Completely Lost

Discussion in 'Fibromyalgia Main Forum' started by Dovebird, Aug 9, 2005.

  1. Dovebird

    Dovebird New Member

    I am floored by the plethora of information on the boards. So much so that I am now totally clueless as to where to start. I feel like I need to get my printer going and print all these posts and weed through them like I am studying for an exam, my life exam.

    I did the Gaui protocol years back not sure it really worked for me at all. I have never ever done a colon cleanse or any for that matter even though I have been on tons meds for at least 16 years. I have terrible bouts of IBS and the pain levels are so bad in my neck and shoulders that I eat codeine like it's candy.

    I cannot afford alot of supplements and I am terribly addicted to chocolate, ice cream and splenda sweetened pops and waters. I have tried and tried to change this to only fall back. I did do the yeast diet for 2 months and I saw alot of weight loss but no dramatic difference in how I felt.

    I'm rambling here and pretty desperate to get this out I am in too much pain to type. Could some of you direct me as to how and where to start. I have so many symptoms it gets really confusing knowing what would be best. I used to have some transfer factor and acidophilus in my fridge I stopped them they didnt seem to work either. I also have magnesium 250mg pill form not getting anything from this long does it take? Do regular vitamins work? Can I make a smoothie with a regular blender and what is the best for me?

    Bless you for answering this....

  2. virgo_karen

    virgo_karen New Member

    If you would check out stormyskye threads, she could really help you. She is on right now, so check out what she has to say.
    Good Luck!

    p.s. please don't do anything you would regret, take one day at a time
  3. mtnfla

    mtnfla New Member

    I honestly can relate to how you are feeling about the pain and not being able to take it anymore..If you feel up to it read my post,serve head pain...Please don't take the Methadone and do harm to yourself,there is help out there somewhere.Just don't give up on yourself!!!!

    We are here for one another no matter what the reason is(sad new,crisis,happy new or just to talk) so please hang around thing will get better.(I know easier said than done)

    I was feeling the same way this past week and get that way everytime I get that sudden pain,all I want is relief and it so hard to get the Drs to understand just how bad it is..You would think with me on Methadone,Zanaflex that I wouldn't have any pain,but that is so far from the truth..

    Take care,
  4. backporchrags

    backporchrags New Member

    I completely understand your frustration and confusion. After having this DD most of my life I have tried many different types of treatments. From vitamins to electric pulse therapy I've done it.
    Frankly.... nothing worked well for me. Some treatments would seem to work at first but after a couple of weeks the effects lessened.
    If there was a treatment that had dramatic effects in lessening symptoms you would hear about it. It would be all over the web and in the news. Knowing this, please don't get mired down in all of the info out there. Take your symptoms one at a time and try only what makes sence to you. By all means read all of the latest news but don't sit in front of the computer all day every day looking for answers. I believe this can make people feel worse ande become to intrespective.
    I understand the urges to harm oneself. It is so tempting to cause yourself pain to distract from the pain you are always in. I still do this in subtle ways. Smoking for one. I have no desire to live to a ripe old age in such pain. I can preform minor surgery on myself and relish the distraction from my neck and shoulder pain. But we all know this feeling does not last.
    If you are considering harming yourself please seek help!
    I so wish I could offer you more help. I will keep you in my prayers tonight.
  5. Juloo

    Juloo Member

    A couple of things that might help:

    Make a timeline of your life w/major events. Rate yourself for a few different factors, like energy level, depression, pain, etc., along it. Also, if you have already tried different things, show when you started and stopped and if you felt better in your different factors.

    Another thing would be to get a book -- like From Fatigued to Fantastic -- and do the self-assessment there. It breaks down the different symptoms into categories they might fall into...thyroid, candida, Lyme, sleep, diet, etc., you can get a handle on which ones might be heavier factors than others.

    Before you dive in to too many things, remember that it is best to start one thing at a time and wait a bit to see how your body reacts. If you do too many things at once, you won't know what may be causing a bad reaction.

    This is a looooooong-term project, believe me.
  6. LittleBluestem

    LittleBluestem New Member


    You are, in effect, studying for your life exam. I don’t know about methadone, I thought it had some legitimate uses; but self harm will get you a failing grade.

    I, too, am struggling not to be overwhelmed by the amount of information on this message board. I visit 2 or 3 times a day, so I can read it in smaller chunks. Some people print out information that is important to them, but I would be overwhelmed by the pile of paper. I cut and paste the information that I want to keep into word processor documents. This way I can put information on the same subject from different days into one document. If a post has information on 2 or more different subjects, I can cut and paste into 2 or more different documents. I organize the documents into folders of related subjects. If there is a really long post that l cannot read and comprehend while on-line, I copy it into a document and save it to read later. I have a document where I keep a list of the ‘to read later’ documents.

    It may or may not be possible to get your doctor to understand all of this. It depends on the doctor and how much time and effort you are willing to put into it. I am not personally willing to try to train a doctor that does not understand CFS. (One was going to charge me $250/hours for the time she spent studying up to treat me!) I think it would be a great help to have some kind of medical professional who understood this condition to guide me, but am still looking. This site has a Doctor Referral section. You can check the FFC web site [] to see if there is one near you. If neither of these help, I can give you a list of other web sites to check.

