fibromyalgia questions

Discussion in 'Fibromyalgia Main Forum' started by moreinfoplease, Jun 12, 2008.

  1. moreinfoplease

    moreinfoplease New Member

    Hello, I have a question for those of you with more knowledge about fibromyalgia:

    Could I have fibromyalgia if I don't feel pain when I press on the designated tender points?

    Here is my situation:

    I have been trying to clarify my diagonsis for years now, and have thought myself that it is likely CFIDS.

    My neurologist said yesterday that the results of my recent sleep study shows alpha delta sleep, which he said is consistent with fibromyalgia.

    While I am open to the idea of other diagnoses, I don't think I have the tender point pain that is required for the diagnosis.

    I don't have pain when I press on the designated points.

    What I do have is all over pain--the type you would have if you had the flu or were hungover. This pain is worse when I am more fatigued.

    I have a lot of symptoms but the most problematic are fatigue, unrefreshing sleep, cognative impairment, orthostatic hypotension, and anxiety.

    The doctor is considering prescribing xyrem or trazadone for sleep, and possibly doing a daytime sleep study. He confesses this is not his area of expertise, and wants to consult with a colleague.

  2. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I don't know if an actual test has been done, but from my understanding, the "experts" in the field believe the same sleep patterns are seen in CFS as in FM.

    Here is a study results: http://content.karger.com/ProdukteDB/produkte.asp?Doi=119331

    Tina
  3. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Of course, the study didn't take those with FM. And we know that most people with CFS also have FM (of course, not all though) so this test which did not exclude FM patients to test only those with CFS only, may be skewed. The results may be because these people have FM along with CFS.

    Tina
  4. lvjesus

    lvjesus Member

    It is so hard to remember what my first symptoms were, but fatigue is the one I remember sending me to the doctor first. I noticed I was tired a lot and the doc thought it might be depression and I thought maybe it was too, so I tried St. John's wart while he did blood tests to check my thyroid. They were negative.

    The next attention getting symptom I remember is the day after one of my aerobic classes. My leg muscles were SORE. I mean sore like I had worked out for hours yet in reality, I had not done more than any other time and I had been taking this class 2 times a week for 3 years.

    There were other strange things too, but as you probably know, there are a lot of weird symptoms that seem totally unrealated but all stem from Fibro. Like me noticing that the vision in my left eye was blurry and thinking it was time for me to get glasses. So I went to the eye doctor, got a script, got my glasses, they were wrong, got another script (I think that was the docs fault), and 2 weeks later I was working and noticed I could not see clearly, kept cleaning my glasses, finally took them off and, guess what? I could see fine again. HUH? I thought, who's eyes get BETTER???

    I also was at the doc's, but can't remember exactly what took me there, and he pressed a spot on my spine and I about when through the roof! He sent me for an xray which showed some arthritis in my spine but not enough to cause that much pain.

    Where the DX came in is that I had chest pain, or rather pressure, one day and called my doc, who said go the the ER. Turns out my heart was okay, but when the ER doc pressed that spot in the middle of my back and I jumped off the table,she casually mentioned it "might be FM".

    Well, I went on the internet and started researching it, because of course I had never heard of it, and as I read through the list of symptoms I just sat there nodding my head. So I went back to the docotor, asked him what he thought the chances were of me having FM and after some more blood tests, he DX'D me and started me on Elavil.

    That is all he gave me intially and I started on a bunch of supps and eventually got some pain pills from him and Klonopin from a rhuemy. I do have one tender point that comes and goes in my back, left side above my butt that I have had off and on for years but had no idea what it was. I would just put my finger on it while standing with my hands on my hips, or whatever, and notice it and wonder what it was, cause it is sore like a bruise, but without injury.

    Now, as for tender points, look for them if you like, but I don't recommend it. Of course, I guess you gotta know. Anyway, I have not noticed a lot of the points that are mentioned, but one day I was reading something about tender points at the elbow and thought to myself, I don't have that one, started poking and WOW I DID!!! Well, of course I knew it the rest of the day because it hurt!!! LOL I thought it might not be a good idea to look for any more!!!

    Anyway, I know that is long and don't know if it helps or not! Good luck, either dx is nasty.

    God Bless,
    Sonya
  5. moreinfoplease

    moreinfoplease New Member

    all for sharing your experiences.

    Tina, I took a look at the study, thank you. I think you are right, the way they included participants it make it hard to draw a firm conclusion, but is nice to know that the experts view alpha delta sleep pattern as related to CFIDS as well as Fibro.

