Anyone out there who's tried it all?

Discussion in 'Fibromyalgia Main Forum' started by russellncm, Nov 1, 2006.

  1. russellncm

    russellncm New Member

    I am a new member to the message board. I've done all the probiotics, Mannatech products, Candida diet for one year(which helped me feel great for three months), Juice Plus (again, felt great for first three months). I did hardcore exercise (before I was diagnosed) then stepped down to ti chi, then yoga, then stretching (now I can't do any of it). I've also been to the Fibromyalgia and Fatigue Center near Atlanta and got all the B-12 shots, a special IV and a host of other probiotics, vitamins, minerals, etc. that I used for six months.

    My headaches required me to take two excedrin migraine and 6-8 extra strenght tylenol at once (almost daily for years) to get some relief. I knew that would destroy my liver so a pain specialist put me on Fioricet. That seems to be working pretty good for the headaches.

    I hear other CFS people say this or that helped or cured them and when I try it (sometimes for a year at a time) I get nothing. If there is anyone who can relate and has anything to share I am certainly open. I'm not a big complainer (in spite of this email) but it's hard for me not to be skeptical. Talk to me!

    Russell
  2. beachwalkerbill

    beachwalkerbill New Member

    I have had some luck with the headaches recently. But it’s painful, of course its not like it’s not going to hurt like hell anyway. I had to go off all analgesics, take 4 days of prednasone, then take nothing but phenargane for headache (NO Analgesics) until I was headache free for 3 days in a row.
    The migraine diet works ok. But I have to do this routine every now and then. I’m doing it again now. It’s worth it but it does hurt like hell.
    Good Luck
  3. Slayadragon

    Slayadragon New Member

    Oh, you're far from having tried it all. And of all the things you could try (e.g. that have worked for other people to some extent) probably only about 1/10 will work for you. Getting better is a full-time job, or at least I make it a full-time job some of the time. It's worth it, but you do have to have a long-term mentality.
  4. was literally had my gastro's office, back in 2002, after 2 yrs, tell me we'd literally "gone through the entire arsenol of stomach drugs" he was waiting for Tegaserod to come out, for me to try it....well. He was wrong, or just uneducated, but I continued to suffer vomiting, spasms, etc...

    what I NEEDED, was pancreatic enzymes,(which cost anywhere from $252-$314 a month, then after a diet, I switched to GNC ones, for--$18-$32 a month! argh! after over 2.5 yrs!) A very strict* diet that was *everything-free* (I said) only ate boneless skinless chicken breasts, brown rice, & ocasionally Quinoa, or brussel sprouts, or green beans...and my PCP tried me on 1 more nausea drug (DIDN'T work either--Zofran)...diet was most effective--also hardest to obey, darn it! I know* it's what will help me, at *least* 30% & yet I haven't stuck to it yet...)

    Sometimes, it is a different doc, or dietician, we need, really. Doctors are saying, they believe in the future, each individual will have *customized* diets, for many* diseases & illnesses. So we know that's a huge part of it.

    As for exercise--don't work for me either, not even just treadmill....but I still test that theory every so often.

    I feel like* I've tried everything in the world...but, I KNOW I haven't. and not all the *Combinations* either. Discouraging, overwhelming--just to THINK about it, for sure, but, I cannot keep my skeptical, negative thinking, I'm focusing on "Mind, body, Spirit" now. I know I've always, my entire life, at least since age 10 (many traumatic events at once, within a few yrs) been a very sensitive fearful nervous person...

    My mother now, thinking back, also told my sister she thinks I've been sick my whole life....whereas she just thought I was a bratty teen that hated school & life...Now she sees I was just sooo exhausted, not sleeping or eating well, and the lights* at school & noise, killed me.

    It IS discouraging, and so many songs fit..such as "I'm much too young, to feel this d***ed Old" "Bring Me To Life"(evanescence), Down With The Sickness--Disturbed, & many more come to mind when I think about all of us.

    I don't know what to say, just the ramblings of a sleep deprived (always) mind...just know that others feel just that same way.......and I nearly VOMIT when I think of the out of pocket exspenses.......right down the drain. I wonder how close I've come to the 2mil cap on our insurance, at just age 28 and ill for 6yrs, etc. Lot of surgery, but... I just push it out, best I can..

    Hang in there, could be worse, you could be a rambling angry nut like I am. :) you still sound pretty sound at mind....
  5. ladykew

    ladykew New Member

    For me, it was not one thing that made me feel better and I could continue taking it and continue feeling better. Unfortunately, FM/CFS doesn't work that way. There are so many different symptoms that come and go, and new ones come and stay, and you just never know whether you're coming or going.

    I just treat the symptoms as they come, along with the help of my Rheumatologist. We do regular blood tests, and I take hydrocodone for pain, which I have for several years at the same dosage. It works for me along with a muscle relaxer. I'm not saying I'm pain free--far from it. But I deal with it.

