Hi, just diagnosed wtih Fibro

Discussion in 'Fibromyalgia Main Forum' started by Neicee99, Jun 18, 2006.

  1. Neicee99

    Neicee99 New Member

    Hi Everyone,
    I was just diagnosed with fibromyalgia on June 12th. I was also diagnosed with relapsing polychondritis and Lupus two years ago, and then this past week besides being diagnosed with fibro, I was told I had irritable bowel syndrome and errosions on my stomach and small intestines from anti-inflammatory meds I have been on for 2 years. So basically, this week has been a bit overwhelming for me. I have been reading your postings for the past 30 minutes and they are very informative. As a "newbee" to the fibro world, is there any advice that I could get regarding medication for the pain? My doctor started me on nortriptoline(I know I spelled that wrong)20mg a night. So far, not working.

    I find this pain so tiring and basically to be a pain in the butt. I have 3 kids and a hubby that travels quite a bit and it all just adds to the issues.

    Thanks for reading.

  2. kb101

    kb101 New Member

    My rheumatologist prescribes some specifics for my pain.
    I get a medium dose of Neurontin and Tramadol with can be taken with tylenol to make it more effective.
    It took me about a week to get used to Neurontin, because in the beginning it wipes you out and all you want to do is sleep. But after a week or so, that goes away.
    It interferes with the way the brain receives pain messages and one needs to stick with the regular dosing or it stops working.
    For really bad days I skip the tramadol and replace it with Vicoden because it works better for severe pain, although I am starting to need the Vicoden less and less.
    I also get Remicade treatments( for another autoimmune disorder) and that seems to have some bearing on my FM pain, although clinically they say it does not.
    I've been on this combo of meds for a couple of years now, and my days are getting better.
    The better days are more promising and the bad days are less debilitating. Although they still take the wind out of me, I consider the lessening of pain to be a victory in my treatment program.
    That's my personal list that is working well for me.

    [This Message was Edited on 06/18/2006]
  3. Neicee99

    Neicee99 New Member

    Thank you so much. It is a great website

  4. Neicee99

    Neicee99 New Member

    Thank you KB for sharing your treatment plan. I will bring some of those suggestions up to my doctor if the pain does not get any better by my next appt.

    If you don't mind me asking, what other autoimmune disease are you being treated for?

  5. kirschbaum26

    kirschbaum26 New Member

    Dear Neicee99:

    Welcome. Sorry we have to "meet" this way.

    Not sure what (if any) meds you are taking for your lupus. Are you taking prednisone?

    I like my PCP, who dx with fibro 5 years ago, but I think I have had it since I was a child. She suggested magnesium, calcium and zinc supplements. She also subscribes flexeril. I take it at bed time and it allows me to sleep for 2-4 hours at a time. Prior to taking flexeril, I would wake up every 40 minutes and have to get out of bed and take a lap around the house.

    I also see a rheumatologist (I have RA as well as FMS, IBS, DDD, etc). I am currently taking Humira for the RA, but have taken ENBREL. I cannot take methotrexate or plaquenil at this time, due to liver problems. I also take the max daily dose of advil (2300 mg) and a 650 mg extended release dose of tylenol.

    I try to avoid caffeine, and also try to walk and or swim for 1 hour per day. Helps with stiffness as well as range of motion.

    Good luck to you, and I am sure that many different people will tell you what has worked for them. They might also tell you what has not worked, but hopefully you will try just about anything (within reason) to find something that works for you.

    Good luck and welcome.

  6. kb101

    kb101 New Member

    Neicee, I have Fibromyalgia, Psoriatic Arthritis, Pelvic
    Adhesions and Gastroparesis.
  7. jenni4736

    jenni4736 New Member

    Hello Sweetie,

    I am a wife and mom of three too. This board has very educated people who are VERY willing to share. I think you will find this to be a great place to come, especially when you don't understand when something like a new symptom pops up...or maybe when you want to know about a particuliar medication.

