Treatment protocol --help!-- where to start?

Discussion in 'Fibromyalgia Main Forum' started by minimonkey, Jan 4, 2006.

  1. minimonkey

    minimonkey New Member

    I've been reading so much about treatments for these dds, and there are so many options, I don't know where to start!

    I currently have:

    chronic myofascial pain for 15 years (very severe at present)

    migraines (usually triggered by the neck pain/spasms)

    tmj (probably related to all this -- had it forever)

    nerve symptoms in my hands and arms (cervical mri and nerve tests normal-- had these on and off for years)

    Raynaud's phenomenon

    hot skin patches/hot flashes that come and go

    IBS that comes and goes

    occasional bladder irritation (with no infection)

    I also had mono as a teenager.

    I don't currently have any cognitive or sensory problems (except with migraine) and no mood problems except occasional anxiety/panic. I have a history of severe depression and also the sensory overload stuff/cogitive fog -- that went away some years ago and thankfully remains gone. No problems with chemical sensitivity or allergies, either, at least at present.

    I currently take:

    Effexor 225 mgs/day (for pain, supposedly)
    Vicodin as needed for pain

    I see a chiropractor who does soft tissue/trigger point work -- that helps some, but not enough. I stretch and try to pace myself. I was seeing an internist/diagnostician who keeps looking for mechanical causes, but I think he is barking up the wrong, expensive tree --- I'm pretty sure this is fibro, looking over my history.

    My question? I need to know where to start with healing. I'm willing to adjust my diet and lifestyle, take supplements, what have you -- the guaifenisen protocol sounds interesting, too -- but there is so much information I don't even know where to begin.

    Anyone with similar issues want to share their fibro 101 treatment protocol with me?
  2. skierchik

    skierchik New Member


    I would bet money that yu are very toxic..that is...your cells are toxic. Check out Jeffrey S. Bland, PhD's book called "The 28 Day Rejuvenation Diet Program" There is a section for CFS/Fibromyalgia. You have to change your diet, so that your cells will let go of the toxins. The cell knows that your liver and kidney can't handle anymore toxins being dumped into your system so they just store until your liver can process it. I recommend you stop taking Vicadin (very toxic and adding to the problem) and try alternative therapies if possible, like accupuncture. Try a "pain management clinic" in your area. Believe me I know pain, but I also have experienced heavy toxicity due to taking pain medication for injuries and surgeries. I can't take anything like that or I will get really sick again. Dr. Bland's program has taken me from being bed ridden to being able to ski again. I also did and still do accupunture for pain and CF. Find one who has many years experience and preferrably one who is a doctor too.

    You have to lighten your toxic load by eating a very clean diet. You do this(it will take some time)and I am sure you will feel better too!! You have to take matters in your own hands, so read everything you can get your hands on.

  3. karatelady52

    karatelady52 New Member

    My symptoms for years were horrible neck, should pain and stiffness, IBS, CFS/FM, TMJ, tingling in hands and feet,
    slight MVP and heart palpitations which doctors said nothing was wrong, allergies, miscarriages in my 20's, and then when menopause hit, pain got a lot worse. Dizziness slipped in there somewhere also.

    Went to a pain doctor for 6 years and all she did was prescribe pain meds, did pressure point injections, massage, told me to de-stress, tried accupuncture, but I never got better.

    Finally, I went to one of the Fibromyalgia and Fatigue Centers where they do extensive blood work and found out I have lyme disease (which none of the above would have helped) and 3 viruses; Epstein-Barr (mono), CMV and Chlymydia Pneumonia virus.

    For many of us on this board, we're treating viruses and bacteria and slowly beginning to see a light at the end of what seemed to be a never-ending dark tunnel.

    I'm so thankful to find doctors who don't tell me there's nothing we can do for you or that its all in my head.

    I now have a plan of action and can move forward towards wellness. Whew --- it took a lot of years!

    p.s. Oh, forgot, anxiety attacks which is lyme related

    [This Message was Edited on 01/04/2006]
  4. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    but I don't know what kind of diet you eat now, or what supps, if any, you take? If your diet is standard american, you have many changes to make, but I'd make them gradually, so you learn to eat better and enjoy the changes you incorporate instead of white knuckling, which is near impossible to stay w/, as many yo yo dieters can testify.