    As far as headaches, I currently have the key!! I have been seeing a Neurologist, and after I had an MRI of my brain to rule out other factors, she began treating me with Migraine preventative medication, Topamax, which works so well for me. I seldom ever get a Migraine or Cluster Migraines anymore. When I do, I take an Imitrex, which takes care of the Migraine usually with only one dose.

    By the way, the MRI showed a lesion on my brain. It could have been from a remote infarct or from a head injury suffered in a major auto accident 14 years ago. I have reason to believe it could be from a minor stroke when I was in the hospital and the first night I came down with a very severe Migraine and was denied pain medication by my admitting doctor.

    This lasted all night long, and I begged and pleaded and cried for some pain relief. They gave me a placebo once, and an injection of benedryl once. When my new doctor got there the next morning and looked at my chart, and I was vomiting bile, he ordered morphine the quickest way. That day when I got up to walk, my left leg was dragging. I could not lift my foot. This went on for several weeks.

    Just one of my "Medical Horror Stories." It's no wonder I'm sick.

    I'm with you, Russell. I don't think anyone's come up with the answer yet. Hopefully, soon. We pray.

    Hugs,
    LadyLew
  6. maedaze

    maedaze New Member

    Yep know exactly where you are coming from and i too have the same results as you..... at the end of it all... none.

    Have at the end of the day learned to manage my life better, but if i am to be honest i am probably worse- well I know i am worse, i just dont like admitting it. I have been bad for over 12 yrs now.. have tried lots of therapies, thousands of dollars on vitamins, minerals, etc etc..

    Still havn't found what works for me yet.. am now looking into the antivirals. Again it's really expensive here. But might be worth a try. I even got sick from the B12 injections and yet they work so well for others??

    Glad to hear your headaches under control. I was on medication to keep them under control and after nearly 3 yrs they just stopped working... am now going through a horrid time with continual headaches and migraines - 3 mnths now.... trying to find a medication to help. So far nothing is working.

    Sorry i am rambling now!! But I can SO relate to nothing working..
  7. Redwillow

    Redwillow New Member

    Hugs Russell

    I wanted to tell you welcome to this board. There are some nice people here. There are a lot of suggestions from different people on what worked or didn't work for them.

    I am not going to give you a lecture on what you have tried and what is still out there to try. The lists are endless, each person is different and the results are difficult to predict.

    I know what you mean when you say you have tried it all. These conditions are a never ending battle with often very little reward in feeling better.

    At the moment I am currently visiting an herbalist who uses muscle testing to tell what systems in your body are weak and what herbs your body needs to support it. I think I am seeing small slow results. I will keep everyone posted.

    I am also a person who is skeptical. I have tried a lot of things, spent a lot of money and for me the best results is pacing myself, staying home where it is quiet and trying to avoid stress. If this sounds boring and isolated, you would be right.

    hugs Redwillow
  8. LOVED

    LOVED New Member

    Russell, no you haven't tried everything and neither have I. But sometimes I just get so tired of trying things and spending so much money to get little or no relief. After 21 years of FM(it probably has been longer than that but that's the point I can trace back to) I have to admit that both my husband and I have become very skeptical. Because this is a syndrome with so many aspects, it effects each person differently.

    I also will not let this dd consume me. I can't physically or emotionally allow myself to continually dwell on it. So I guess I have sort of made peace with it.

    Some of the most important things I have do involve lifestyle changes. I pace myself and give myself permission to let some things go. It has definitely changed me from a type A to type B. I try to live in the moment. I also rely on God.

    Sorry this is so long.
    LOVED
  9. russellncm

    russellncm New Member

    Thanks for your encouragement.
  10. shar6710

    shar6710 New Member

    I think we all know where you're coming from. I too have tried a few things and currently take a fairly long list of supplements.

    My CFS seemed to begin with a headache that wouldn't go away. It took about 8 weeks. I took Topamax and I think it helped break the cycle of daily headache but I continued to have them frequently.

    No one mentioned it here but I had good luck with acupunture and then massage. My massage therapist spent almost a whole session on just my head/neck and my neck felt better than it had in years and I have fewer headaches.

    Good luck and hang in there,
    Shar
    [This Message was Edited on 11/06/2006]
  11. Geegafer

    Geegafer New Member

    Hey, you sound just like me.
    I don't get real excited when I hear of another tip for a new supplement or drug.
    I've been through so many and wasted so much money on junk that worked for a while.
    I tried a "liver cleansing diet" that I would have sworn by. The first time I did it I lost 35 ungly lbs. and felt great for about 3 months. Then I put the weight back on and tried it again at least 5 different times and it did nothing for me.
    There are so many things that did a little good for a while and then it seems like I become immuned to it.
    I take a lot of motrin now and I'm pretty much resigned to that after being on dozens of meds.
    We each have to do what works for us. At least until we find our next miracle supplement.
    Gigi
  12. russellncm

    russellncm New Member

    Thanks, beachwalkerbill
  13. russellncm

    russellncm New Member

    Thank you so much, redwillow
  14. ladykew

    ladykew New Member

    Hi, Russell: Didn't realize you were new to the board. I read things, but don't comprehend all that I read the first time. Glad you are here. I have learned so much by being a part of this group. Not all the remedies work for everyone, but sometimes you can pick up one or two things to try. And the support you get is tremdous. There are so many wonderful, caring, and knowledgeable people on this board.

