What Worked for Me

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by ProHealth, Oct 23, 2006.

  1. ProHealth

    ProHealth Member

    Please share with the community things you believe have helped improve your health status or ability to cope.

    Collectively, our discoveries and ideas, no matter how small, may ease the way for many others.
    RadioFM and Doing pretty good like this.
  2. deliarose

    deliarose New Member

    on Rich Van Konyenburg's methylation protocol probably made the most dramatic difference to my health. Finally got me back in the land of the living.

    Otherwise Transfer Factor, Vit D, probiotics, green food drink, antioxidants, B12, and glutathione.



    delia
    [This Message was Edited on 04/17/2007]
  3. ljimbo42

    ljimbo42 Member

    I have spent between 5-$6,000 dollars on supplements over the last 6 years. I have tried probably 100 different supplements and many of the most popular protocols. <BR>
    <BR>
    NOTHING has come close to the relief I have had from taking methionine to increase methylation. My energy is WAY up, my pain is WAY down, and my thought process is much better! I take 1 gram twice a day on an empty stomach, the results are INCREDIBLE and I started to feel better in just a few days!! Also, I didn't experience any negative reactions like I do with most supplements.<BR>
    <BR>
    All the best-Jim
    <br><br>[<i>This Message was Edited on 04/27/2013</i>]
  4. josbutterfly

    josbutterfly New Member

    It is great to see people sharing what has helped them. I am completely well from ME and aware that often people who get well don't come back on chat rooms and share that with others - i think that is so important to give other people hope that recovery can and does happen via different routes ( I felt so hopeless when I was ill and really sure I would not get better). I had been bedridden and pretty much unable to do anything - needed to be wheeled in wheel chair to loo and that was only time i got out of bed, could not read, could only speak a few sentences at a time, could not listen to music or TV or tolerate anyone speaking to me for more than a couple sentences, could hardly sleep at all, lay resting with eye mask on virtually all the time, my mum had to look after me completely... did the Lightning Process course and have never looked back, now am actually healthier than I was before ME, completely symptom-free, working full time, busy social life,even training to do 10 k race for life this summer and thanking God every day. I know there is quite alot of sceptism about LP in the ME community but I would really encourage people to have an open mind and look in to it themselves, I have been in contact in person and via facebook with many many people who have had similar results to me, so do think about it &lt;BR&gt;
    website is: http://www.lightningprocess.com/landing or buy the book - cheaper on amazon than via the LP page. &lt;BR&gt;
    Wishing you all find your routes to recovery, God bless
  5. josbutterfly

    josbutterfly New Member

    It is great to see people sharing what has helped them. I am completely well from ME and aware that often people who get well don't come back on chat rooms and share that with others - i think that is so important to give other people hope that recovery can and does happen via different routes ( I felt so hopeless when I was ill and really sure I would not get better). I had been bedridden and pretty much unable to do anything - needed to be wheeled in wheel chair to loo and that was only time i got out of bed, could not read, could only speak a few sentences at a time, could not listen to music or TV or tolerate anyone speaking to me for more than a couple sentences, could hardly sleep at all, lay resting with eye mask on virtually all the time, my mum had to look after me completely... did the Lightning Process course and have never looked back, now am actually healthier than I was before ME, completely symptom-free, working full time, busy social life,even training to do 10 k race for life this summer and thanking God every day. I know there is quite alot of sceptism about LP in the ME community but I would really encourage people to have an open mind and look in to it themselves, I have been in contact in person and via facebook with many many people who have had similar results to me, so do think about it &lt;BR&gt;
    website is: http://www.lightningprocess.com/landing or buy the book - cheaper on amazon than via the LP page. &lt;BR&gt;
    Wishing you all find your routes to recovery, God bless
  6. IanH

    IanH Active Member

    Were you a member before you started the lightning? If so when and what were your posts?
    Soul* likes this.
  7. IanH

