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    literature confirming fibro as a true disease
    jford74 posted:
    Hi all

    I dont have fibromyalgia and to be completely honest I have for a long time been a sceptic as to its validity. Ive thought that fibromyalgia isnt real.... although the pain is clearly real and debilitating. I know that recent research has more clearly defined fibro as a real condition. Can anyone point me in the direction of this reasearch?? Please please dont take offense to my language. .... im not trying to discount anybody or hurt anybodys feelings. Im juat trying to understand. If my terminology is derogatory or hurtful it was not my intent. I also suffer from chronic pain and have to take narcotics just to get out of bed (sacroiliitis). I know how devastating daily pain can be. I guess i n just tryingvto understand the "mechanics" underlying this painful condition. Thanks!
    An_250606 responded:
    How rude!
    jford74 replied to An_250606's response:
    dollbug responded:
    Hello.....interesting that you are here to find out about the wrath of the dragon, aka FM....are you just curious? Those of us who face it each and every day do not always understand how and why it causes such pain and fatigue...Perhaps you can click on the 674 discussions that Dr. P provided the website with. I do not think he is here any we have not had any contact with him in a very long time. Oh, by the way....he knows and understands it quite well. He not only treats it, he also has it. He has also written several books about it. So perhaps if you really want to learn more about it.....go online and order some of his books...I am sure you will learn a lot about FM.

    Actually, IF you do not have to deal with this mean and ugly illness every day, you have NO CLUE what kind of pain and suffering that we face daily. Most doctors do not understand and as I said in the beginning....some of us, FMers, do not understand it completely.

    You can also *google it online*.....there is a lot of information on the internet about it.


    My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
    jford74 replied to dollbug's response:
    Thanks. I have googled but thought that maybe I could get a better understanding talking to people who actually have it. And I dont believe I ever said I KNOW how you feel.... not sure why you felt the need to tell me I have NO CLUE. but anyways can anyone tell me what the pain feels like? How long before you were diagnosed? And as for why im asking yes I am curious but also have other reasons. Thanks for the response!
    dollbug replied to jford74's response:
    So I guess I am sensing that perhaps you *think* you might also have FM...or perhaps you know someone you think might have it...those who have never walked in a FM'S shoes...have NO and friends have no clue and most doctors do not know just how this affects our daily normally takes a very *long* time for doctors to even figure out that our illness is FM. After other illnesses are ruled out and when the finally decide to do the *pressure point test*... I think it finally *clicks* for them.

    There are still a lot of doctors who do not believe that FM is an illness...but research also indicates that there are millions of people who have it.

    I started out with having carpal tunnel took the doctors over a year to figure out what was going on with this. I finally had EMG which indicated that I had problems and nothing that they tried helped me. I took medicine and went to therapy. I worked in a loan servicing company and did lot of computer work...over 8 hours a day...finally I had surgery for it and it helped some...but I still had a lot of pain. I have had 7 surgeries on my hands (2 of which were where I fell and broke both wrists, at different times) Only after I fell and broke my wrists did I finally improve with 3/4 of my pain finally going away. I still have some slight problems but nothing that I can not deal with.

    Besides this I have also had cervial (neck) surgery, parathyorid surgery, elbow surgery and knee surgeries...I am so much better now (pain) than I was back in 2004 when I first got sick. I have learned how to *control my FM pain* by taking vitamins and supplements and doing other things as well. It took me several years before I figured out what would and would not work. I also have chronic fatigue...and I have found nothing to help it yet. Actually my fatigue is much worse than my FM pain now.

    Vitamin D is one thing which is now a *favorite tip* that I share in almost every post that I make here. Low Vitamin D can cause additional pain for a lot of people...not only for those who have FM, but other people as well. My daughter also had chronic pain, due to a car accident that she had...she does not have FM, thank goodness...when she finally got her Vitamin D level checked...her life changed in several ways-for the better.

    I am sure that you can learn a lot about the wrath of the dragon here...check out the info under *tips* and *resources*...

    To get a better understanding of FM might be quite a HUGE challenge for you.

    Good luck.


