Just diagnosed with fibro and now have increased pain

Discussion in 'Fibromyalgia Main Forum' started by lorilinay, Aug 27, 2005.

  1. lorilinay

    lorilinay New Member

    I posted this over on the arthritis board also, but thought someone here might help me too.

    I have been treated for psoriatic arthritis for years, then a new rheumy told me she thought I had fibromyalgia. I'd never been told this before...Up until about 2 weeks ago, my GP was treating me. But once I started to complain me, she sent me to a rheumatologist..

    Here is what I posted on the other board...

    After switching to the pre-filled syringes of Enbrel, I started to feel some pain returning. (2 months ago) 12 days ago, I went to a rheumy that put me back on Methotrexate. She also gave me 30 vicodin to last ....a MONTH. Day by day the pain has gotten worse. Needless to say, the vicodin is gone. I'm hesitant to call and tell her this for fear she will never give it to me again as I took more that the bottle said I should. I'm having pain (so much that I'm in tears right now) in places I've never had it before. I've tried Aleve, Motrin, Tylenol, and am getting NO relief. On Friday I talked to the nurse and told her my pain was nearly unbearable but was just told I Needed to be patient until the methotrexate started to work.

    Has anyone ever experienced this recurrance in paid when a new med is introduced?

    I guess my biggest concern is being put on the infamous "drug list". I've had quite a few health problems this year and have been prescribed a good amount of narcotics.

    And my next biggest concern is going insane from the pain.

    Thanks for letting me whine and vent.
  2. heartinheaven

    heartinheaven New Member

    is send you my thoughts and prayers. I hope you feel better soon.

    Blessings to you,

    H Michael
  3. motherof4

    motherof4 New Member

    Lorilinay,

    I had EBV four years ago with fibromyalgia and chronic fatigue syndrome. It took lots of pain meds to get me through. That lasted six months. Three months ago I started noticing the symptoms coming back. My Dr. did some lab work and sure enough my EBV titer was up, and then the fibro and CFS started. I tried everything for the pain. I did not want to use pain killers because I am in recovery now and doing great. I was hurting so bad that I could not do it anymore--I couldn't live like that again.

    My Dr. put me on Duragesic Patch (fentanyl) 75 mcg and Lortab 10/325 one every 8 hours for breakthrough pain. We experimented with different dosages and meds and this is the combo that has worked for me. I still have 4/10 pain, but I need to have some pain so I know I am still out of remission. Once the pain starts eleviating, I will titrate down on the meds. I also take an antidepressant, Lexapro and a benzo, Klonopin for sleep and my panic disorder. I take lots of herbal supplements and vitamins and walk alot.

    We just purchased a memory foam mattress (3 inch thick) and it is wonderful. I slept better last night than I have in months. I still wake up stiff and in tears some mornings. I wish the best to you. Let me know if there is any other info I can help with. Barbara
  4. lorilinay

    lorilinay New Member

    Thank you so much fro your replies. It was a long and rough night.

    Fentynyl scares the crap out of me. I was given it after my hysterectomy this Spring and was hallucinating BIG TIME. Is the patch different than an IV therapy? Perhaps at a lower dose I would have that horrible side effect. (I was seeing dead people walking around my hospital room, and babies flying in circles over my head)

    I'm going to try and get over to my moms house today. She has a big soaking tub. HOpefully that will at least loosen me up.

    Through all of this, oddly enough, I've never had swelling. But lo and behold, I wake up this morning with sausage fingers!

    Gee, guess I'm still whining....sorry.

    Do you think if I went into urgent care (It's Sunday) and told them my story and that I'm willing to try ANYTHING to get some relief, they'd think I was a head case?
  5. Bambi

    Bambi New Member

    you are a head case, they will think you are an addict drug seeking. I have had a pain specialist for several years and that was the first thing I had to agree to, NOT to go to the ER or Urgent Care for pain except in the case of broken bones, new or
    unusual headaches or some pain unrelated to the FM. You can end up black listed and unable to get ANY doctor to treat you for your pain.

    Try ice and heat alternately, warm bath with Epsom Salts and Peroxide followed by a rub on linament of some kind, stay down and quiet, pray or
    listen to quiet music (sometimes very loud fast music helps me also but I always then go down and down to the
    slow quiet), if you have someone to massage the worst areas do that, try
    the over the counter meds but be very careful not to mix even one drink of
    alcohol with Tylenol which can cause
    liver damage. I wouldn't take another
    NSAID if they paid me, but if you don't have any stomach or ulcer problems try the Iburprophen or aspirin, but stay carefully within the dosing advice. Just try to get through until you can see your doctor and then tell them what you went through exactly. The pain journal is an excellent idea, helps your dr understand and is backup for them if they decide to prescribe stronger pain meds for you. Hang in there!
  6. backporchrags

    backporchrags New Member

    that you should be keeping a pain journal. list all of the OTC remedies you have tried, vitamins, exersize schedule, ( even house work etc) work load. Everything that affects your pain level.
    When the doctors see, written down, what your daily life is like and what lengths you have gone to to relieve the pain they are less likely to put you in the "addict" catagory.
    My mother takes Methotrexate for her arthritis. She had to go off of it while recovering from surgery and it did take a couple of weeks to start working again. How long have you been on it? I would think that after 2 weeks it would begin to work for you if it ever will.
    The health care systems presently are conveluted. Docs are afraid of creating addicts more because of the risk of being sued. The medical board brings thousands of doctors a year under scrutiny for their rx history. My step father is an Oncologist and Hemotologist. He has been made to explain to the board about his rx history. Even treating terminal cancer patients is no pass from the scrutiny of the medical board. So even if you are dying they worry more about creating addicts than easing pain. It sucks!
    I hope you find relief soon!
    Hugs,
    A
  7. lorilinay

    lorilinay New Member

    Or should I say I tried to. Of course since it is Sunday I got voice mail. It said to "Press 2" if you wanted to have the dr. paged. "Press 3" if you want to leave a message. So I start with 2. And guess what? It went right back to the beginning of the recording. so I hang up, tried pressing 3...SAME FREAKING THING!!

    So I got in my car and DID go to urgent care. I brought my meds, I told them what happened with the phone. I told them to go ahead and try, but that I need SOMETHING to get me throught until the next morning. The dr. reluctantly prescribed me 3 vicodin. I was more than happy with that. She said that normally they don't, but since I was obviously in real pain, and wasn't looking for more than that, she would...

    But WWWAAAAIIIIIITTTTTT...I get to the pharmacy and THEY wouldn't fill it. Since I already have a current prescription that shouldn't have run out, they wouldn't do it.

    So I went BACK to urgent care. The doctor came out and said I never TOLD her I had a prescription. Apparently she didn't see what was in her hand. (She literally READ the bottle while I was sitting there) She gave me a new prescription for Clinoril. I've never taken that. Have any of you?

    As long as it at least takes the edge off, I'll be thrilled. I took it about 40 minutes ago.

    I've started my pain and activity journal. I so appreciate all of your great ideas and support.