Top 3 things that has helped you the most

Discussion in 'Fibromyalgia Main Forum' started by mrpain, Feb 17, 2007.

  1. mrpain

    mrpain New Member

    I have fibro & cfs. I would like to see what has helped ya'll the most, and take the 3 most popular-est answers, and try them for myself.

    I know we are all different, but there may be a common thread that seems to help more than another. Most of us are fighting symptoms such as pain, fatigue, sensory-overload, ibs, lack of concentration & focus, irritable, can't sleep or even stay asleep, just to name a few..

    So if you don't mind, please list at least 3 things that has helped you the most in figting this illness. Thanks in advance! I'm ready for a change and willing to do so. It's 1:20 am, and I'm more awake now than I've been all day, but that's another story..
  2. tatortot

    tatortot New Member

    mrpain- I have had CFS for 19 years and very few things have helped me. The 3 most helpful for me was: High-dose B-12 shots, magnesium injections and Kutapressin (Nexivir-is the name now) Please try these--Kutapressin is known as the weak Ampligen-the drug I've been trying to get since I got sick. Tatortot
  3. katvwolf

    katvwolf New Member

    1. Coffee
    2. This board
    3. Tramadol and Amitriptyline

  4. hollie9

    hollie9 New Member

    1. Yoga, I got a personal instructor and very slowly built my body up to the point that I became very strong. I didn't need much bedrest and could do a whole day of working. I thought I'd just become so physically strong that everything I did didn't take so much energy, but my instructor told me it was the healing power of yoga.

    2. Doxepin, which allows me to get long restful sleep.

    3. Ambien, which puts me to sleep.

    I've tried Kutapressin, HGH, Gamma Globulin infusions, Vitamin C infusions, juicing and tons of other stuff that hasn't worked (the gamma infusions did some good) I have B-12 shots to self administer but have been lazy about doing them, they didn't do enough good for me to remember to do them.

    I've had CFS for about 11 years.

    Hollie
    [This Message was Edited on 02/17/2007]
  5. IntuneJune

    IntuneJune New Member

    Have been DIAGNOSED for 20-25 years. Have been prescribed a lot by rheumatologist..... but what helped the most:

    Eliminating allergens. Food especially, helped fibro-fog and overwhelming fatigue (the drop dead in your tracks fatigue). Also environmental helped.

    Myofascial release. Not only did it ease the muscle pain, but corrected some of my skeletal problems never addressed by physicians.

    Aquatic exercising. Being able to move my body freely while supported by the water was at first exhilarating, then after time developed endurance and muscle strength.
    So empowering was my experience, I have gone on to become a Certified Aquatics Instructor.

    Fondly, June
  6. woofmom

    woofmom New Member

    I'll kinda' second Erik.#1 Chemical avoidance #2 Chemical avoidance #3 Chemical avoidance. These include chemicals in my food.
  7. Daisys

    Daisys Member

    Great idea! Really got me to thinking.

    I've had CFIDS since 1978 and FM since the early 90s. So, looking back over the years, overall, I have to say the #1 important thing is REST. They say if you have the flu, don't overdo it, etc, and we have a nasty flu on an ongoing basis. I exercise with a listening attitude, so I don't overdo it. My body tells me how much it can tolerate, if I pay attention to what I feel like doing as opposed to what I think I should be doing.

    The other thing that has made a huge difference in my life is diet. I mean way of eating lifestyle. I've gone thru the elimination type diet and found what not to eat. I couldn't tell that anything was giving me trouble until I'd stopped eating it and then added it back later. The biggies are gluten, sugar, and too much carbs for me. Of course, I'm off trans-fats too, and food processed with chemicals. The meds and supplements that I take work better when my eating is clean.

    And the third biggest difference to my health has been getting good, deep sleep. For me this has meant xyrem. None of the other sleep meds could get me into the delta sleep that I've desperately needed all these years. I notice others do get good rested sleep with other meds, or CPAP if they have apnea. So, my point is: if you wake up tired, or unrefreshed, a sleep study is in order. All the meds and supplements work better for me now that I sleep well.

    1:Rest
    2:Diet
    3:Sleep

    Those 3 so that the huge piles of vit/min/supp/meds I take every day can work for me.
  8. justlooking

    justlooking New Member

    1. saying NO when I need to and not feel guilty about not being "superwoman" anymore.

    2. taking pain medications and anxiety/sleeping medications when I need to and not feeling guilty about it.

    3. getting rest whenever I need to, even if it means saying No to someone, or putting things off that need to get done and not feel guilty about it.

    Ok I still feel a little guilty about these things but I'm working on that.

    I now spend more time on important things at home. I rarely go out, except to drive my kids somewhere or to the store or Dr appts. I spend most of my time in or near my bed, but piddle throughout the day to get everything done. That in itself wears me out right now but I feel like I am heading in a better direction than I was before I adopted these 3 coping methods. I use to try to do it all and more, thinking I could push myself through the fatigue and if I had more pain then that was the price I had to pay to get things done... finally had a change of perspective and realized I really wasn't getting anywhere and ended up in bed anyway but for longer periods of time and with worse symptoms.

