What Worked for Me

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

  1. yodasmom

    yodasmom New Member

    Besides all the supplements, many already mentioned, plus

    juicing and no sugar I do REIKI. ths has made a huge

    difference in my life. I am a Reiki 1 practitioner and

    will become Reiki 2 this weekend. I do it on myself everyday

    and get a tx once a week at a clinic (donation basis).

    Reiki basically is hands on healing but what it does is

    keeps things moving which is what we need with CFS and

    fibroso we don't get stuck! Wonderful for pain so it has

    cut down my pain meds and helps sleep.
  2. pretties

    pretties New Member

    I was lucky enough to find a doctor who understood that the key to Fibromyalgia is the Thyroid...and what a difference Armour Thyroid has made in my life...no more pain when the levels are high enough!!!

    Along w/the Thyroid...I have through major research...learned that the supplements for muscle therapy are a necessary addition to my regime. L-Glutamine, L-Glucosamine, Creatine. Then there is the addition of Malic Acid and Bromelain. Using ReVivex..Celedrin helps w/the pain. A littel White Willow works too, and you don't have as much of an interaction w/the thryoid as you do w/aspirin.

    GABA is absolutly critical for the chemical balance in the brain! Not just one a day either...you have to take enough to do the trick...and in time your body will learn what that is.

    Add Protein to the mix and wala there you have it...no pain and I can do just about anything I want!

    As I said the Key here is the Thyroid and when that level is low...well then nothing else will do the trick...you have to control the pain w/the Armour Thyroid...high levels generally to fix it...gradually increased of course!

    Good luck in finding the Doc who will understand...most are afraid of the Thyroid...too bad...

    As a Dr. of Holistic heath myself the journey has been very interesting indeed...I suppose w/out the stresses in today's world we wouldn't be talking about Fibromyalgia at all now would we???

  3. wellkid

    wellkid New Member

    Here's what is working for me...

    First thing is to prioritize; make getting healthy your full-time job. Take control. Read everything you can find in the hopes that some of it will help, but realize that you have to figure out for yourself what works for you. Every body is different, with different symptoms and different needs.

    Bank your energy. Each morning, figure out how much energy you have and what you could do with it, then do only half of that and bank the other half of your energy. It takes energy to heal, and if you spend it all, you won't have any left for healing. Rest as much as possible; if you are doing anything else (talking, knitting, anything) you are not resting!

    Eliminate toxins from your food, water, air, and skin care. Supplement your diet with vitamins, minerals, herbs; once more, you have to let your body tell you what it needs. You must listen carefully; it will tell you.

    When you are able, get gentle exercise such as yoga, walking, or tai chi. Do this little by little; treat yourself gently. If it hurts, don't do it, but try again later. Push the envelope, but only gently.

    Eliminate stress as much as possible. Find supportive, not toxic, people to be around. Lower your standards and expectations as to what needs to be done. It won't kill you not to have a floor clean enough to eat off of; how often do you eat off your floor anyway? Prioritize your energy, delegate tasks if someone else can do them, don't do what doesn't need doing. Save your energy for healing, rest when you need to.
  4. cct

    cct New Member

    I could not even begin to list all of the things that I have tried during my 16 years of dealing with this disease. A couple of years ago, I counted all of the supplements that I have tried . . . just the supplements . . and I counted more than 200! I have tried all kinds of exercise routines, therapy treatments, and spiritual endevors.

    So far, the one thing that has been the most helpful is getting all of my allergies checked.

    Eliminating the high allergy foods from my diet made a big difference.

