What Worked for Me

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

  1. Adl123

    Adl123 New Member

    I have tried many of the ideas that others here have, and they helped. I improved, over the years, to the extent that I could do more and more..

    Then stress and exhaustion began to build up, as a disabled friend needed me more and more, to drive her around. Then one day I went into Angiodema, (swelling, like an anaphalectic allergic reaction, and life-threatening) and had a big crisis. I found myself back to where I was three years ago.

    Then I took stock, listened to my allergist, sadly told my friend that I could not drive her shopping any more, and cut out all non-essential activities. (One day she needed to be taken to 8 different places on top of the 2 places we both needed to go to). For a while I have to be very conservative about what I do, but the relief of the stress I didn't know I felt, being responsible for my friend, was dramatic. I am now relaxed and calm. and am improving every day. I expect to be much better soon.

    I don't know about you, but I feel guilty easily, and I need to be free, with limited responsibilities, in order to heal. I was trying to do too much. I hope this helps someone else. I know mothers with children may not have the option. I cannot speak for anyone but myself. I was trying to be generous, and not be selfish, but was doing harm to my own health.
    That is not generosity, it is misplaced compassion.

    Bless you all, Terry

  2. br0nwyn

    br0nwyn New Member

    I stopped drinking coffee completely and found to my surprise that I could sleep much better. It definitely took two weeks of abstinence before this helped me. Also the drinking of 5 hr energy or any product like it boosts my energy. I have had CFS for over 20 years.
  3. br0nwyn

    br0nwyn New Member

    I stopped drinking coffee completely and found to my surprise that I could sleep much better. It definitely took two weeks of abstinence before this helped me. Also the drinking of 5 hr energy or any product like it boosts my energy. I have had CFS for over 20 years.
  4. mary01

    mary01 New Member

    Hi. I'm REALLY interested in how much Armour you are actually taking. I was on 90 before it went off the market, which sounds high to me. However, I FEEL like I'm not getting enough thyroid since I'm tired-especially in the a.m., and my brain fog is b ad.

    Thanks.
    Mary01
    (Email addresses not permitted, removed by moderator)
  5. clementyne

    clementyne New Member

    I just found this site a few days ago & I have already shared a couple of posts (explaining Fibro) with my husband. This is my 1st time posting so I feel a little like the new kid in class!
    I have had some symptoms going back as far as 20 yrs. but 8 yrs ago I had a very bad fall & I have been in pain everyday since then. I was diagnosed with Fibro 2 yrs ago - actually, I met someone with Fibro (I had never heard of it before) & as she told me about it, a light bulb went off. I went to my Dr. & told him I thought I had Fibro. He did the tender point test & I had all 18.
    I tried Cymbalta for a while but it didn't seem to help, also Nortripptaline(sp), had to stop that because it made my pulse race. Right now I am on Vicodin (10/666 q 6 hrs) for pain control & Flexerill to help me sleep.I did take Ambien but I stopped because of side effects. My Dr. wants to try Lyrica next & I am at the point where I would eat a live chicken if it worked. Lol!. I am always in pain - the all over muscle aches but I also have the other pain. Do you know what I mean? I live with the muscle ache but the other pain is devastating. That pain can be anywhere but most often hits my hips, back, shoulders and jaw. Then there is the leg pain. I don't think it is restless leg. I took something for RLS but it didn't work. This pain is mostly in my knee and it drives me crazy! My husband & I don't sleep together on those nights because I keep him awake. He tries to be supportive but he really doesn't understand and I feel like a failure as a wife.
    I know I am going on & on but it is so nice to get this out & know the people on the other end are not judging me. So thank you all and Be Blessed!
  6. clementyne

    clementyne New Member

    In response to your last two suggestions...My DH nearly had a stroke the 1st time he saw me taking a hot bath with the window fan sitting on the counter, on high, blowing straight on me!Lol!
    Whatever works, huh?
  7. CathyRN06

    CathyRN06 New Member

    First, let me give you a little background!

    I was a travel nurse working in New Hampshire, Arizona and California in various ER's. In one month I went from logging 5 miles per night on my pedometer to being flat on my back without any explanation.

