Does anything make a difference?

Discussion in 'Fibromyalgia Main Forum' started by ooouuuch, Aug 17, 2009.

  1. ooouuuch

    ooouuuch New Member

    Fore those of you who have had this for at least five years, do think anything like diet change, exercise change, vitamin change anything make a difference in what we are going through?
    I truly am interested. I have tried very nearly everything, I have had this for nigh on ten years and I'm wondering who has done something that made a difference.
    Has anyone you know ever been cured of this?
    What is the longest time span that you know of to have had this?
  2. greatgran

    greatgran Member

    I have CFS and have been to many doctors (very disappointed in most) tried several things but nothing has really helped.. except xanax for my anxiety/panic and depression, the xanax takes the edge off and helps me to tolerate .

    This is my 8th year and I seem to be getting worse, of course my age my play a part.

    I take a good multiple-mineral vitamin, fish oil, vit.D 3, Co-q10 and Xanax.

    There are times that an antibiotic seems to help as I seem to have chronic sinusitius..

    Do hope one day there will be something that will help each of us.

    God Bless,
  3. jole

    jole Member

    I have FM/CFS and have found no answer after 7 years. I removed all white foods, tried the treadmill but couldn't ever get over 5-6 minutes at the lowest level (then paid the price), have used dozens of supplements (even expensive ones), many prescription medications, and even oxygen IV therapy treatments.

    The only thing that has improved for me is my acceptance of this dd being a lifelong part of my life. I will continue to try to find answers, but I no longer fight against it, and feel that has helped me more than anything. Love....Jole
  4. ladybugmandy

    ladybugmandy Member

    for CFS, i have known people who have had it for 30, even 40 years (and still have it).

    i have heard of a few people being cured using different methods, such as mold avoidance, antivirals, or antibiotics. i think it depends on which infections you have.

  5. SnooZQ

    SnooZQ New Member

    I'm sorry to hear that you've been suffering so long without relief.

    I've come from needing to use a cane much of the time, and being housebound with a walker during my flares. I have a life now -- use the walker not at all, the cane so infrequently it gets "lost." I have a few observations from my past 10 years. I was dxd with fibro about 6 yrs ago, but had had problems long before the actual dx. Not unusual in that respect.

    If you look at those of us who have made progress on either trad med or alternative programs, I think there is one commonality. We have sort of "lucked out" on finding what helps our particular type of FM or ME or CFS.

    Many people believe that all of us with these diagnoses have the "same thing," but I do not believe that. Science is in the early stages of understanding these DD. In future, scientists & healthcare providers will be able to point to "subgroups" of sufferers. Just as there are different kinds of cold & flu viruses that cause similar symptoms. "Cancer" in decades past was a single entity -- but now we know there are many different types of cancer -- and we have experts to advise us on the best treatments for each type.

    Not everyone's pain and/or fatigue has the same cause & therefore not everyone benefits from the same treatment. If my pain is due to depression (a real possible cause) or a brain-chemical imbalance that increases pain signals, then I may benefit A LOT from antidepressants.

    But if my pain is caused by hormonal imbalance, then ADs may make my pain worse. Working to resolve the hormonal balance, on the other hand, may be extremely helpful.

    Many people on the board speak of helpful dietary changes. Most of us benefit generally from de-junking, but it's hard to find a one-size-fits-all diet that leads to universal improvement. However, for those who hit on a specific food intolerance that contributes to their illness, making this discovery can be life-altering, in a good way.

    Some people discover they suffer from viruses or mold or heavy metal toxicity, deal with it, and are much improved. For some people there is a methylation cycle deficit that can be addressed. But doing the treatment protocols for those problems is likely to be most helpful if those are the actual causes of YOUR specific illness.

    I know people who've had FM & CFS for decades.

    If you've tried nearly everything that comes along over the years, make a list of what hasn't helped much. If anything has made any sort of difference, note that. Look at your family history & what sorts of health issues have plagued your relatives -- even if not your DD, you may get some clues about what sorts of genetics may have influenced your DD.

    Learn all you can by reading. Start with your local public library -- they should have a number of books of interest, or be able to obtain them for you if they don't own any.

