New here have questions

Discussion in 'Fibromyalgia Main Forum' started by lollepoppup, Aug 18, 2008.

  1. lollepoppup

    lollepoppup New Member

    Hi all!
    I am new to the board as well as to the condition. I will try to make my story short. Immediatly following a cold, I began to have this nagging pain/need to pop my joints in my lower back/hips in Dec 07'. Initially I went to see a chiropracter. In the very very beginning it seemed to help some, then decreased in it's effectiveness. About 2 months inot that treatment after I spent an entire 24 hours without sleep I saught treatment with my family practitioner. He did all kinds of testing, concluded that I had arthritis in my back & degeneration in my hips. He sent me to physical therapy & put me on Vicadin. PT did nothing for me & d/t to some GI issues he would not switch me to a rx NSAID regardless of my worries with long-term narcotic use. He finally got frustrated along with me & decided to run a test for ankylosing spondylosis gene. It came back pos & I was refered out to the one & only rheumo office in my area. Due to my continued high sed rates the rheumo tried sev diff rx Nsaid's & pred , none gave me relief. About 4 weeks ago I awoke to a generalized swelling, very mild fever, & total body ache, very weak hands & knees. I could only describeit as the flu times 10!! I was robbed of all enery & just hurt. After 3 trips to the rheumo in one week, & one trip tp the ER over the weekend for pain mgt. The rheumo decides now that I have fibromyalgia. Currently his long term treatment plan for me is Fetanyl patches & muscle relaxers at bed time. I am concerned about using this for a long term treatment. I have scoured the net looking for info as he gave me none. I currently take 25 mg amitryptiline (sp?) at bed time, 0.5 mg Clonazapam at bed time, 1000mg Tylenol several times thru out the day, alternating with 800mg Ibuprofen, the fetanyl, & the flexaril twice a day.(sp)

    My questions are:
    1) is generalized swelling a symptom usually associated with Fibro?
    2) I know everyone is diff but are flares typical to last this long? I am now at 4 weeks
    3) Does anyone know of a good site to look up diet recomendtions?
    4) Are there certain triggers? I can not think of anything diff I did prior to this last "flare"
    5) Are long term uses of flexaril & fetanyl an accepted measure of long-term treatment?

    I know that was alot & if you made it this far thank you for reading my story!
  2. findmind

    findmind New Member

    Hi, and welcome!!!

    Think you ought to hang around here a bit; you'll find most of your answers by searching above by title, and others more knowledgeable than I will be along to help you, I'm sure.

    The thing that popped out at me was the 1000mg Tylenol...that much daily will sure kill your liver.

    Did you notice the short paragraphs? Your post has a better chance of being read if you keep yours short, too....most of us fall out of our chairs reading long ones, LOL!

    You can go to the word "Edit" under your username and just put in a break every few sentences, and that'll do it!

    Hope you get helpful answers from all the "experts" who live with FM on this board...

    Best to you,
  3. jenn_c

    jenn_c New Member

    I have been dx with FM for about 1 1/2 yrs. I am on 100 mcg fentynl, 450 Lyrica, 750 x3 Robaxin, 60 mg Celexa, 400 mg Celebrex, 1 mg xanax prn. So far this "cocktail" has worked the best for me. The lyrica and fentynl have been a godsend to me.
    Flare ups can last for indefinate amounts of time. Several things can set off a flare: stress( physical or emotional), weather, barometric pressure...
    I hope this helps.

  4. colorfulcolorado

    colorfulcolorado New Member

    Hello and welcome! You can take up to 4000 mg of Tylenol safely, according to doctors, but like I am going to this week is get in touch with my doc and see if she will give pain meds without the Tylenol. I would like to keep my liver thank you very much!
    I haven't had any swelling with FM but I do feel swelled sometimes(if that makes any sense)
    Everyone has their own triggers, mine is high and low pressure systems, stress(that's a big one) and sitting for long periods of time and the list could go on.
    Check around on this site-people here are very knowledgeable and they have great understanding. And no question is dumb. By the way I take Soma instead of Flexeral, it works better for me. Welcome!!
  5. dragon06

    dragon06 New Member

    Well my mom has been on Fentanyl for 5 years and narcotics for many years before that. I have been on narcotics for 4 years.

