afraid to tell doctors about pain anymore

Discussion in 'Fibromyalgia Main Forum' started by gracie97, Aug 2, 2003.

  1. gracie97

    gracie97 New Member

    Doctors have been telling me for years that I probably have FMS, and I've had chronic daily migraines for years too.

    About six months ago, I decided never to talk to doctors about the migraines again (except to ask them for specific treatments as I find them). The reason is that it has become too emotionally painful for me to see them essentially ignore my suffering and make no effort to help me. And it causes problems (I've been chewed out and even dumped by doctors who got sick of me asking for help with the almsot constant migraine that is wreaking havoc in my life).

    I'm angry: In the last 20 years, every single migraine treatment I've tried has been my idea, not theirs. They don't offer anything.

    If they aren't going to use their medical knowlege to help me, I don't see any point of going through the humiliation of begging. They obviously don't care how much I suffer.

    And it's getting to be the same way with fibromyalgia (which I believe I developed as the result of living with so much migraine pain). Doctors just look the other way and change the subject when I try to talk to them about it. They don't try to treat it, and they don't prescribe palliatives. If I ask for painkillers, they really react badly, as if I'm an addict just making up the pain to get drugs! Maybe I'm giving up too soon, but after my experience with medical unhelpfulness/disinterest with my serious migraine problems, I can't imagine that they'll do any more for the fibromyalgia.

    Do others have such problems?

    I find they seldom mention my complaints about either in their notes: They just write things like "depressed and crying" and neglect to mention that I was telling them about being in the midst of a 20 day relentless serious migraine at the time or that my entire body aches much of the time. So what's the point of trying to communicate only to wind up feeling subhuman as well being stuck with all the pain? I can better use my time and energy searching for treatments myself.

    Grace

    PS: One yelled at me, "I can't do anythng for your pain! You're going to have to figure out how to deal with it! It's a waste of time for me to listen to you talk about it!" and then she stomped out of the room. The one after that dumped me after I asked him for narcotic painkillers. And then I deliberately chose a doctor without a DEA license, thinking he at least would have to believe in my pain...and he did, but he said he had no idea what to do about it.

    I know they can't help being like they are, but sometimes I just hate them because I have to suffer a great deal because of it, both from a lot of pain and being treated as if my pain doesn't matter or isn't real, very dehumanizing.

    I feel better for having got this off my chest. It's just something I'm having to deal with lately.
  2. Mikie

    Mikie Moderator

    I always ask, "Have you seen a pain specialist?" If not, I highly recommend it as they understand our pain and have a variety of treatments available. If you have seen one who wouldn't treat you, find another. There are good pain specialists out there, but you may have to look until you find one. Good luck.

    Love, Mikie
  3. elaine_p

    elaine_p New Member

    would be to make a list of things to talk about with the doctor. Give it to the doctor for inclusion in your chart. (I keep a daily log of symptoms and the doc just sticks it in.) If both could be in your chart it might help. Maybe one problem with all these docs is they see the prior "depressed and crying" notes, they feel powerless, and they just carry on in the same vein. Of course, they should all be shot but you didn't ask me that. :)

    And first off, find another doctor. Mikie's right in suggesting pain management. You might also want to try the holistic approach.
  4. epicurean

    epicurean New Member


    She is right on target.Find a Pain Managment Dr.,if he dosn't help, keep going till you find one that does.I have been going to one for over a year,and I can't describe how much better I feel,with my fibro,and other pain I was having-PLEASE FIND ONE<you won't be sorry!!Good luck.
  5. arod59_2

    arod59_2 New Member

    im so sorry your having to go thru that its awful i know iv'e ben there,i use to have migranes all the time to but i got started on ultram an it stopped them now i only have one once in awhile, thank god!!have you ever asked for ultram? an also phenergan, it really knocks it out an helps with the nausea.i hope you find a good doc, don't give up!i hope this helps some.
  6. gracie97

    gracie97 New Member

    Thanks for the suggestions.

    Yes, it is a very good idea to give doctors lists of symptoms, etc. and ASK that they be included in one's file: But you can't trust them to really put it in there, so be sure to CHECK to make sure (I've tried this already but haven't yet managed to get the material into my file).