    While it can be confusing to a newcomer, I think you will ultimately find this site to be a great resource. As time goes by, the information will start fitting together and making more sense. It sounds like you have been ill for several years, so you are not going to solve the problem overnight (or even overmonth). Just keep slogging away one step at a time and don’t be discouraged when some steps turn out to be backwards, or sideways, ones. Give yourself a pat on the back for the forwards ones (hint: finding this site was a forwards one). Pat, Pat.

    P.S. Be sure to read "The Road to Good Health" posted by Stormyskye on June 30.[This Message was Edited on 08/09/2005]
  7. Dovebird

    Dovebird New Member

    You all have given me such wonderful and useful info that I did not expect and so right on! Will read these posts a couple times to get it in my noggin lol.

    So glad I found all of you!

    Huggz, Dove
  8. PVLady

    PVLady New Member

    I see excellent pain specialist here in California. We all have our feelings as to the best treatments. Personally, I do believe it is all "trial and error".

    The only thing that totally eliminated my pain was MS Contin. Originally I was taking 15 mg twice a day, and eventually went to 30 mg twice a day since I was still having breakthrough pain.

    Unfortunately, after taking the MS Contin for 9 months, I could not handle the side effects. You always need to be very aware of the side effects when you start any med. For me it was terrible contipation, like my gut was frozen, loss of appetite, etc.

    On the other hand, I became active again and my life literally changed. For 10 years I was housebound and in bed alot. Once I started the MS Contin, I started getting out. I also lost 50 lbs (due to loss of appetite).

    I had to stop MS Contin in May 2005 and so far I am doing ok with Tylenol and another "less strong" narcotic med. )(that is a whole other story).

    I believe taking the MS Contin must have shocked my system and maybe that is what I needed.

    My doctor actually told me he felt MS Contin was the best med for me, but he knows I cannot take it. One thing, you could always try it and if it does not work you can taper off it.

    I believe having untreated pain very bad. If you are already taking alot of "codeine" perhaps it is not working for you. You might consider stopping it altogether and starting on something new. By the way, you can stop all opiates and avoid any withdrawals with a med called Subutex.

    I used it to stop MS Contin. Subutex also treats pain but is much less hard on your system and easier to taper off of.

    I am rambling here but just throwing in my 2 cents. The fact is, sometimes, narcotic meds are necessary. The quality of our lives is important and if narcotic meds help, then why not? Under the supervision of a good doctor, no one should have a problem.

    For everyone who can make it with supplements alone, I am happy, but I don't think it works for everyone.

  9. GuineaPig

    GuineaPig New Member

    Chocolate, Dairy, and Splenda... Are you making a joke? If you really are "terribly addicted to chocolate" and if your other dietary comments are true, then you may have a serious problem. Chocolate is toxic, it does kill dogs afterall. Have you tried accupuncture to treat food sensitivities? That does work from my experience. I have overcome addictions to foods that were causing me harm with accupunture. Don't panic over the needles; the stress ends when the session is over, and so does the addiction to toxic food.
  10. Dovebird

    Dovebird New Member

    Got three pages full so far of tips and ideas. I wish I had been open to staying in the loop the past few years on FMS. Had I maybe I would not still be on prozac and mobic which don't even begin to help. I guess not knowing what else to go on and having a doctor that seems to look to me to be the doctor I feared going off them.

    I wrote him a letter today since he seems to be as hard to get an appointment with as the president. You know doctors are so overloaded with american patients being ill we no longer even see doctors we get to see their nurse practioners who are picking up the huge case load for them. Not that they are not qaulified but I am paying for that doctors in person services. I begged him in my letter to please not put off sending me to a pain clinic. He wants to wait till I see my Rhumie on the 18th and I told him that I don't have one disease here and he is not treating my FMS at the same time. I should have been in a pain clinic 16 years ago what is wrong with him!

    Thanks to all of you I have found the courage to find new doctors in my area and start calling all kinds of people and yes I have had a few rude people, was like talking to a wall of ice. I hate it when I talk to some receptionist on the phone and she says, "Oh I had fms too and it's all gone now I just changed the way I eat". Forgive me but I do believe doctors are too carelessly handing out this label and the degree of FMS is so varied everyone thinks they have it bad until they meet someone The lady that told me that today called me to discuss breast reduction and whether it would help in my case..hmmm who knows.

    As for chocolate I became addicted to candy and chocolate at the age of 2 I am sure. I remember stealing it at age 5 and my father sending me to the store to buy it for him. Heck my parents taught me to count with M&M's! I don't crave candy so much now as I do chocolate so the magnesium makes sense...must crave protein too because I crave peanut butter. After doing the Atkins off and on for years I learned how dangerous those white poisons are but my body calls and calls until I can take it no more.

    I did call an acupuncturist 85 dollars a session! He feels he can help the pain levels and maybe that would help with the sugar craving need to ask him. I need to raise the money to get those type of luxery therapies and needles I use twice a week already not squimish there lol.

    It's been wonderful reading all the replies.......just made my day! Huggz, Dove