    Could there be problems from taking narcotics long term? Probably, just as there could be from taking other meds or supplements.

    I have had this my whole life and my mom has had it for about 25 years. We have both decided that we will take whatever meds or supplements that make us feel better now and give us a life now instead of worrying about the long road future. I would rather have a few good years than a lot of years in bed.

    I try to eat well but my diet isn't great.

    There are lots of triggers...a main one is stress. Also over doing what your body can handle, sitting in a bad position, weather and so on...

    Yes flexeril and Fentanyl are some of the accepted measures of long-term treatment.

    Flares can last anywhere from a few days to a few months or even longer. I don't think there is such thing as a "typical flare" they seem to vary for everyone.
  6. Crispangel66

    Crispangel66 New Member

    Sorry you have got this diagnosis but I am glad if you have had the misfortune to have this disease you have found this site.

    I have had this disease for about 14yrs and to answer your questions yes generalized swelling is usually a symptom of fibro.

    To answer your second question I have had flares that last that long or longer.

    The third one I am not really good about my diet sometimes I get sick where I can't eat at all and sometimes I can, and it is not healthy most of the time because I don't feel well and I eat what is easy to eat.

    The fourth answer is yes there are flares triggers I get but the last time I just had went in Wal-mart and I had smelled something , don't even know what it was and it made me sick I broke out in a rash also had my airway close up felt like I was going to be sick, throw up. I had gotten quite scared and still haven't come out of the flare.

    Then your fifth question I have heard people taking that but I am on Vicodin, Soma, Lyrica (which is wonderful) and that's it for pain. With my meds I worry about the tylenol in the Vicodin. But I think alot of people start out on those fentanyl & flexril but Flexril never helped me at all. On the Fentanyl I have never tried it. I would like to.

    Hopefully I have helped you somewhat. It was hard to make it through everything but I know how hard it will be starting out with fibro.

    I have it, My sister in-law has it, Her mom has it, My daughter has it but is in denial, my niece has it but is in denial too.

    You had mentioned the chiropractor well I try to do that when I am not flaring badly. I have noticed I have more trouble with my memory now after about 14yrs of having it. But I do have to try and stay more active when I can.

    Well better try and go to bed soon that is another symptom that you have more than likely heard of not being able to sleep. Best of luck to you. Crispangell
    [This Message was Edited on 08/18/2008]
  7. lollepoppup

    lollepoppup New Member

    your responses have helped me gain a little better understanding with some of this. I am sorry for the length but that was as condensed as I could get it, lol. I am a very detailed & OCD person you will soon find

    Just curious, is it unreasonable to think that the majority of the time I should still be able to live a reasonably "normal" life?

    We love to camp & take the girls with us, they are 5 & 2. They still very much "NEED" their mommy. This last weekend we went camping & I was worn out & hurting so bad that I never left the camper & came home & canceled next week's reservations.

    I can't tell you how sad it makes me to think that this is what my future is going to be reduced to. I am trying very hard to stay positive & think this is only a flare & won't last forever.
  8. katiebug61

    katiebug61 New Member

    My flares also seem to be stress and changes in weather. Right now we are having lots of rain and I can tell it.
    I was taking 350mg of Lyrica, and it caused me lots of brain fog, inablity to concentrate and weight gain. My rheumy is trying a lower dose to see if it still helps the FM, but doesn't cause the other side effects. My jury is still out on that one.
    My intense flares seem to last from 2-4 days. I hurt all the time, just have learned to ignore it.
    I have started the paperwork for FMLA on an intermittent basis. I have to protect my job from "excessive" absences. I don't think my employer is going to like it, but they are a national/international company, so my chances might be better than a small local company.
    I was diagnosed in April 08, but the more I read on here, the more I realize I've had this for much longer, just never put it all together or the symptoms were milder before !
    This is the BEST place I have found for actual help, advice and support for FM. Check back often and never give up!
  9. dragon06

    dragon06 New Member

    Well FM can be different for different people.

    I still lead a sort of life but I wouldn't call it normal by any stretch.

    However there are still many people who work and lead relatively normal lives.

    It all depends on the severity of your FM, how much it progresses over time and if you get adequate treatment or not.