    I also take probiotics and enzymes to assist digestion.
  5. pattycake

    pattycake New Member

    I have also tried many supplements over 25 years. I have finally reached a plateau in which I am pretty comfortable. I take Effexor XR in the a.m., Omega Oil capsule, and a multi-vitamin. In the evening I take Calcium with Vitamin D, Nexium and Mobic. At bedtime I take a very small dose of clonazepam and trazadone for sleep. If I am suffering from a lot of pain, I take 8-hour Tylenol every 12 hours. This sounds like a lot of medication but it balances my body system. I credit the fish oil capsules with a great improvement--plus it makes the skin soft and clear! I find that sitting too long in one position makes pain worse as well as standing on hard surfaces for an extended time. I don't get much exercise as I find it makes me so sore that I cannot function for 2-3 days. I stretch some. I try to get out with my friends on a weekly or bi-weekly basis. I immerse myself in painting which takes my mind off the pain. I find that when I get a mild viral infection, it exacerbates my pain greatly. For this reason I try to head off infections. I try to get at least 8-9 hours of sleep each night, and I try to avoid too much sugar,drink a lot of fluids and avoid caffeine. Sorry if this is too long. I am just anxious to help those who are searching.
  6. suz45

    suz45 New Member

    I have been on and off the boards since about 2000. I came back this past year after an almost 2 year remission with FMS/MPS. This is what has worked to help me improve my health and decrease my flares.

    1. Healthy eating: eliminating the majority of processed foods, less sugar, reducing caffeine, no soda, I eat at least several servings of veggies/fruits daily and have added healthy grain cereals/breads.

    2. Daily excercise. I know this is a hard one, but I have found that 30-45 minutes of Yoga helps my muscles stay limber, flexible, less myofascial pian. Deep breathing helps with the cardiovasular system as well.

    3. Supplements: I currently take, multi Vitamin, High complex B, 200 Vit E, Flax/Borage oil 1000mg capsule,
    Probiotic capsule 2x daily, Calcium w Vitamin D 1000mg of calcium, 300IU vit D. Magnesium 500 mg daily at bedtime to relax muscles and milk thistle to keep liver clean.

    4. Drinking water and herbal teas...I drink teas year round, usually passion flower, valerian, chamomile with honey in it. I avergae about 6 cups a day. Very helpful at bedtime.

    5. Regular sleep schedule: Try to go to bed at same time to maintain circadian rythm.

    6. Limit use of otc's/ prescriptions as they have not helped me and I am concerned about effects on liver and kidneys, carodiovascular system. Use meds when flare won't let up, until I see the chiroparactor.

    7. Body work by a chiroprator trained in Myofascial Pain release techniques to work ot the trigger points. I see him biweekly or when feeling as though the knots are starting to become worse. Chiro/body work so far has been a lifesaver not only for my lower back problems, but having the trigger points worked on regularly has decreased my overall pain.

    8. Prayer...Lots of it for myself and others as well.

    9. Keeping mind busy on other things than my pain...

    10. Not fighting with my pain, trying to understand what it is telling me, dialoguing with my pain to gain insight and decrease it. Pacing self.

    11.Warm showers or baths before bed or after yoga or when stressed to loosen up the tight muscles and decrease pain.

    May sound simple but takes daily discipline on my part to do.

    Hope this is helpful for those of you out there that need hope and coping ideas. We all find our way through this, but having support from others that understand is crucial.

    In wellness,

    Suz45
    [This Message was Edited on 10/25/2006]
    [This Message was Edited on 10/26/2006]
  7. Sheila01

    Sheila01 New Member

    Several years ago, what got me out of bed after 4 months was antiviral valtrex. I read an article that different antivirals should be tried, because it isnt a one antiviral fits all for all viruses. Some respond to this antiviral, others respond to that antiviral. I noticed a diffence in three days. The first two days was some side effect, but it went away quickly for me.

    Another thing that helps with brain fog is staying away from milk protiens. Also helps with some achiness that feels like it is in the bones.

    When my muscles feel like they want to cramp easily when stretching or yawining half a tablet of potassium takes care of it.

    I just heard a story from some older lady who doesnt have CFS, but was strangley tired and weak for a few years, she finally figured out it was a supplement she was taking--she takes quite a few different kinds. Now she quit the supplement and feels better. It was so me sort of b-12 supplement with yeast in it. Good lesson to be learned from her, to take one supplement at a time then add another one and find out if any make you feel worse.

