How many of you have given up on doctors?

Discussion in 'Fibromyalgia Main Forum' started by meowchowchow, Sep 27, 2005.

  1. meowchowchow

    meowchowchow New Member

    I don't even bother going for my symptoms anymore (unless it's something really scary like last year when I had a numb left side). It's like, why bother?

    Like I'm so tired and shaky, but you know they would just run blood tests and everything would come back okay. I just wish they could run a test and then give me a pill and fix me but I've given up hope on that.

    Thanks,
    Meow
  2. hidlyn

    hidlyn New Member

    I took a hiatus from doctors becaue I got tired of being told there's is nothing else we can do or that blood results looked OK for other things. Then there was 18 months of trying to find the right combination of herbs, supplements, pills, etc to at least make the symtoms livable. After researching for a while, I got tired of the "fad" of the day. I sincerely hoped that people were feeling well for whatever they took, but I was exhausted by the effort after a while of trying to get better and became very jaded about all of it. I am only now trying once again because I plan on filing for SSDI. I'm sure the lack of doctors records will be a problem, but I was just sick of begging doctors to believe me. I have found a couple new things to try, and I'm going to doctors to discuss them next month. After 5 years of letting it go, I hope I'm ready to plow in there again and try. I'm too young to live like this.

    Good luck to you. I know how it feels.

    Take care

    Heidi
    [This Message was Edited on 09/27/2005]
    [This Message was Edited on 09/27/2005]
  3. stillfighting

    stillfighting New Member

    But I find I don't spend as much time going to them. It's not because I feel any better. It's more that my symptoms have stabilized and there's nothing more the docs can do for me when I have a "run-of-the-mill" flare.

    I do go to docs for things like routine exams and to make sure the autoimmune disorders that cause weird antibodies are still under control. But basically, most docs (including alternative medicine types) want only to cure you. Believe me, I've spent enough time looking for "the cure", and haven't found it. I've found things that make me feel better, but so far no cure.

    I went to my PCP yesterday to make sure I didn't need prophylactic ABX before a dental procedure (I don't). I told him about the memory testing the SSA psychologist did on me last month (he confirmed it is quite poor), and he wanted to know if there was anything that could be done to improve the situation--LOL! He gave me my bone density results, took my blood pressure, and both are much better than average. His comment was to keep doing what I'm doing :). He's just as frustrated as I am.

    No, I haven't given up on docs, but realize that there are limits on what they can do for us. So except for physical exams, infections, and preventive care, it's better to figure out what keeps you on an even keel, and deal with minor flares yourself. Why should 2 people be upset?
  4. patches25

    patches25 New Member

    Many times in my long life of this disease I have given up---going as long as 8-10years between doctor visits. I see no doctor about my CFS/FM nor have I in the past 5 years. I am really hoping a FFC comes to Portland. Currently I manage this with nutritional things mostly. Since I am retired,I can rest as needed. E.
  5. Mareeok

    Mareeok New Member

    to my general practitioner and no more to the rheumy. I was so encouraged when I found this rheumey because he was supposed to be a patient advocate and has been working with RSD/CRPS and cheonic pain sufferers for over 15 years. He was a real waste of time. My GP does not push drugs on me and she only recomends meds that will not affect my liver.
  6. stillfighting

    stillfighting New Member

    I think you are right about docs needing to have their egos stroked. My PCP and rheumy both fit all of your criteria for "cream of the crop", but I'm sure they get frustrated when things don't work well for us.

    So, I make sure I let these docs know how much I appreciate what they are doing for me. When my PCP ran out of options for me, he referred me to a teaching hospital, where I found my current rheumy. I told him that I really appreciated that he would admit that he didn't have all the answers, and gave him feedback on the help the rheumy provided. On my last visit to the rheumy, he prescribed neurontin to help with neuropathic pain, and instead of making me take the 2 hour trek into DC each time a calibration was needed, he consulted with me by email. It turns out the side effects were intolerable, but I let him know that I appreciated his approach to my situation.

    Even though these docs are "the cream", they still are people with needs. They need to be told they are doing all they can, even when it seems like nothing is working. It's not their fault, it's the DD!

    Hilary
  7. Sbilek

    Sbilek New Member

    Have only given up on traditional docs as realized several years ago I was wasting my time there for any real help in improving my health, so went the alternative route, and glad I did.

