Treatment of CFS vs. Fibro at FFC Centers

Discussion in 'Fibromyalgia Main Forum' started by bpmwriter, Aug 21, 2005.

  1. bpmwriter

    bpmwriter New Member

    'Morning all,

    i'm curious to hear from FFC patients being treated only for fibromyalgia with no diagnosis of CFS. i've been going to the center in atlanta for almost 3 months now, and have shown some improvements while other areas have worsened. we've identified some minor hormonal imbalances and my ebv titers are high, but no lyme, mycoplasma, etc. the problem is, i'm in constant pain. as far as i know, ebv does not cause myalgias; i'm just not convinced it's the source of pain problems. so what sort of assistance are people with only fibromyalgia receiving? i assume sleep meds and pain meds are the front line for fibro? my own independent research and self care has led me to the location of a number of trigger points in my neck, glutes and thighs that could very well be responsible for the majority of my pain problems. since they don't do bodywork at the fcc (i have to imagine it's only a matter of time), does it make sense to continue my treatment at the fcc? it seems to me that i ought to be searching for a super-knowledgeable bodyworker instead of filling up on costly anti-virals.

    thoughts? opinions??

  2. ldbgcoleman

    ldbgcoleman New Member

    I know one thing. I felt somewhat better but no dramatic results until I go into the 4th month. I think you need to be patient. I felt much worse at the beginning of my treatment especially when I started the FAmvir for the EBV but when I got over that hump voila big difference. Each of us is different and have these problems in varying degrees and for different lengths of time.

    I am getting a massage every two weeks seperately for myofascial pain release. It hurts a little during the massage but after feels much better. I have also followed all the reccomendations they have given me including diet and excersise. You have put the time and money into this for 3 months I would suggest you commit for a while longer and give it a chance to work. I am guessing you were told as I was it would be at least 4 months and up to a year to get results. Take Care Lynn
  3. bpmwriter

    bpmwriter New Member

    i'm always encouraged by your progress and pulling you for all the way that it will continue. i have my 4th appointment (on the phone) with dr. b on august 30 and intend on keeping it. mostly, i'm trying to gather my thoughts in order to ask the right questions. i could absolutely stick with it and try some bodywork on the side, but cost is a HUGE concern for me as i'm unemployed and uninsured. i just feel like with all my bloodwork done and prescriptions dealt out, where is the value in monthly check-ups that cost me $160? especially given that my pain levels are at an all-time high. when i discuss the pain with dr. b, she points to the chart showing how dysfunctional we are, and tells me the pain develops
    "somewhere" along the line??? i need better answers when it comes to the pain element.

  4. laura81655

    laura81655 New Member

    Hi eddie: I don't have CFS, although I tire easily from constant pain. I highly recommend that you try and find someone who does massage with a knowledge of fibro. I have finally found someone like this. I am going once a week for a month, then twice a month for awhile and then maybe once a month if the pain is more manageable. This does help my pain. I didn't go for six weeks and I paid for it. I have started back with once a week, and I feel a little better and I can do a little more. I guess I have to continue with the bodywork.

    I have been reading many FFC posts because I wonder if they could possibly help also, but I also have questions on how they can treat the tight muscles and knots we fibro people have.

    I do hope that the FFC will be successful for you!
    Best wishes,
  5. Juloo

    Juloo Member

    But I wanted to answer you because a) I was curious if the FFCs actually treat the fatigue part or just focus on the fibro and b)I had a different experience w/EBV and pain.

    Re: the EBV and pain -- although I've been dealing w/fatigue for about 7 1/2 years now, the pain has only been an issue for about 3. It would come and go, mostly in arms and chest, but also sometimes whole body (although that was very rare). It would alternate on/off in big cycles -- four to six months on, then several months of relief and back again. The highest the pain went was about a 7, although that was rare.

    Almost a year ago, I was tested (not through FFCs) for EBV and others and came back with a 'chronic high' level for EBV. I started on 1g Valtrex 3X a day, and almost from the first day, the pain began to recede. It has only recently come sneaking back, but very low levels, and I am no longer on the Valtrex all the time.

    I've had monthly (to every 6 weeks) 1 or 1 1/2 hour massages for over 3 years now -- it's what I can afford. They have helped tremendously, but there were times, especially during flare-ups, that they were excruciating. Fortunately the LMT is very flexible and can switch to cranio-sacral for a lighter therapy when that happens.

    So, as you know, we all react so differently, but for me, treating w/antivirals was a great step forward. If you are still not having any luck after several months (the doc that prescribed this therapy said he usually does 6 months at least), keep looking for another solution.

    My second question, re: fatigue vs. fibro -- if anyone has any experience w/the FFC and this, I'd really appreciate hearing about it.

    ANNXYZ New Member

    I think if you explain your situation to Dr B , she will
    work out something . I asked if I could come back in a couple of months , and she wrote refills for my ABX .

    I have to say that I am also feeling worse , but I expected it . I was on ABX about a year ago , and felt MUCH sicker before getting better . Eventually I felt MUCH
    better , but relapsed . I did not realize I had lyme at the time and stopped the ABX too soon. I have been on the ABX ( second time ) for about two months , and I am soooo
    wiped out . Also , my blood pressure is so low I am very light headed . It is miserable , but the results eventually will be worth it .

    Dr Salvato , a doc who treats a lot of lyme patients in Houston , says that most patients feel worse for three to six months , then slowly begin to improve .I try and keep my mind on the improvement that will result .

    My pain improved a LOT after raising my VIT D3 level . I must say that I initially herxed for a while . The other thing that really helped with my pain was supplements for hypercoagulation . My pain is MUCH better ( almost gone) . I suspect yours is worse because of the toxins circulating in your system from the die off . They are
    capable of making us intensely miserable .

    You might want to talk to DR B about trying questran or activated charcoal to absorb some of the toxins and prevent them from recirculating in your system.

    I take activated charcoal right before I go to sleep with a big glass of water . You can not take questran or charcoal within a couple of hours of meds , or the meds will not be absorbed . I think the charcoal really does help me .

    Hang in there and I will pray for a solution for you !

  7. bpmwriter

    bpmwriter New Member

    this period of feeling really miserable did begin with a massage so i imagine it does have something to do with the circulation of toxins. it's a bit of a catch 22 because i need massage to help with the trigger point pain, but if history repeats, massage makes me very ill. i suppose it's a matter of finding the right bodyworker and a little bit of patience. i do plan on mentioning to dr. b that it will be a few months before i can check in again. they always seem very reasonable about financial concerns.


    ANNXYZ New Member

    you can buy activated charcoal over the counter for a couple of dollars . It might just help lower the circulating toxin level and reduce your pain.