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Disaboom » Health » Fibromyalgia » Living with the pain of fibromyalgia

Living with the pain of fibromyalgia

Last post Sun, Sep 07 2008 3:31 AM by Cannoli. 1803 replies.


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  • THUNDER40CAL THUNDER40CAL
    Posts: 115
    • permalink Living with the pain of fibromyalgia

    • Posted: Sun, Dec 02 2007 4:26 AM

    • Hi all my name is Jack I have been living with fibromyalgia for 18 years  and disabled for 8 years I had to fight for 10 years and have been through just about everything one can go through in my opinion that fibro has to offer, from heart ailments to crippling pain to hospitals over and over again even a few surgeries.

      I also suffer from Diabetes and I am insulin dependant, and a wide variety of other ailments that make my life very interesting if nothing else, I have been to numerous doctors to find relief. I have had every test with a letter in it and even some with just numbers LOL I will have to keep this short as I am limited to 15 minutes  use of my hands before they start to hurt again, I just wanted to say HI I found this site via an infomercial on tv and I thought I would give it a try.

      meds I take

      vicodin es for pain when it gets to bad to deal with lasts 2 hours but doesn't really help

      insulin,for diabetes,  xanax to help level my mood and regulate the depression and stop the panic attacks a variety of heart meds to stop the atrial fib , tachacardia, and blood pressure meds to help with the heart meds side effects.

      I have looked into lyrica but I am not going to jump on the band wagon just yet as it has a few too many bad side effects that will not mesh with my other meds.

      I have also done the holistic rout with herbs and the like with no luck  been there done that

      like I said 18 years and counting and still fighting the good fight

       GOD BLESS ALL WHO SUFFER

      JackSurprise


    • Filed under: FIBROMYALGIA
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  • mysfamu mysfamu
    Posts: 65
    • permalink Re: Living with the pain of fibromyalgia

    • Posted: Sun, Dec 02 2007 7:28 AM

    • Welcome Jack.

      I have only been diagnosed for a year. The other time i was just confused as to what was going on. Your post is very encouraging!!!

      I too have read up on Lyrica, but the side effects seem the same as the symptoms i have now. Too much of a gamble, personally i will wait until it is on the market a while before it consider it.

       

      Have a great day!!!

      Monique 

       

       


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  • InnerGlow InnerGlow
    Posts: 89
    • permalink Re: Living with the pain of fibromyalgia

    • Posted: Mon, Dec 03 2007 7:04 AM

    • I've been suffering with fibro for about 7 years now and started taking Lyrica for nerve pain a couple of years ago, before it was specifically approved for fibro (it's already been on the market quite awhile).  It has been a wonderful medication for me and helped so much.  It is a difficult medication to get used to, I think, because initial sleepiness, dizziness, and feeling out of it, but they were temporary for me.  If you start on a low dosage and work your way up, it's not too bad.  I'm currently on 150 mg twice a day.  If you decide to stop, you also need to taper off.  But once I was set with my dosage, I haven't had any side effects at all.

      Are either of you on any NSAID's or muscle relaxants?  Those can help too.  I'm on Relafen and Skelaxin.

      Good luck with finding the right combo of meds and treatments.


    • "The great art of life is sensation, to feel that we exist, even in pain." - Lord Byron

      Suzanne 37F with DDD, FMS and seronegative-RA
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  • Daydreamer2 Daydreamer2
    Posts: 2
    • permalink Re: Living with the pain of fibromyalgia

    • Posted: Tue, Dec 04 2007 7:50 PM

    • I to suffer with fibro sence 1980 and as a Vet. it is had to get to a med. as the Gov. only uses one or two  so it has been helpfull to hear what you all take. i have a hard time with some meds due to not being able to talerate them on my stumch. asprin is a big one so any thing you all can tell me is cool thanks


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  • zgailgoodman zgailgoodman
    Posts: 81
    • permalink Re: Living with the pain of fibromyalgia