    My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
    jford74 replied to dollbug's response:
    Thanks for the response. I think I saw that you are in nc? So am I! And no I dont have fm nor do I have sx. I do however suffer from chronic pain associated with ny back.... hence my comment about understanding how difficult it is to live with daily pain. My mris consistently showed nothing wad wrong until I found a wonderful comoassionate doctor who took the time to listen to me and prescribe the meds I need to work, be a good mom and wife, and live each day at a "4" as opposed to an agonizing 8 or 9. In not that old (31) and get angry at the card ive been dealt. My reason for trying to understand? 1. Curiosity (its a vague and highly stereotyped condition) 2. My MIL has it 3. This is the main reason..... im a clinical addictions therapist and I work in a. ethadone clinic. I have a patient who has FM. Our medical director does not believe that FM is real and insists that she is trying to just get as muc
    jford74 replied to jford74's response:
    Ehhh got cut off... anyhow he thinks she is just lazy and trying to get a bunch of methadone to get high. Her pain is just not control led at her current dose and im trying to advocate for her. As I said it breaks my heart ti see someone in pain but also because nobody believes her. And shes an interesting case given the addiction and the fact that she has a condition that requires (oftentimes) narcotic analgesics. Anyways I am gladvto hear your daughter does not have fm.... and it sounds like you are able to manage your pain. Just trying to understand, advocate, and help!
    jennagale76 replied to jford74's response:
    Hi jford~
    Fibro causes so many different symptoms, but the main ones for me are all over body pain and fatigue.I knew it was a real condition bc my step-dad had it, and I saw first hand what it did to him. Mine started with pregnancy. (though I had been having issues for years, it came out of hiding when I was pregnant.)

    It started in my knees, and rapidly prgressed to my back and shoulders. Horrible pain, tight muscles, I hurt so bad I couldn't (and sometimes still can't) tolerate a touch, a bra, or a fitted shirt. I get so tired that I can barely function, I feel like I have the flu all the time, without the vomiting. (though I HAVE vomited from pain before)

    Since then, it's moved on to the rest of my body, and it feels like a horrible muscle spasm in my whole body. Like cramps x 100 everywhere. Like a charley-horse. Sometimes I can't wash my hair or shave my legs because it hurts too bad to lift my arms or bend over.

    I go to bed exhausted, and I wake up feeling even more exhausted. I have 2 small children and a husband and a home to take care of, and it takes everything I have to push myself through each day.

    This is just what it's like for me, although I have numerous other associated conditions, the fibro is the worst. I feel guilty because I can't do so many things that I want to do for my kids and husband, and it makes me depressed because I lost 'me'. It's hard to explain what it does because it's so vast and overwhelming.

    Right now I'm in so much pain, it feels like someone ran over my lower back with a mack truck. I've taken 2 pain pills, a muscle relaxer, and used biofreeze. It's still terrible. Today is worse than yesterday, but it might be better tomorrow. You never know with fibro.
    Check out Dr. P's discussions, that will get you started. Good luck.
    jennagale76 replied to jennagale76's response:
    Also, try the Fibromyalgia Network, the National Fibromyalgia Assoc, and the American Chronic Pain Assoc. They have a ton of info.
    jennagale76 responded:
    jford74 replied to jennagale76's response:
    Thanks so much Jenna! Im so sorry you are feeling so bad. I can totally relate. My babies are 2 and 4 (a very young 2 and 4 at that). My back pain is excruciating at times. I take 20 mg of opana er twice daily and oxycodone 10/325mg 3x daily along with 600mg motin 3x daily and cymbalta. I get so sick of taking pills, living in a hot tub, ice packs, heating pads... blah blah blah. You know the drill lol I know how awful it can be to try to be super mom and somehow try to push thru the pain of the day. Anyhow I cant even fathom what it would be like to be in horrendous pain just by wearing a bre or fitted shirt. My heart truly breaks for you and people like my patient. I guess ghat I wss initially looking for research and the like but its more helpful to hear it from others like my patient. Reseach can be so impersonal. ... as it should be.... but anyhow I hope you get my point. How did you... or others.... get the medical community to take you seriously? Or is that still a constant battle?
    jennagale76 replied to jford74's response:
    You're welcome. My kids are 5, twins, a boy and a girl. If it weren't for them I'd probably be on the couch all day, every day, tightening up and getting worse and worse. For pain I take tramadol, soma, and I give myself injections of torodol about every 4 weeks. Sometimes I can keep the pain under control. Right now it is not. I also use heat, ben gay, jacuzzi soaks, and yoga. I've been REALLY tired for awhile now, so I've slacked off on the yoga. I need to get back into it, because it really does help with the pain.

    Clothing is one thing that really bothers me, and I also have burning, tingling nerve pain that is terrible. I feel itchy all the time, like bugs are crawling on me too. And I get very confused (fibro fog) a lot too. It makes me feel stupid but I can't help it.