    I still go and see my traditional doc, but just to tell me what is wrong with me, if I'm having a problem with something, and then I go elsewhere for fixing it.

    Sbilek
  8. Jgavi

    Jgavi New Member

    Yeah, I was suckered in at first- I did what the Drs said, got worse and spent a fortune...

    than I found out many Drs dont know what they are doing...

    if they rush you in and out in 10 mins and can diagnose you, give you a few scrips and say come back in 30 days...
    dont go back...

    but we all need Drs, finally i did find some good Drs, they are hard to find...thank god for support groups also!

    jgavi



  9. joycejoyce37

    joycejoyce37 New Member

    Its like they dont give a damn all they think is you want narcotics and they dont want to hear or help you its like why bother and the only reason I have a answer for this they probaly need his records for review if you are on ssdi or some kind of disability so you are being held hostage by your doctor in sorts no doctors no records no help joycejoyce37@msn.com
    [This Message was Edited on 09/29/2005]
  10. atpeace

    atpeace New Member

    I gave up on expecting any help for my FMS from the medical profession long ago. I realized they simply didn't KNOW how to help me, and I was so sick of taking medicines to cover up the symptoms. I felt drugged-out and confused.

    So, I decided to quit all meds and quit expecting the Dr. to suddenly pull a miracle out of his medical bag. It made no difference in my Fibro, but I felt better without the drugs in my system. Obviously, they weren't helping me anyway. (Not to say certain drugs don't help certain people...it just wasn't for ME.) I haven't been to a Dr. for my Fibro in over 6 years.

    I figure I'll hear about it when they find a CURE, and THEN I'll make an appointment.

    Lori

    [This Message was Edited on 09/29/2005]
  11. atpeace

    atpeace New Member

    I remember about 5 years ago, during a really bad flare up I called the Rheumy who treated me for Fibro. I was even in a Fibro drug study with this guy. I went every single month -- for 16 months! -- to be examined and have blood drawn for the study. I took who knows what meds, and took valuable time from my own schedule (I work full time) to give them a ton of information as a "fibromite".

    BUT...when I called that Dr's office to get an appointment during my flare up, they said he was "too busy" to accept any "new" patients and REFUSED to schedule an appointment for me (since it had been 18 months since my last visit).

    I haven't seen a Dr. since for my FMS. Go figure. :(

    Lori
    [This Message was Edited on 09/29/2005]
  12. Danielle

    Danielle New Member

    A FFC clinic will be opening in Portland around November. They are supposed to e-mail me when it is ready.

    Danielle
  13. Gail8899

    Gail8899 New Member

    I have been to so many drs since 87 that I can't count them all anymore. My present dr and I have an agreement. If I need her I will go to her and tell her exactly what I need. She reserves the right to say yes, or no. Otherwise I see her twice a year to have my scrips refilled, and regular bloodwork done. Since I don't have insurance it's the best way for both of us.

    ..Gail
  14. Chelz

    Chelz New Member

    Meow,

    I feel exactly like you do. As a matter of fact, I was telling a friend of mine the other day that why in the world should I bother with them.

    I had to find a new doctor because I changed my insurance plan. I thought that maybe I should at least see someone in case I have a BIG emergency. Well, as soon as you mention Fibro, it's like their attitudes change, they just don't understand.

    Anyways, docs just give me drugs in the past, and the drugs made me much worse, so why bother. Hugs, Chelz.
  15. orachel

    orachel New Member

    That is exactly the conclusion I've come to as well. "First do no harm"....well what the heck do they think they're doing to us when they treat us like hysterics and hypochondriacs?!

    I'm literally going out of my mind with pain in the 4 mos since this started. All my doc will give me is Ultram, and even at the highest dose, 400mg daily, it DOESN'T EVEN COME CLOSE TO TOUCHING MY PAIN, let alone controlling it in the slightest. I'm stuck with these medical wankers until I get some medicine that works for my pain levels (JUST EXTREME...for 4 mos straight).

