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  • Fibromyalgia is worse than ever again!!

    13 posts, 10 voices, 952 views, started Sep 26, 2008

    Posted on Friday, September 26, 2008 by Dianne67

    •  



    • Aquamarine
      Offline

      I just spent the last few days practically unable to move.  I go through really severe bouts for weeks.  I have been tested for everything hoping that I could find an answer.  I have been suffering at a non-functioning level for almost four years waiting for a remission.  I am on narcotics, and other meds.  If I was not on them I would be unable to move.  Taking a shower or bath is impossible.  Sometimes I go days just resting up to be able to do so.  Then I am exhausted again.  I do have a very bad case of it.  

      My kidney values were slightly elevated so I cut back a bit on my meds and that has put me at a severe level of pain.  The only relief I have is when I am sleeping; but I dream about being in pain too.  It is so horrible.  It has changed every part of my life and has taken so much from me.  

      I have started acai in hopes for that to help.  I have tried everything; but when a bad flare comes, nothing helps.  I am lucky to have a supportive boyfriend.  My husband left me after 13 years of marriage when I no longer was wonder woman doing it all.  For most of the marriage I worked, cleaned the house, cooked gourmet meals, and handled the bills.  I think that was what got me in this place.  I am going to post my story on my page of what happened to share with others.  

      For those that can get by without pain meds, you are sooooooo lucky.  I once could, but then it got too severe so I had to give in to seeing a pain doctor.  

      The illness also effects my cognitive skills as well.  My life has to revolve around the illness.  It dictates my everyday life and what I can do and commit to.  I can never plan in advance.  I moan in pain in my sleep.  

      I wanted to take my life last year when my ex was pushing me out of the house when I was too sick to move.  He wanted to put it on the market for sale and felt me laying on the couch would not look good.  I can understand that; but I could have used some compassion.  The divorce was not final yet and it was and still is our home.  It is up for sale with him living in it in NJ.  I am in an apartment in PA with my boyfriend.

        

      Well, that is enough of my sad story.

      Dianne



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        • 0 votes vote up vote up

          Dana Arcuri wrote Sep 27, 2008
        • Dianne, I relate to the aches & pain of fibromyalgia, I relate to your illness dictating your life and that you have to take one day at a time.  The one important thing to know about medication for fibromyalgia is that MOST medications DON‘T work.  The reason is that fibromyalgia is related to the central nervous system.  The ONLY way a pain medication can relieve the pain is if it is for the central nervous system, which most are not.  That is why it is so tough trying to find anything to relieve the aches & pain, there is not much out there to touch the central nervous system.  

          From my research, what makes a huge difference is diet, change in lifestyle and wellness products.  For instance, my doctor shared with me that ALL meat, unless it is organic, causes inflammation, which worsens our symptoms.  All meat, unless it is organic, is injected with steroids that cause inflammation and other negative side effects to our bodies.
          Not everyone can afford eating 100% organic, including me.
          However, I pick and choose the organic foods that I do eat.
          I eat organic eggs, yogurt and I try to limit my meat. In addition, I try to stay away from foods with artificial colors, preservatives, bleached white flour, aspartame,
          junk food and too much sugar. Foods truly can make or break our mental and physical well-being!  

          I highly recommend reading the book “FROM FATIGUED TO FANTASTIC” by Dr. Jacob Teitelbaum, which provides information about both traditional medicine and alternative medicine for treating fibromyalgia.  Check out his website at www.endfatigue.com.

          No matter how painful your life my be right now, there is hope for a better tomorrow.  I refuse to let this fibromyalgia or any other health condition steal from me of the joy that God promised me.  Much like Debrajl9, I want more and I am demanding more from my life.  It is easy to allow depression and pain to drag us down, but I am forcing myself to keep on keeping on through my journey of wellness.
          No, it is not easy, especially on my own.  I can do NOTHING without God.  The good news is that God does hear our prayers, hear our cries, He knows our suffering.  For it is God who sent His own son, Jesus, to suffer and  die on the cross for our sins.  God does not promise a life of no pain, but He does promise that Jesus is with us, that He is our refuge, our anchor who is waiting for us to call out for help.  It is because of Jesus that I have HOPE for tomorrow, that I am encouraged to persevere and look forward to brighter days.



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        • 0 votes vote up vote up

          Coachmombabe wrote Sep 27, 2008
        • I kind of hate to ask this, since you’ve probably pursued every angle...but have you looked closely at diet? My symptoms improved dramatically when I changed the way I ate. But I know it’s not the solution for everyone. I hope you feel better soon!



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        • 0 votes vote up vote up

          Dianne67 wrote Sep 27, 2008
        • Thanks for the suggestions.  

          I do eat almost everything organic.  Our food bill is high; but I would rather sacrifice somewhere else.  Since I am studying nutrition, I am so aware of such yucky stuff that they do to our food or how the are genetically modifying it that I am very aware of what I buy.

          I have tried everything out there.  I have been down the holistic route, the elimination of foods, accupunture, meditation, yoga, relaxation cd’s(they help me alot, and now narcotics.  If I didn’t have certain pain drugs to take when I am in a pain cycle; I would have blown my brains out.  