    • Posted: Tue, Dec 04 2007 9:46 PM

    • Your body needs to be supplimented.  Save your stomach and get some reeal help.  I have a friend with it who said her body hurt just to lay in bed.  I recommended what I take.  Here is the sight with the video and you get to buy wholesale at just 19.95 per month.  Way cheaper than meds.  It has a video and a 16 page report from the Physicians Desk Reference.  It wont upset your stomach.  A friend of mine no longer has any knee pain.  I've gotten improvement in my asthma and my dizzy spells have decreased by 10 % in just two weeks of the GBG liquid vit/min etc suppliment.  It gets in your system in three minutes taste is good and gentle on stomach.  It contains 65 trace minerals too.  Page three of the report list eveything in it.  Its amazingloaded with antioxcidants.  just check it out foryourself.  This is sharing not a sales pitch.   www.shopgbg.com/317532   Sincerely,Gail of disaboom


    • Gail S. Goodman age 55,upstate New York dyslexic but big problem is that do to a 2am night shift,after a year and a half I was really sick from light and sleep deprivation and developed a mood disorder and then 5 years ago was attacked and still suffer from PTSD. Developed sleep apnea and now take med ication for that to. On the outside I seem perfectly well. So my disability is hidden but it has affected me socially because I'd just as soon be alone but they warned me that is not good so I force myself out. But rarely enjoy it. My mood disorder is organic and I suffer from severe depression even when things are going well but medication and therapy have helped. When I tell them that I was attacked there seem to be some compassion but best of all I don't get question why I am on workers comp...it happened at work, I'm still struggling to get back more of me and it is slowly coming. I always need hope. I live on hope. I've been getting good results from a highly potent liquid vit/min suppliment with 65 trace elements and even more for just $19.95. Its a miracle someone told me about it. By day three I felt different. Here is the site if you want to check it out,it even has 16 pages of the physicians desk reference. If you want it DON't pay retail just order the wholesale and you even get a free website but you don't have to sell. I just tell my friends what it has done for me and another friend and they check it out. Its up to you .....no selling here just info www.shopGBG.com/gailgoodman
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  • zgailgoodman zgailgoodman
    Posts: 81
    • permalink Re: Living with the pain of fibromyalgia

    • Posted: Tue, Dec 04 2007 9:56 PM

    • If you really want something that will help with no side effects check out this site and watch the video.  I've been using it and so have a few of my friends and we have all had different but great results.and if you decide to do it you can buy wholesale for just $19.95 per month with a 60 day empty bottle guarantee.  Its a liquid and gets into your system in three days. www.gbg.com/317532  Sincerely Gail


    • Gail S. Goodman age 55,upstate New York dyslexic but big problem is that do to a 2am night shift,after a year and a half I was really sick from light and sleep deprivation and developed a mood disorder and then 5 years ago was attacked and still suffer from PTSD. Developed sleep apnea and now take med ication for that to. On the outside I seem perfectly well. So my disability is hidden but it has affected me socially because I'd just as soon be alone but they warned me that is not good so I force myself out. But rarely enjoy it. My mood disorder is organic and I suffer from severe depression even when things are going well but medication and therapy have helped. When I tell them that I was attacked there seem to be some compassion but best of all I don't get question why I am on workers comp...it happened at work, I'm still struggling to get back more of me and it is slowly coming. I always need hope. I live on hope. I've been getting good results from a highly potent liquid vit/min suppliment with 65 trace elements and even more for just $19.95. Its a miracle someone told me about it. By day three I felt different. Here is the site if you want to check it out,it even has 16 pages of the physicians desk reference. If you want it DON't pay retail just order the wholesale and you even get a free website but you don't have to sell. I just tell my friends what it has done for me and another friend and they check it out. Its up to you .....no selling here just info www.shopGBG.com/gailgoodman
    • Reply Contact
  • Runt Runt
    Posts: 21
    • permalink Re: Living with the pain of fibromyalgia

