need input from those that have been able to get days of remissio

Discussion in 'Fibromyalgia Main Forum' started by seaview, Sep 19, 2002.

  1. seaview

    seaview New Member

    Hello my friends,
    I have been reading the posts here for some time and I note that some of you are able to have times of remission. I do not understand that as my pain and fatigue has been relentless for over 10 years now. I do have 2 discs in lower back that are going away so the lower back pain and sciatica are accouted for.I did get DX (though they dont put it on paper)last year after self diagnosing and then finding out that my Mom has had this for a very long time. It was good to finally know I wasnt going crazy.I hurt all over and am so fatigued. I try to keep my chin up and keep going for my childrens sake but I am hittng the wall and just dont feel I can keep this up.
    When I first started coming here I was withdrawing from Effexor(bad memory). Jackie told me to try the ATP from this site which I have done faithfully. I have tried several sleep meds but always go back to benadryl(150 mg) which after a few hours finally helps me sleep.The doctor I see now has tried several meds like wellbutrin and paxil but they made me sick. He gave me Klonipin but I do not notice that it helps.Currently he is trying nuerontin but so far no difference. I have eliminated caffeine and have lost 30 pounds.(no connection between the 2)I am not overweight now.I have tried 5htp also. I take a B-complex vitamin but again ,I do not notice that it helps. I take vicodin and skelexin but they do not help either.I went off soma and am waiting to start the vicodin withdrawal but I keep chickening out. My past experience has been awful every time I come off meds. My doctor is hoping the nuerontin will help with pain so it will not be so hard(the withdrawal) from vicodin.
    I guess what I am asking for is input on other things I can try (both natural and others)to get some relief from the pain and fatigue. I am nearing the end of my rope.I am so exhausted that I am dragging myself out of bed each morning, going through the motions,and waiting till I can go back to sleep each nite...which never happens before 11 or 12. My husband(bless his heart) is so tired of watching me like this.My head feels like it is always in a fog. I try to be a good wife but this past couple of weeks I just don't have what it takes. I just dont understand how some of you find times of relief. I never have.
    So, now that I have written a book(so sorry) I will get back to my original question. What are those of you who find some relief,have good days,and have more experience in coping doing? I try to laugh,enjoy those sweet moments with my children etc....but I need to do something. I must add that my older boys do the vacumning,sweeping,mopping,bathrooms and so on. So, I am not running around trying to do it all like I use to.
    I so look forward to some suggestions from you(my family at large)who understand and have tried it all. I bless each of you as I read your posts.You are very dear to me.
    Kathleen
  2. seaview

    seaview New Member

    Hello my friends,
    I have been reading the posts here for some time and I note that some of you are able to have times of remission. I do not understand that as my pain and fatigue has been relentless for over 10 years now. I do have 2 discs in lower back that are going away so the lower back pain and sciatica are accouted for.I did get DX (though they dont put it on paper)last year after self diagnosing and then finding out that my Mom has had this for a very long time. It was good to finally know I wasnt going crazy.I hurt all over and am so fatigued. I try to keep my chin up and keep going for my childrens sake but I am hittng the wall and just dont feel I can keep this up.
    When I first started coming here I was withdrawing from Effexor(bad memory). Jackie told me to try the ATP from this site which I have done faithfully. I have tried several sleep meds but always go back to benadryl(150 mg) which after a few hours finally helps me sleep.The doctor I see now has tried several meds like wellbutrin and paxil but they made me sick. He gave me Klonipin but I do not notice that it helps.Currently he is trying nuerontin but so far no difference. I have eliminated caffeine and have lost 30 pounds.(no connection between the 2)I am not overweight now.I have tried 5htp also. I take a B-complex vitamin but again ,I do not notice that it helps. I take vicodin and skelexin but they do not help either.I went off soma and am waiting to start the vicodin withdrawal but I keep chickening out. My past experience has been awful every time I come off meds. My doctor is hoping the nuerontin will help with pain so it will not be so hard(the withdrawal) from vicodin.
    I guess what I am asking for is input on other things I can try (both natural and others)to get some relief from the pain and fatigue. I am nearing the end of my rope.I am so exhausted that I am dragging myself out of bed each morning, going through the motions,and waiting till I can go back to sleep each nite...which never happens before 11 or 12. My husband(bless his heart) is so tired of watching me like this.My head feels like it is always in a fog. I try to be a good wife but this past couple of weeks I just don't have what it takes. I just dont understand how some of you find times of relief. I never have.
    So, now that I have written a book(so sorry) I will get back to my original question. What are those of you who find some relief,have good days,and have more experience in coping doing? I try to laugh,enjoy those sweet moments with my children etc....but I need to do something. I must add that my older boys do the vacumning,sweeping,mopping,bathrooms and so on. So, I am not running around trying to do it all like I use to.
    I so look forward to some suggestions from you(my family at large)who understand and have tried it all. I bless each of you as I read your posts.You are very dear to me.
    Kathleen
  3. PaulMark

