Doctors & Medicine

Discussion in 'Fibromyalgia Main Forum' started by mothermarie46, Sep 9, 2009.

  1. mothermarie46

    mothermarie46 New Member

    I've had fibromyaglia for 20 yrs and the last 4 years I have gotten progressively worse with pain. I have tried all of the meds, ultram, cymbalta, before what I'm on now. I seem to have finally gotten the pain under control with vicodin, diclofen, trigger point injections and flexeril. I am working with a pain specialist but my tension migraines have been really bad. So I went to a neurologist last week and he wants me off all the meds. I had asked him what I was going to do about the pain but I got the feeling that maybe he didn't really believe in fibro. Sure I am able to walk in now but he didn't see me in the winter when I hobbled around and just cried. My quality of life was not very high. So I what I'm asking is has anyone else dealt with this? I started to wean down my meds and was back to what I was before. Any feed back?
  2. jole

    jole Member

    For me, if I have to take meds to feel somewhat human, I will. My doc won't give me anything stronger than Ultram, which I'm sure you know barely takes the edge off the pain, but if I were offered something stronger you can bet I'd take it!!!

    I want to have a be able to do feel a little "normal". I know it also means knowing our limits, etc. but a good day now and then to me is worth perhaps shortening my life a year or two due to the side effects. Being unable to walk without terrible pain is not enjoyable, to say the least.

    I do believe in alternative medicine also, and use some of those too. Tension migraines are horrid. My daughter has them, as do I, and she had to get off all her meds in order to find out what would work for her. She had a horrid experience with this...and the new med she was put on didn't work, so is going through it again. I hope they find something for her. I've given up for me after so many years.

    I also hope you find something that works for you. I know if you get off your meds for awhile it will be a terrible time, but if you can find something to help your migraines it'll be worth it in the long run. Then you can get back on your other meds again. Good luck....Jole
  3. Janalynn

    Janalynn New Member

    What is your Dr's reasoning for this? Whether he sees you walking in your office okay or not is beside the point. He needs to understand the quality of lack of, life you have.

    Is he the one who prescribes your meds? I assume its your pain specialist. If you want to give it a try, go for it, but going from a lot of pain and needing meds to nothing changing then going off doens't make much sense to me.

    Sorry, but I haven't heard that Grapeseed Extract does anything for the pain associated with Fibro. I talked to my both of my Dr.s about it. and they are very open to supplements etc.
  4. HarleyRidingGal

    HarleyRidingGal New Member

    There are some great ideas about supplements, etc. on this thread but my point in writing this is to address, once again, the fact that some/most (not sure which) doctors who are still not able to deal with chronic pain. The first thought, to them, perhaps is the patient is a drug seeker and second is since they don't experience the horrible 24/7 pain, they have no sympathy or empathy towards those that do.

    If you believe that your neuro doesn't really believe in FM, your instincts are more than likely correct.

    I'm sorry to say that at this stage, the alternative treatments are not working for me like they used to and I'm on daily pain medication.

    Since you've had FM for such a long time and you felt that finally your pain was getting manageable with pain meds and injections, take caution in listening to the non-prescribing neuro.

    I just get so frustrated sometimes at the medical community and the fact that they're either not open to eastern medicine or alternative treatments of any kind but their not willing to prescribe pain medications to those that need them.

    I've said this before on another thread but if it were the doctor (in your case the neuro) that was experiencing just one day of your pain, he or she would be first in line, crying like a baby, not knowing who amongst their colleagues, would give them something for pain relief.

    I'm not sure about taking yourself off all the meds without consulting your pain doctor is the answer for everyone but I hope it does work for you. Truly.

    I would definitely at least call your pain specialist though to keep him/her in the loop about what the neuro has asked you to do. It very well could be that the neuro wants to find out if it was one of your meds that caused or increased the headaches and is looking for the root cause.

    My heart goes to you about the winter time pain and the inability to walk. Plus the fact that it's so bad for you that you cry. {{{{{{hugs}}}}}}.

    Keep us all posted on how you are doing.
  5. gapsych

    gapsych New Member

    Pain, pain, go away.
    Don't come back another day!!

