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Where Do I start?

JustPeachyJJustPeachy Posts: 2
edited 06/11/2012 - 8:43 AM in Fibromyalgia
I was recently diagnosed with Fibromyalgia and am not sure where to start...I guess I am still in denial although the brochure that the doctor gave me about Fibromyalgia seems to be written just for me. So far most doctors that I have seen seem to have spent the better part of their college days standing on their heads next to the beer keg. So when I can stop crying over this where do I go from there? What are the first steps I should take towards beating this disease from hell?


  • Howdy JustPeachy!

    Welcome to Spine-Health! Glad to have you aboard! I am sorry to hear that you have been diagnosed with Fibromyalgia. I know there are different "grades" or levels of this disease. A co-worker of mine has been dealing with Fibro now for about 3 years. She was put on Lyrica (I think a few other drugs first - this works for her), and from what she told me, 85% of the time, she almost forgets she has it.

    I am hoping that lets you know that not all diagnosed with this are 'sentenced' to a life of pain. I hope that they find a nerve medicine that works well for you. Also, on this site if you do a search, there is more information, some of which is put here via doctors that own this site. Other areas you will find is other members with Fibromyalgia. The good and the sad of this board? You most likely will find others with the same or similar spine and nerve issues - the good - support and understanding. Again, Welcome aboard!!! I hope you find this to be an addition to your home. Take care. :-) *HUG*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • hiya peachy
    The first steps are the hardest with this hell fibro
    you will get alot of bad docs who will put you on all the tv meds.for fibro.. i have tried them all and with so many meds they have alot of side affects.
    i found a great neuro and rheumo doc and they have helped me come to tearms..with this..
    i also was in denial for months i was diagnosed after many many exams and all the blood work to rule out other things..
    i found from a lovely supportive ppl in here that you need to say goodbye to the person you were.
    some ppl a mix of meds work, for me the side affects are not worth it..
    so i do some yoga and swim exercises..which you have to do in very min times a day..
    at first for few months i was so nausa and i did get some relief w/prozac an anti-depressant ..
    i believe that also helped me outta my dark hole i found myself in for awhile..
    pls feel free to pm me and there are some great support systems out there..
    i also have lower back and neck issues and i had a very busy life.
    went from running my household,, and all my kids stuff and worked 2 part-time jobs..
    now nothing my legs are so bad most days hard to even get ouuta bed..but i do and gotta keep moving
    when you come to know more about "the hell" called fibro you have to find your own way of dealing its so very hard..and there also is a fibro letter i can send you for you to give family n friends to help them understand
    your not alone
    neck,bone spurs pain started 04, back issues and fusion l4,l5 06~hardware removed.
    good few yrs. 09 pain sharp, numbness feet,legs, diagnosed fibro, neurop. legs.lung issues.
    daily goal do good thing for someone.
  • Hi there,

    Sorry to hear about your diagonsis. You don't have to stop crying to find the next step...heck, you already took the first step by reaching out on this board. You are already doing better than you think!

    I know it stinks but having a diagnosis means you can now make decisions on how to proceed. I have a cousin (well step cousin) that was diagnosed with this. I know she is doing very well and will ask her for input.

    I know there are meds that can certainly help with this, such as neurotonin or Lyrica. I suspect there are non-drug options that can help too.

    We are here for you!
  • So sorry to hear you have this horrible disease. I've had it for years, and there are many ways to cope!

    I've found what works best for me is to find the right doc to help you with this. My rheumatologist is fantastic! I see him every 4-6 weeks, and every time we discuss meds, exercise, PT, and diet, to name a few. What I've found is mostly by trial and error.

    I'm currently on Neurontin. My rheumy and I have decided to wait until my other issues have settled down before we try any new SSRI's. I also have Lunesta for when the insomnia gets too bad. One of the key things I've found is to make sure you get enough sleep. If you're not sleeping well, it tends to ramp up the pain, at least in my case.

    Find a doc that you're comfortable with, and that understands the disease. Try keeping a daily diary of how you're feeling, even if you're having a good day. This will help you and the doc know what's working well for you, and what's causing pain, eventually. Talk with him about what type of treatment he can recommend, and if it's not something you want to do, tell him so. A lot of the docs I've gone to have been basically pill pushers, and aren't really interested in working with you for months to figure out what is going to work for you.

    Feel free to PM me any time, if you like. Believe me, even after all these years I still cry once in a while about it. Keep us posted, and I hope you have a pain light day!
  • Hi,
    I know your diagnosis was troubling. I was diagnosed about 8 years ago. I also have had lumbar and cervical fusions. However the fatigue and pain from the fibro is so unrelenting, it is like a constant enemy. I want you to know we are out here to lend support. I know this past week, my fatigue has increased. It's scary. I worry, when will I get my energy back. Will the pain drop down to a tolerable level? If you have questions, feel free to pm me.
    Take care and blessings to you.
  • It's always difficult to find out you have a chronic illness.

    I've had Fibromyalgia for a long time. Most people get better, some go into full remission and the medications, therapies and information on Fibromyalgia is exploding right now. Keep in mind that most of the people you'll run into online are the ones who have it the worst - the other ones are still leading full, productive lives & don't have time to be online. Four of the nurses at my doctor's office have it and they're still moving full steam ahead.

    Most medications have side effects but if you take them for at least six weeks, they'll go away as your body adjusts. It would be a good idea to keep a journal of medications you try and log the side effects - both good & bad so that in the future, you can refer to it. Sometimes, side effects that we find unacceptable in the beginning are later acceptable. (As is with any illness, really) Most people with FMS are sensitive to chemicals/ medications so simply starting with the smallest dose possible may help you a great deal. You can cut some medications in half to ease your transition onto them but discuss it with your doctor first.

    Rheumatologist specialize in Fibromyalgia but a primary care doctor can treat you, as well. Mine has been awesome.

    Learn to listen to your body and give it what it needs. If you're tired, rest by slowing down or lying down...whichever is possible. It will help you pace yourself better and you won't fatigue as easily. If you keep the journal of medications, it will help you identify if your fatigue is from the medications or the Fibro.

    Eat well, exercise and breathe in as much fresh air as you can!


  • dilaurodilauro ConnecticutPosts: 9,839
    then your more common spinal disc problems.

    Anytime you have a condition that involves the central nervous system it becomes more difficult to identify , treat and eliminate.

    One thing that makes it more difficult is that the symptoms people suffer from are so wide ranged.

    Take a look at some of these Spine-Health articles:

    Fibromyalgia Overview

    Defining Fibromyalgia Characteristics

    As with any chronic condition, it is always so helpful that you find some type of support group.
    Spine-Health can provide this for you. But also look for other support groups, locally, so that you can talk to others face to face that experience the same as you do.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
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