Debunking Fibromyalgia Treatment Myths

NewLifeOutlookNewLifeOutlook New Life Outlook
edited July 2017 in Awareness


  • niagginiaggi Member
    I was reading the article Debunking Fibromyalgia Treatment Myths and I was thinking FINALLY an article that understands how it is. Until the end. The last few paragraphs really ruined it for me. I go on a lot of support sites and there are lots of people that have not found any relief at all. They have tried everything they possibly can and nothing has helped. I take pain medication that gives me enough relief so I can function most doesn't take away all the pain because I don't want to be a zombie or be high but it does help a bit. But I don't know how much longer I will be able to get that because the doctors don't want to give them , they say pain meds don't work for fibromyalgia. And all the laws the government is doing because of the people that abuse drugs makes the doctors afraid to give them. All I know is it does help my pain when nothing else that I have tried worked. Exercise because you are in pain after you exercise so that doesn't work for a lot of people with fibromyalgia. Please remember that there are a lot of people that still have no relief at all from this awful disease.
  • So very true. I wish there was a cure so much. Though I think in my case it would require brain surgery. Whether my muscle contraction are reacting to arthritis pain or just any pressure I put on any part of my body I just do not know? Needles hurt and I seem to have a strong pain memory of where I have been stuck with needles so acupuncture isn't something I am getting excited about. Besides, it would require many regular visits. Sadly still Medicare won't cover massage therapy. This does help immensely to ease a flare-up but it is expensive to maintain. Honestly it is less expensive then an emergency room visit but ah...they need a better medical lobby I guess. On a regular basis medication is the less intrusive way to go since the pain is everyday.

    I still am finding it difficult to do many things I use to do everyday out of fear of having an accidental fall or causing a flare-up. I too have had hit and miss experiences with medication. Some help, some have no effect or one I just tried knocked me out so badly I was just passing out where I was and waking up hours later. I tried it for a couple of months and then just decided it isn't going to work for me.

    Right now I am still dealing with my frustration over not being about to take Vicodin any longer. I understand it can become addicting but it hadn't been for me. I had no withdrawal problems from stopping it but now I have take a lot of Tylanol to replace just one pill if I want to go out and do anything on top of my regular medication. I am all for something new but there doesn't seem to be anything else that is that strong without side effects. And now I have to use laxatives on almost a daily basis. One of the problems I have is my muscles contracting so much that it effects my bowels. Vicodin for me worked as a muscle relaxer/pain reliever since I have osteoarthritis in many different places as well.

    One of the hardest situations for me too is trying to explain my illness'. In my case it isn't just FM but premature arthritis, damage from being hit with a board and a belt some in my childhood. Just the notion that I must have been a bad child to earn such drastic punishment actually makes me mad. I always feel the need to explain that I was an honor roll student who was put into the hands of a criminal who wanted to groom me to be ...something terrifying in my mind at least. So I don't just have the burden of FM, which is actually hereditary in our family, but the other problems that were associated with some child abuse.

    I use to never speak about child abuse, it has no relationship to my FM which was observed as a toddler but not recognized because it wasn't given a name in the 60's, I didn't want to have to deal with others assumptions about me. In time though I realized there are many others, not just a few, children suffering from this terrible form of child abuse. I had FM symptoms all through my childhood into my adult life. There are instances, especially with extremely painful menstrual cramps, where being diagnosed early might have made my life easier. Understanding why I suddenly could no longer endure running any longer. Why my immune system was so weak. Why it was so important that I space out my pregnancies. Though that was almost impossible since I could not handle the side effect of the pill back then. IUD was too painful. Fate being what it is, for me getting the flu about six months after my third pregnancy was the beginning of the end of my career. It was too much for me and my pain level had finally reached a point that taking aspirin, Motrin was not enough. The pain was just too distracting and it was ruining my concentration. My dexterity too was greatly compromised. Most of all my frustration level was very high because it was obvious that I just couldn't do many of the things I was used to doing on a daily basis well any longer.

    I am sure we are all waiting patiently for a way to be able to control FM. I tell people now it is like MS and CP. You cannot control the symptoms. All we can do is try to manage them the best that we can. I am very grateful that finally the CDC has decided FM is worth the effort to try to work on ways to improve our quality of life. Right now I am very frustrated because I believe the Marijuana investors are going full force in their campaign to criminalize opiates to push suffers like us into using their drug of choice. I do not take medication to either check out of reality or to get high. What improves my mood? Is being able to do the things that need to be done and to be able to do some of the things I enjoy doing without having to experience the dread that comes from having to stop or check out of an activity because of pain or the risk of causing a flare-up.

    If I was much older many of my limitations wouldn't stand out so much around people who do not suffer as we do. Because this illness can affect us at such a young age it makes us stand out. I do not enjoy attention from having to bow out of something due to pain or risk of being bedridden. People resent you, some pity you, others need a lengthy explanation that will soon become that question they wish they didn't ask.

    Like most disabled people you want to be able to participate in activities. It isn't that I want special treatment. For me I just would like to be able to bow out gracefully without feeling I am being judged. Without people comparing themselves to me, like mentioned here, who believe they have the cure and know something I don't.

    I think something many people do not understand is that the medication available to us right now does not prevent pain from occurring. It only masks it enough so that we can do some things. For me it doesn't take away my responsibility to monitor what I am doing and making sure I stop when my pain level reaches a certain point so I do not cause any of my muscles to freeze up. I know when I push my limits my only choice is to go to the emergency room for morphine shots. Sadly, my regular physician cannot administer that kind of medication. Rest will not work if I go too far. Putting off getting a shot only causes the stiffness to start spreading to adjacent body areas as my body tries to protect whatever part of it is flaring up.

    I always feel a bit of guilt, not as much as before, with having to go to the emergency room. I can't help but feeling like I will be judged as some drug addict. Honestly, I haven't been treated outwardly like that. Since my doctors understand how difficult it is to put aside some kinds of work that can cause a flare-up. Still I always have that feeling that I screwed up. I should have stopped what I was doing sooner. But things like moving, a lost child, getting rear ended by a reckless driver, even finding you have to walk further then you expected to have to walk and you really cannot afford to use Uber to rescue you is just a reality you sometimes just cannot avoid.

    Reality is because FM is so difficult for people to understand they are going to keep offering advice. It helps to build up this kind of shell so you can thank them and explain that if there was a cure we are the first people who get the news. Most of these people are well meaning. Part of the frustration I think we feel is coming from our own personal levels of frustration because I know I want to be able to do the things I used to be able to do so much. Reality tells me I just cannot. Nothing is more boring then talking about what hurts today. It is rarely the same places from one day to the next unless one area is really flaring up. Often, if I can accomplish just the most important task of the day I am grateful. If I get through three or more? That is a good day.
  • There is a doctor whose name is Dr. Dantini, who himself has had fibromyalgia for over 20 years. He invested himself and his resources in finding the root cause of fibromyalgia. He isolated four specific viruses. Following the treatment plan that he lays out in his book called The New Fibromyalgia Remedy I have been in remission for well over 3 years, with only 3 minor lapses, for which he says to go back on the antiviral medication and sure thing, I was back intermission within no longer than a few days on the antivirals. This is not an exaggeration. He has a 70% success rate. It's worth getting his book, which is not expensive and is a paperback. Just a reading others' experiences with FM takes me right back to when I had no good days at all. Once you are in remission, 2 bad days signals a flare-up and you go back on antivirals. I'm desperate to get this information out to all of you who suffer. Good luck! Best of health to you!

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