    • Posted: Mon, Dec 10 2007 8:30 AM

    • Hi Gail. Runt here. I'm with you. I read all the posts about meds for Fibro. Some help, but most don't. What happened to a little self reliance? I've had Fibro for quite sometime now and any meds I took made me feel worse. So, I got mad and started to just listen to my body for a change instead of trying to find a quick fix. And that's what I found. It's just a quick fix. I 'm trying to monitor when I feel the worse compared to when I feel half way human. Stress for me is the #1 killer. So, learn how to combat it. Change the way your living. It's not easy but for me it beats the alternative. Try letting your body heal itself a little. With all these meds we use, no wonder we feel like crap. I know some meds you have to take. But why use more than we have to? I have to take synthroid everyday and I hate the idea I have to have it. And that's only one pill :) Call me a control freak, but I'd rather try to fix the bad days and be grateful for the good days and know that it was me who made myself feel better. Make it a great day! Runt Yes


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  • terrylynn terrylynn
    Posts: 185
    • permalink Re: Living with the pain of fibromyalgia

    • Posted: Mon, Dec 10 2007 11:35 PM

    • Hi Jack, I'm working on 15yrs with fibro. What I think needs to be said about fibro is that what may or may not work for you has nothing to do with anyone else. Fibro is famous for being difficult to treat. Our symptoms are different, our reactions to medicines are different. Your post, been there done that is a little discouraging for newbie to this crud who are looking for advise. I have been on lyrica for three years. I have had no side effects and it has helped a great deal. I've not gained an ounce, but others say they do gain weight. I have, on the other hand reacted negetively to almost every anti-depressant out there. And I spent 10 years being given more downers that I care to admit and after two terrible falls from being overmedicated I spent two months going through withdrawls because doctors sometimes will just give you anything to shut you up. My experience with supplements like malic acid with magnesium has been nothing but positive, and hyaluronic acid takes my pain away within minutes and stays away. Yes I have good days and horrible ones. Days that I couldn't get out of bed with the help of a fork lift. Doesn't everyone? My advise to those of us who are new to this or any disease/condition is this. Learn to understand what your body is telling you. Learn what will happen if you over-do and how much you can do and when it's time to stop. Only you know what your feeling. The rest of us who have been at it for awhile like Jack are great resources. There are great books out there. It is up to each of us as individuals to learn as much as we can so we can share our experiences and knowledge with others. But don't give something up or not try something because it didn't work for someone else. This condition is an individual condition. terrylynn

    • No amount of kindness, no matter how small is ever wasted
    • Filed under: FIBROMYALGIA
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  • Debbie Debbie
    Posts: 3,601
    • permalink Re: Living with the pain of fibromyalgia

    • Posted: Tue, Dec 11 2007 12:09 AM

    • hi jack and daydreamer, [love the veterans, thanksSmile it's nice to meet you. i fell 3 yrs ago and have been trying to control my pain as well from 2 surgeries ect.. i wish everyone luck [me too lol] to hopefully find he right answer for our bodies. i'm a vegetarian, not keen on taking anything really.


    • xoxo love debbie


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  • THUNDER40CAL THUNDER40CAL
    Posts: 115
    • permalink Re: Living with the pain of fibromyalgia

    • Posted: Tue, Dec 11 2007 12:37 AM

    • Hi again all I am pleased to see the ranks growing, we all need a place to vent and talk about our trials and tribulations it helps all of us.

      In the same vein but in a different part of the body NONE of us has all the answers about Fibromyalgia As terryLynn put it we are all different. However some of the Quack treatments out there can possibly do more harm than good, So I urge you all to be careful when dealing with doctors of ANY KIND, check credentials first, talk to others who can back their claims.

      I Have been going through this game of guess and guess again with so called specialists for Many years, and many of them meant well but didn't have a clue.