    IanH Active Member

    Were you a member before you started the lightning? If so when and what were your posts?
  8. Gothbubbles

    Gothbubbles New Member

    I've been taking a million supplements a day for many many months now:
    Vit c
    magnesium
    b-complex
    dhea
    melatonin
    zinc
    vitamin d
    calcium
    vitamin e
    coq10
    l-carnitine
    a powerful multivitamin with everything in it
    probiotics and turmeric for supposed candida

    a million herbs:
    true licorice
    echinacea (2 weeks on, one off)
    goldenseal
    arnica gel for pain
    ginger for upset tum tum (Really does the trick for nausea)
    Milk thistle
    cod liver oil
    primrose oil
    Gingko (this just made me twitchy--it works by increasing blood flow which in turn is supposed to help the brain)

    I'm probably forgetting something here.

    I've also tried antidepressants (even though I'm not depressed), antianxiety meds, neurontin, fludrocortisone, prednisone, antivirals, and so on.

    But the real kicker is the only stuff that actually helped me:

    Magnesium--I'm low in this anyway (As are a lot of CFS sufferers)! But I really notice a difference if I don't take it. I take at least 1000mg over the course of the day and I'm still low. I'll up it and take more a little at a time.

    D-ribose-- Take two teaspoons 3 times a day. Within a week my muscle pain was utterly gone, about 10-20% improvement in my overall health I'd say. I noticed when I stopped taking it.

    B-vitamins

    L-carnitine (you can eat meat to get this, so I no longer take the supplement)

    I find that if I leave something out of those then I don't get as good of results. But with it all there I do really well.

    Non-pharmacologial treatment that has helped:

    Massage therapy helped a lot!

    So did just sitting in an outdoor pool for a couple hours. It rid me of my blasted muscle pain. I think the water pressure helps my circulation. Jacuzzis just made me worse because they're too hot.

    I read some really great stuff about cardiac/mitochondria malfunction. A lot of good research does if it doesn't have a practical application, but I took the supplements in it and I DO feel better. Nothing has ever done that. I have not gotten my life back, but I can maintain a status quo now without overdoing it. <a href="http://www.cfids-cab.org/MESA/Lerner.html#Cheney">The link to research on cardiac malfunction</a> British Dr. Myhill has a lot of great research on this in particular (too bad I live in the states).

    Going to bed at about 10pm helps (I am bad at this) but when I do it, I feel a LOT better the next day. They say 1 hour of sleep before midnight is worth 2 after. I thought it was hooey, (I'm a night owl) but I tried it anyway because I wanted to get better so badly. It really helps a lot. Try it! Go to bed at 10pm and get up at 8am or earlier. Do it for a week and see if it helps at all.

    DON'T LISTEN TO ANYONE WHO TELLS YOU EXERSIZE CAN CURE YOU! If the tests are right and it's a problem with metatbolism, you're only going to prolong your illness (ironic, huh?). Also, I tried all the easiest exersizes in the world, and it really wiped me out. I bet the same happens to most CFS sufferers.

    I stretch every single day, and I consider that as much exersize as I can handle.

    None of this may help you, but if it does, then I'll be very happy. It has not been wasted on me, I can tell you that right now! I went from lying in bed all day to being up more, and I can cook for myself more often, and get more done. I feel almost like a person. It's been so bad for me, I was delighted by the D-ribose! I could NOT believe how well that stuff worked once I took the right amount, even though it's not a cure, any little improvement was worth it. And it tastes great!

    Well, best of luck to all of you, keep up the good fight!
  9. hugs4evry1

    hugs4evry1 New Member

    The first thing I did was to begin eliminating things that are horrible for me. I got rid of my non-stick pans, quit aspartame products, cut down my Pepsi habit to less than one a day, quit smoking, and even found toothpaste without flouride. I also stopped buying and eating crappy chemical/processed foods.

    Then when I started to see things more clearly, I started supplements from here at Pro Health.