    Hope any of this may help, God bless
    [This Message was Edited on 10/25/2006]
  8. jedco

    jedco New Member

    I, too, have tried years of western medicine, MDs, prayers, time, balms, patches, magnets, acupuncture (everything short of "vudism". I think your suggestion of the natural products you recommend is excellent. I have tried MSM, Cal., Mag, Guafensin, etc. I'm convinced the root of our problem is "leaky gut" and probiotics and seaweed/and or salt is our salvation. I good liver detox. (dandelion and milk thistle) sounds like the recipe. I'm trying it!! thanks so much. GLO

    PS -- sounds like you've had the "affliction" for some time. please reply.
  9. tpmmurray

    tpmmurray New Member

    The only thing that has worked for me after 3 years of many days and dollars spent is IVMT (IV Micronutrient Therapy). I receive a weekly injection of vitamions & minerals (Magnesium, Calcium, Vitamin C etc. and it immediately clears my brain fog and for the remainder of the week I can do about 80% of what the old me could do.

    If I skip a week - I fall back quickly and then it takes a few weeks to return to 80%.

    When you get the injection, it feels like a warm blanket has been thrown over you! It's $75 a shot but I highly recommend.
  10. Onajourney

    Onajourney New Member

    Only thing that has really made a difference is Lyrica. With a gradual increase in dose over a couple of months, almost all my FM pain is gone! I can move and function so much better. Other helps include massage, elimination of stress, and a wonderful loving and supportive husband (and my two siberian huskies). Unfortunately, prior drugs created other permanent problems so I'm still not working nor will I ever be able to again. Seeing a psychologist has helped me accept my life and reduce my self-imposed stress. Now starts another round of physical therapy to try and get the muscles strong and moving again.

    I agree with the thyroid and adrenal correlations along with going "natural" with foods. They also help in their own way. Discovering I had not only sleep apnea but REM sleep disorder has made sleeping a wonderful thing.

    Wonderful thread - thanks....
  11. Onajourney

    Onajourney New Member

    This injection does not work for all people. My first and only injection almost killed me. I remember my blood boiling and pressure dropping rapidly. I had all nurses and doctors surrounding me and the head Dr. there with an adrenal syringe. Scaring thought looking at that syringe. I was a rare exception - granted - but just start slow and be aware of everything happening to you. Stop the IV if you have any doubts.
    [This Message was Edited on 10/25/2006]
  12. tpmmurray

    tpmmurray New Member

    I have had about 50 IVMT injections in the last year and half at the Yale Integrative Med Center at Griffin Hospital in Derby CT under the care of Dr. David Katz. I hate needles and have never had any issue with these injections which take about 10 minutes to do.

    One thing they do before starting is a skin test for Thiamin reaction - I was positive so I receive a non-Thiamin (Vitamin B6?) version. I don't know if that may have affected the prior writer but make sure your clinic or doc looks at this before trying IVMT.
    [This Message was Edited on 10/25/2006]
  13. ritamarie

    ritamarie New Member

    I suffered for 3 years with CFS and FMS and after years of all kinds of drugs and natural remedies the only thing that worked for me was meeting Dr. Dan Heffez a neurosurgeon from Chicago. He was featured on the program 20/20 and seemed so knowledgeable and understanding of the symptoms that I listened intently to him speak. He suggested that most people with CFS and FMS usually have structural problems in their neck area causing the spinal fluid to be interupted and that he finds that once diagnosed properly surgery does help to relieve the constricted areas. He made so much sense that I contacted his office and forwarded him my "normal" MRI reports of the head and neck. Upon review he called me and told me that my MRIs were NOT normal and that I did have a constriction (called a Chiari Malformation" ) in my neck, even though me neck didn't hurt me too much he saw that this was the area where I had a problem. I flew to Chicago and went through two days of intent testing and he and a team of doctors verified that I was a good canidate for "decompression surgery". Two weeks after my surgery, my symptoms began to go away. I am 5 years out from the surgery and have my total life back again. I take NO pills any more. Just good viatmins and the acai berry drink. I sleep like a baby, have no more pain and burning limbs, lethargy, eye floaters, off-balance, headaches, IBS, confusion, etc. I owe my life to Dr. Heffez and would love to give anyone info on how to get in touch with this wonderful man. I have sent about 20 FM sufferers to him and he has helped them all. If you haven't gone this route and are desperate for your life back like I was, please contact me at [email address removed as per rules]. If I can help anyone to stop suffering, it would be my pleasure!
  14. KaceyAnn

    KaceyAnn New Member

    Along with Fibromyalgia, I suffer with depression. The SSRI's are commonly prescibed but with them can come big time sexual side effects, loss of libido.