      Please understand this is not an attempt to scare those newly diagnosed or put down anyone. This is my opinion and mine alone and these opinions have been formed from MY personal experiences.

      that being said just because there is an MD or GP or PHD etc after someone's name does not make that person an expert on a particular condition. Only the sufferer can best Judge what does and doesn't work for their body, Furthermore what has not worked for me  may work for you, I just pray none of you who suffer from this disease are like me, made to suffer one more needless pain just because some overly righteous DR DINGLEBERRY who is more bent on building his practice than sticking to the Hippocratic oath, fails to see the patient in front of him as a living feeling being rather than a practice dummy to try his newest guess out on.

      sorry if this may upset some of you it is not meant to NOR is it meant in any way to prevent any of you from continuing to seek the best treatment you can find, BUT I would like to try to help those newly diagnosed and those of us who are desperate for relief as most of us are,  Not to make the same mistakes I have paid so dearly for. They say an ounce of prevention is worth a pound of cure....... well in all our cases I believe ten minutes of investigation can prevent 10 days of pain. thank you to all who are reading this.

      and may the GOOD LORD keep you free from harm and free from pain

      Jack

      JUDGE not the words you have read Only the heartfelt wishes for a speedy cure to all that causes us pain


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  • zgailgoodman zgailgoodman
    Posts: 81
    • permalink Re: Living with the pain of fibromyalgia

    • Posted: Tue, Dec 11 2007 9:38 AM

    •  found something that is helping me and others and its a blessing I found it.  Actually my friend Bruce who is a nutritioninst found it and emailed it to me.  He no longer has painful knees and I no longer have dizzy spells and I have more energy.  It seems to do different good for different conditions and bodies.  I can only give you the website.  There is a video explaining it.  or you can reach me at zgailgoodman@yahoo.com.  Sometimes I'm on the disaboom chat.  I wish I could get eveyone to know about this so we can have what we need for our bodies.  NOT A DRUG.   www.shopgbg/317532


    • Gail S. Goodman age 55,upstate New York dyslexic but big problem is that do to a 2am night shift,after a year and a half I was really sick from light and sleep deprivation and developed a mood disorder and then 5 years ago was attacked and still suffer from PTSD. Developed sleep apnea and now take med ication for that to. On the outside I seem perfectly well. So my disability is hidden but it has affected me socially because I'd just as soon be alone but they warned me that is not good so I force myself out. But rarely enjoy it. My mood disorder is organic and I suffer from severe depression even when things are going well but medication and therapy have helped. When I tell them that I was attacked there seem to be some compassion but best of all I don't get question why I am on workers comp...it happened at work, I'm still struggling to get back more of me and it is slowly coming. I always need hope. I live on hope. I've been getting good results from a highly potent liquid vit/min suppliment with 65 trace elements and even more for just $19.95. Its a miracle someone told me about it. By day three I felt different. Here is the site if you want to check it out,it even has 16 pages of the physicians desk reference. If you want it DON't pay retail just order the wholesale and you even get a free website but you don't have to sell. I just tell my friends what it has done for me and another friend and they check it out. Its up to you .....no selling here just info www.shopGBG.com/gailgoodman
    • Reply Contact
  • LadyHeartSong LadyHeartSong
    Posts: 9
    • permalink Re: Living with the pain of fibromyalgia

    • Posted: Tue, Dec 11 2007 2:47 PM

    • I have been dealing with fibro since I was 23.. I am now 34.. 160mgs of M-Eslon ( morphine) a day to help deal with the pain..the frustration levels I find tend to vary depending on how bad your pain is that day.. on a scale of 1-10.. I dont remember the last time I was under a 5..even with all the meds in my system..  

       

      I talked to my doc about Lyrica.. he said it wasnt for me and wouldnt put me on it.. btw I am canadian.. not sure how many canadians are on here.. medical is different up here..lol so I am stuck on what I can do.. 

       not to advertise another website.. but check out the letter to normals at www.fibrohugs.com site.. I cried the first time I saw it..I felt so alone until I read that.. I have it printed out on my fridge and I read it every day.. especially when my pain is so high.. its worth reading...

