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How about a fibro topic?

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  • How about a fibro topic?

    I will admit that my AA topic has been a total flop, maybe we could replace it with a topic for fibro. I know that mine has been unbearable after my staged interstim trial in October and it's getting worse, not better, day by day. I have searched and searched for other sites but I feel so at home right here. I know that there are other girls who are suffering horric unending pain with this disease along with the IC you think we could make room for it??
    Please, pretty pretty please..............
    Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".

  • #2
    Hey Teri --

    So you have fibro?

    I have some new symptoms & am wondering if its fibro & if not -- I wanted to see if you have any ideas.

    In addition to IC & IBS, I also have PFD. From that, I feel like my pelvic/abdomen spasms are so hard at times that it is clamping down on the nerves in my legs -- quite often I get nerve pain shooting down my legs & into my feet. The PFD have knocked my hips out of alighment (according to my PT trained in IC/PFD issues -- but not according to my chiropractor. Hmmm.) AND I've complianed to my pain doc that my spasms have felt so intense that it feels like my ribs are apparently searching for ** so they can drill me out a new ***!

    And then I started waking up every morning with pain at my sternum (bone in between the boobs)and achy nerve pain down my left arm - most specifically at my joints.

    At the same time I started getting nerve pain under my left scapula. Of course I told my *** pain doc about those new symptoms at my last appt & he didn't move*** to even touch me. He said all those were "secondary" symptoms & we weren't worried about them. But then several hours later when I started having chest pains & had to go to ER thinking I might be having a heart attack -- yeah, I was a little worried. Turns out, one of my ribs had popped out of place, causing me chest wall pain. No doubt that was another chain reaction caused by the PFD -- at least that's what I & the ER doc (a D.O.) thought.

    My reg. doc said I had "costochondritis" (inflammation of rib muscles) and that's why I was feeling the pain in my chest. OK. She said I needed to see a chiropractor. I said OK. I went. He has popped the crap out of me twice - but then this last time he tells me that he doesn't see any musculo-skeletal problems. Despite other ribs hurting me (I have now felt like one of my bottom ribs are poking into my lungs sometimes when I move a certain way or take a deep breath. Chiro says, "impossible") chiro says -- that I'm really not in bad shape - as far as muscles & skeletal system are concerned.

    I asked chiro about my trigger points. Cause I hurt just all over -- and it seems to change every day! I touch a muscle & it feels like its just so damned tight -- like so many muscles in my whole body are in a spasm now -- at least that's what I'm thinking. A lot of times I just ache so deeply. And other times I feel like I have hot knives in me. Or my feet will burn. Or I'll have that pins & needles tingling type pain down my arms. Or my fingertips will feel numb. Or the tip of my tongue will feel like its burning -- in the middle of the night -- like it's trying to mimic the burning neuropathy type pain in my foot. So I'm thinking -- hey, I AM going crazy. Pain doc says "trigger points are fine"; Chiro says, "trigger points are fine". Massage therapist says, "hey you've got some pretty intense trigger points." PT says, "I don't think you know how tight your butt muscles are..."

    I'm just so frustrated & confused. I know my confusion is based on getting all of these conflicting stories from these medical people and I'm frustrated cause as a massage therapist myself -- hell, you'd think I'd know what the hell they are talking about & what the hell is going on with me.

    That's why I called my former therapist & said I needed a second opinion when she said I was still sane. Cause damn it -- I don't want all this additional crap. There are times I'm really afraid that I might be getting some new kind of autoimmune disorder. I know that once you get one -- you're more likely to get another one.

    I have Hashimoto's thyroiditis. It's what destroyed my thyroid & now I have a permanent case of hypothyroidism.

    I'm going to take a list of my symptoms to my uro-gyno this week & hope to hell he can tell me something -- or send me to someone that might know. If not, I'm going to that Scott & White hospital that I told you about in another post.

    As far as fibro -- I read that in order for it to be a fibro diagnosis -- that you have to have like 11 out of 18 tender points. And from what I read -- it sounds like if somone just touches you at those points that it is extremely painful. That's not what's going on with me. I can hurt -- but it feels like a deep achy, nerve pain that sometimes "burns". So what the hell?

    Got any ideas?

    Hope you're doing OK.

    Love ya, sweetie.


    • #3
      Donna and Terri
      Im with you all the way on this fibro stuff. I have gotten the same type of run around with my drs. I dont know I have basicly gave up. Because I have kept complaning thou they are sending me to pain managment for everything from my ic to hernias(if that is how you spell it). Just because they said they don't know what else to do at this point.


      • #4
        Took my many many years to finally get my fibro dx and I was actually relieved when I got pain is INTENSE BURNING thru out my body. At times it's painful to have clothing touch my skin. At other times I'm not sure if the IC pain or the Fibro pain is going to take me out.
        The only relief that I've gotten has been from the B & O suppositories. My uro was quite surprised by this but it's helping. Without it I could never beable to get up off my bathroom floor. I have all the 'points' except the ones behind the knees. For years was treated for many things that I didn't have. Was told to take time off of work because I was just over stressed etc etc etc.
        Now the problem that I'm having is trying to satisfy the people in my family who want me to keep dr hopping until I find THE one....welp, THE one ain't out there and these family members don't know how hard it is to be told AGAIN that there is nothing that can be done.
        I haven't been able to find a message board as good as ours where I feel safe sharing like I do guys are my family and you don't hound me.
        I think a Fibro board could be helpful to soooooo many of us who suffer with these stinkin' diseases that seem to go hand in hand and suck just alittle bit more of our lives away each day.
        Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".


        • #5
 my family doctor told me today I have fibro....he thinks, no he's pretty sure, no he's positive BUT it may also be ms...sigh...this guys got a PHD, in what I dunno, cuz he sure don't seem like he knows nuthin!
          These are my "wierd" symptoms:
          a numbness like feeling in my left arm that comes and goes, achy feeling in my hands that comes and goes, numbness/tingling in my right thigh then sometimes in the left thigh, bottom of feet have begun to hurt, lower back pains for a few days then upper back pains, chest pains kinda like I pulled a muscle - also comes and goes, burning feeling in my body, sometimes intense pain to the touch in all those above mentioned areas - even the brushing of clothes against those areas hurt, left side of neck tender to the touch but doesn't hurt to swallow, hips hurt when I have slept on my side - either right or left and tender to the touch - causes BIG pain .....
          I've been given some kinda anti-depressent to take before bed, doc said this is what he gives as first course of treatment for fibro, best treatment is rest and since I'm already taking meds for chronic pain (IC), there's nothing else to do but wait to see if this new drug helps any.
          We need to run a bunch of other tests because he said fibro is process of elimination but first I have to finish cystistat treatments (have 2 left) - then I need surgery to get some kinda growth removed from my spine (haven't a clue to what it is - will know more after they remove it and do biopsy) - once I've gone through all that, then I can do the tests to make sure I dont have ms or anything else.... sigh....
          does this sound like fibro? or am I just like everyone else, going nuts with all these damn pains?