    Migraines are most often food sensitivity, another reason to explore you diet. Some healthy changes to make first are start w/ a fresh fruit or veggie every morning w/ your vitamins, if they are tolerated. If you don't use a probiotic, that's the first supp to add in, I also recommend aloe vera juice first thing w/ water for gut healing. Most anyone w/ IBS can benefit from these.

    Incorporate more raw foods period, and not just produce, try all many of raw nuts and seeds. I'd lean more to adding more veggies and low fructose fruits, like avacado, tomatoe (these have different benefits both raw and cooked), grapefruit, lemon and lime.

    Try to have at least a bit of raw veggie w/ every meal, it adds enzymes, so do probiotics a half hour before meals. Your digtestion will improve from all these.

    Add new herbs and spices to your repetoire and use lots of onions, garlic, chive and hot stuff. These are all medicinal and yummy.

    I can't say enough about homemade foods rich in everything. These are soups, stews, casseroles, be creative. It's more work, but make monster size batches and freeze them. Then when you can't cook, you won't have to fall back on unhealthy processed foods. Many people choose juicing as a way to concentrate their nutrients, I didn't, I just ate lots of raw and kept the needed fiber in.

    I could say lots more, but that's a start.

  5. jaltair

    jaltair New Member

    You’ll have many varied opinions on how to go about with treatment for FMS. The problem is, “one size doesn’t fit all” when it comes to FMS or CFS. This is due to the fact that the cause of FMS/CFS is unknown. There may be multiple causes. That’s why there is no specific treatment. Unless we know the cause, we cannot treat specifically. However, you can treat specific symptoms if need be; i.e., pain is treated with pain medication.

    Many have had good luck with the Guai protocol. Here is a link that will answer your questions regarding the whys and whats of the protocol, Please go there to research. Also, the person who recommended searching Miki’s post is correct. Miki is the most knowledgeable person on the Board as far as the benefits of Guai. I haven’t tried it but have thought of doing so.

    Saying all the above, I’d also like to recommend:

    1. First, discuss treatment options with your doctor. It sounds as though you are on treatment as you mention that you have been to a chiropractor for myofascial pain treatment and you are also on two medications for pain; therefore, you must have a doctor involved. I’m not sure what the relationship is with the doctor you see, but I would start by discussing the possibility with him/her that you believe you may have FMS.
    2. Do what you can do to introduce healthier lifestyle routines; i.e. exercise and diet. There are so many great books and lots of good discussion from this Board on diet. The best thing is to remember to choose fresh as much as possible and choose nothing with “added ingredients” as much as possible. Also, drink water until you’d swear you are tied to the toilet. Never skip a meal.
    3. On exercise, do strength building exercises for the shoulders to ease the myofascial pain.
    4. Stay on a routine schedule; you may have to make yourself stay on one. Your body needs to have no less than 8 hours of sleep, maybe more, so allow for that.
    5. Nice hot as you can stand baths each night just before going to bed.
    6. Massage at least twice a month.

    These suggestions are just simple common sense approaches to help you to feel better. I find if I follow these suggestions, I feel better. I hope that these suggestions will help you feel better.

    Warm wishes, Jeannette
  6. Banka8

    Banka8 New Member

    Hi Minimonkey,

    Do a search on Marshall Protocol. I am on it and it is helping me. You might decide the Marshall Protocol is for you.

    The Marshall Protocol is not about supplements. It is about using safe FDA approved prescription medications. You will need the help of your doctor to monitor your progress and prescribe medications.

    Good health to you and I wish you all the best.

  7. Smiffy

    Smiffy Member

    The trouble is that there's no accepted medical cure for our illness, only treatments (we may not even have the same illness as each other). Some alternative therapists are raking in the money because of this, & they're not all honest.

    Over the last 19 years I've tried chinese herbs, homeopathy, cranial osteopathy (very expensive & made me worse), physiotherapy, Threelac & oxygen drops. These have helped others but they did nothing for me & cost a bomb.

    I'm trying the Guai protocol along with the diet for hypoglycemia now because it's affordable & puts me in charge of my own health. It's a treatment, not a cure, & others here have made good progress doing other things.

    To make an informed choice, there's a CFS & FMS section on the Remedyfind website, where all the different treatments are evaluated by sufferers themselves.

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