Discussion in 'Fibromyalgia Main Forum' started by Treca, May 18, 2006.

  1. Treca

    Treca New Member

    The doctors always talk about you may go into remission of FM. Of course they say that not everyone is going to get one or however many.

    So I'm curious to know if anyone on this board has had a remission and if so what was the feeling with your experience? Also, how long did the remission last? Or is the remission still going on?

    After years of having FM it's not something that I have let myself dream about anymore, but would love to know the stories of the ones that have had the chance to live life in remission.

    I hope that everyone is a good day today:)

  2. TxSongBird

    TxSongBird New Member

    I have had this disorder for over 10 years and I can't say that I have ever been in remission. I have flares that are worse than others, but never been pain free in ten years.

  3. NyroFan

    NyroFan New Member


    I have heard of people who say they are in remission. I believe I have seen it on this message board.

    I have not been one of the lucky ones. I have been flaring for six years or more.

    My doctor has told me that there is no cure for FM. (Just his opinion, others may say there is a cure).

  4. gkrrt

    gkrrt New Member

    How would you know if you go into remission? I know if I dont take my meds I am worse. So do you go without your meds to determine if you are in remssion? And take the chance that your not and cause a major flare........
  5. Treca

    Treca New Member

    I do believe that there is no cure for FM at this point in time. Though I don't believe that "Remission" means cured.

    Doc told me that it's like cancer in a sense. You have it and then you may get lucky and go into remission and then you go back to having it again.

    Of course this was almost 7 years ago and I know that opinions have changed since then.

    Thanks for the replies! I just love to learn about everyone here.

  6. Treca

    Treca New Member

    I have tried what you are talking about. I have been lucky to where I never had a flare up when I did this though. I can only imagine the pain.

    My doc always said to never let your pain get worse because it would make it to where the meds you take don't even feel like they are taking effect because the pain got so bad.

    For me though sometimes I have to wait and see if the pain is still there because how other way would you ever know??? I do this because there may be the smallest chance that the pain won't be there anymore.

    I don't do it often, but for my piece of mind I NEED to do this.

    I guess another way you could tell without doing that is to do a "tender point" test and see if they are still there, but would they stay there and still be in remission?
  7. gkrrt

    gkrrt New Member

    SO do you not take any med? I take cymbalta, and tranxene for nerves and pain meds if needed.
  8. insanelady

    insanelady New Member


    About 2 years ago I would go through 2-3 months no pain but when it came back it came back with a vengence. Each time I thought that I had gone into remission and my doc did not know what he was talking about.

    Well here I am and for the last 9 months it has been a ceaseless day in and day out pain or fibro fog or my IBS acting up which is associated with Fibro.

    I hope you do go into remission.

    Good luck

  9. Treca

    Treca New Member

    I use to be on all kinds of narcotics and I HATED it. Though the last narcotic I used was Methadone at a does of 20mg a day I would take one in the morning and one at night. I would also take Lunesta for sleep and that was all I needed.

    Just a few months ago I went to a new doctor and we decided to do some trial and error with new meds that are out today that seem to be helping other with their FM.

    I've finally found a combination of meds that are working for me and I don't feel the pain anymore.


    Neurontin 2 600mg pills 3x a day =3600mg a day.

    Tramadol(Ultram) 2 50mg pills 3x a day =300mg a day.

    Baclfen 2 10mg pills 3x a day =60mg a day.

    Nortriptyline 1 25mg pill 1x a day.

    Lunesta 1 2mg pill @ night for sleep.

    Now I don't know if the Nortriptyline is working or not, but will be trying Wellburtin to see if I will be able to take. Though if it effects my libido I will not be taking it.
  10. carebelle

    carebelle New Member

    I went through about a year in remission I do not know why I had no pain unless it was the Gedon ,but that caused me to get milk in my breast and then my nipples started to bleed.A few months ago my pain came back full force .The only thing I had changed was I had Stop the Gedon.
    So now I am on Lodine for my pain and it seems to be helping me somewhat.
    I feel worse now with these DD's then ever before.This board has been so helpful for me, cause I just do not get out because of the fatigue.
    When I am well rested my pain isn't as bad, but being well rested just never get there. Just doesn't seem like I'm ever rested enough.
  11. thirkmom

    thirkmom New Member

    I had a remission once. It lasted about 45 minutes and then I woke up. Boy was I mad. I'm afraid the only remission I'm ever going to get is the one you dream about.
  12. tammy21

    tammy21 New Member

    2 wonderful pain free not feeling tired weeks for me. (touch wood it lasts a while longer yet).
    Take care
  13. hugs4evry1

    hugs4evry1 New Member

    On Mother's Day of 2000, I went to bed to take a nap and couldn't get up for 9 months. That was my first major flare although I had been having shorter flares for years.

    Around the 9th month, I was able to begin to get out of bed for short periods and get up and around my house.

    In June of 2001, I went back to the states to help my Mom after her heart surgery. I had been caffeine free prior to the flare, but started drinking my Pepsi again and taking Excedrin for some zip.

    I went into remission and it continued for about 4 years. While in remission I was able to cook, clean, shop and sometimes all on the same day.

    We even moved from the Middle East to Germany and I unpacked all the boxes, set up my home, traveled and had visitors. I was having a blast. A friend and I even drove to Zurich for lunch, just because we could.

    I napped when I needed it, and was always aware that I had to take care to rest my body and balance my life.

    Then came my second major flare that started in July 2004. I'm still in it although I had a few good days in May 2005, then I was zapped right back into the flare when my daughter was hospitalized.

    Lately I've had a few days of feeling better as if it's possible to come out of this flare, but when the weather changes, I'm right back to where I started. On sunny days I have been able to go to lunch for my favorite salad but it's only about 2 miles from my home and I get tired easily.

    But it is progress for me and I'll take it.


    Nancy B.

  14. Treca

    Treca New Member

    I'm so sorry for you :( It hurts us ten times more when it's our children.

    I'm so happy for you that you had those 4 years of being free from this DD. I agree with you that even though it was just 4 years that I would take that too. I would take anything and just be happy that I had the chance to experience it.

    Thank you everyone for responding to my post and telling me all your stories. I really appreciate it!

    God Bless to all!

    Treca :)
  15. Suzanne4health

    Suzanne4health New Member

    I was diagnosed about 3 years ago, and then gained a lot weight. Went on a healthy low carb, high protein diet that included eating fruits and veggies. I was also getting daily vitamin B6 complex injections. The shots were great and gave me a lot of energy. For some reason with the combination of my diet and injections my pain went away for about 8 months!!! Did not even take one pain pill. Then a few months after I got off my diet, the pain came back and got worse. I have been in pain ever since.

    Now I am back on the diet and injections, but am still in pain, but not as bad as before I started the diet. This really seems to help!

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