    Began with the amazing Fibro Multi with Malic Acid and felt a small kick the first day I tried it. (Wonderful stuff)

    I've moved on to Probiotics, Sublingual B-12, Astragalus, Green Tea, Glucosamine, Coenzyme Q10 and a few others. Also learned about the wonders of a balanced magnesium/calcium/zinc supplement here too, so my muscle pain has almost disappeared.

    I'm eating better than I ever have after learning more about nutrition on this board. Lots of fresh fruits and veggies.

    So I've moved up on the scale from a 0-10 to about 30-40 on the good days. That's a major improvement for me.

    Hugs,

    Nancy B


    TenaciousButTired likes this.
  10. xchocoholic

    xchocoholic New Member

    I eliminated gluten and other food allergens, added healthy fats and treated for candida and toxins. I didn't use any supplements, just natural herbs and foods.

    I have improved a great deal in the last year. I can walk completely normal all of the time now whereas before my legs would feel heavy if I had to walk any distance.

    I can sleep normally now too without any meds. I had insomnia and myoclonus (seizures). And I am no longer hyper or having adrenaline rushes.

    I am still getting more tired than I would like, but I have been on the go and mostly out of town for the last 6 weeks so some fatigue is to be expected. And I am dealing with hypoglycemia issues.

    Good luck with all of this ... xchocoholic
  11. penstemon

    penstemon New Member

    I've tried many things over the years. A few things stand out.
    For my digestive system, going off of my allergy foods helped a lot. Ultra Clear Sustain has helped better than anything else I've taken for it.
    For infections, zinc and a good multivitamin help the best. Whenever I start getting a flare-up or the flu, I just increase my zinc.
    Eating 4 small meals a day, plus snacks helps the hypoglycemia.
    And for coping, I found that balancing my health works best. I used to listen to those who think all my troubles would be solved if only I could sleep normal hours, or just "try harder". I destroyed my health multiple times. My health is far more stable when I listen to my body instead.
    TenaciousButTired likes this.
  12. caffey

    caffey New Member

    1. My heating pad is my best friend.
    2. Taking breakthrough meds before the pain gets too bad.
    3.Learning to say no.
    4. Asking for help.
    5. Try to get out at least every other day so I don't get too into myself.
    6. Try and get dressed every day.
    7. Keeping reg. hours and lie down for a nap for only 1 hr.
    hope that helps someone.
    Cath
  13. DoveL

    DoveL Member

    Great thread..Thanks for starting this!!

    Things that helped me...(I have CFS/FMS)

    Myofacsial (SP?) massage, combined with physical therapy for my Fibro.

    Streching/everyday, 2-3 times

    Heat on my sore parts!/also HOT showers

    A good mulitvitamin (from Life Extentions)

    Probiotics (by Garden of LIfe)

    A Calcium, Magnesium and Vit D Supplement (Bone Restore by Life Extentions)

    Having 'quiet time'

    doing word games on the net (to help stimulate my brain)

    MOST important, getting at least 8 hours of sleep a night. I take a xanax before bed, Does wonders for me!!

    Walking, mild excersice when I can!

    Eating a healthy diet!!! Helps me for sure!

    I was bedridden for over 2 years, and have come a long way!! I have also found this board to be VERY helpful.

    Thanks Friends!

    CHEERS!
    DOVE
  14. DoveL

    DoveL Member

    Hello there Stormsky.

    Can you please tell me what the 'shake' is that you are taking that helped your depression and hair loss???? These are 2 things that I could use help with thanks!!

    Thanks all for your wonderful tips!

