Pain Question...I'm so confused

Discussion in 'Fibromyalgia Main Forum' started by TerryS, Sep 2, 2006.

  1. TerryS

    TerryS Member

    I'm new to this board. Came here when my ENT said he thought I had CFS due to chronic/reactivated epstein barr and recurring bouts of fatigue.

    I have pain in my extremities now for years. It's usually an annyoing ache, but lately it's varied from moderate to extreme. My lower extremities are the worse...from my most lower back all the way down my legs. The pain IS NOT affected by movement. So, that makes me can't be muscular then, can it? So, is it neuro? I also have distinct pain in my knees and ankles that can come and go very quickly and is more deep and extreme.

    My question is - the pain that accompanies FM and CFS, is it like this, or am I totally on the wrong board???

    I'm miserable. I just want all this to go away. I tired of it all...but every year/month it seems to get worse.

  2. findmind

    findmind New Member

    Yes, terry, cfs can cause terrible pain, especially in the extremities. Lots of us have peripheral neuropathies, I do.

    You might try neurontin/gabapentin. It has helped me a lot. One can take a very high dose (start with a low one) without any side effects, at least not for me.

    Many have pooling of blood in the legs, and elevating them often helps; lounge chairs, crosswise on sofa, pillows under legs in bed, etc.

    cfs causes pain everywhere sometimes; that's why it's so identified with the flu; you can ache all over so badly!

    I'm sorry you are feeling this. Have you looked into an antiviral with your dr? Or antibiotic therapy? You could search this site for more info, there's lots of it here.

    Take good care of yourself, and pace your energy with lots of time off and time outs, ok?

    Best to you,
  3. TerryS

    TerryS Member

    WHAT A REVELATION! You helped me find MY mind!

    I've been suffering with these pains since recovering from rheumatic fever at age 10. They become progressively worse over the years (now in my 40s) include, within the last few years (and this past year especially) muscle weakness. The pain I've been in the past couple of weeks is unprecidented.

    I HAD NO IDEA all along that this could be neuro in nature. I always felt like it wasn't muscular...but thought maybe it was coming from deep within (the bones, in other words).

    I was sooooo miserable all day today and finally started putting two and two together. Can't be muscular because it doesn't change when I move...finally had a thought that it could be from the nerves!!! (And I'm a medical transcriptionist for heaven's sake...think I could have figured this out years ago!)

    Anyhow, then I got confused 'cause I thought CFS pain had to be muscular.


    I spent 3 hours at my PCP's on Friday. He has set me up with a neurologist in a couple of weeks, so I'll wait to see what the neuro says. I'm also having a CT scan of the brain (for my chronic/acute dizziness that began a few months ago) and a nuclear stress test (which is good 'cause I have mitral valve prolapse and have been having chest pains). Also have an appointment with a rheumatologist later this month.

    Surely to goodness I will get some answers (and some relief) soon!


  4. mrdad

    mrdad New Member

    Unfortunately you're describing the symptoms that most
    of us have. As I mentioned, I don't think I have the FM
    but do the CFS. I'll get almost constant aches (Like Flu)
    as well as sharp short pains in my knee caps etc. But
    these can also be a demostration of Hemochromatosis or
    Ironoverload that I mention to you when coming 1st to the
    Board. It is an E-Z blood test to determine it. Light-
    headedness goes also with the territory here!

    Did you have these symptoms before coming down with that
    viral illness to any degree? Write back at your conven-
    inance. OK? I know it's getting late back there. Say hello
    to Paula Zahn at CNN and tell her I'm ready for that in-
    terview and the lunch she promised me!!

    Take Care,
  5. TerryS

    TerryS Member

    See my post (above) to FindMind.

    I've been miserable ALL DAY AND NIGHT.

    My PCP gave me some Lunesta yesterday and boy did it bring on some awesome good sleep last night. First time in weeks I didn't have to lie there for hours miserable from the pain.

    This new found revelation has brought me hope...although, that's probably pretty naive of me. I've been searching for answers to this pain for the last 35 years!!! At least I know what system is defective now and so maybe I can get some appropriate help for the pain!!!

    Talk to you later!
  6. TerryS

    TerryS Member

    Yeah, I'm having lunch with Paula on Tuesday. I'll pass on the word to her!!! (HaHa). --- Now, you KNOW I don't watch CNN...I'm a Fox News junkie!!! (But I definitely support Coca-Cola...this is Coke Central, you know!)

    So, I've read about your iron problem...sounds pretty scary. I don't EVEN want to go there. I have enough of an exotic medical history, thank you very much!!! When I finish my workup and they STILL HAVEN'T FOUND ANYTHING, I'll consider mentioning it...YIKES! (I think I'll take the CFS, please).

    The only symptom I had prior to my cytomegalovirus was the pain in the extremities. That started after the rheumatic fever, but was very mild in comparison to what it is now. First it was just in my ankles, then progressed to include my knees, as well as the last few years it took over my entire leg...NOW, just in the last month, has gone into the lowest part of my back.

    Once I got the CMV, I never regained my full energy level. About 15 months ago, I had my first episode of total exhaustion, extreme arm and leg pain and weakness. I've had multiple other episodes...but never lasting more than a couple of days...until now.

    I've been out of work for two PCP extended my leave indefinitely to get an extensive workup. BUT I'm in more pain now than I was when I first went on leave.

    By the way, did you ever take a look at the new pic on my profile? I put it there just for you!

  7. mrdad

    mrdad New Member

    The WoW-WoW is really cute but it's not an even trade

    by any means!! Maybe we can get both of you in the

    next pic!!??

  8. TerryS

    TerryS Member

    We'll see about a new pic after everyone's had time to ooh and ahh over my baby!

    Night-night time in HotLanta!

    Talk to you later,


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