Help Me Understand - Let's Talk About This

Discussion in 'Fibromyalgia Main Forum' started by bpmwriter, Sep 22, 2005.

  1. bpmwriter

    bpmwriter New Member

    Hi All,

    Coming up on my one year anniversary of unemployment thanks to illness. Been sick for almost 2 years now. Doing a lot of thinking, soul searching, debating the next step. I'm being treated by the FFC in Atlanta and thinking about striking out on my own again, getting back to things that have worked in the past (the last month and a half, I've been miserable).

    The question that keeps plaguing me is, if we have some sort of immune defect, genetic or otherwise, does it make any sense to assail our bodies with anti-virals? In my mind, it parallels a lot of what's going on in the world today. Does it make any sense to run rampant killing terrorists if there's some greater problem that needs to be addressed like poverty (or whatever) before we can heal?

    In addition to the anti-virals, I'm taking hormones that have caused the return of some anxiety that I had mostly resolved. Supplementing with hormones only makes sense if we believe our body will kick in and start manufacturing them on its own again. But again, if we have some sort of defect, this X factor, supplementing with hormones may just be a stop gap, like plugging a dam with tissue paper.

    I'm at the crossroads of adopting a plan to live with this illness instead of fighting it so hard. I'm worn out from the fight. My health peaked early this year on a low dose of Lexapro and acupuncture treatments (with the occasional chinese herb or tea). I wasn't 100% but at least I had escaped the revolving door of symptoms and side effects that typify the beginning stages of this illness. I want to go get back to that.

    In addition to general opinions on all this, I'm interested to hear from people who have adopted a completely natural approach to healing and are they happy with the results? Do you have regrets and wish you had been more aggressive with your treatment?

    Eddie
  2. deliarose

    deliarose New Member

    I wonder if you are struggling with the fact that whatever route you go - aggressive medication or natural supplements -- it may take a couple of years to begin feeling well again?
    Cheers
    Delia
  3. Bambi

    Bambi New Member

    dd's, but I think some assume that we were all eating hot dogs and bowing down to some foreign god before we got these conditions. That's just not the case. Just as some of us were abused or in accidents or had some terrible emotional blow, not all did.
    In fact, there are as many differences in our histories as there are numbers of us. They have concentrated on an average person with these conditions and some do fit the mold. Some don't.

    So far as I've seen the same therapies don't work for all of us either. Nor are the symptoms the same or the pain levels the same. One of the things I dislike so intensely about the "experts" on these conditions is that they make blanket statements all the time; "it is not
    progressive", "it's an emotional situation", "it's yeast", "it's Mycoplasms" and on and on. Noone knows YET what they are.

    I will continue to say, no one but YOU knows your body, your symptoms, your reaction to various "natural" or
    other therapies, your pain level etc
    etc etc.. Do what "feels" right for you and once you've decided what that is don't let anyone disuade you. Until they can come forward and say that there is an across the board "cure" or any ONE can say and PROVE they are in a permanent remission I just listen to all the talk and do what I have to do for ME.

    Give yourself some quiet time, free of the board, all distractions and listen to your heart. It's there telling you what you really think. Then do it. Good luck! ((((Hugs!)))) Bambi
  4. orachel

    orachel New Member

    I know from speaking with members who have been "fighting the fight" for a long time that this certainly can happen and does happen from time to time. Just in my very limited experience (we're talking less than for months here! lol) I can empathize with the "nothing seems to be working" issue.

    I can see how it would make sense to you to to try to get back to the treatment plan you were on when you had the best "results" with your physical progress. That's just plain good logical thinking, really. My only caution to you is this...I've very recently been in a pretty huge physical (and mental!) crisis that just got more enormous and frazzly because I was relying on that "logic" that has served me so well all my life. I think that we also have to realize that from time to time "logic" just doesn't apply to our symptoms due to the really "unexpected and changing" nature of these illnesses. I've seen many posts here about some treatment plan that hadn't been working, and suddenly improvement started....and plans that had been working great and with no difference or change in treatment, suddenly seems less and less effective as physical symptoms worsen. In other words, 1 + 2 = 3 just doesn't seem to be something we can count on with FM/CFS 100% of the time.

    Another thing that really contributed to my recent mess is that I think that between myself and my Doctor(s), we'd just been changing treatment plan too often for me to see any real or consistant effects from the treatments. Many of the things that seem to be really effective from what I've seen have a very "cumulitive" nature...may take a while to work. Also, I know from current research and past knowledge and great stories here that an herbal or holistic program (and FFC usually uses quite a bit of Supplements, right?) may have significant longterm benefits, but there is often a period of MUCH worse before better just due to the nature of our bodies. If you have yucky stuff in you, and something you take "draws" that yucky stuff out even gradually, it's going to be a lot more "actively nasty" in your body before it is gone! LOL I'm just throwing these things out there to give you some food for thought. I don't know how long you've been with FFC, or how long you're current treatment plan (ie:stable iv's and supplements and meds) has been in effect, so this stuff might or might not apply.

