Head Injury Caused FM/CFIDS and high tolerance to pain medication

Discussion in 'Fibromyalgia Main Forum' started by Dented, May 17, 2006.

  1. Dented

    Dented New Member

    Hi All,
    I am new to the board and new to the diagnosis of FM and CFIDS. Since being diagnosed nearly a month ago, I have done a ton a research and tried to do whatever possible to adjust my life accordingly.

    I guess what compelled me to post here is the frustration I am having with my new doc. I was forced to change doctors after 10 years because my doctor does not believe in FM or CFIDS and claims they are the "lazy doctor's diagnosis". Of course, I new he was wrong and therefore found a new doc who exhausted every test possible (along with an Endocrinologist) and they arrived at the diagnosis together.

    The challenge I am having now is the fact that after brain surgery 10 years ago to remove a tumor and 7 subsequent concussions, I have just enough damage which causes me to have a high tolerance to pain medications. So, when asking my doctor for the appropriate amount of pain medication just to get me through the day, I am faced with that judgmental look like I am a junkie or something (even though I have my medical records and family member with me at the appointment to help prove this fact).

    I know that most people with FM actually are more sensitive to the effects of medications and so I am assuming I am the exception to the rule. So, I guess what I am asking is this: Can anyone understand/relate to what I am going through and does anyone have any suggestions? I am going insane with the pain and the inability to control it.

    Any suggestions or comments are greatly appreciated.
  2. mom4three

    mom4three New Member

    Too have a high tolerance to pain medication.
    I cannot get by on small doses.

    My Dr prescribed the fentanyl patch and it was so great until I developed blisters from the patch so now am on Oxycontin and taking ultram with it.

    I wish you great luck and hope your Dr can understand you are just trying to stop the pain.

  3. Dented

    Dented New Member

    Thanks Tracy for the quick reply. I am trying to understand what my options are because my new doc does not like to prescribe anything more than 5/500 Lortab. Unfortunately, I need at least 3 of those at a time to get even a little relief.

    She is concerned about addiction (eventhough I have never had such a problem) and also the other side effects caused by such meds. I completely appreciate her concern, but she can't see that if it comes down to it, I rather have quality of life than quantity of life.

    I suppose I am just a little emotional about it today since I am in a lot of pain and am really tired of missing out on my son's life because of the extreme pain or fatigue.

    I also have a doctor's appointment on Friday and I want to go in feeling somewhat educated.

    Any suggestions or comments are greatly appreciated

  4. lovethesun

    lovethesun New Member

    I don't have any answers,I just wanted to say Hi,Linda
  5. kriskwon

    kriskwon New Member

    This disease sucks, huh? I would definetly asked your doctor for maybe something like slow release oxycodone. I take 1 (20 mg) every 12 hours. I am also allowed 2 percodan for when the pain is too intense.

    You know what I did? My little country Dr is not really familar with this, so I printed out posts from here. It showed him what other doctors are prescribing, and we fiddled around with differnt stuff until we found a working combination.

    I also told him a long time ago (looking him right in the eye), "Look, I didn't ask for this, it's not my fault I feel so bad."
  6. Dented

    Dented New Member

    Thanks everyone for your comments and suggestions. I really appreciate it.

    I am sure you all can relate to the daily frustrations FM brings.

    Since attending a public awareness meeting earlier this month and listening to the presenting physician (who unfortunately is not a provider on my insurance plan- none of the forerunning researchers in FM in Utah are on my insurance. But, that's a whole other complaint/gripe of mine) it is clear that they at least now know what causes FM and CFIDS. They have identified the malfunctioning neurotransmitters in the central nervous system. There are four areas that are affected. Now, it is just about doing the research to find what medications treat the malfunctions the best. But, again, more research is needed and that takes time. In the meantime, we all just need to find what helps us the best to cope with the symptoms.

    Also, as I already mentioned, it has been difficult to find a doctor on my insurance plan who is educated about FM, let alone aware of the most current FM research findings.

    So, the other day, I took it upon myself to enroll (online at OFFERUtah.org) in the OFFER Utah FM/CFIDS research program which is run by Dr. Lucinda Bateman. If you participate in the program, you receive the most up to date, cutting edge treatments at no cost, plus you are under the care and supervision of one of the best FM/CFIDS doctors in Utah. I have yet to hear from OFFER (the office is run by volunteers), but can't wait to become an active participant. Anything to help the cause!!

  7. Dented

    Dented New Member

    Hey K!

    Thank you for your suggestion and advice. I know my doc is receptive to suggestions and supports me when I do internet research, so your approach just may be the ticket. THANKS!

    And, yes, this disease does SUCK! And, NO, I didn't ask for it either. :)

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