Tired of supplements that don't work - Continuation of chain

Discussion in 'Fibromyalgia Main Forum' started by Anita B., May 19, 2003.

  1. Anita B.

    Anita B. New Member

    It seems that many e-mails in response to gcalex post, including my own, didn't "take" so I'm starting a new chain on the subject.
    I have not found any supplement that has worked for me. I spend thousands of dollars a year on supplements: vitamins, minerals, herbs, enzymes, probiotics, homeopathic remedies, essential fatty acids (borage, evening primrose, EPAs), Co-Q 10, Enada, etc. yet nothing has helped my CFS or FM symptoms to any degree. I always take the supplements for long enough periods of time, and at high enough doses, to give them a fair trial. Despite my lack of success in finding any helpful supplement(s) for FM and CFS, I expect to keep on trying more supplements in the hope that something will help. Hope springs eternal! And I expect to continue taking vitamins, minerals, herbs, enzymes, essential fatty acids, etc. in the hope that they are helping me on some level that I can’t feel.
  2. Plantscaper

    Plantscaper New Member

    And I cannot guarantee anything as our genetic differences can vary so..But try Olive Leaf Extract...and let us know if you feel the same in a month...I have responded to that in the biggest way, ever...does not cure me of CFIDS, but goes a good way to helping end symptoms that have plagued me for 20+++years, including daily migraines..I don't know what your symptoms are which would help to know, but it is an antiviral, antifungal, antibacterial and antiparasitic herbal supplement...

    Also, see JellyBelly's theory on how hypercoagulation could prevent one from absorbing nutrients...and also, malabsorption is another problem, which would keep you from absorbing what you ingest...(I had no acid in my stomach (based on a test, and it is one of the reasons for my nutrient deficiencies)..and supplements will take a much longer period of time to show potential positive gains, with the exclusion of the OLE..

    [This Message was Edited on 05/19/2003]
    [This Message was Edited on 05/19/2003]
  3. mitch123

    mitch123 New Member

    I can so relate except I get a energy boost from CoQ10, I have tried everything too, the next product I'm trying is Transfer Factor, maybe research this one, and give it a try.
    your pill popping mate
  4. Anita B.

    Anita B. New Member

    Plantscraper, I tried olive leaf extract for more than 6 months one time, three months another time with a different brand; was taking 9 - 12 capsules a day for quite some time and didn't feel any different (didn't even have a herxheimer reaction). I still keep OLE around and take it at lower doses.

    Sue, I already am taking all the supplements you suggest except beta carotene (which I've taken in the past, but see no need for it since I eat huge amounts and many varieties and colors of vegetables, berries, and, to a lesser extent, fruits). Sue, I have had both FM and CFS since 1979, but at this point, FM symptoms predominate. I was diagnosed by a rheumatologist in 1980; he called the illness epidemic neuromyasthenia or myalgic encepalomyelitis at the time, in accordance with the names for this condition that were then in the medical literature. Around 1985 or 1986, the same doctor told me that my illness had a new name: chronic fatigue syndrome. Other doctors have confirmed the diagnosis.

    For more than 20 years, 90% of what I've eaten has been organic (I'm fortunate to live two blocks from a health food store and not far from farmers markets where organicly grown produce is sold from May to November). I think you would approve of my diet, Sue. I don't drink, have never smoked, and eat a large variety of raw or lightly steamed veggies. I also eat eggs from free-range organically fed chickens, same kind of chicken, and wild salmon, etc. I stretch every day, do relaxation exercises, walk every day (at least a mile and a half on bad days, considerably more on good days), and take a private exercise class once a week with a teacher who is a Certified Movement Analyst and also a certified Pilates teacher, who is sensitive to fibromyalgia and understands my lacks of stamina and strength. We spend at least a third of the class on restorative poses. I exercise on my own to tolerance levels, which I hit very quickly. It has taken me six months to work up to one and a half minutes on a stationary bicycle, at the lowest tension, and even that minimal amount of cycling makes me very sore. Don't know why I can walk but not cycle.

    Sue, most of the 23 1/2 years I've been sick I've been on no medication at all. I've tried quite a few, but had to stop many because of side effects. The ones that I was able to continue with I stopped eventually too because they didn't help, with one exception. The last few months I've been taking clonazepam 1/2 mg. at bedtime. It helps with sleep and it seems to increase the number of good days I have, but it certainly is no cure-all. Since most of these 23 1/2 years I've not been on any medication, I can't blame the supplements' failure to help my FM or CFS symptoms on medication. I can't blame this on poor absorption either (the tests my doctor has done from Great Smokies Laboratories and other labs has showed my digestion to be good). Of course, one can never be totally sure about how good one's absorption really is, even when test results come out fine.