       

      figured I would throw my two cents into the pile

      hugs to all my fellow fibromites
       


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  • zgailgoodman zgailgoodman
    Posts: 81
    • permalink Re: Living with the pain of fibromyalgia

    • Posted: Tue, Dec 11 2007 6:24 PM

    • I noticed you are from Canada.  At this time the supplement I was going to refer you to is only avaible in the USA  But I will give you the website since you may have a friend in USA who could send it to you.  It will be made available worldwide in the future.  Its a liquid vitamin /mineral supplement with 63 trace minerals.  I have had improvement with it as has my friend Bruce.  check it out for yourself. And anybody else.  I'm trying to share this with others and yes I am a rep after buying and using it.  Watch the video"   www.shopgbg.com/317532   There is a 60 day empty bottle guarantee.  So if it didn't work you just cancel  and get money back...but what if it does help you. It seems to help everybody differently.


    • Gail S. Goodman age 55,upstate New York dyslexic but big problem is that do to a 2am night shift,after a year and a half I was really sick from light and sleep deprivation and developed a mood disorder and then 5 years ago was attacked and still suffer from PTSD. Developed sleep apnea and now take med ication for that to. On the outside I seem perfectly well. So my disability is hidden but it has affected me socially because I'd just as soon be alone but they warned me that is not good so I force myself out. But rarely enjoy it. My mood disorder is organic and I suffer from severe depression even when things are going well but medication and therapy have helped. When I tell them that I was attacked there seem to be some compassion but best of all I don't get question why I am on workers comp...it happened at work, I'm still struggling to get back more of me and it is slowly coming. I always need hope. I live on hope. I've been getting good results from a highly potent liquid vit/min suppliment with 65 trace elements and even more for just $19.95. Its a miracle someone told me about it. By day three I felt different. Here is the site if you want to check it out,it even has 16 pages of the physicians desk reference. If you want it DON't pay retail just order the wholesale and you even get a free website but you don't have to sell. I just tell my friends what it has done for me and another friend and they check it out. Its up to you .....no selling here just info www.shopGBG.com/gailgoodman
    • Filed under: Health, pain relief, mental health, neurological health
    • Reply Contact
  • terrylynn terrylynn
    Posts: 185
    • permalink Re: Living with the pain of fibromyalgia

    • Posted: Wed, Dec 12 2007 5:39 AM

    • Jack, Thanks for recognizing me in your post, but I hope your not referring to me or my natural supplement beliefs as QUACK. I have done a lot of research for MYSELF, and because for some reason, we with fibro seem to become very sensitive to medications. If a body is lacking something natural, why not replace it with something natural instead of the risk of serious addictions to medications or allergic reactions? There are excellent books on Fibromyalgia that you can find in any book store. It helps, for me anyway to know what is going on with my body. I have never been one to just accept what a doctor tells me and take the pill without knowing what the pill is, does, etc. It is up to us to be proactive with our own health. IT WORKS FOR ME!!!! God Bless You, Jack terrylynn "Once word are spoken, there is no going back"

    • No amount of kindness, no matter how small is ever wasted
    • Filed under: FIBROMYALGIA
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  • THUNDER40CAL THUNDER40CAL
    Posts: 115
    • permalink Re: Living with the pain of fibromyalgia

    • Posted: Wed, Dec 12 2007 7:14 AM

    • TerryLynn, to try to put your mind at ease, I wasn't pointing fingers at any one. Each of us has had a different experience with FIBROMYALGIA, it is a hideous and debilitating disease. However there are those who would try to profit by preying on our need for help with no regard for our well being. ( Again just a statement of fact ) THAT was my only point. If a treatment works for you great. But until there is a proven cure, we all need to be aware that unfortunately people like that do exist and yes even the FDA can make mistakes. Again as you said , "we are all different"  I see no reason, why we all shouldn't learn from each other

      thanks

       Jack


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