    I have FMS/CFIDS and have my Fibro pretty much under control except for some pain, but not as much as I used to have. The CFIDS, on the other hand, was out of control. I had no idea what to try next.

    For two months I was in an extreme flare. I started on , juiceplus (the same as you, but I stuck to it longer and am still taking it) then added Dr. Weir custom vitamins, then mona vie juice with glucosamine. I was still taking the RX pain med and muscle relaxer, antidepressants for a major clinical depression, and antianxiety meds.

    However, after being on the natural whole foods for about six months, I noticed a huge difference in how I felt. My flares have been cut down noticeable. I'm able to get out and go to lunch with a friend, church, shop with my Mother, get my hair done, massage weekly... BUT I have to pace myself very carefully. Just 30 minutes of overdoing, and I'm back in bed again.

    Regular sleep is essential for me. And that's difficult, because I'm such a nightowl! I have sleep apnea, and sleep with a CPAP machine. Haven't gotten used to it yet, so I'm not anxious to go to sleep. It's getting easier, though. I have to go back to sleep study for one more night with my own CPAP to check it against theirs just to make sure mine is giving me the right amount of air. I feel like I'm not getting enough, and I wake up feeling like I'm suffocating.

    Do you have any sleep disturbances?

    So nice to have you here. Hang in with the rest of us. We'll all share what helps us or doesn't help. Everyone is different.

    Later!
    ~~LadyLew

  15. Catseye

    Catseye Member

    My mistake was trying a few things at a time instead of looking at all the supplements and doing all the ones I thought would benefit me at the same time. Now I'm finally making headway. I'm going through my notes and trying to finish up my "what worked for me" post, its' near the end, like 89 or so.

    I went through Cheney and Teitelbaum's protocols (2 doctors who are experts on cfs and not afraid to recommend supplements) and wrote down all supplements and researched what they were for. As I researched, mostly to make sure they wouldn't harm my liver as I had hep c, I discovered even more supplements that would be helpful to a "broken" body. I started taking everything together. Some of the stuff that I had tried and dismissed a long time ago I am taking again; it's like they all work better together.

    My body got damaged and can't make everything it's supposed to so I am supplementing alot of things it should be making like certain amino acids and coq10, for examples. I'm taking about 30 different supplements. And I'm taking alot of precursors to things we should make, like TMG and phosphatidyl serine for neurotransmitters, for another example. I had always felt like I was "starved" for something and couldn't figure out what or why until I read through these 2 doctors' articles. I take a few herbs to help my liver and have a really limited, radical diet but mostly the supplements, including a good electrolyte solution twice a day, have helped the most.

    Here's their protocols if you're interested:

    http://membres.lycos.fr/chrisdel2/association/cheney/cheneyII3.html

    https://www.endfatigue.com/home.nsf/Basic?OpenFrameset&Frame=main_frame&SRC=Editable+Documents/Treatment
    +Protocol?OpenDocument

    I have managed to get results treating myself so I don't waste time with doctors anymore; they have been no help at all.

    good luck!

    karen
  16. russellncm

    russellncm New Member

    Dear LadyLew,

    Thanks for sharing your heart. I do have sleep issues and have used a c-pap for about two years. It definitely helps. I will take to heart what you said about the supplements. It seems like you go through so much work to get so little result (I know you can relate!). Thanks for your encouragement.

    Russell
  17. russellncm

    russellncm New Member

    Dear Stormskye,

    It was so long ago but if memory serves me right I think the headaches were better.

    Russell
  18. puffy1

    puffy1 New Member

    Yes russellncm I can relate I finaly quit trying all the things and I am just trying to minamize my acctivity now the only thing I have found that works for me right now is taking a 1/4 of a flexeril with an anti inflamitory at night so I can sleep most of the night.

    I tried taking the super antioxidents, when I was first told I had this they were expensive and I could not take them regularly when I ran out I could not buy any more for maybe a month.

    I have tried the grape seed extract the cranberry and grape juice the pomigranit juice the vitamins the anti depresants
    taking ibuprofen 3 timea a day and now we know what that can do.

    I think the one thing that has been proven is the magnisium
    but nothing is 100% with me I still have days when none of it seems to be working. I too use to exersize quite a bit and found that I have had to really cut down on that very frustarating.

    Puffy
  19. Adl123

    Adl123 New Member

    Hi,
    Have you tried Acupuncture? I have, and it has enabled me to stay on my feet (at least part of the time). My Fibro pain is in remission and my brain fog is almost gone.

    I just thought I would mention it. It might be worth a try.

    Peace,
    Terry
  20. puffy1

    puffy1 New Member

    my newe doc does that and has offerd it too me

    for 60.00 a treatment and you have to go everyday for about a week to get the bennifit of it I don't have that kind of money. or I would try it myself.

    Puffy