    TRIED to get into pain management, but my health insurance nixed it because they said there wasn't enough indication that I suffer from chronic pain in my file!

    My current hope is that I can use the provisions of the HIPAA to demand corrections to my file that will result in getting adequate mentions of my pain in my records so that eventually my health insurance will allow me to see a pain specialist.

    The HIPAA is wonderful: If the doctors refuse to make the corrections, they have to at least append your appeal to your medical records! They can no longer keep what is happening to you out of your records!

    It does not feel like doctors are on my side!

  7. cureforpain

    cureforpain New Member

    I wanted to share a really nice quote I read recently, that reading your post made me think of:

    "My ideal doctor would be my Virgil, leading me through my purgatory or inferno, pointing out the sights as we go. He would resemble Oliver Sacks, the neurologist who wrote Awakenings and The Man Who Mistook His Wife for a Hat. I can imagine Dr. Sacks entering my condition, looking around at it from the inside like a benevolent landlord with a tenant, trying to see how he could make the premises more livable for me. He would mingle his daemon with mine; we would wrestle with my fate together. Inside every patient, there's a poet trying to get out. My ideal doctor would "read" poetry, my literature. He would see that my sickness has purified me, weakening my worst parts and strengthening the best."

    Anatole Broyard

    I think we all want a doctor like that. It sounds like some people here have been lucky enough to find them. Keep hope alive!

    Erica
  8. tansy

    tansy New Member

    Hi Erica,

    As I read your post I realised this is what we all need.

    My niece has been considering either medicine or speech therapy so has been visiting numerous medical schools. Half the schools she has considered now insist that one of her A levels (UK) be a humanity, it seems they are realising doctors need to be more than pure scientists.

    This will take time to filter down into the profession generally but at least it's a step in the right direction.

    Cheers

    Tansy
    [This Message was Edited on 08/04/2003]
    [This Message was Edited on 08/04/2003]
  9. TKerr

    TKerr New Member

    I would recommend that you first determine if you have FMS or Chronic Fatigue (they are hard to tell apart sometimes) because you are more likely to get help for pain if you have a definitive diagnosis and are being treated by a doc who knows about these illnesses and the pain issues.

    Find a rhuematologist who knows about FMS/CFIDS and get an examination. They are used to hearing about FMS/pain symptoms and are used to helping with the pain (at least most of them are). If you end up with one that won't help then find another one but I beleive that most who specialize in these illnesses are prepared to help with pain. They will probably either send you to a specialist or they may be able to help you themselves.

    If you have a sleep problem (usually goes with FMS)they may do a sleep study to determine if you have sleep apnea or the typical FMS/CFIDS sleep disorder. Even healthy subjects who are deprived of sleep have increased pain so working on that may be helpful.

    I don't know if this would work for you or not but I use a Thera Cane for headaches that won't go away. I don't know if what I get is a migraine but these headaches used to last for months and nothing would help. The Thera Cane works on trigger points. It is a manual device that looks like a cane and has hard nobs on it. I learned about it from a book written by a massage therapist, "The Trigger Point Therapy Workbook, Your Self=Treatment guide for pain relief", by Clair Davies. You can do a search on the internet for Thera Cane to get more info or go to amazon.com to read a review of the book.

    Another problem for those with FMS that can cause headaches is reactive hypoglycemia. I have far fewer headaches by sticking to a special diet for reactive hypoglycemia (no sugar, caffiene, refined carbs).

    There is help out there, you just need to go to the ppl who understand FMS/CFIDS to get it. You also must do some research of your own in order to solve as many problems related to your condition as you can.

    Good Luck
  10. gracie97

    gracie97 New Member

    (I'm actually not so stupid as to continue going to a doctor after I know that they aren't even helping me with accurate notes.)

    Right now my big hope is correcting my records via the provisions of HIPAA.

    Thanks for the responses anyhow.
  11. beckster

    beckster New Member

    When I get time (currently have flu) I'll post some other things you can try.

    Beckster
    [This Message was Edited on 08/05/2003]