    The Noritriptiline is one that a lot are started on. For me, I was too groggy in the mornings and I hated it myself because I could not wake up in the mornings. I felt like I was drugged out or drunk or something. I know it does work for some and I hope you get some sleep with it.

    I have had FM for over 12 years. I also have CFS and I am on the verge of a Lupus diagnosis (apparently I did it backwards than most). What I find the hardest to deal with managing the kids is the fatigue. My five years old still has to take a nap, only because I have to.

    The sleep isssue are a HUGE part of managing FM. If this med doesn't work, don't be afraid to try a different one. Sometimes it takes a few to get the right one for you. I started taking Cymbalta (for depression) but it did help me sleep more soundly for awhile. I later added Lunesta which has been great. It works really fast.

    This bag of illness can be over whelming. I understand how you feel. Just stay strong. Illness is only ONE part of who you are. It is not the sum total of you as a woman. Swim, walk, do yoga...anything to keep you moving will help give you long term strength to keep moving.

    I wish you strength, sleep, and peace.

  8. snooker11

    snooker11 New Member

    I agree with you: IT IS A PAIN IN THE BUTT. I too was put on Nortriptiline initially. However, it didn't really help until I went up to 35 mg. Also, I take it with some other meds: 37.5 mg. Effexor, .25 Klonopin, 5 mg Ambien. This "cocktail" seems to help. I would say I am 70% better. Might take a while for you to find the combo that works best. hang in there!!

  9. Neicee99

    Neicee99 New Member

    Hi Ingrid
    I have been on different courses of prednisone over the past 2.5 years however I am no longer able to take it. I have such a bad reaction that the doctors will no longer give it to me. I seem to blow up over night and the weight just piles on so quickly. I am a mess when I am on it. However, it is a miracle drug. Right now I am just trying to deal with all of the different diseases and trying to get my act together. My family is wonderful and I am blessed to have them. Thanks for your response. I will definitely keep a log of everyones suggestions as to what helped them.
  10. Neicee99

    Neicee99 New Member


    thanks so much for your reply. I wish my almost 5 year old would nap. She'll be five in 5 days and is very excited about that. I am having such a tough time sleeping. I cannot take a sleeping aid when hubby is out of town because then I can't be alert enough for the kids if they need me during the night. It's a catch 22. I am keeping a log with different suggestions from everyone so I know what to bring up to my rheumy.

    Thanks again
  11. Neicee99

    Neicee99 New Member

    I am only on 20mg of nortriptilyne(sp?) and I don't feel any benefit from it yet. Of course I have only been on it for 8 days. I guess patience is not one of my strongest assets. Thanks so much for your reply. I will keep reading the postings to get as much info as I can.
  12. snooker11

    snooker11 New Member

    also, one of the most important things to do is to excercise in some sort of way every day. This will boost your body's endorphins and will help fight the pain. start slowly - walking, gentle yoga, swimming, and gradually work your way up to more intense workouts where your heart is beating fast and you're sweating i.e elliptical, running, swimming fast, vinyasa yoga etc... Once you get up to that, you'll realize what an impact that will have on your pain levels. Also, make sure to rest when you need to, but you will have to push yourself sometimes. listen to your body.

  13. puddin827

    puddin827 New Member

    give the medication time to work. sometimes it takes a few weeks for things to get going
  14. lovethesun

    lovethesun New Member

    It is a pretty nice board.You will love it.I like my neurontin too.Iy targets nerve pain.The doctor would give you something else for the Fibro pain.Linda
  15. jenni4736

    jenni4736 New Member

    I understand sweetie!

    I do keep the baby monitor on when my hubbie is out of town. Thankfully for me, it doesn't happen often.

    My youngest just comes and gets into bed if he wakes up. In that sense I am lucky. He doesn't egt into things usually.

    Keep the knives, scissors, and chemicals in a place that can not be gotten. I am sure you do that already, but when they get bigger, sometimes we forget.

