 100% and look forward to the day you will be free from him plus I also have 3 boys.

    This year has been a nightmare for me ever since I moved.

    I finally got a surgery of my stomach that I have complained about to my old doctor who never took it serious and even ordered 600mg. of ibuprofen though common sense told me that wasn't a good idea so I didn't take even half the doses. They suspect my ulcer was caused by that med. Still don't know what they all found from the surgery til I see the doc.
  3. PVLady

    PVLady New Member

    As I have posted many times, even Montel Williams had to see 28 doctors before getting a diagnosis of MS.

    Your experience is more common than not. There is a very good book out called "How Doctors Think". It is full of examples of misdiagnosis that nearly cost lives (and did in some cases). A real eye opener.

    One example in this book is also someone misdiagnosed who really had APLS Syndrome.

    I have been through many doctors and even now I have something wrong without a diagnosis - I am simply tired of seeing doctors.

    Doctors hate treating chronically ill people, who can't be cured. They prefer treating healthy people who make them feel like heros, not failures. You really have to think on that one, but I believe it.

  4. Reidsbeads

    Reidsbeads New Member

    You both have me in tears. It is a nightmare looking for a good DR. who will listen to you but once you find that Dr dont let go!! I went through 12 drs in 5 years so I can feel your pain also. It just tears me up when people get so depressed they try to kill themselves or even worse wish that their disease will kill them.
    I got diagnosed on December 7 of 2006. I knew for quite sometime something wasn't right. I was actually excited when I finally had a name for all my pain and stuff. Of course that was short lived cause quite rapidly my pain is getting so bad and in places that never hurt before. I had lower back pain and siatica on the left side of my back and going down the back of my leg. I have always had problems in the upper part of my back with just getting knots that need to be massaged out and I got a neck injury from falling on some broken bleachers at a basketball game in Jan 2005.
    Now my legs are so weak in the hips and the knees and the muscles up and down my legs I have to use a cane.. when I sit to go on the toilet my left side goes numb from the hip down to my foot and then it goes into my lower back
    but it starts out as pain in my hip and very quickly spreads so I cant sit to long.
    I am starting to get where I just fall asleep in the weirdest places (on the toilet)typing on here to you guys and I also am starting to feel dizzy? or lightheaded? or just like i dont have all my brain cells working at once and another new one is twitches, just out of nowhere, sometimes when Im sleeping and sometimes when I am typing and when I use the mouse and dose off then jerk awake and find myself on some really weird websites.
    I hope I dont start wanting to die that scares me!! I know this dd is going to have me in a wheel chair before long and my insurance wont pay for physical theoropy which is one of the things I am supposed to do but dont know what to do cause I cant afford to pay on my own. That is scarey to. Well I ranted myself I guess but If you guys ever think about suicide again you come here cause all of us are here for you. Tam
  5. obrnlc

    obrnlc New Member

    hi lynn,

    so sorry for all that you have gone thru, glad you finally found a decent doc who will diagnose & treat you and not try to emotionally destroy you (what part of "first, do no harm" do they not get????).

    i am also an rn and we know how arrogant some docs can be, and the way they talk and make jokes behind pts backs at times, etc. and the fact that you came up with the proper diagnosis to begin with, then they just blew you off---i can see how that put you over the edge, but i'm glad you were unsuccessful in your attempt, we can't let those b@$#^%!* win!

    i can totally relate, as most here can, about how it actually feels "good" to have a diagnosis as we are SOOOOO sick of being called mental cases and crazy women because THEY can't figure it out!

    I know how, as a nurse, you even start to doubt your own sanity since there is no "black and white" like we learned in training, and this drove me crazy in my "quest" for answers. I wanted something with PROOF, no matter how bad it was, just to justify my symptoms!

    Glad you found the board, come on in and "rant" anytime, you'll always find someone who will listen here, and when you feel totally alone, we've all been there and will be there to help get you thru.

    good luck to you--L
  6. lynnintn

    lynnintn New Member

    even though I did not expect a response from anyone. I know there are some of you guys who are in worse shape than I am so I try not to complain much. My heart goes out to all of my fellow "invisible disease" sufferers. I am so sick of hearing "you don't look sick" I COULD JUST SCREAM! And I know you all have heard the same. And I am ashamed to admit that before I got sick, when I was a nurse case manager, I used to poo-poo those folks I worked with who had FMS/CFS and felt they were mental cases. And it was because of my training in traditional western medicine (I went to Vanderbilt-supposedly a cutting edge university).

    I used to have a few patients with horrible chronic pain and I did refer them for counseling as I was worried they would try to kill themselves. I still remember them and wonder if they are still alive. No wonder so many of them smoked pot and drank alcohol-their docs never treated their pain correctly, in my opinion. But that is another subject-untreated chronic pain.

    Hugs to all of you. I know I am not alone and that makes me feel better. I am just so sorry there are so many of you out there with similar stories. It is friggin' heartbreaking.

    Love,
    Lynn in TN
  7. rockyjs

    rockyjs Member

    Lynn, so glad you finally got a diagnosis (and a very serious one at that). It's hard to believe that with your family's medical history and your symptoms no one checked those things earlier, but I suffered for 25 years and then found I had FOUR rare genetic disease (two confirmed with DNA testing, the other two pending). I had to become my own advocate and walked out on a lot of arrogant SOBs who tried to tell me it was "in my head."

    I don't sign releases for medical records any more unless they're from the good doctors. I tell the offices that
    I'll bring in copies of test results myself. I found that there were a lot of subjective, derogatory comments going way back that were prejudicing doctors right off the bat.

    I would send copies of the diagnosis and notes from your new neurologist to all those idiots who misdiagnosed you and require that they be added to your files. At least there will be corrected information if those records are requested.

    Jan