need beginner help

Discussion in 'Fibromyalgia Main Forum' started by crowesgone, Jan 1, 2003.

  1. crowesgone

    crowesgone New Member

    Hello all, and Happy New Year. I am in the middle of my second major flair up. I am overwhelmed with information. I didn't get any instructions from my rheumotologist after my diagnosis. I know to take it easy with exercise, easy cause I can't do a thing right now, my pain is a 9 plus in the morning, and an 8 the rest of the day. I am taking pain meds, but they are not enough. I was wondering if you could help me with the simple basics. A small start up vitamin regimen, I am not taking any right now. A little information on diet. I just need the starting basics. I cankk't think straight from the pain and the muddled thinking. I am really as sick and tormented as I have ever been. My wife wanted to take me to the ER the last two days, as I honestly felt like my body was giving out on me. I am no stranger to pain, as the last year I have had a cranial decompression, and discectomy, and they have left me in terrible and progressing pain, but it seems like I am constantly having to update my pain scale as to what constitutes a 9 or 10. I am really in a world of hurt.

    Any simple, easy to understand beginner stuff would be appreciated. I don't know why my rheumotologist didn't give me and information. Sorry, I know it is all on the website, but my frame of mind is hindering my investigation process at the moment.

    I thank you in advance for merely listening, and for any help beyond that you may be able to offer.

    I had no idea that people with fibro, and possibly cfids for me, had this amount of suffering. I am so sorry for not understanding your plight until my feet were in the fire.

    Sincerely
    Scott NC
  2. karen55

    karen55 New Member

    Welcome to the board. First, I'm sorry you are in so much pain, which leads me to this suggestion: Find another doc if you can. Any Dr. should be giving you information and instructions, at the very least. So if it's at all possible, I would get another doc.
    Second, there are so many members here, and everyone has found or is finding what works best for them. Myself, I have practically eliminated sugar from my diets, including limiting carbs. I don't eat canned vegies, etc. or processed lunch meats, hotdogs, etc. because of all the sodium and preservatives. I take calcium/zinc/magnesium supplements, Vitamin C, B complex, fish oil, and Vitamin E. Hopefully you will get many responses to your post in that regard. I'm still relatively new to this dd and this board.
    I'm curious about your discectomy; I've had 2 for ruptured disks in my back. What meds are you taking? If your meds aren't helping you, your Dr. should be trying something different.
    Stick around, you can learn a lot from the people here, and if nothing else, you'll have everyone's support.

    Karen
  3. northwoodssue

    northwoodssue New Member

    I've had fms for 4 plus years, and after the initial shock, flood of info, denial, grief, I decided to check everything out for myself. Knowledge is the best defense. I know you are overwhelmed right now, and you have come to the right spot. This website is awesome!
    First, I would check out all the alternative therapies: yoga, accupuncture, massage, reflexology, vitamins, herbs, supplements, magnetic therapy, anything that might be of relief to you! WHY? Because, we all respond differently to the different meds, forms of therapy. I bet not one of us has exactly the same relief from the same therapies, meds. So, don't exclude anything. Just start and elimanate. I wish I could wave a magic wand and give the correct course of therapy just for you, but it don't work that way.
    Just keep your head up and keep trying. You will find the right combination that works just for you!!. A word to the wise, from my experience: If something sounds too good to be true, it probably is. If it is very expensive, comes with a hard sell tactic, and you're told it won't work for the full 2 month, etc, course, don't believe it for a minute.
    good luck and let us know how you are doing.
    sue
  4. teach6

    teach6 New Member

    Welcome to the board. I'm sorry you are having so many problems right now. It's too bad your doc was not helpful. Unfortunately for us many are not.

    You should check the doctor referral available at this site. Go to the top of this page and click on Doctor Referral. That will take you to another page. Click on Co-Cure Good Doc list and then you can look for a better doc in your area. If there are none listed, make a post asking if anyone has a good doc where you live.

    As for where to begin with supplements I think you want to be sure you are on a good multivitamin. This site has a great store with high quality supplements at good prices. I buy as much of mine as possible here. They have a CFS/FM Multi, which many of us take.

    You might also look into magnesium and/or Malic acid. We are usually low in magnesium so it is usually a good place to start with supplements. You can buy it by itself or with Malic acid, as ProEnergy.

    Are you having problems with sleep? Most of us are in the beginning. If your doc did not give you something to help with your sleep there are several products here that can help you get a better night's sleep. Many swear by ZMA. I cannot take it because the magnesium would interfere with the Neurontin I take at night.