    I know how you feel.

    If aspirin or alt. medications for people work, that is great. However, they can not be experiencing the amount of pain that some of us are. It is a matter of quality of life!!.

    Several times I have bumped up a post called "Pain Damages Brain" I will try and find it or I think if you google the title it comes right up, since we have some newbies.

    I have learned not to feel guilty about taking meds. For right now the ultram has been wonderful, however I have been having some issues with breakthrough pain. Provigil has helped my energy.

    Last year, I did not realize I was only taking half of my AD and the pain plus depression started coming back. Mostly the pain. Once I was back on my original dosage just the ultram helped and the depression other than situational was gone.

    Have you been on any other ADs besides Cymbalta. I can not tolerate Cymbalta or any other SSNIs.

    My daughter has had migraines for years. It took a long time for her to be helped by meds. I believe she takes Topomax and it really works as long as she takes it at the first hint of pain. This is compared to when she was in her teens and we would have to take her to the emergency room to get a shot and would knock her out for two days. She is now 33, whoa, where did the time pass. I must have been 10 when I had her!!

    Definitely call you pain specialist.

    I am rambling here. Not the first time. Probably not the last, : D

  6. loldershaw

    loldershaw Member

    I have to wonder if he thinks he cannot perform an adequate neuro exam based on the meds you are on, so he wants you off them for a while? I certainly would ask him the rationale for taking you off. Sometimes all of our meds really boggled certain docs minds, and I can see that perhaps he is trying to determine the effect of all the meds. Some neurologists seem to think they don't have to offer you much in explanation, just give orders......I would ask, and you also really need a plan I think for reduce them properly.
    Hang in there and don't be afraid to ask questions.
    Hugs, Linda
  7. FMsaddenedspirit

    FMsaddenedspirit New Member

    Hi Marie,
    I had to chime in on this one for you .... I am sorry you are going through this. truly I am .

    I saw a few neurologist regarding migraines, one I went to for over a year.. I believe what he is thinking is this ::; the TYLENOL in your pain meds can cause what they call a rebound migraine, even if you only take a small amount every day ...the 2nd neurologist I saw for a 2nd Opinion had also asked me to come off everything. and did not seem to care about the pain issues ... I did this and lasted about 4 days. before I gave in and started back on my pain meds... at the same time I went to my Rheumy. and we did a MRI of my neck.. as the Neuro never did my neck only my brain.. . well low and behold... the Migraines are really caused by dick disease in my neck and a bulging disk .. Not rebound from the Tylenol in my pain meds...

    I advise to find a Different Doc.. that will look at the whole picture and not just the migraines.
    just my thought. as you sound like me.. there is now way I would have any type of real life without pain Meds. I am in just to much pain...

    I wish you luck and pray that you find the right Doc for you .
    Take care.

  8. mothermarie46

    mothermarie46 New Member

    Thanks for the suggestion. It was so simple but I didn't even think of that. I knew that something wasn't right but I didn't know where to turn. I know when I get in a dither I can't think. The pain spec. said to stay on the regime that we had discussed and come up with. I've been through all the detox and supps, I do yoga and eat healthy. This is what's helping me at this time. I'm very careful taking them because I don't need any other problems. Thanks again.
  9. mothermarie46

    mothermarie46 New Member

    I've had migraines since I was 11 yrs old. I'm now 48 and have always had to be on meds to prevent them. I'm on Topomax now after being on Neurontin. Aug I had 16 headaches. I've done Ocipital nerve blocks. I have a some herniated neck disk and have done the injections but I have to wait til next year for more. He wants to try & give me one himself. I have a MRI sched and then a follow up with him but I will definitely be standing my ground on keeping control of my pain with my other Dr. Thanks. Blessings, Marie
  10. gapsych

    gapsych New Member

    Gosh darn it. I was just about ready to post to Mothermarie.

    I wanted to tell her that if her migraines started at 11 around puberty, that the migraine MAY stop when she hits menopause. That is how my MIL was and my daughter's neurologist said the same thing. This was also before some of the new meds.

    Well, maybe the information will help someone else.


    ETA Thanks Jean.

    [This Message was Edited on 09/18/2010]