Part 2 My Pain Management

Discussion in 'Fibromyalgia Main Forum' started by TinaJones, Mar 30, 2007.

  1. TinaJones

    TinaJones New Member

    Hey everybody,

    Just wrote my long saga with my health ups-and-downs (thinkg the title is "My LONG Journey). The only shining light in this thing is that my pain management is the ONLY thing is being properly handled (in my opinion). I've found the most awesome doctor in Aurora, Colorado (east of Denver?...sorry new to the area...still trying to find my way around here).
    Anyway, after trial and error of EVERY medicine known to meds are as follows (please keep in mind that I have a high tolerance for meds..):

    Avinza (24 hour morphine sulfate, similar to Kadian...but lasts longer) 360mg per day, with another 60 to 120mg to be used on the very bad days.

    Actiq (oral fentanyl "lollipop") I can take up to 2 1200mcgs
    per day... This is the FIRST medicine in 3 years that actually gives me some relief...not much...but some. It wears off after about an hour - but when you are flaring - an hour's relief is HEAVEN.

    That's it on actual Pain Meds. I'm also taking Effexor, Xanax (just when I'm feeling really anxious), Phenergan (for nausea and vomiting, etc). I think that's it.

    Some of you new that I was going in for the Pain Pump...because NOTHING was working, and they were seeming to take my meds up higher and higher. My plan is still to have the Pain Pump implanted IF I need it in a couple of months. For now, though, I need to figure out this whole Mayo Clinic thing - and what I'm going to do about that.

    All of this - while trying to be a half-decent parent to six little boys. They say God will never give you more than you can handle....but, as strong as a Christian that I am....I'm just wondering how really much more that I can take.

    Love you guys. Thanks for listening....and caring....Tina
  2. shelby319

    shelby319 New Member

    It's about time Tina, as I've looked everyday for a post from you to no avail!!
    I got so excited seeing this one post, I haven't read your other post yet, so I don't know what it says. But not to worry, I'll jump right on it!!LOL!!

    So, this treatment is working out alright for you? That sounds sooo good and this is without the pain pump, right? Are you able to function better now or is any of these drugs causing alot of drowsiness? Do you feel their working quite well, so maybe you won't have to have the pump put in? This sounds great, as by having the pump inserted would be invasive enough and you don't need any added stress or pain.

    I have so much I want to ask you and give you my thoughts and prayers, but I probably should go back and read your long journey post first and then come back and chat more.

    But as you said, your faith is being challenged right now, and God won't give you more than you can handle. It is so true though, I know myself from what I've been through.

    You just have to take care of yourself and that beautiful family, and remember they are there for you for a reason. God gave you these beautiful six boys for a reason along with a wonderful husband to sustain you in your journey.

    And you have many here on this board, including myself to help you through your ordeal and to help you deal with life...even if you just see the love in the eyes of your 6 lovely boys, you will understand how precious life is and to fight hard to live a semi-normal form of living to the fullest!!

    My heart goes out to you in your time of need, so please take care of yourself now and get better so we can laugh again and enjoy the simple pleasures of life. Its so precious what life has to offer us through this difficult time, and yet we continue for the sake of others.

    I'm so happy you are back and I'll write more later after I read your other post and in the meantime, you are in my prayers daily Tina!

    Sparkle and shine brightly,
  3. TinaJones

    TinaJones New Member


    Thanks for your post. You are actually right - Actiq DOES cause tooth decay. You have to be vigilant about brushing your teeth about using one. Not that I don't brush my teeth regularly - but, on top of everything else - I can't be remembering to brush my teeth EVERY time I use my meds.

    Sooooo, the next time I go to the Pain Doc (3 weeks) - they said we'd talk about Fentora. It's a new version of the oral fentanyl, but it's (I guess) a small, dissolvable pill that's placed on the side of the cheek and it breaks up much faster than the Aciq (lollipop). I most likely will change to this....

    Thanks for the encouragement re: the kids. I can't believe how quickly they DO grow up. That's the reason for my wanting to get at least slightly better. My older two remember me when I was healthier and able to do stuff. My younger four only remember me as being sick. It's just tough.

    Thanks again for the response, and will be writing more soon. Thanks, Tina
  4. TinaJones

    TinaJones New Member

    Shelby and Elaine....

    I want to make sure you both see this post. I don't consider it Off-Topic because it definitely relates to my illness and the help you've give me FOR my illness.

    Elaine - I read all of your messages. Thank you for taking the time to write all of that stuff down. Thank you for caring about me. Those words seem so simple....but please know that they mean more than I could EVER express over a computer :) I got on here one night, late, - and your very HONEST post was one of the only things I read. I had tears running down my face. What it made me realize that we read so many posts here from people - and we just don't realize what so many of us have been through. All I can say is that I'm glad you are here and pulled through everything. And maybe the purpose of that was for you to go on and impact other people's lives - because you sure have on mine. Anyway, thank you sweetie...for blessing me in such a HUGE way.

    Shelby, There would be so many times when I was in the hospital or here at home (but in bed) that I would think "Boy, I bet she thinks she've all abadoned her! Did you ever hear anything back from RedHeadEMT? That was kind of weird, wasn't it? But things in life come up - that's the hard part of the computer is that you make relationships with people and then you are just not sure what hapened!

    Anyway, I miss you; I think of you often. There were WAY too many posts to read through all of them since I've been gone. But how is your pain? Is your regular doctor the one refilling your medications? I hope that has all worked out. How are you feeling? I hope you are having more good days than bad. There's so much more that I want to write, to catch up and just see how you are doing.

    But Bobby (husband) has the kids at hockey and the house is quiet so I'm going to go rest for a few minutes. But I want to tell you both (and others) that I REALLY appreciate you taking the time and efforts to encourage me, think about me - and basically just making me feel strong enough to not give up. Not that that is even an option, but there are times where I want to crawl in bed, but the covers over my head and just hide. You are giving me the strength to as least function as much as possible around here. And, for that, I REALLY appreciate you and this board.

    Blessings to you all....Tina (Jones)
  5. shelby319

    shelby319 New Member

    Hi Tina~~

    I hope your feeling a little better today as I see in your other post you went to lay down for a few minutes. But I didn't want you to think I wasn't here for you!!

    I did write back in your personal(Shelby) post to me last night, and I wrote a lovely long post too, but now its gone somewhere and I can't find it!!

    This has happened before, so maybe the board considers it should be under the chat board or something, but I haven't checked there yet.

    But I did put where I was sending you a HUGE HUG with much love and support for a full recovery very soon! I'm sooo sorry we can't find the post now though. But you are in my thoughts today and wishing all the best!!

    I'll get back to you later though and give you an update on me, but at the moment I'm more concerned about you and how your feeling. There's no comparison to who needs the most support right not and it isn't me my dear!!!LOL!!

    Please do take each day nice and slow and recover at your own pace if you can. Take your time also with posting so you can get some well deserved rest seeing nobody is going anywhere soon.

    I will be back as I have some errands to try to do and pick up my meds at the pharmacy. If I don't I will be out by tomorrow morning and we don't want that now do we?/!! Yes, my Dr. is still the one handling my pain meds and in fact I see him next week as I'm having a bit of a flare up where my back has gone into spasms, but I think its just my sciatica bothering me. No big deal!!

    I'll keep my prayers coming that each new day brings a more sparkling brighter day, and you start to feel much better very soon!!

    You also are in my thoughts daily my friend, so please take care of yourself and rest and I'll be back later to check in on you, okie dokie?/!! Hehehehehe
    Huge gentle hugs,

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