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    Old 03-18-2015, 03:19 PM   #1
    Eric S
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    Help?

    Hi, I'm 29 and have been going through fibromyalgia for ten years now. I hav tried every drug, every therapy, and generally everything i can think of. This disease is truly a living hell and has left me basically helpless.

    I'm basically posting here out of desperation, I don't want to die, I want to live my life, yet this disease has robbed me of any chance to do so. Even interacting with people completely wears me out within minutes, let alone trying to do physical work.

    Has anyone actually gotten through this, and if so, what did you do? Maybe there's something i missed

    Thanks for reading, best wishes to you all

     
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    Old 03-19-2015, 09:12 AM   #2
    bluelakelady
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    Re: Help?

    hello and welcome Eric,
    I have been doing this for almost 20 years. for myself its about attitude and how I see my reality. adapting is a wise idea. I limit my friends visits to what I can handle. they are very understanding. I may not have the life I expected but I do have a life. sure its not as active as it was, but it is a life.
    when I first was diagnosed I got into art. painting. it kept me busy, yes I stink at it, giggle. I did abstract and would paint my emotions. I don't paint anymore. I adapted to my hands shaking all the time. I gave all my art stuff to my granddaughter. now I take pictures and write stories. I also read a great deal. its a great escape.
    sitting around thinking about what I am missing was not healthy so I stopped and found something to do.
    I did see a cool shrink for several years to help me learn to adapt. he was priceless!
    peace,
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    Old 03-19-2015, 12:05 PM   #3
    momzworkin
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    Re: Help?

    Where do you live? How do you eat? How do you earn money?

    I am also diagnosed with Fibromyalgia, but I have to work to have a place to live and food to eat, so I found a job where I am at a desk most of the time. I don't interact with more than 5-10 people a day, including my family. There are jobs out there, it will just take work to find them. Tell everyone you know what you are looking for, post it on ********, Twitter, tell your church-you may be surprised at what someone may know that can help you, kind of like posting on here.
    bluelakelady made good points-your attitude is half the battle. I go out and work because I HAVE to, so I had to develop an attitude that matched that, without complaining or being bitter about my daily pain to people who just don't understand an illness they can't see.
    Until they come up with a more definitive diagnosis, and better treatment options, we all go out and do what we have to do.
    You can do this!
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    Old 03-21-2015, 08:06 PM   #4
    yellowkelly
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    Re: Help?

    Eric S.
    I am so sorry you are going through this. I am new to this forum. My 16 year old son is struggling with Fibro and Bipolar. His depression is very bad. His pain and fatigue are also bad. School has been a problem. Initially he came home and tried an on line school, but he was lonely and unmotivated. He is back at school, but we had to alter his school day. He goes for 3 bells a day. Two of those are in a room where kids work on line at their own pace. He will get 5 hours of home instruction from a teacher.
    He loves musical theater and has an amazing voice. He is staying involved and that is the most normal thing he does. This all started a year ago. I often wonder how he will deal with this when he grows older. It is too much to think about. Reading your story makes me think about my son's future. Is your family supportive?

    My son takes cymbalta 120mg and Tramadol 25mg. It seems to decrease the pain and depression some. We are planning on seeing a pain doctor soon. I believe this doctor is a psychiatrist who helps you learn how to deal and cope with the pain (along with monitoring pain medications). I wish he would do more with diet and supplements and try acupuncture and chiropractic adjustments although I have seen some say this aggravates. I also wish he would try yoga, but right now, because he is 16, he just wants someone to make him feel better.

    I wish you luck.

     
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    Old 03-27-2015, 08:45 AM   #5
    ALittleLoopy
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    Re: Help?

    Im so very sorry to hear your frustrations, and that you are going through a really bad rough patch. I started several replies, but keep coming back to the fact that while you are 29, you've been dealing with Fibro for 10 years now. You don't make it through 10 years without a pretty good attitude and learning to adapt your lifestyle along the way. Don't sell yourself short, you've made it through the last 10 years, but I suspect you may need to find some more tools, and that what used to work (or at least helped some) may not be doing it for you now.
    I'm at a similar point myself, so I truly feel for you.

    I noticed you said you limit yourself to interacting with no more than 6 people per day. Similarly, I have modified my schedule, and only do 2-3 days of outings (doctor appointments, grocery store, movie theater, etc.) taking 1-2 quiet days after each "busy" day in my PJs -- most often stretched out on the bed watching movies. I find that the longer time I spend upright talking or interacting with people, the more stamina they pull out of me. Unfortunately, I also have several health issues (chronic migraine, Meniere's Disease, Fibromyalgia, and Narcolepsy), so I ended up on SSDI several years ago. I used to draw the primary income, so this change in finances had been hard ....REALLY hard. But it is what it is.

    I wanted to ask you about sleep. When watching TV with your family in the evening, does anyone notice you keep dozing off, then jerk awake? Do you have a hard time falling asleep at bedtime? I ask this because these were some of the things that happened to me, the lead me to have a sleep study done, and be diagnosed with Narcolepsy. We know those of us with Fibro don't get refreshing sleep. Those with narcolepsy skip the regenerative phase of sleep. The GREAT thing about this diagnosis is that there is medication available to treat Narcolepsy. Just some food for thought. A little research should tell if it's something that may apply to you.