    My doctor prescribed Requip for this which is an off lable use of a drug approved for Parkinson disease and Restless Leg syndrome. I take just 1mg a day and have had complete success with it for 1 1/2 yrs now. I have no noticable side effects either.
    [This Message was Edited on 10/25/2006]
  15. hugs4evry1

    hugs4evry1 New Member

    I'm not really familiar with Transfer Factors but you can either do a search for them using the search feature, or go to the Pro Health Store here and learn about them there.

    Sorry I couldn't help more...

    Nancy B
  16. DoveL

    DoveL Member

    Thank You Stormskye!!!

    I am going to try that, and when I do. I will let you know..Funny thing is; I just bought a good blender this week, and have been making yummy fruit shakes, as well as salads in there too!

    Thanks again!
    Hugs
    Dove
  17. jessicabear

    jessicabear New Member

    i have been struggling with CFS for 11+ years. i read about transfer factor and something else that helped you (i have already forgotten what i wanted to ask you). well, i remembered transfer factor. what is it, what did it do for you and how do you get it? what form does it come in and what is the cost? and please tell me about the other things that helped you that i can't remember from your message.
    i have to adhere to a whole food diet or all my symptoms come crashing down on me again. i still can't get back normal energy levels so that i can hold a job. even though aderrall has helped greatly, it does not help enough to allow me to rely on enough energy to work. any other thoughts? i have come along way from bedridden to almost no naps but i am far from normal. i am all ears.
    thank you.
  18. desertlass

    desertlass New Member

    I have nothing dramatic to share-- I've tried a lot of different things-- still searching and experimenting. Anyway, all of these posts are interesting and thanks for sharing. This is just a small way that I deal with a lot of guilt feelings and bad cases of "poor me".

    When I am stuck in a flare, or if I'm just stuck in my own head, I tend to get very hard on myself about all I am not able to do. I have found that if I am able to make a list of all the things I have done to contribute to the functioning and well-being of myself and my family, it really adds up to much more than I would have ever guessed. I give this list to my husband so that he can see that I haven't "abandoned" him to cope with everything on his own, but that my heart and mind are always working, even if my body can't. He really appreciates these "reports" as well.

    I add every single thing, whether it's "got dressed" or "reviewed problem with daughter's teacher" or "shopped online for Christmas presents" or "read article on CFS, made notes to ask doctor" or "designed dress in sketchbook to keep creative juices flowing". This list makes both of us feel that I am still part of the team, and that I haven't given up. If I were single, I would still do this, and it would seem almost even more important to do so, since I wouldn't have anyone recognizing my efforts except for me. (Not that my dh and kids are constantly doing this... :)

    I suppose this is one for the coping corner, and I doubt I am the only one to suggest this, but I didn't have anything to offer that has "worked" for me longterm, as well as this. From a physiological standpoint, I think making a list is something that requires the left side of the brain to function, and the more that is stimulated, the better we feel. I read an article about this a while back. It's like, if we do things, but don't acknowledge having done them with our left brain, it feels the same as if we hadn't done it at all. For instance, if I design in my sketchbook, that's a right-brain activity, and that is fun and feels good while I'm doing it. But the recognition of it with the left-brain-- by mentioning it out loud or writing it down-- is what makes the feeling of accomplishment and well-being last. Hope that all makes sense!

    I think writing down "what works for me" is a very good left-brain activity for all of us, and probably makes us realize how very hard we've worked and how far we've come.

    Lisette
  19. toots2

    toots2 New Member

    Enjoying reading here what helps everyone, but if you don't mind, could you or someone else explain to me what transfer factor is? The "fog" is one of my worse problems. Thanks. Toots
  20. angelisa337

    angelisa337 New Member

    FybroResponse vitamins.