    Sonya, it sounds like you had pain in some of the designated points, but did not realize it, and did not have pain in all or maybe even a lot of the points. I think the diagnosis calls for 11 or 18 points. Do you think you had that many? Or maybe you don't want to know :) which I can understand!

    Jam, you say that your pain is bodywide, that is like me, so I guess I am confused about the diagnosis criteria. Along with bodywide pain did you have pain in the tender points? About.com lists them like this:

    "Tender points are specific places on the body (18 specific points at 9 bilateral locations) that are exceptionally sensitive to the touch in people with fibromyalgia upon examination by a doctor."
    Tender points of fibromyalgia exist at these nine bilateral muscle locations:


    "Low Cervical Region: (front neck area) at anterior aspect of the interspaces between the transverse processes of C5-C7.
    Second Rib: (front chest area) at second costochondral junctions.
    Occiput: (back of the neck) at suboccipital muscle insertions.
    Trapezius Muscle: (back shoulder area) at midpoint of the upper border.
    Supraspinatus Muscle: (shoulder blade area) above the medial border of the scapular spine.
    Lateral Epicondyle: (elbow area) 2 cm distal to the lateral epicondyle.
    Gluteal: (rear end) at upper outer quadrant of the buttocks.
    Greater Trochanter: (rear hip) posterior to the greater trochanteric prominence.
    Knee: (knee area) at the medial fat pad proximal to the joint line."


  6. lvjesus

    lvjesus Member

    Trust me, I gottem! LOL I am in a flare right now and can find 6 just by lightly touching, with no pressure, and could probably find others with some pressure, which makes them ache, so I don't think it is worth it just to be able to say that they are there!

    I lightly explored the ones that I knew about last night just to gauge the severity of this flare right now. It is funny how before I got dx'd that my dh would press one of these spots and I would say, HEY that hurts! and he would say, no it doesn't! Now I know why it hurt when it should not have.

    For years he would playfully grab my knee and it would hurt there on the inside out of proportion to the pressure. Tender points. I had some on my back above my buttocks for years and am right now remembering more of the bizarre happenings leading to my dx.

    It was the tender points. I had that one on my back above my shoulder blade and actually had one under my arm that the doc called "possible chest wall bruising" cause he had no idea and right after that visit, I awoke to what felt like a tight band around my chest. It is all coming back to me now... The fatigue, then this "soreness" had me going to the doc quite frequently until my dx and then I started my own research and basically only go when I need something that I can't get on my own because it is prescription. I am going back on Thursday for issues with my pain pills.
  7. moreinfoplease

    moreinfoplease New Member

    without having the tender points pain? "just" overall achiness?
  8. lvjesus

    lvjesus Member

    I had tender points but my PCP dx'd me and did not check them. The rhuemy did, but that was some time later when I went to my PCP for Klonopin and he did not want to prescribe it.
  9. moreinfoplease

    moreinfoplease New Member

    anyone else has been diagnosed with fibro without having the tender points pain? "just" overall achiness?
  10. wanderingbluedragon

    wanderingbluedragon New Member

    I'm not sure how much you have researched FM or ME/CFS, but in CFS you can have all over achey pain, fatigue, sleep problems, memory problems, orthostatic hypotension and I don't know anyone with a chronic illness that doesn't have some type of depression or anxiety.

    The funny part about that is that is what it normally gets pinned on, but it is actually caused from having the chronic illness.

    Of course both FM and ME/CFS do not have any definitive tests that say "yes! this is what you have". At least no tests that are done outside of the research area.

    There are some really good articles on this website regarding the two and also you can google them and come up with an array of information.

    I don't see a problem with him trying to help your sleep, it is something we all struggle with with these disorders.

    Has he tested you for Epstein Barr? I also have chronic EBV on top of FM and ME/CFS. Yes, they are not related all though they think that either they are similar or that EBV can trigger them.

    I also read and interesting study that said people they tested with FM had a high incidence of neck injury at some point and that this could be a factor.

    Since I had to have cervical spine surgery a year ago, I feel that there might be some merrit in that hypothesis.

    I did a sleep study and found out that I don't have sleep apnea. I also found out that there are over 200 different kinds of sleep disorders, ouch.

    If your doc feels way out of his element, you could try a rheumatologist. I hear that they are very good at dealing with this type of pain. They may think of something that your GP hasn't thought of.

    Best wishes,

    Blue