          My first bout of fibro was in my early 20’s.  It was dormant until my late 20’s and it came out when I was dianosed with interstitial cystitis.  Thank God that is under control due to the meds because the pain of that is unbearable.  When I have a flare it feels like glass cutting into my whole vaginal area.  intercourse is not even a possiblity.  Plus, the urgency to urinate is constant.  My drugs have made me able to have a normal sexual life with the current man in my life.  Sex was always painful with my ex husband.  

          Anyway, I don’t feel that hopeful unless something new comes out.  I know I sound negative....but I have not been able to catch my breath for almost 4 years now from the pain and fatigue.  I need a break for a while and I was hoping I would be in a remission by now.

          According to a new doctor I saw a month ago to make sure I didn’t have lyme disease with extensive testing; she said I have the most severe case she has seen and thought maybe something was being missed.  Lyme and other tests came back negative.  I still feel like something is being missed in my heart of hearts.  I can’t believe I could be this bad.

          Hugs-
          Dianne



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          Coachmombabe wrote Sep 27, 2008
        • Oh, man! I am so sorry! I will be praying that God will reveal what you need to know and how to deal with it. Please keep us posted!

          Blessings,
          Cindy



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        • 0 votes vote up vote up

          Queenbee wrote Sep 28, 2008
        • I’m so sorry for you, Dianne. I’m glad you‘re studying nutrition. I firmly believe that our lives are toxic and causing many of our illness these days. I’m much better at preaching than I am at practicing, though! Maybe the rest of us can learn from your nutritional knowledge.
          I live in a narco haze much of the time, too. And then deal with the memory lapses and all the other great side effects. It doesn’t work, but it takes the edge off, you know? I’m glad you have a strong supportive partner.
          I’m sure you’ve tried everything I have in my arsenal. If you‘re religious at all, there’s a great web-site called invisible illness. They send me daily devotionals that I find helful. I’m not “mega religious“, but do find great comfort some days in leaning on my higher power!
          I wish you peace!
          QB



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          Dennie05 wrote Oct 13, 2008
        • Hi, I am new to this great site for women.  I’m loving it.  I read alot last night, but the site was down, so I couldn’t join FAB40+ until this AM.  I couldn’t wait to get involved!  I am sure someone has told you about Monavie and how it has helped so many people with fibromaylgia.  I personally know a lady who was on Lyrica, and was able to wean herself off by drinking Monavie.  I personally don’t have fibromyalgia, but have lots of aches and pains...which are kept controlled with Monavie.  Not a  cure, but can help.  I think it is worth a try!  Let me know if you want any more infomation.



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        • 0 votes vote up vote up

          Dianne67 wrote Oct 13, 2008
        • I tried Mona Vie a few weeks ago and felt better; but ran out.  I wasn’t sure if it was just a coincidence.  I am now back on it again and I have been feeling good again.  I can’t believe it!!!  I have more energy than usual and less pain.  The only problem I am having is that I can’t sleep at night sometimes.  However, that is much better than my sleeping for days.

          It has been about 5 days that I am on it again and feeling good.  If is amazing if that is what it takes.  I am still on a bunch of meds; but I will wean off of them after I am on this long enough.

          I posted about it in another section.

          Hugs-
          Dianne



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          Dennie05 wrote Oct 13, 2008
        • Dianne, I just knew you had to have heard about Monavie by now.  I had no idea that a juice could do so much for so many people.  I had no intentions on persuing the business part of Monavie, but I just couldn’t help myself....it just works so well.  Now I have lots of fun with the business, meeting lots of great people and making some money, too.  But the juice (in my eyes) is what is important and how it can help.  I am a RN, and believe me....I do what I can to avoid medication.  I see both the good side and the bad side of meds everyday.  Take care and I hope you can continue to improve!



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          Dee Dee Shaw wrote Oct 13, 2008
        • Dianne,
          I really think glyconutrients and phytosterols would help you too. I am glad you are feeling better. I am waiting on a shipment of my supplements so have been taking less. We had a big party this weekend and by the end of the day I was feeling horrible. I eat natural foods, but not necessarily organic. With some foods it is important, with others it doesn’t matter all that much. On Dr. Mercola’s website there is an article about which organics are most important.  

          Sharing Hope,

          Dee Dee



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          Linni wrote Oct 13, 2008
        • Hi Dianne..

           i am glad you are feeling a bit better... i have all 18 points of fibromyalgia.. it really stinks most days.. i stoped taking all my meds ( not recommended! ) because i gained 60 pounds and can’t afford to buy new clothes.. the pain is horrible most days, and its such a struggle to walk..

          Yes, nutrition, exercize, and sleep play a big part in how good/bad ones flair ups are.. i am slowly learning better eating habits, and have started dancing ( not a pretty sight! lol ) in my living room.. i figure, its a form of exercize until i can do more..

          i will keep you in Prayer!
          Linni



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          Theresa Simmons wrote Oct 21, 2008
        • i dont mean to pry,but i was reading one of your posts. God how do you live like that?i feel so bad for you.are you sure theres something the dr,s are not missing?  i pray in jesus,es name that you find comfort and relief, and possibly an answer to end all this suffuring.  in my thoughts.    terri



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          Rena Bennefield wrote Oct 24, 2008
        • **Hay Girl...How have you been..My fibro has been unbearable..When the weather goes from hot to cold I just suffer the in between months..Dampness and cool air just kill me..My IBS has gotten unbearable..I hope you have been feeling better... Are you going out for Halloween? Me I will pass out candy ..LOL...



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