    PaulMark New Member

    kathleen : paul M. here please read my just post of seems like stay in HADES (or hell) , I don't have suggestions cause i'm in say boat after 5 yrs. just want yo to know i empaathize greatly i have diffeent symptoms i won't go into, and cheney l of tops in uS is my dr. unfortnuatnely he's indisposed for a phone confeerence,

    i pray a lot a whole lot rasied in christ. environment but in suffering have to wonder where help is when you pleasd for relief

    i'm on a couple of chronic ill. christ faith sites, that where we can vent more due to pain etc.

    i would welcome to give you the sites but can't on here due to there guidlines,

    if you wish e mail me, paulstory@iolky.com

    and know I understand as do many on this board and i can say I care about your suffering, god bless PM in KY
  4. seaview

    seaview New Member

    I also pray alot(have been for 20 years) regarding pain. No relief has ever come. I am a strong believer(as many who come here are)and will continue to hope but right now what I need is more grace and strength to get through each day. Thank you for the offer of websites but I barely get on here so I just dont have the time for anything else.I am raising 5 children and educating them at home. You have my blessings and prayers for your relief also. Thank you again..K
  5. Mikie

    Mikie Moderator

    I have had some wonderful remissions since being on the Guai treatment for FMS. Unfortunately, I also have CFS and the stress I've been under for months has kept me in a fatigued state, even though the Guai has improved my pain.

    When I have a Guai remission I am almost normal or as my Mom used to say, "back to your old self again." Hopefully, my therapy will help me with the stress and anger and will help me to get back to a remission state.

    Love, Mikie
  6. tandy

    tandy New Member

    I will follow this post to see if any can offer any hope to us.....As I read your post I got that sickened,sad feeling of being so powerless and wishing I could help.I have had this DD for about 10 yrs and have gotten worse-not better,not even for a few days!So we are surely in the same boat!I see you've tried alot of the supplements that are suppose to help.I have tried some too but without much luck,other than the melatonin really helping me stay asleep at night.We need to keep searching for help.
    I just wanted you to know that I'm here with you and for you.Take care,
    Best regards,
    Tracey
  7. seaview

    seaview New Member

    Thank you for your words of comfort and compassion. I felt your heart and it means so much to me. You are only a year younger than I and I am so sorry that you also have to suffer each day. So hard with having children to raise and then the knowledge that one of them might have to suffer...almost too much too bear!I am hoping for some answers also....maybe we both will find something we can use.I am going to look into the guia thing and read up on it. I have lots of ?s and not enough answers. Feel my gentle hug to you ......Kathleen
  8. seaview

    seaview New Member

  9. Shoobie

    Shoobie New Member

    I'm in the same boat as well. I can truly empathize!!

    I've had this DD for 10 years now and have only gotten worse, not better. I have not experienced a remission yet.

    I will push on as always. I thank God for my strength. I don't know what I'd do without faith, hope, and a great sense of humor.

    I've been down the therapy road and back again, but there's always new things to try so I will.

    Hang in there!

    -Shoobie
    [This Message was Edited on 09/19/2002]
  10. seaview

    seaview New Member

  11. Suze

    Suze New Member

    You might try doing a search. My contribution was as follows:

    I was in a good remission for about seven years, and for almost four of those years I was so symptom-free that I almost forgot I had FMS. I certainly stopped thinking of myself as chronically ill.

    The main factors were:

    making sleep a priority
    pacing my energy expenditures
    changing my diet (from low-fat to low-carb/low-saturated fat)
    drinking a lot more water
    doing mind-body work

    The last is probably the most important. I read a lot of books on the mind-body connection, and made an effort to practice positive thinking, do regular meditation/relaxations (while breathing properly to take in lots of oxygen), and undertake those activities that were so much fun that they distracted me from my symptoms. I also elminated as much of the negative as possible from my life, and faced and dealt with relationship issues I'd been in denial about. Critical stuff, in my opinion.

    Suze



    [This Message was Edited on 09/19/2002]
  12. dlizard

    dlizard New Member

    nice to have you here dear,,, listen* I've had whatever anyone wants to call this disease most all of my life... the part of it I remember anyway and I'm 42. I have long periods of being ok then outta d blue so to speak I get alot of wierd things happening in succession. I guess I consider myself fortunate to have some periods of "being normal" whatever that is... I've only been diagnosed about 9 months now but when I read this list of symptoms I realized that I've had this disease ALL of my life... during which time I have graduated from college, married divorced, traveled and had a pretty good life... first of all Don't give up... secondly, work on all of the things you CAN work on yourself... change your lifestyle, you can really do it gradually... I know I've been there... Back in the 80's the doc's called what I had lupus... so everyone would agree i have a TRUE medical condition LOL>>>> but one of the biggest by far things that helped me was to read Norman Cousins book, Anatomy of an Illness... I still think about things from that book daily... Life is as much about our personal perception as it is about anything else...I never realized til about this year that everyone didn't get my "tired" aches and pains and everyone didn't get my fatigue... so I never felt that I was much differnet than anyone else.... ?perception.... you betcha. I started looking for joy in all my activities.. had to give up my power trips and pressured job... started exercising lost 32 pounds so far.... drink 100 oz a water a day. I did alot of things I have total control over to make every day feel better for me. my advice is essentially to keep looking... you have far more power than you are giving yourself credit for. This may all sound crazy to you but trust me... I've been there! Good luck!
  13. MarilynK