    I have been taking Cymbalta and Lunesta and those are a good combination to help with pain and sleep. The noratriptaline didn't work for me either. It knocked me out but I felt "drugged and drunk" the next day.

    Different medicines effect us all different. Give it some time, if it doesn't help, try a different one.

    Hang tight ...and come back when you need a break. We will be here for you.

  16. bcollier

    bcollier New Member

    Hi Everyone:

    Just discovered this board and have already learned a great deal from reading the past postings. It's a relief to know that there are others dealing with this "pain in the butt" (literally). Neicee, the best suggestion the rheummy told me was to exercise even if I have to force myself. There are days I can barely move but it does help to exercise. I do Yoga and Pilates at least three times a week and try and walk every day. Good luck and thanks for the other information on meds, etc. from everyone writing.
  17. baanders

    baanders New Member

    I am very sorry for your bad news. It takes a good 3 weeks for the nortriptyline to work it's best. I hope it at least helps you to sleep. Good sleep and stress reduction are probably 2 of the best things that you can do. Plus pray it will go away :)

    I'm happy for you that you have 3 children. This may sound strange, but for me it isn't, because I want a baby. So please, please look at it from the standpoint that you have 3 blessings that some of us hope and pray for. I am sure, though, that having 3 children is stressful...but I'm thinking about all of the joys, too. Is there anyone that you know that could do some grocery shopping? Please make meals that are simple. Please don't feel guilty if you can't do everything in 1 day.

  18. Neicee99

    Neicee99 New Member

    Thanks for your reply. My entire family, as well as my husbands family, all live within 10 minutes of us so I have tons of help which is so wonderful. I am very fortunate to have that. I hope my posting didn't sound like my kids are a hinderance to me because that is not what I meant. I hope it didn't sound that way. Oops if it did! My kids are the most wonderful girls you could ever ask for. My youngest turned 5 today and we had a wonderful party and she received a new Barbie bike. Very exciting. I do thank God for my 3 blessings all the time. Of course there are those days when they are trying but I wouldn't trade them for anything in the world. They are my life, well, of course my hubby too. Well, off to pop an ambien and catch some zzzzzzzz's.

    Take care and big hugs to you

  19. baanders

    baanders New Member

    Niecee, I am very happy for you~! It did not come across at all that you resented your children...I was just telling you how badly I want a baby. It's just a big issue of mine. And I know that you are thankful that you have children.

    Now lets focus on getting you out of pain and reducing your stress level! You are dealing with several painful illnesses. I am sorry. Have you ever tried tramadol? There is now an extended release form of it (brand new). It acts like a narcotic, but one does not build tolerence, like other narcotics. Lyrica is a good anti-seizure (but pain-killing) drug with few side effects. I pray a lot because I believe God is the Great Physician who can heal us of these "incurable" ailments. I hope you are strong in the faith.

    God bless you and best wishes...
  20. Neicee99

    Neicee99 New Member

    Thanks so much for your info. I'm sorry it took so long to reply but I have 2 other support website for my other autoimmune diseases that I completely forgot about this one. Sorry about that. I am going to talk to my rheumy on the 7th of august about a different pain killer. I take Vicodin like one or 2 times a day and it works but the pain returns like within 4 hours. There must be something that last a bit longer. I will mention the tramadol and the neurontin.

    I was raised a catholic, our three children have been brought up in the catholic faith but for the past 2.5 years, I have slipped away from the church. I did go to a meeting at the church with my oldest daughter on Thursday about her upcoming confirmation. It was nice to talk to the woman in charge and it was so peaceful there. We have a new priest at our church and he is supposed to be wonderful. I am going to mass this Sunday. When I am there, there is some type of tranquility that comes over me. I don't know what it is but I just feel good when I am there. Do you know what I mean?

    Anyway, thanks for the info and have a wonderful weekend.

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