    Have you explored supplements and a light daily excercise plan? I'm only up to daily stretching, but supplements have really helped. I no longer ache all over every day!!!!!

    Good luck,

    Maria

    Last edited by mod85; 03-28-2015 at 02:33 AM.

     
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    Old 04-07-2015, 04:20 PM   #6
    demmi77
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    Re: Help?

    I am 28 and have been living with a diagnoses of both fibromyalgia and diabetes for almost 3 years now. As a young person I feel your frustration. I don't know what was done for doctors to reach your diagnosis of fibromyalgia, but I can tell you that other recent health issues and symptoms have caused me to question my original diagnosis. What I have learned is that there is a startling amount of possibilities that had not been properly ruled out. (celiac disease, hemochromatosis, and a handful of autoimmune diseases that I could still have with negative ANA and RF results).

    While I am still in the process of trying to make sure my diagnosis was the correct one, and that may or may not be worth persuing in your case, in the meantime I just take everything one day at a time, recognize my limitations, and tell my doctor when things do get worse or I think medication is no longer working. A good doctor is worth millions and if your doctor doesn't listen or work with you find another, bad ones are a dime a dozen and it can take some looking.

     
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    Old 04-08-2015, 07:37 AM   #7
    ladybud
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    Re: Help?

    Eric, you have received several nice, supportive comments, and the only addition I can offer is similar to the last post, of making sure your original diagnosis is correct (still). Many people with autoimmune diseases get diagnosed with fibromyalgia early on, then their symptoms change or worsen and the diagnosis is never questioned again. Males in particular are subject to this because diseases like lupus affect women 9:1 to males, so Drs. don't even think about testing for it. It takes repeat testing over years to truly rule it out, as it can take a long time for antibodies to show up in serum. So I would encourage you to ask for a second opinion or press for retesting for autoimmune diseases if it has been awhile, since there are more specific treatments for those compared to fibromyalgia. It could turn your life around if the fibromyalgia diagnosis no longer fits your picture. Hang in there and be assertive about your health care if the status quo isn't tolerable.

     
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    Old 04-09-2015, 07:10 AM   #8
    bustnova
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    Re: Help?

    I am 52 and just diagnosed with fibro. I have been started on Savella and it helps me with my pain. I am allergic to hydrocodone, codeine and tramadol so I am limited to what I can take. This helps to make my pain tolerable. I love horseback riding and the fact that I was in too much pain to care for my horse is what took me to the doctor. I am in the process of buying a lightweight saddle that I can carry without too much difficulty to resume riding. You might ask about this drug. It could help you. I wish you all the best and pray that you get relief.

     
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    Old 04-09-2015, 12:52 PM   #9
    demmi77
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    Re: Help?

    I wish you the best with the Savella. When I was first diagnosed I was started on Savella and, likewise, I did feel that it helped. However, the benefit was only temporary. About a year later I ended up asking my doctor to come off of it because it was expensive and I thought it wasn't helping. When I came off of it, just like I thought, I didn't experience any change in symptoms at all versus taking it.

     
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    Old 04-18-2015, 04:36 PM   #10
    catkaru
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    Re: Help?

    He All! Fibro for too long here! I too took Savella. It does and did give me a better bit of energy, but I found it too expensive even with Ins. I am currently taking Lyrica since 2007. If you can help it, try to stay away from this drug. I am 61 and have been on Lyrica so long that if I miss 2 doses due to finance I am a basket case from hell. I now feel I have to be on this drug the rest of my life or be in a controlled medical enviorment going off it. I'll try to follow your convo if it goes on and hope things get better for you soon.
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    Dx'd with Fibro 2007
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    Old 04-19-2015, 04:14 AM   #11
    Thaddeus88
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    Re: Help?

    Quote:
    Originally Posted by Eric S View Post
    Hi, I'm 29 and have been going through fibromyalgia for ten years now. I hav tried every drug, every therapy, and generally everything i can think of. This disease is truly a living hell and has left me basically helpless.

    I'm basically posting here out of desperation, I don't want to die, I want to live my life, yet this disease has robbed me of any chance to do so. Even interacting with people completely wears me out within minutes, let alone trying to do physical work.

    Has anyone actually gotten through this, and if so, what did you do? Maybe there's something i missed

    Thanks for reading, best wishes to you all
    you to get your body making more Glutathione which is your bodies own natural antioxidant which happens to be the strongest known to mankind.
    Yes I can help you, what country do you live in?

     
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    Old 04-20-2015, 07:40 AM   #12
    momzworkin
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    Re: Help?

    Glutathioneis really only effective if given in an IV by a doctor. Taken orally it does not absorb in to you system. Please don't take anything without talking to your doctor first!!!!
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    Old 04-20-2015, 02:18 PM   #13
    Thaddeus88
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    Re: Help?

    Please read my comment again as I never mentioned taking Glutathione.

    You are correct when you say Glutathione is destroyed by the stomach acid and to complete your statement for you, the molecule is to big to penetrate the cell so it cant do what its intended to do.

    Since the Molecule is to big to enter the cell a Doctor giving IV is not properly effective either as it only lasts a very short while.

    The secret it getting the body to make more which has been accomplished.

    I and many others are living testimonies to this fact.

     
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