    MarilynK New Member

    Sorry you are having a bad time.
    I have also been there like most of us here have,so we understand what you are going throu.
    Dont give up, figth back you can do it, god is with you all the way.
    I have had this most of my life to and it get worse with age i think.
    I am 38 know and in a bad flare i have been calling it for the last year.
    I have been looking for the rigth type of med. i can take and that has been a long trip.
    But i think know i have finnally found something that i dont have strange reactions to.
    The most important thing is to get the stage -4 sleep witch
    we dont due to FMS\CFS.
    Also this time around for me i have found out a new thing with my illness and that is ,i am exstemly sensetive to med. i have always been but not this mutch. This time i had to cut my med. one tab.into 4 to 6 peases and take just abit for 3-4 days and up from there.A little thing like that has made the diff. for me this time.
    I hope you can understand my writing fibrofog has been almost constant to.
    My kids go to school and i would never be able to teach tem at home, i must say you are a very strong woman.
    My Meds. are Tramadol\Ultram for pain I take 4-8 a day.

    I have just started Remeron anti depp. 1 at nigth.That helps me sleep and its already helping my depp+anxi.

    I try to do some streching every day, that is all exersice i can do at this time.
    I will start swimming again as soon as i can, that has helped me sooo mutch before.

    Hope this helped some.
    You take care and god bless you.
    If you want to send me some lines my e-mail is in my profile.

    Marilyn
  14. tandy

    tandy New Member

    In high hopes of a few more words of incouragement and any ideas on getting even a tiny bit better?????please......?
    Any supplements you feel have helped you out alot?
    Thanks,
    Tracey
  15. chrissy

    chrissy New Member

    dera seaview, i so admire you for putting up with this for 10 years and with all the stress that must come with a big family. I was in excruciating pain for 5 weeks in sep 2000 and after no help whatsoever from my doctors at Kaiser (except for drugging me up with cortizone, morphine,vicodin,lorazepam,codeine#3,oxycodone,,oxazepam,propoxyphene,etodolac,motrin to name just a few, I flew to Belgium for a diagnosis. To make a long story short, they operated on my neck and removed 3 disks. The pain in my neck went away but I still hurt like hell in many different places in my body and NO SLEEP.
    I discovered a book on fibromyalgia by accident and confronted my doctors with that here, They were skeptical. so after reading 4 books about it (knowledge is power) I do the folowinjg
    Guaifenesin to help your body rid itself of toxins and dilute thick secretions
    Magnesium and Malic acid, lots of vitamins,NO EXERCISE until you get restorative sleep (please read : Fibromyalgia :Simple relief through movement by Stacie Bigelow) where she explains the difference between Activity and Exercise,
    In the book called Fibromyalgia and Chronic Myofascial Pain by Starlanyl and Copeland there are 3 pages of medications for people like us and YOU can help your doctor decide which one might be b est for you based on your symptoms. Nobody knows your past history better than you. After trying 6 different meds cho9sen by my doctors, I asked them to put me on Sinequan (doxepin). Guess what : It worked like a charm the first time. Maybe I just got lucky. So might you. Please read my reply to girl of 41, maybe I'm just getting excited about nothing but it sure feels good to be able to give some input to your doctor and not feel like a helpless rat waiting to drink whatever they pour down your throat.
    please don't feel guilty, you deserve a lot of encouragement,how about getting a nice warm (not hot!) soothing bath with Epsom Salts before going to bed and you might try Valerian root with chamomile and hops, St John's Wort and scullcap tea. These are not as strong sedatives but they might tide you over until You and your doctor find the right meds for you ? Warm hugs to you !
  16. JaciBart

    JaciBart Member

    I have actually had some success with supplements, I have gotten my IBS under control, that is a huge blessing. I have gotten my sleep under control, and I seem to not be suffering from the noise sensitivity, that was horrible. I felt like screaming sometimes, the darn referigirator was so loud to me, and just the hum of anyting, like my computer, so now I am dealing with the pain thru pain meds (love that, working great) and I am trying really hard to learn to accept this and quit trying to cure it, I still think one of these days we may discover the cause, that would be nice, at least then we can maybe turn it around, I think forums like this are vital, it has helped me so much, the key to this is knowledge. I have cleaned up my diet also, and I am avoiding all nutrasweet, that stuff is very baaaaaaaaaaaaaaaaaaad.

    Jaci