    DOVE :)
  15. cobie

    cobie New Member

    Basically.
    Organic Diet, no carbs, no gluten, no sugar , no tea coffee, no dairy, LOTS of veges, vege juice, no allergic foods
    probiotics
    lotsof vits, minerals
    weekly B 12 and B injections
    heavy metal detox with DMSA
    reduce chemical exposure, no perfume, no chemicals in house
    cobie
  16. rockymtnmom

    rockymtnmom New Member

    I need to try harder to remember to do all this, as I feel so much better when I can keep up!
    - An understanding compassionate doctor
    - Having regular appointments with a psychotherapist with experience in working with people with chronic disease
    - Swimming, floating, being in water, aquatherapy
    - hot baths at night, for sleep and pain
    - Cymbalta: a newer antidepressant developed for neuropathy but works well for fibro folk as well. It is both an SSRI and SNRI. Took about 3 months to fully work, but I saw steady improvement from the beginning (I have been on other SSRIs for about 8years, this one really makes a difference)
    - having a designated nap time that is SACRED every day
    - pacing myself
    - distraction when there is not a lot I can do about my state, instead of moping and making things worse
    - having pets (dogs, cat, turtle)
    - being on a good regimin of vitamins and supplements - particularly multivit, malic acid, enzymes
    - going organic, and reducing exposure to chemicals
    - improving comfort of bed (time to do this again)
    - no watching TV or reading right before bedtime
    - using a heating pad with massage feature
    - going to a pain specialist
    - relaxation techniques
    - being good to myself - forgiving, understanding, not being too critical, giving myself a break, going over the good things I CAN do
    - I need to do a better job of keeping up with other people. This is really hard for me, but I need to try
    - getting sunshine, using a full spectrum light, tanning occasionally
    - removing myself from toxic people and situations (need to work on this one too - it is critical for well being!!)
    - Using lydocaine patches (a topical anesthetic) on particularly painful spots at bedtime. It is not a quick fix, but by morning, the pain is usually reduced or gone
    - eating meals and snacks throughout the day - not skipping meals
    - posting lists and signs for myself to help with memory and remind me to be careful, slow down, etc.
    - doing a TON of research on my DDs
    - sending subscriptions of FMS/CFIDS newsletters to people who try hard and care but are somewhat misguided in their attempts to be helpful (parents, etc.)
    - limiting stimulus (noise, light, etc. and removing myself quickly when it gets to be too much o I don't freak out and sob or yell)
    - seeking out and accepting as much help as possible!!!!
  17. rockymtnmom

    rockymtnmom New Member

    I need to try harder to remember to do all this, as I feel so much better when I can keep up!
    - An understanding compassionate doctor
    - Having regular appointments with a psychotherapist with experience in working with people with chronic disease
    - Swimming, floating, being in water, aquatherapy
    - hot baths at night, for sleep and pain
    - Cymbalta: a newer antidepressant developed for neuropathy but works well for fibro folk as well. It is both an SSRI and SNRI. Took about 3 months to fully work, but I saw steady improvement from the beginning (I have been on other SSRIs for about 8years, this one really makes a difference)
    - having a designated nap time that is SACRED every day
    - pacing myself
    - distraction when there is not a lot I can do about my state, instead of moping and making things worse
    - having pets (dogs, cat, turtle)
    - being on a good regimin of vitamins and supplements - particularly multivit, malic acid, enzymes
    - going organic, and reducing exposure to chemicals
    - improving comfort of bed (time to do this again)
    - no watching TV or reading right before bedtime
    - using a heating pad with massage feature
    - going to a pain specialist
    - relaxation techniques
    - being good to myself - forgiving, understanding, not being too critical, giving myself a break, going over the good things I CAN do
    - I need to do a better job of keeping up with other people. This is really hard for me, but I need to try
    - getting sunshine, using a full spectrum light, tanning occasionally
    - removing myself from toxic people and situations (need to work on this one too - it is critical for well being!!)
    - Using lydocaine patches (a topical anesthetic) on particularly painful spots at bedtime. It is not a quick fix, but by morning, the pain is usually reduced or gone
    - eating meals and snacks throughout the day - not skipping meals
    - posting lists and signs for myself to help with memory and remind me to be careful, slow down, etc.
    - doing a TON of research on my DDs
    - sending subscriptions of FMS/CFIDS newsletters to people who try hard and care but are somewhat misguided in their attempts to be helpful (parents, etc.)
    - limiting stimulus (noise, light, etc. and removing myself quickly when it gets to be too much o I don't freak out and sob or yell)
    - seeking out and accepting as much help as possible!!!!
  18. clifford