    Was I depressed? You bet I was. I couldn't figure out why my muscles would no longer work. Previously, when I felt bad I would push myself and I would feel better.

    Not this time.

    I pushed myself so hard that I could no longer function. I heard all the comments, "Well, Mom, if you would just do this, or do that, you would feel better." They knew me well enough to know that if it were possible, I would have done it.

    I was ridiculed in my home ER by medical personnel. That still baffles me. I was left homeless, asked to leave my son's home a week before Christmas and went into a shelter.

    To make a long story short, I researched my symptoms on the internet. This took a long time because I couldn't sit up nor be close to electronics for more than 5 or 10 minutes at a time. I also had to give up normal activities to do this - such as showering, brushing my teeth or eating.

    I went from being totally bed-ridden to being able to function at 80% of my previous level of activity within four years.

    First, I started taking Zoloft and Xanax. (By this time I was at another son's house)
    I had read about pacing and exercise. Now this wasn't your normal exercise routines. I started by moving one arm or one leg while in bed. It was even difficult to breathe because I used all my energy to move.

    I spent 1 and 1/2 years confined to my bed and room (with adjoining bathroom). It was a roller coaster ride because I couldn't judge how much I was doing nor how much was too much.

    I relapsed numerous times but now I am able to drive again, shop in the larger stores (with pacing), and have started my own business.

    What helped me:

    Activity - even if it was only moving an extremity. I logged it and tried to increase it over weeks, months and years.

    Pacing: This is a tough one because your previous limits don't apply and it's difficult to learn to listen to your body. The effects aren't felt for a day or two. You have to get a baseline then slowly - and I mean very slowly - increase your tolerance. The only way to do this is with a log.

    Eating - regularly, balanced diet, smaller meals and lots of fruits and veggies.

    Meds - I finally gave up and tried an antidepressant and anti-anxiety agent. Although not a complete answer, I've found I can't function without them at this time. It's a small price to pay. A multi-vitamin also.

    Prayer - I literally couldn't have survived without it. I also took notice of the small things to be thankful for: a day filled with sunshine, a kind word, the wildlife, the stars.

    Attitude - I couldn't change anyone's reaction to my illness. People would be cruel because of ignorance and lack of compassion. So be it. I still cried at times because it hurt but I was determined to make the best of it.

    In a nutshell:
    Activity - Don't discount it. I had to start by moving one extremity with one or two repetitions.

    Diet: As healthy as you can afford. Listen to your body because the signals have changed.

    Meds: Who wouldn't be depressed or have anxiety? Even little things help this awful disease.

    Pacing: Again, listen to your body, keep a log and DON'T go over your limit even if you feel you can. You'll pay for it the next day or two.

    Stress: Decrease it. It's literally a matter of life or death.

    Hope this helps someone.

  8. Ohgranny!

    Ohgranny! New Member

    I have had chronic fatigue for 37 years. It started right after a strep virus that just took me out for 3 weeks, along with infection in both ears. Right after that, I noticed strong tinnitis and I was always tired. The older I got, the worse it got. I have never worked a full time job.
    When I was about 3 years old: I remember my grandparents and parents rushing me to get vaccines done so I could go out of the Country to meet my moms siblings(& children) for the first time. (Canada) I think that there were too many vaccines thrown at me at one time, and I wasn't yet even kindergarten age. But to leave the Country that's what had to be done. No one feared vaccines in the 60's. Anyway, soon as we got to Canada: I developed Scarlett Fever. I had to be hospitalized. I remember the bright light in my eyes on the exam table. Even at that tender age: I felt the difference of medical procedure in another Country. (don't know why)
    So now I'm 50 & disabled, developing more & more asperger ticks. (hormone changes started this) I have VERY low Gluthione levels, and my methalyn pathways are slow. So I tried everything to detox, but I wasn't able to tolerate any one treatment very long....that is until I did coffee enemas. I use light bean organic coffee: up to 5 or 6 fleets a day. It's been 14 months now. Right about the time I'm about to quit, I get a little lift to keep going. Such as: I can tolerate perfumes, smoking, herbal products, for the first time. It is very slow going. I also add to one of the enemas: 1000 MG of Gluthonione every day. I get the capsules, and pour them right into the coffee. I usually eliminate the first 2 of the day, so usually the 3rd one I add it. I haven't been tested yet to see if my Gluthione levels have risen, but when I do I'll pass on the results. At first my digestive tract was very upset by this. Not anymore. In fact I can take one right before bed. The caffeine doesn't even affect my sleep anymore. The first 3 weeks: I had never felt better in my life. then I started to detoxify........