    I don't consider myself cured. I've been blessed to have the resources to be able to chip away at the hodgepodge of factors that caused my pain & fatigue. I have a life now. I can now do volunteer work, garden, make social plans -- things I love to do that weren't in my life when I was at my lowest point. But it's taken many tests, a lot of follow-through, changing docs, some trial & error, to get to where I am now. It's not been inexpensive. Very little has been covered by health insurance.

    I hope you can keep your hopes up. I believe the face of medicine is going to change immensely in the next 10 years, and there will be many more effective treatment options for us as a result.

    Best wishes.
    [This Message was Edited on 08/18/2009]
  6. jasminetee

    jasminetee Member

    Whether you're talking about CFS or FMS I feel the answer is the same. Except for the things mentioned here that have helped some people, nothing really helps. Nothing makes it go away but sometimes people start feeling better for no reason.

    I've had CFS for 25 years and severe FMS for 9.
  7. hugs4evry1

    hugs4evry1 New Member

    Although I'm not exactly a poster child for good health because I seem to get a new disease every year, Fibro has now become the lowest of the priority list for me. NEVER thought I could say that!!!

    And yes, I did make changes in just about everything. Things I never thought I could do.

    I got rid of my non-stick pans....if they kill birds in your house if left on too long, they can't possibly be 'good' for us.

    I stopped using Aspartane in my coffee, went to sugar and now I drink it black and love it. (used to use 1 Sweet N Low and 2 Equals in each cup of coffee!)

    I stopped eating processed/chemically added foods. If advertisers have to entice you to eat it, it's NOT good for you!!! Apples, bananas, fruits and veggies are what our bodies are meant to eat. If your Grandmother wouldn't recognize's NOT food.

    Cheese is not a powder, Rice Krispies aren't food and potatoes are those round brown things under the counter.

    Rachel Ray taught me how quickly you can prepare a real meal using real foods and I treasure that lesson. I might not be as fast as she is, but I can throw together a good meal in less than 45 minutes!

    And I used to be the queen of grocery cart filled with boxes of crap and only the small purse/child area with fresh fruits and veggies. Now it's the opposite, my cart is filled with good things to eat and cook and the crap takes up barely any space at all.

    And my fibro began almost 30 years ago when I had Toxic Shock Syndrome, my body was never the same after that then progressed to being bed bound for over 9 months and pain was my constant companion.

    I'm virtually pain free now although I still have problems with my joints and other diseases that make life extremely difficult, yet as I said, Fibro is now the least of my worries.

    The most important vitamin I would recommend is the Cal/Mag/Zinc combo. We're all deficient in Magnesium and our bodies need it so badly. It helps with the muscle pain so much.


  8. munch1958

    munch1958 Member

    The details of my quest are in my profile but I had to change just about everything in order to get better. The main thing is to give up on finding ONE thing to change to fix this.

    My CFS & FM were caused by a combination of genetic factors or a predisposition for this, hormone deficiencies like adrenal insufficiency, growth hormone deficiency, pituitary dysfunction, hypothyroidism, food intolerances, B12 deficiency, Vitamin D deficiency, magnesium deficiency and chronic infections mainly Lyme, Chlamydia pneumonia, EBV, Bartonella, Babesiosis, Candida, and Mycoplasma pneumonia.

    I gained from each little thing that was fixed or changed. Then all of the sudden I started feeling great one day. Things were so bad that I used to crawl in bed and hurt all over every night. I'd cry until I feel asleep because things were so hopeless.

    Now I bounce out of bed with lots of energy. I exercise whenever I want. I'm enjoying my life now.
  9. PVLady

    PVLady New Member

    I came to this board several years ago and was very sick at the time. In 2006 I was diagnosed with Gallstones - loaded with them. I never had the typical textbook symptoms so no one ever thought to rule them out. After running to several doctors for years, and hurting so bad all over - I finally had surgery and after a year was so much better.

    I know many here don't have gallstones but I warn everyone to make sure you don't. It is very ofter overlooked.