    Hope you got some sleep.
    Sicnerely
    JL
    [This Message was Edited on 02/18/2007]
  9. Catseye

    Catseye Member

    Hoo boy, that's rough. It was only when I mixed everything together that I got serious results. For 3 things to do, I'd have to say:

    1. elimination diet - get rid of intolerant foods
    2. support liver
    3. acupressure

    As for supplements, 3 wouldn't be enough but here are the 3 most important for me:

    1. digestive enzymes
    2. mineral supp
    3. amino acid complex

    I only have cfs, no fibro pain.

    karen
  10. mrpain

    mrpain New Member

    Thanks to all the great replies. It seems rest, sleep, diet, and exercise tops the list. Now to get from here to there! I guess inch by inch.. Day by day..

    I know this isn't true, but it feels like I've tried all the supplements & vitamins along with the testing of different drugs, along with chiropractic, physical therapy, shots, tens unit, hot tubs, prayer, positive thinking, exercise, and a few others. I won't give up, so thanks for all your reponses! Keep on keep'n on!
  11. TwinMa

    TwinMa New Member

    I have fibro, but not CFS. It's hard to keep it to three, but here they are:

    1. Improve Diet (eliminate junk food & sugar, eat the Shake daily & probiotics, drink plenty of good water)

    2. Massage (trigger point & deep tissue at a proper comfort level)

    3. Improve sleep (do whatever it takes to get better sleep)
  12. dixie22

    dixie22 New Member

    Ultram.

    Stress control.


    Exercises.
  13. Shalala

    Shalala New Member

    I like all of these lists ... but Fight4 has hit on a major amount of them for me:

    1. Heat ... showers, hot water bottle, my bed buddy thingy that I heat up in the micro wave and put around my poor neck, heating pads, etc.

    2. Massages (but I cannot afford them) and stretching

    3. Meds

    4. Quiet ... Distraction ... Stress reduction

    AND ....

    5. Kittens :)
  14. ask2266

    ask2266 Member

    I have CFIDS-- my main symptoms have been no sleep, terrible muscle pain in legs, tingling and slight burning in arms, post-exertional crash, memory loss, sensory overload with shakiness, fatigue, dizziness and light headedness, nausea, yeast infections and stomach issues.

    (1) Cortef & Florinef -- stopped the dizziness and lightheadedness completely.

    (2) Nystatin, Diflucan and lots of probiotics--got rid of the yeast infections and has helped stomach issues.

    (3) T3 hormone-- eliminated the muscle pain completely (eventhough my throid tested normal prior to treatment!)

    (4) Anti-viral Famvir-- I'm feeling better daily on this, but have definitely had some herxing issues. (I only have high EBV Igg)

    (5) Ambien, Lunesta, Klonopin and Xyrem-- on a rotating basis to help with sleep. The Klonopin also helps with the sensory overload and shakiness as needed.

    (6) This board and my husband who has been a champ through all my bitching and moaning.

    (7) Quitting work as an attorney, which has reduced my stress level immeasurably.
    [This Message was Edited on 02/18/2007]
  15. rockyjs

    rockyjs Member

    Here are mine:

    1. Thyroid hormone

    2. Homeopathics

    3. Avoiding toxic chemicals and mold

    Jan
  16. Ginner

    Ginner New Member

    that help me. (fms / mps - 12 yrs.)

    I enjoy visiting with people but it can be a killer for me.
    I have learned
    -to do more "listening" opposed to contributing to the conversation and I learned "its okay to do that" I aways thought that I had to entertain people. I learned to "bullet", if you will, my thoughts, so I didn't give away so much of me in one given time when I did contribute to the conversation. When people are chatting around me and I am buzzing -head spinning event- I excuse myself and go to a quieter place for a bit,then return.

    - taking regular breaks from as big or little of a thing that I am doing.

    - My rx's are effexor (calms me) ambien (for sleep) darvocet ( for pain). I haven't started on supplements but plan on taking melontin for sleep after I talk to my physician at my next appt. I am going to bring the Pro Health catalog along and see what she suggests.

    ~Ginner
  17. ayhatch

    ayhatch New Member

    1. Cymbalta - decreased fatigue
    2. Support - this board, good Docs, therapist
    3. Having a puppy in my house for 10 days!
  18. wrthster

    wrthster New Member

    just want to say this is a great thread, keep it going! I have not found anything very helpful but I guess I would have to say:

    Antibiotics
    Zycam
  19. Gosia

    Gosia New Member


    1) Blend of amino-acids to correct my neurotransmitters and pain
    2)Diet + probiotics + enzymes + HCL + herbs, to control my IBS and immmune system
    3) Meds
    4) NADH for fatigue ( eorks great ).
  20. pumpkinpatch

    pumpkinpatch New Member

    1. MSM Powder
    2. Green Alive Powder
    3. Vitamin C

    I take alot more but those rate the top. Also the hormone replacement