    I'm telling people this because for those who can't afford to go doctor shopping: this is the most inexpensive effective detoxification I've done. I don't do colonics. They are too strong to do everyday. This method actually strengthens your bowel muscles. This has really helped with joint pain as well. I don't think the vaccines hurt me because of the mercury, but rather because it was too much on my immune system at one time. I say this because metals are not a big issue to me, after testing proved it.

    I'll keep you posted.
  9. Michael1978

    Michael1978 New Member

    are you very sure, that D-ribose works every time, or is it maybe just getting better due to other reasons?
    greetings
    Mike
  10. rachel76

    rachel76 New Member

    What helped me?

    Zostrix cream, contains capcaicin. It's available off prescription.

    Fantastic for pain.

    Either the generic or non generic are great.

    Also has a side effect of improving the allergies and sinusitis that come with this illness.


    Can's understand why no doctor told me about and left me for years to suffer before finding it. The first thing they push on you are antidepressants, then chemical pain relieving pills that don't work and bother my stomach. They totally ignore this unexpensive wonderful natural pain reliever.

  11. karkel

    karkel New Member

    magnesium/calcium/zinc
  12. karkel

    karkel New Member

    look on their web site couldn't find
  13. susieque

    susieque New Member

    I have found that when I eat glutens I always start feeling bad, immediately, and if I continue to eat them I go into a tail spin of pain and fatigue. I also have noticed that when I am not diligent about taking my list of vitamins and supplements, I also start to feel bad and the longer I go without them, the worse I get. Also when I don't stretch or do Yoga my body feels the difference.
    My List:
    Cod Liver Oil
    Probiotics
    Digestive Enzyme
    Whole Food Multiple Vitamin
    Calcium w/ Vitamin D
    Liquid B12
    Chronium Picolanate

    Also, if I drink Gatorade each day I feel better, from what I can figure out it's the electrolytes in it. But because of the calories, sugar, and the cost I haven't been doing it, but recently found a powder for electrolytes at the health food store in two different flavors. But then they don't really taste good so making myself drink it is hard to do. I'm thinking of just going with the Gatorade, at least I will feel better and have the energy to exercise the extra calories off.

    It's really a lot of hard work to feel better, but as I am getting older and finding the more times I don't do what I need to do for myself, that the harder it is to come back each time, and this is what is motivating me now to do better.


  14. Health123

    Health123 New Member

    Love hearing what worked for everyone. Wanted to let you know there's a wonderful nonprofit organization called Friends' Health Connection at www.friendshealthconnection.org. They have an online community for people with health challenges and they encourage people to post blogs about their stories to help inspire others living with the same. They have other members with fibromyalgia and chronic pain. Maybe your story will help inspire others.
  15. mrshllms

    mrshllms New Member

    Hi I am new to this site, but have been dealing with Fibromylagia and Chronic Fatigue Syndrome along with other issues for many many years. I have found that removing all household cleaners from my home, has made a world of difference, I mainly use the power of steam and I am not as sick anymore, I still suffer from fibromylagia but I think all the chemicals in our society play into our immune system, just think I used to be in the hospital or at the doctors every week, but for the last few years, I see the doctor maybe 1 a month, what a big difference. Just thought I would let you know, I also tried those conair bath mats in my tub, I fill it with the hottest water I can take, and then bubble away for about 20 minutes, it makes a difference on how well I sleep, for the last two nights I have not had leg cramps, by the time your done your bath your water has cooled down enough to your body temperature. Just a thought to try. Have a good day all!
  16. vasanto