  10. astroherb

    astroherb New Member

    Yes, for me, certain things have made a difference. I have had FM for decades, but was only formally diagnosed with it a year and a half ago. Several small things have made a difference for me.

    Eliminating the yeast in my body was major. I changed to a very low carb diet and took oil of oregano and oliver leaf extract and lots of probiotics--then on my doctor's advice changed to horopito. I am no longer bothered by this as long as I adhere to my diet. If I occasionally eat a high carb food I up my probiotics intake. Elimating yeast got rid of the brain fog.

    Getting proper sleep was another biggie. My rheumatologist prescribed Flexeril at night, which helped tremendously. I believe the pain wakes me up at night. If I can keep the muscles relaxed there is a better chance of sleeping all night long. Sleeping gave me energy to make it through the day much easier. It meant the difference between keeping my job or needing to quit because of fatigue.

    Taking magnesium, MSM, malic acid, grapeseed extract, and D-ribose all seemed to help. Especially the magnesium, MSM and malic acid. I learned about these supplements through this board and especially thanks to Jamminhealth.

    I am now under the care of Dr. Gary Farr. Through tests I found out the root cause of many things and we are addressing them.

    A major one was #7 adrenal exhaustion. I have been taking adrenal supplements for 2-1/2 months now and have seen a major improvement.

    Farr also found I had very high antibodies to gluten (probable celiac) so I have gone on a totally gluten free diet. The funny thing is I didn't have major digestive problems so fought him on that one until I saw the test results. As it turns out, digestive problems are very hard on your immune system and can also lead to adrenal exhaustion. Everything works together

    The last thing Farr is addressing is liver function, lack of pancreatic enzymes and a messed up detoxification system. Turns out I was only digesting a very small part of the food I ate leading to malnutrition.

    This post has been long, but I am starting to realize that the reason it is so hard to get well is because many, many things go into bringing about the symptoms that are lumped together as FM. I am so glad that I am beginning to get a handle on at least some of them.

    My energy level and stamina have improved a lot and I have high hopes that I can keep on working for two more years until I can retire.

    I hope some of this will help someone. Just keep plugging away until you find the things that will help you.
  11. momof3inks

    momof3inks New Member

    You said: "Taking magnesium, MSM, malic acid, grapeseed extract, and D-ribose all seemed to help. Especially the magnesium, MSM and malic acid. I learned about these supplements through this board and especially thanks to Jamminhealth."

    Do you order those supplements through a particular website or do you just buy them from your local healthfood store? Just curious if adding these things will help me too!

    I've been told I have a gluten sensitivity...but haven't been successful in totally eliminating Gluten.

  12. loto

    loto Member

    you all have replied so well to this post. I wish I could explain my situation so well. One of my problems is expressing my thoughts.
    I just wanted to note the posts that mentioned it takes a lot of time and different doctors to get to the root of all of our problems.
    I was only diagnosed a little over a year ago with FM. I'm in the process, thanks to this board, of finding out if my throid is ok. Haven't been to an endo yet, but next week will be getting a referral to see one. I do suspect that may be another of my problems.
    I was also tested for Lyme last Spring, but never got any answers from it. The basic test I had done said only that the borrealis thing was highly present. So, 2 doctors said I don't have Lyme. Well, isn't it possible that I have some coinfection, but not actual Lyme? So, that's still up in the air.
    Anyway, just wanted to say that yes, it takes time, money, and many doctors and tests to get everything known, and then to find out what will really help us with all of our problems, and as I've said before, I'm so greatful for this board and everyone that answers all of my questions. Without all of you, I'd be so lost, and probably would give up and never get out of bed each morning.
    Hang in there everyone, we're all on the right track!!!

  13. astroherb

    astroherb New Member

    I thnk that you could get these supplements at your local health food store or online. The best price for D-ribose that I found was from Lucky Vitamins. It is quite expensive. The others are relatively inexpensive. Just remember that it sometimes takes awhile before you notice the effects from herbs, vitamins and supplements. They don't make a difference instantly like pharmaceuticals.

    If you are taking any pharmaceuticals you might want to just make sure that none of these things will adversely interact with them.