    I fully understand that many people with CFS and FM have been helped by a variety of supplements. In fact, I expect to keep on taking supplements myself. Who knows what illnesses I may be warding off by taking supplements and eating a good diet? I just would like to find some supplement, or some combination of supplements that would help with the CFS and FM. That hasn't happened yet, and I've been working on this for 20 years.
    Again, thank you all for your feedback.
  5. lucky

    lucky New Member

    I don't think that your message was very appropriate to Anita. And I sympathize with her, being in the same boat. With all the research etc. and trials there is not one supplement where I can say that they helped my symptoms very much which does not mean that I have completely given up on some of them and am just trying Olive Leaf Extract at the moment. Some of our symptoms are just too severe that supplements are not the answer either and present a danger if they are not properly treated and they will just not to the trick. Supplements are good for prevention but not if you are severely ill. Also, they can do more harm than benefit and this concern was discussed on the BBC news 2 weeks ago when I spent time in Europe. And above all, if supplements are the answer for you, that does not mean they are the answer for many others who need more than a placebo.
    Sincerely, Lucky
    P.S. I was amazed at the tone your message was written, which is not what I am usually reading on this board.
    [This Message was Edited on 05/21/2003]
    [This Message was Edited on 05/21/2003]
  6. judywhit

    judywhit New Member

    completly what you are saying. As for the other poster...wow, where did the anger come from? I know with myself I feel such disapointment when I hear how many are finding relief in a supplement and then it does notihng for me. I was so excited by the ZMA because I long for sleep and it has helped so many here. I purchased two bottle thinking that this was my magic bullett. It was not, in fact it kept me awake. Cal and mag will do this to me also. So I have pretty muched scratched all the natural sleep aids off my list. I am disapointed in myself because I get my hopes up and am jealous too when I hear about the success and relief others get and I do not find that. I think this is a normal human response. Sue take a chill pill!
  7. pinkquartz

    pinkquartz New Member

    i think you could turn it around and see that what you do take is keeping you as healthy as you are.
    i sometimes double check if a supp is helping by stopping and seeing if i then feel worse, have you tried this ?
    i know not every one is helped by supp. or meds.
    i am not sure even there is a cure for those of us who have been ill so long.....and the importent thing is you are doing your best.

    i eat organic foods and i know its helpful and its not a cure either.

    i thought you handled Sue's out burst well, she is often quite aggressive.... perhaps not the best advert for the natural way...............!!!!!!!!!

    I am very ill but better than i used to be.

    best wishes

  8. PaulMark

    PaulMark New Member

    ANITA: i empathize totally with you situation i've had cfids and later the fibro type pain for 5 yrs. dx by cheney in ll/98 and now i'm sicker more reactive etc. than ever

    not his fault , i think a lot is to do with the th1/th2 the overactivation makes us even more hypersensitivie

    i Could have mirrored your post except I"M NOT lucky enough to get anything much organic in rural w. ky.

    I still think that is important

    I can't tell what causes what anymore i take low dose neurtonin and klonopin (at bed with 2 drops doxepin sub linqual) at nite and onlly take 4-500 mg. neurtonin in 24 hrs. a modest dose

    a very low dose anti depressant that does not go thru the 450 cytocrome system ie our liver

    my problem i've done in part to myself the binging on malts stuff is so overwhelming craving cheneys says many reasons for this to be simplistic it's the vicious cycle the way cfids and fms affects us and makes us imbalanced

    When i go tto cheney on 6/l0 i'm going to a place called carolina health center and they do a type of testing wtih computer on accunpressure meridians they can test foods suppls so i can stop guessing at least i'm hoping for it

    they have an MD and a fellow who has taken this type testing to a new level per my christian friends it has helped anyway they are in knoxville not far from asheville

    my heart goes out to you, and sounds to me lilke you are doing all you can do,

    GOD bless luck to you paul mark in KY
  9. Dorothy45

    Dorothy45 New Member

    Anita you're great!!!!!! Thank you for your sharp wit. I value your input regarding supplements. Different strokes for different folks. I wish you well in finding something that will give you relief. It is tragic that you can't voice an opinion without someone jumping down your throat.
    You've made my day!!!!!
  10. RedB

    RedB New Member

    Somehow, it doesn't seem fair that the people who practice nastiness and cruelty seem to be able to make themselves well, and those who ooze kindness and consideration must remain sick.