    I can tell you that a few years ago I used to go to an amazing wellness clinic in Florida (Lifeworks) for all my healthcare (this is long before I my FM) from sinus infections to colds and flus. It was definitely the period of greatest "wellness" overall in my life. I was often given iv therapies (ie: antivirals) for dormant viruses, and was often sick as a dog for a day or two after, but literally great after that. A flu that would normally take me down for 2 weeks, gone in 3 days..with no lingering effects.

    I thought the whole concept of "dormant viruses" a little unbelievable and questionable at first. As means of diagnosing and convincing me, D. O. did some procedure (something that started with K? Homeopathic diagnostic procedure. Sorry, foggy!) that involved placing viruses or antigens in vials on my chest that might possibly be affecting me, and measuring my ability to "resist" pressure with each vial of virus/allergen. I knew from "allergy testing" a few years before what my main allergens were, but I didn't tell the DO. Sure enough, each time one of my "known" allergens was placed upon me, I literally had no strength to resist whatsoever. It was kind of freaky, but very convincing. So, I personally believe that dormant viruses certainly exist, and since causation of FM/CFS seems to be very multifaceted and questionable, it makes sense to me that these viruses may play a part. I personally have had good luck with antiviral iv's in the past. But the one thing we do know here, is that each and every one of us is different, and that something that works for one, may not work, or even be very negative for other.

    I know very very little about hormone therapy (my research into DD is just starting..just diagnosed), so can't really advise anything on that other than to be open and honest with your docs, period. If you aren't tolerating something well, you must work together to decide if the "possible" long term benefit is worth the problems you're having. Believe me, I just realized a med I was taking most likely was causing EXTREME neurological symptoms, so you definitely need to trust your gut if something you're taking just doesn't "feel" right.

    I know nothing about this "X factor" hormone deficiency theory...didn't think there was a possible theory for causation of our DD that I'd not run into! lol Very interested in any research or articles you could direct me to that would educate me on this.

    Personally, I believe (again, based on a lot of intensive research..for 3 mos. LOL There's still a lot of learning for me to do, which may change my mind!) that FM may have a specific cause that occurs in many or all of us (as yet undetermined!), but that we all have different symptoms and reactions due to the fact that we all have different underlying conditions that play upon that "cause". In my mind, these include dormant viruses, dietary issues or intolerances ie:yeast that may affect some, but not others, overall "toxicity" of body in terms of bad diet, and deficiencies in body (vitamins, etc)....Just a ton of factors working together, basically. I just don't think theres ONE thing that is solely causing these problems in each and every one of us, due to the factor that our symptoms and reactions vary SO widely from person to person.

    I'm so new to this illness, I cannot imagine how you must be feeling after "fighting" so long. I'm sure it's an all encompassing "job" in and of itself. I know that's how it is for me right now...finding the best path to wellness and the support system I need is pretty much all I have the strenght and energy to do at this very point. But I do know that you don't have to choose between fighting DD and living with it. Its a matter of finding a way to LIVE your life, pursue your passions and find some level of comfort, emotionally and physically apart from your DD. That in and of itself should give you some extra "oomph" to work harder toward your wellness, and not feel like you're treading water.

    I'm sorry this is so long! Something about your post just made me think so much about where I might be 2 yrs down the road, with so much more knowledge (as you clearly have!) and the fact that its very possible for any of us in these circumstances to simply "submit" and allow the fact that we happen to have these conditions define us. That would be tragic.

    Wishing you the best luck in your decisions!
    Rachel
  5. Bailey-smom

    Bailey-smom New Member

    This is something to think about - All I know about for me is that I feel much better when I eat healthier. I tend to agree a bit with Patty. I used supplements to assist me in loosing weight and feeling better a few years ago and I know that there are many you can use to accomplish different things. Aloe will, sometimes, help with colitis (I don’t have it but a friend does). I took a multi-vitamin/mineral and it cleared up my sinus problems as well as bladder infections. I always breath easier, feel better and have more energy when I am eating fresh fruits & veggies as well.

    And ATTITUDE is everything! When I played basketball in high school our coach used to preach about PMA - Positive Mental Attitude. I have carried that into my life as an adult. Why would you want to see the bad in every situation? I prefer to try to find something good - no matter how small - like getting a diagnosis. That may sound silly but I have suffered from constant pain for the past 7 years - 2 weeks ago the dr told me it is FM and I was excited - it finally had a name therefore a direction to be treated.

    And let me add another thing to attitude that comes from my family life. I don’t always get along the best with my sister and my mother gets mad because I don’t call her. I just told my mom that I am not going to let her make me feel bad. I am the captain of my own ship and you can not make me feel bad if I don’t let you. What I mean by this is - don’t always take everything someone says to you or about you to heart, in the broad scheme of things does it really matter??
  6. Bailey-smom

    Bailey-smom New Member

  7. PepperGirl52

    PepperGirl52 New Member

    You have to do what is right for YOU. There are so many alternative treatments out there, and so many medical treatments that exist as well as the ones that are being experimental-geez, no wonder you are confused!!