    I hope this was helpful. Let us know how you are doing.

    Barbara
  5. LisaMay

    LisaMay New Member

    I'm sorry that you are in such agony. I feel for you.

    First, find a new doc who will be a partner in your recovery. I'm not surprised that he left you clueless. It is our responsibility to find someone who is willing to help us help ourselves.

    Second, request different pain meds if the ones you are taking don't help.

    Third, what works for one, might not for another. I'll bet that everyone here has their own "conconction" of meds, herbs, vitamins, and exercise. How are you sleeping? This is a major part in our recovery.

    Fourth, don't give up! We struggle each and every day, but you just have to keep going.

    Good luck. Look forward to better days. Lisa
  6. Shirl

    Shirl New Member

    Hi Scott, I have listed below what I take for Fibro, this took years, and I do mean years to find a regime that works for me.
    The most important thing to begin with is the magnesium, the first supplement on this list. The sleeping problem was solved for me with 'ZMA' also on the list.

    The only thing I omitted is drinking half my body weight in ounces of water per day,along with a quarter teaspoon of Sea Salt throughout the day. This is so important, that I am should have said this first!

    Be very sure to start with one thing at a time, if it does not agree with you, then you know what the problem is, if you take more than one different supplement, then you would have to stop everything and start over again.

    Print this out if you can, as it is long and will take time to digest it all!

    Also be sure to consult with your doctor if any of the supplements we share here will interfere with your prescription meds.

    Again, welcome to the board, and hope we hear from you often. Be sure to let us know how you are doing.

    Shalom, Shirl
    ------------------------------------------------------------
    Product; Pro Energy: Malic Acid & Magnesium Glycinate
    (I take one before breakfast, and one before lunch)
    This is for energy and pain.

    Product; Ultra B-Complex (High Potency with Folic Acid)
    (1 capsule after or during lunch) This helps with brain fog, and energy too.

    Product; 800IU's of Natural Vitamin E
    (For numbness, heart, blood etc)

    Product; Ester C 500 milligrams
    (antioxidant, helps prevent colds, virus etc.)

    Product; ZMA (zinc, magnesium, Vitamin B-6)
    For sleep, deep sleep also helps with muscle pains.
    (2 capsules at 10pm )

    Product; Jarro-Dophilus (Probotics)
    3 a day for IBS, replaces good bacteria

    Product; Melatonin (5milligrams)
    To help fall asleep, take right before bedtime.

    All the above can be bought from Pro Health, be sure to ask for a free catalog/Newsletter too. If you want to call the number is; 1-800-366-6056 or you can order on-line. Just go to the 'Store' link on the top right of this page for additional information on supplements.
    ___________________________________________________________

    Product; Essiac Herbal Tea by Resperin Corp.
    This is a blood/liver cleanser. It is also known as a cancer cure/preventive.
    I take two ounces in the morning two ounces at night.
    Can be bought at most health food stores and Supplement catalogs.

    Product; Polynesian Pure Noni Juice
    (I take one teaspoon before breakfast, one before lunch for my IBS, it is a great product). I order it by the case!
    Can be bought in most health food stores, be sure you get the 'pure' juice or it won't work.

    Product; Natural Calm put out by 'Natural Vitality'
    This is a powdered Magnesium Citrate.
    (I take a teaspoon a day for pain also. But don't take too much it will give you diarrhea).

    This is about it for the time being, as for a multi vitamin, I have trouble digesting them, so I drink two cans of Ensure a day for the multi.
    ____________________________________________________________

    Here is some good advice; I strongly recommend you add ONE thing at a time for at least a week or two, this way if you have a problem with a product/supplement, you know what is causing it. If you try to take too much at once then if you have a problem, you would have to quit everything and start over again.
    I learned this the hard way, so though I would pass on this wise advice!

    It took me years to get the right things that I could take. Wasted a lot of money on eyerything from doctors, prescription meds, and vitamins and herbs too.

    Just remember, we are all different, so some of what I take might not be the right thing for you. It really is trial and error with these illnesses.

    Hope this helps, and if you have any questions, please feel free to ask. I am usually here everyday, but not at a special time.




    PS, always buy the best supplements you can afford, as you really get what you pay for with supplements. Pro Health has some of the best ones I have ever taken, and I am not just promoting them, its the truth. I have taken there products before I ever heard of this board.