    For research on the validity of fibro, google the above websites I provided and you'll find some. The mayo clinic link is good too.

    After going to a doctor that basically blew me off, I started going to Dr. P (the expert in this group), who also suffers from fibro. He's one of the best fibro Dr's in the country, so I'm very lucky to live in the same state. I travel 2 1/2 hours one way to see him, but my family lives in the area so I just stay with my mom when I have appts with him. I live in a rural, backward area, and could not find anyone to help me here.

    It's still a constant battle for MANY people, but luckily the medical community has come a long way in research and many doctors are now realizing that it's real. They think if they don't know what causes it, and can't cure it, we must be crazy. To me, that just shows the level of arrogance in doctors is pretty high.

    There are many theories as to what causes it, but I think it's all the preservatives, pesticides, toxins that we injest daily from what we eat. Combine that with a trauma to the body (ie pregnancy, stress, accidents, etc) and our body just flips out. I'm not really confident there will ever be a cure, but that would be a miracle.
    booch007 responded: don't insult me...we in this mess are used to people NOT GETTING IT. Do you think that we all make this up? It is real to us. We are just ahead of the curve, the scientific community is behind us.

    It is all about funding....we are quite the $$$ prize though as Cymbalta and Lyrica have been brough forward so will other research and meds to help straighten this out a bit.

    The other issue is once in the pain cycle you change your own body chemistry when it is chronic and you are up a creek again to help straighten it out and adjust it.

    Look in the American Jiournal of Medicine 2009 around December a good article in there. Look in the Neurology book of Travelle and Simons the bible on myofascial dysfunction and Pain. This was dry reading but I read the whole upper body book....(it is in 2 parts now due to new findings and data)

    Look in the last rheumatology conference to see where they are discussing the neurochemical issues that are occuring in this mess and that maybe neurology is the place for us to be tended to.

    I myself use nuerology , always have. I use trigger point therapy to allign my muscles and decrease my pain. It doesn't hold for long. Every two weeks I get shots. They range from 20-60 injections depending on active and latent sites that effect my range of motion and function. I am I think considered quite active in this mess. I was the charge nurse of the ICU at our large teaching hospital (tertiary facility). There was no way anyone was telling me there was nothing wrong with me...

    It was insidious at some point and then I got hurt lifting a patient as my main trigger and it has been a challenge and a half since.

    My nueologist I saw first didn't know what to do with me...said he'd give me anything I needed but ????what is wrong. His specialty was stroke (wrong fit) he then referred me to a new collegue who's speciaty was myofascial I spoke of my swallow issues and ROM issues and numb hands...chest pains...she showed me in Travelle what was the cause and effect.

    I be validated and get that FIT of physician that I needed. I have had injections ever since. I have a pretty full life except if I push too hard and do a stupid thing...but

    YES THIS IS REAL.....I have needed to increase from living with motrin only to dealing with this as a chemical issue and adjust my meds accordingly. No one in my life discounts I have a problem and my problem doesn't run my life. I fight it everyday.

    So no, I am not offended by your question....I hope my small offerings of places to look will help. If you lived near by I would give you all my literature as I was in denial that this was FOR THE REST OF MY LIFE.....I continued to hunt for the fix**.

    Now I am at a point that I am not "dragging this dragon around with me" But I am "Dancing with this dragon"..learning to accept the issues I have been handed.

    Good luck on your quest to answer your questions. Now just a disclaimer here....some patients too may not have this problem and are misdiagnosed and thrown in here as the doctor chooses to give up and not do the work. Many things can present as FM and not be. They have set certain criteria....

    Tough spot for all.......I feel for the docs I do, as much as I feel for the patients and their frustrations and pain. Nancy B
    booch007 replied to booch007's response:
    Now that i read all the other posts I just want to say that i am glad you are an advocate for patients and I am sorry you deal with back pain regularly. I am not good with that area. I just had a session and my injections took it away....for me it was muscle induced, but I couldn't put on my stockings, get on the was awful!

    FM is mutifaceted to fix. You need nurtitiion, hydration and nutrient replacement as well as some med help. Alot are on a muscle relaxant and brain chemical SSRI/SNRI med and somthing for pain. We use heat and many non medical adjustmants to walk in these shoes and we are all different in how it affects us.

    Each day can be different in what is not doing well with me.

    Take a look in the TOOLBOX: see if you learn from past posts and Mimi's idea of reading dr P's note in discussions was a great idea..........Good luck in this quest. Nancy B @

    Hope this helps. Nancy B RN.

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