    A difference in egos, do you think?

  11. RedB

    RedB New Member

    In defense of one of Anita's previous posts......

    Before I was diagnosed, and when I was very, very, sick from pain and fatigue, I gave in to my husband's wishes, and went to a chiropractor.

    He pressed both hands on my back, while I was lying on a tilted table, and pushed so hard that I thought his hands would come through my stomach. Twice. I moaned in pain. This procedure was called an "adjustment".

    Following this, he came up behind me and "cracked" my neck, which I was not prepared for.

    I went home so frightened, and with such burning nerve pain throughout my body, that even my husband was scared.

    About 45 minutes later, I tried chewing on something, and my entire left side of my jaw popped and snapped. Very painful. When I called to ask him if what he did to me could have caused this, he admitted that it could have. I told him I would not be back.

    The bone in my cheek actually stuck out so that my husband noticed it. My entire jaw was extremely painful. Rubbing gently was not helpful. I had no clue what was going on.

    One day later, after seeing no improvement, my husband and I made a trip to Chicago, and we stopped to eat dinner on the way home. I bit into my sandwich, and my jaw became stuck open. I managed to unstick it, but I could actually feel what felt like a small piece of loose bone in the skin under my chin.

    To finish the story:

    I ended up checking into the emergency room of the nearest hospital before we got home. The doctors there told me that the entire spine is connected to the jaw bones, and I was suffering from inflamed TMJ, which was definitely caused by my chiro experience. Lots of anti-inflammatories for a week brought the inflammation down, but I continue to have problems with that jaw. The other weird thing is that there actually is a small bone under your chin, so what I felt as a small bone actually was. That also disappeared when the inflammation went down.

    When I asked the doctors how I could suddenly have a clicking jaw, when I had never had ANYTHING like that previously, they said that the chiro experience had brought it on.

    So, needless to say, I totally understand Anita when she says that her chiropractor brought on her pain. Because of my own experience, I know that it can happen, and that not all chiropractors are the end-all for chronic pain.

    Depending on a person's body, a chiropractor can actually be the beginning of a chronic pain problem.

    One should not pretend to understand another person's health until one has walked a mile in that person's shoes.


  12. lucky

    lucky New Member

    As far as I remember, Sue has done this before and left messages which were upsetting and stressing people and has not learned how to communiate since, which shows that the supplements she is taking probably are not doing anything to calm her emotions etc. We all get angry at times and frustrated, but you very rarely will see it on this board. That's why she is sticking out from the crowd. Pls. forget about it and let her get rid of her anger someplace else. Even when we have our bad days, there is no reason to lash out to people with bad behaviour.
    Sincerely, Lucky
  13. Cara-Sue

    Cara-Sue New Member

    if this is what vitamins ect.do to people i dont want any part in it.gee,does sue own these company's?is that why she is so sensitive about any negative feedback?
    i dont normally get into the little hissy fits that some have one here but i think sue better think before she talks.
    ignore her,thats the best thing.
    take care and dont loose hope.maybe if these things helped all of us they would then be able to find a cure for fm.
  14. lucky

    lucky New Member

    As far as I know, Mel is banned from this board after his latest big outcry on the board a few weeks ago. Hope this will be a lesson for those who really enjoy to make others upset.
    Sincerely, Lucky
  15. Dorothy45

    Dorothy45 New Member

    Bipolar? Probably!!!!I don't know about the rest of you, but I don't know a Sue. I have suffered with severe depression,and have a mild case of bipolar that I am being treated for. I hope I was never that nasty. Supps did not work for the my severe depression. I went to a psychiatrist who seriously thinks I have fm. With his help and many others, I feel great (mentally). Thanks to this board, I am trying other "stuff" to help with my fm symptoms. Thank you all so very much!!!!!!!!!
  16. stillafreemind

    stillafreemind New Member

    I, myself have tried many supps..not on meds. All outta pocket and it does get expensive. I have tried alot of different supps, different brands, etc. That being said..some work and some do not. For me..it is an experiment all the way. I try to read up (this board being one of the most informative) and I try to make as educated a decision as I can.

    For the last five years I have been in and outta flares. For the better part of a year and a half..I was a couch potato and wondering where the next stop would be.