    clifford New Member

    what is transfer factor?
  19. BarbaraJGill

    BarbaraJGill New Member

    I have been dealing with FMS for approximately 40 years -

    1. As a young woman I cried a LOT and tried to outrun the pain. I was so confused. I tried various RX's - nothing worked. I "burned out" in 1994 and was RX'd an anti-depressant and rest for over a year. I rested a great deal. Daily walks but gently. THEN I began to make the changes I now try to incorporate into my life. It's a daily challenge.

    - Good diet

    - Gentle Exercise: Pilates, Swimming, Walking. I also am a registered nurse and work part-time so walk a lot at work.

    - I take a sedative at bedtime now to ensure a good night's sleep. I function very well as long as I get my rest.

    - I write and paint - and this puts me into a "space" where I feel no pain.

    - Meditation and self-hypnosis techniques also have helped.

    - I do not FIGHT the pain anymore. When I flare I try to go with it. I shower - hot water helps.

    - I try to make good decisions that will not stress me. When stress enters my life I try to detatch.

    - I am now 55 years old, semi-retired and will devote the forseeable future to a project that will hopefully help others help themselves. It can be viewed at www.shandarrah.com.

  20. pris2000

    pris2000 New Member

    Right now I'm in a relapse with a bad cold following the news that one of my closest long term friends' lymphoma is back and the cure this time with chemo is less certain than before. Really tells me that stress is the great leveler, but, these things have all helped, as overall I'm better than when CFIDS started:

    probiotics
    healthy diet with no sugars, sodas, cheese, etc. I chose the Zone diet and have slept better and my cholesterol, which had been out of whack for a year reversed itself
    omega 3
    lose dose of Q10
    focus on something creative, ie I write and publish poetry, even though I have to pace myself and do it only as I feel up to it. Am also VERY slowly cowriting a book with a healthy friend.
    klonipin..I realize the debate about this class of meds, but until my doctor tried this, I shook when exposed to sound, visual stimulation, noise, conversation, etc. It enabled me to function again, so I'm grateful
    ginkgo-stopped the pain in my ears that hit when the tinnitis started.
    St John's Wort..stopped the morning emotional lows that started with CFIDS and also gave me more clarity
    supportive doctor
    chiropractic help
    being quiet after around 8 and going to bed by 10
    leading a quiet life (no, not my first choice)

    I'm sure I've forgotten things. I want to look more into the tranfer factor since a number of people have mentioned that.
  21. nleer

    nleer Member

    I have been using Nature's Sunshine , probiotics, a multivitamin, DHEA, Olive leaf extract and Pro Boost, this helps my weekend immune system. And no refined sugars or bad carbohydrates, helps with yeast overgrowth. The predisone and antibiotics can cause yeast overgrowth and fungal overgrowth. I also have found a good endocrinologist who is treating my Hypothyroidism properly. NO pain, unless I am sick then the Fibro will flare.

    [This Message was Edited on 10/25/2006]
    [This Message was Edited on 11/05/2006]
    [This Message was Edited on 10/13/2007]
    [This Message was Edited on 10/13/2007]
  22. jacampbell

    jacampbell New Member

    Morning:
    NADA
    Paxil
    Advil

    During the day:
    Fibro-Response by Source Naturals
    Women's Exclusive Formula by Vitamin World

    At night:
    Ambien CR
    Lyrica
    Flexeril

    And MOST IMPORTANTLY I make sure to exercise or do yoga EVERY DAY! I can feel the difference when I don't. Even if it is just for 5 mins ... It keeps me in the habit and makes me feel better.
  23. monkeyman

    monkeyman New Member

    First the lifestyle stuff,

    EFT / Emotional Freedom Technique www.emofree.com
    This technique is amazing, initially my rational mind couldn't understand it, but I tried it out on a number of day to day and then more deeper issues and found it helpful. Free to learn and you get helpful email updates. Also Carol Look and Dr Carrington's adaptions are easy to use.