    I don't know what to do. I used almost exactly your advice in finding 2 doctors...one an internist and one a physical medicine doc...they both seemed great the first few times I went to see them (like 2!). The problem came after the first few of their scrips didn't seem to make a dang bit of difference, even aquatic therapy isn't helping me beyond the slight pain relief of being in the pool for the 15 minutes I'm able to tolerate it. Suddenly and seemingly without warning, both docs "turned" on me completely with no logical reason whatsoever. PCP told me I was manic and needed only the help of a Psychiatrist (this is based on a conversation right after my other doc sent me to the er because I was having horrific scary neurological symptoms AND inexplicable but definately related MANIC talking...and the PCP knew all of that). That really made me feel horrible, right up until the therapist I'm seeing to try to help me with pain control (all the mental "blocking" methods...those aren't working either!) literally laughed evil PCP's diagnosis out the window. She said that the only problem I'm having is that doctors won't even attempt to control my pain levels, plus some to be expected difficulties adjusting myself from the healthy vibrant woman I was 4 mos ago, to the near housebound ball of pain that can literally do almost nothing for myself...including drive!

    Then came the Physical Medicine doc who I saw last time abt 3 weeks ago and was clearly unsure how to proceed with me since the ultram and zanaflex aren't working AT ALL. He told me to hang in there (still wouldn't prescribe anything to HELP MY PAIN or even refer me to a pain clinic!), and that these things sometimes took 6 mos to 2 years, and not to get frustrated at my total lack of abilities due to pain and MAJOR brain fog and fatigue at this point. Then about a week after that, I called him on emergency basis because my brain fog was SO much worse...then other strange symptoms started to happen. He sent me directly to ER because he was worried I was having ministrokes.....

    Then, abt 2 weeks after that, with no contact whatsoever in the meantime, my short term disability yahoos at UNUM Provident (those evil immoral devils! LOL) told me that my Physical medicine doc had cleared me to go back to my (very physical and EXTREMELY mental and multitasking) job for 1/2 days....and then congratulated me on "getting better". When I heard that message on my machine I literally gagged.

    So I don't know what the heck to do! I'M ABSOLUTELY DESPERATE!!! YOU SEEM TO KNOW A TON ABOUT THIS...BEEN THERE, DONE THAT KIND OF EXPERIENCE. I HAVE MONDAYS VISIT TO CONVINCE HIM THAT I CAN'T DRIVE OR COOK, AND HAVE TO HAVE A FULL TIME LIVE IN "BABYSITTER" SO I DON'T FORGET TO EAT FOR DAYS ON END OR BURN MY HOUSE DOWN...SO OBVIOUSLY I'M NOT ABLE TO GO BACK TO WORK...PERIOD. Don't I flippin wish!!! Don't these people think I'd love to have my life and my work back? We're broke and scared, here! LOL

    I ALSO HAVE TO MANAGE TO CONVINCE HIM TO DO SOMETHING FOR MY PAIN, AS I'M LITERALLY ABOUT TO FLIP TOTALLY. 4 MOS OF NONSTOP UNRELENTING PAIN IN LEVELS OF 7-9?? WITH A BUNCH OF HORRIFIC "10" DAYS? ENOUGH TO DRIVE ANYONE BONKERS, RIGHT?

    Help!!! Any advice from anyone welcome and appreciated!!!!

    Hugs to all,
    Rachel
  16. deelite127

    deelite127 New Member

    as for my FM, i've given up. I've seen dozens of doctors & they all turn out to be the same. So i just go to my PCP. He keeps me comfortable & i take it day by day.


    Dee
  17. patches25

    patches25 New Member

    Danielle, Thank you for the information. That will be wonderful. Thank you, thank you. E.
  18. elsa

    elsa New Member

    I hate to be the odd man out here, but my PCP has been wonderful from the moment I told him I thought I had fibro.. I realize how fortunate I am, but he's not the only example.

    My sleep specialist was very informed on CFS/FM and he called me the afternoon after my study to give me the results.

    The doctor I found to help with bio-identical hormone treatment for CFS/FM HPA axis problem has been unbelievably helpful too.

    I know luck plays a hand in this, but I can't just be lucky everytime out. There are plenty of doctors out there who keep up with the new information and medical treatments.

    There are plenty of arrogant jerks ... but they are not all monsters.

    I hope my luck continues to hold and I hope all of you who have had to deal with monsters will have better experiences soon.

    Elsa

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