    Now..Praise to God..I am improving. I am thinking that working on my ph and what I stick in my mouth has helped immensely. So has digestive enzymes and probiotics.I also think that at the moment..I am using the right supps and brands of supps for me.

    I cannot stop before giving credit to the Lord first and foremost .. for watching over me and guiding me. And I have to credit a whole new mind set to getting better. A WHOLE new mind set. And last, but not least, Mikie had a post once about learning to feel well. I took that to heart, it made sense to me..and this last six months or so has been a real learning experience.

    Guess I am saying..there is a real fine line for what can throw an individual body off and the same can be said for what puts it back on line..so to speak.

    In closing..I owe sue alot..she has been one of the people who have really helped me on here. I hope this will not turn into an ongoing war. That would not be good for anyone here.

    Hope you find the right things for you soon. Sherry
  17. pinkquartz

    pinkquartz New Member

    i probably shouldn't say this but then taking a leaf out of your book i will speak my mind and move on.......
    i have seen you be aggressive to people and hurtful in the way you write sometimes and it doesn't sit well with some of us , myself included.
    you have upset people ,even if you won't accept that you have.
    i take issue that you only hit out at complainers.
    you have had a go at me before and i have to say you seem very insensitive.
    Other people here say you can also be very kind........well thats great and i find the board a lovely supportive place to come to.
    which is why when you are mean to someone it really sticks out......its kind of jarring........
    i end up wondering what is your problem that you are bothering to be so intolerant,
    and i don't see why you want an apology
  18. Kim

    Kim New Member

    Praise God, isn't He wonderful!

    Just a comment on what I went through. I was dx with FM and chronic fatigue (at Mayo Clinic). Went to a very well known alternative medicine MD for one year (cost was no object because my insurance covered 80% and I was willing to pay the rest...anything to feel better. All kinds of supplements, allergy treatments, and other things not mainstream. Just got much worse. Massage, chiropractic, homeopathic, accupuncture from one of the best, etc. Bottom line....I had clinical depression. Went through 5 ECT treatments and felt great (compared to what I had been feeling). Went from 98 pounds and not sleeping or able to eat most foods to back to work teaching at university, publishing textbooks, and living a full life. I still believe I have fibromyalgia and I still go to a massage therapist, practice meditation, and take supplements but my point is that everyone is different. Sometimes, something important can be overlooked, like an underactive thyroid, allergy, etc. Doctors are human, herbs, supplements, and medicines are wonderful but not one size fits all.

    Love, peace, and prayers.

  19. PaulMark

    PaulMark New Member

    PARDON my brain FOG i just read a post about you _____ who said you are thinking of PH everything you put in mouth

    can you help me out here please

    I"M so lost in diets, follow my IGG rotation or the type o

    i've admitted to the severe severe food cravings for the past 2 yrs. and i go off on binges CHENEY says nutrintional suffering due to the progressive and cycle of CFS on me i'm bedridden so much and in so much pain with CFIDS

    and i'm hypersesntivite to many foods supps.

    i certainly epathize with ANITA there

    I thinkthe gut ecology has a lotmore to do wtih this illnesss than many think although not only cuase

    CAn you give me idea of foods wtih proper PH you refer to

    i KNOW this much the choc. malts and whipped cream i crave aren't the right kind, but it's like my body takes over my mind i told cheney that,

    well what can we say it's a vicious cycle

    i crave bananaas, all the time, choc. malts, and other extrmee nuts and all make me sick

    thansk PM
  20. stillafreemind

    stillafreemind New Member

    If you go into the archives on balancing ph..there are some great threads! Two that I can think of are beautiful simplicity and I think sue. ALOT of good info on here about this subject.

    Some people use coral calcium to help the ph..I do not at this time. My Juice Plus helps and eating my veggies. Especially carrots. I think a person might get farther faster if they juiced..but I do not. I find that if something becomes a job..I sometimes balk at it..soooooo. I try to eat things that will make my bod more alkaline. Look for alkaline foods on the search..I have noticed that apricots really change my ph.

    Be sure and get the ph testing strips, as they really can give you a good idea if you have been good or bad with what you have put in your mouth!!

    I should not be eating bread or carbs of any kind probably..BUT if I totally deny myself something..it seems that is the one thing that I just have to have! So I am not strict with myself by any means..I just try to do things in moderation I guess. I am sure that people who really follow it strictly get better faster.

    Hope this helps some...and I hope that the people who are doing this give you some good answers and advice.

    Hang in there paul! ... Sherry