    Some good friends, either chatroom / internet or real life, I've been lucky to find some real support and friendship through these.

    Laughter, funny films or tv series are cheap and easy to get on dvd, Friends, Frazier, Jackass, whatever makes you laugh : )

    Powerful daylight desk lamp, helps me concentrate especially in the winter.

    Relaxation tapes, I use the ones by Gill Edwards from www.livingmagically.co.uk , but you need to find ones with a voice that you get along with.

    Religeous / Spiritual beliefs. I practise Soka Gakkai Buddhism as I find the chanting useful, but whatever your denomination, a broader dimention to life can help.

    Sauna / Steamroom, together with drinking a lot of water this is like a mini detox, only go when I've got the energy though.

    Increased water intake, either filtered water, fruit juices, herbal teas, or just a mug of warm water. Even slight dehydration makes symptoms worse.
  24. bat80233

    bat80233 New Member

    My chiropractor has been the biggest help. Along with regular treatments he started me on DSF, an adrenal supplement with vitamins. The DSF also eliminated about 90% of the RLS.

    A few month ago I began to eat differently. I have a proper amount of protein and complex carb for breakfast. I am now able to complete thoughts and sentences where I used to just lose myself in the middle.
  25. monkeyman

    monkeyman New Member

    The sinatra protocol made a big difference

    L Carnitine
    Alpha Lipoic Acid
    Co enzyme Q10
    D Ribose
    Magnesium
    Vit B3
    http://www.drmyhill.co.uk/article.cfm?id=373

    If you search around these supplements are not too expensive, the only difficult one is the D Ribose which is more of a body building one.

    Fats - Lecithin and Vit B 15, also Evening Primrose oil or a Fish oil, or a blended oil mix. Your cell membranes are oil based, your body needs fats and oils.

    Adrenal Support - Siberian Ginseng or Rhodiola both help combat fatigue.

    Strong time release B vitamin, again helps with fatigue and relaxation.

    Chlorella, taken at night helps your body's natural de tox. Absorbs loads of rubbish. Take extra water when using.

    Juicing. I bought a Matstone / auger juicer and have about a liter of carrot and apple juice each day. Juice is much easier to digest than all that raw fruit.

    Extra fluid. Filtered water, fruit juice, herbal teas all help.
    [This Message was Edited on 10/25/2006]
  26. daphnehill

    daphnehill New Member

    I was diagnosed in 2004. I am 39 and was given this DD as a reaction to the Influenza Vaccine. I am better than initally ,but how do you know when you are as good as you can get?
    Each day:
    Elavil- side effect to tell my brain I don't hurt. (helps some)
    Darvocet-I will not let myself have more than two per day. (habit forming) Break through pain I suffer through or take ^ motrin to make it.
    High Energy Multi Vitamin - if not for Vitamins I would be in the bed 24/7 with ^ pain and fibro fog.
    Sublingual or liguid vitamin B.
    When i keep up with taking all the pills I take Magnesium,fiber,Omega 3,melatonin,more vitamin B

    I tried Cymbalta and almost died. It made my heart rate and blood pressure go crazy.
    Ambien really help me ,but you can't get a doctor here to keep prescribing it. I would take half a pill and it would give me some restful sleep. I have taken melatonin too. I go to bed at 9 pm and get up at 7 but to my body i need at least one or two more hours sleep.
    Coping: I treat this DD as if it is a part of my body and tell it when the pain is really bad that its not gonna beat me. I have a child to raise and I must keep going.


















    [This Message was Edited on 10/25/2006]