    As someone else said-I think it was Bambi, also-NOT ONE of us is the same. Not one of us has this disease for the same reason!!

    I don't know if you're fighting CFS/Fibro or both, but there are so many reasons why we get either of those diseases and so many ways they can be treated. Sadly, not many of them are successful enough for many of us to live as though they don't exist.

    Please, do take some time off and do what you feel is the right thing! My fibro is clearly the result of a trauma-a cervical fusion-and nothing else that I can put my finger on! My treatments are clearly through medication. I refuse to apologize for that-that's what "works" for me!

    I have few dietary restrictions, other than those I have put on myself. I know what makes me feel like crap, and what gives me a fairly decent day, and very little of it has to do with what I eat.

    You take some time off and search your own body. NO ONE knows it as well as you!! God bless you and good luck!! PG
  8. bpmwriter

    bpmwriter New Member


    ORACHEL - I actually live in Palm Harbor, Florida and considered going to the LifeWorks center. Glad you had a good experience there. I might try them in the future.

    Thank for all the replies. Today is the first day in over a year when I have that fluish, weak, disoriented, anxiety-ridden, feel like I'm going to explode thing going on. I thought I was WAY past all that. The last nine months or so, I've dealt with on again, off again muscle pain and low energy, but not this feeling like I could just die.

    I've been under treatment with the FFC since the first week of June so I'm past the 3 month mark. I went there in the hopes of restoring my energy to pre-illness levels. I finished my acyclovir and transfer factor a couple weeks ago and decided to take a break after feeling pretty rotten the whole month of August. Then I did one week on the Questran detox, but stopped when the constipation got to be too much.

    STORM - you did the questran detox, yes? could that have anything to do with the way i feel? it's been about a week since i stopped and i was only taking two packs a day. i didn't notice any crazy symptoms while i was taking it.

    My current daily meds regime consists of 25mcg thryoid, 5mg cortisol (I was supposed to go up to 10 but it left me feeling all racey even into the evening), and 1mg of klonopin for sleep at night. So I'm really not on all that much!

    I find myself questioning the whole cult of information surrounding these illnesses. No one really knows anything more than the next guy, right? Even the docs. We just don't know. But the idea of returning your body to a seriously ill state so you can get better, just doesn't make sense to me anymore.

    OK all, I appreciate the discussion and concern. I'll make it through, we always do somehow!

    Eddie

  9. bpmwriter

    bpmwriter New Member


    the cortisol is for adrenal support and supposedly assists tissue repair, but i believe the cortisol is part of my problem. after all, it is the stress hormone. why fill yourself up on that?! in my opinion, the muscle pain in these illnesses is a nerve thing (based on my experience with lyrica) so the idea that cortisol is needed for tissue repair and to fight inflammation doesn't work for me. it'll be the next thing to go as i get back to basics.

    eddie
  10. Bailey-smom

    Bailey-smom New Member

    Licorice like you eat or is it a pill or just the tea & what does it help?

    Thanks much!
    Kelly
  11. Dee50

    Dee50 New Member

    I have lived with this for many many years. 16-50. I'm learning to enjoy whatever health I can hang on to. At times I'm better and some times I'm worse. I use diet and some herbs drink lots of water and sleep lot.
    To me CFS has different levels~seems I've lived them and pushed and got worse.
    I wish you the best.
    I think at some point this last flare changed me the most.
    I go down for months at a time and have for all the years of my life. Just didn't know what I was dealing with.
    I love life and will always do the very best I can to live it to the fullest :)
    Dee50
    [This Message was Edited on 09/24/2005]
  12. abbylee

    abbylee New Member

    I've had fms for 42 years that I remember, and short of a miracle, I'll probably die trying to treat this sickness.

    What you're doing is something that I do every few years - change my treatment - sometimes drastically and sometimes I just change something small. Whatever path I choose, I have different aches and pains and different side effects to live with.

    And when I get frustrated with the way I feel, here we go again. - Change this, modify that, try this, eliminate that, etc.

    I've been taking Xyrem for almost 2 years. When I started using it, I thought that once I got restorative sleep I'd be cured. Not so. My pain has been cut in half, I have more mobility in my neck and upper back, I don't fall asleep during the day anymore, and unless we're having storms, I don't have flares. But I'm not cured.

    In fact, I've added Oxycodone for breakthrough pain as my Methadone isn't working as good as it once did. And we even increased the Methadone - double it.

    I guess what I'm trying to say is to go for it. See if you can minimize your symptoms and feel better!! Even if you don't feel better for a while, you're working toward a goal and that, itself, can help emotionally. I think we need to feel like we're getting close, otherwise we'd (or at least I'd) have a very dim view for my future. And who knows, maybe they'll find the answer one day!!


    abbylee