    vasanto New Member

    I'm sure this only applies to a small number of fibromyalgia sufferers, but since I got complete relief after 17 years of progressively worsening pain and fatigue, and nearly all of the typical symptoms of fibromyalgia (following a serious car accident), I wanted to share this. I discovered that I have adult ADHD, since both my children have it actually, and the psychiatrist I saw asked me about my fibromyalgia and chronic migraines. Apparently, it is quite common for untreated ADHD to evolve into fibromyalgia over time. This sounded far fetched to me, but after one month on ADHD meds (low dose stimulants), I felt normal for the first time in my life. My sleep was normal, I could think clearly, I have energy, and most of all, the pain and stiffness was completely gone! Six months later, I still feel great and pain free. I don't take any other meds, except occasional migraine meds (I rarely get any now and went off the daily preventative pills) I would encourage anyone whose stress, fatigue, and mental functioning is worsening over time, especially if you have a family history of ADHD, to take a look at the checklist. This was an incredibly easy fix for me, and it changed my quality of life within weeks.
  17. Beba

    Beba New Member

    Hi Vasanto - I have FM. I have very stressful dreams. I do not get good quality or quantity of sleep. Did you have these symptoms before starting ADHD meds? If so, what meds do you take that are effective. Thanks!
  18. HeidiS

    HeidiS New Member

    The Low Oxalate Diet
    A Controlled Carbohydrate Diet (low on Glycemic index)
    Guafenesin Treatment (unclear exactly how this helped but was on it during my recovery)
    Meditation/Prayer
    Yoga
    Organic, natural foods

    My story:

    I started the low oxalate diet after joining the Vulvar Pain Foundation (19 years ago). The low oxalate diet has been a huge part of my healing journey! I am now 80% recovered from my vulvar pain symptoms, and 100% recovered from my fibromyalgia, chronic fatigue, intestinal, mouth, skin, bladder and eye symptoms. I have no pain in my joints or muscles anymore, except in the site of an old knee injury. I occasionally have soreness in my old trigger points the day after a very strenuous workout (I used to be an elite athlete). I also have lots of energy to chase my 3-year-old twins and pursue a Ph.D. in environmental economics.

    During my recovery I also started a controlled carbohydrate diet (still follow) where I eat very low on the glycemic index and make sure I have a 30-30-40 balance of protein, fat, and carbs at each meal. I also was on gauifenesin for about ten years during my recovery and am positive it helped me, although I'm not convinced it helped me in the way it was supposed to. I take calcium citrate and Vitamin B6 which support a low oxalate protocol, but I take no medications and haven't taken any since about two years into the diet.

    I can't tell you for sure what role gauifenesin played in my recovery, but I can tell you that the low oxalate diet and the controlled carbohydrate diet were very important--so much so that I'm committed to this way of eating for life.

    If you do try a low oxalate diet, please know that it is a recovery of months and years, not days. I saw some relief in my vulvar pain symptoms within a few weeks, but most of my healing happened slowly over about six years. Also, please get the most up-to-date information on oxalates. A lot of info on the web is out-of-date. The Vulvar Pain Foundation is a good source of information as is the Autism Research Institute's Oxalate Project (and the Trying Low Oxalates Yahoo Group). My blog has links to these sites and to others in the FAQ page if you wish to read more about oxalates and the low oxalate diet (http://lowoxalatefamily.wordpress.com).

    Heidi

    http://lowoxalatefamily.wordpress.com
  19. babysnake

    babysnake New Member

    Hello

    This is my first post after i nearly cured myself from Fybromyalgia/CFS. The disease is knows also as Myofibrositis.

    I can't really express the joy that i feel now after so many years (12 years) of suffering from it.

    The point is: The disease is NOT a physical disease as i tought, it is a LACK of NEUROTRANSMITTERS in the CNS (central nervous system).
    After very long periods of stress (> 6 months) , the tissues in the brain that produces these neurotransmitters (and maybe also the receptors) are nearly destroyed by long-term stress. (Serotonine, Dopamine, etc).

    The information from the body to the neuroreceptors in the brain now comes altered and in pieces and the brain can't understand most of it and transforms it into pain because it is an invalid status for it.

    If you really have symptoms like i had (pain - dizziness - pseudo pain) in ALL your body that moves from place to place, permanent tiredness, lack of energy and is nothing localized but it moves (but most of it is in the shoulders - neck -head-spine) area then you have it.

    I was really feeling all the time that i have little to no control over my hurting body and sometimes i was wondering how can i walk. - and i also had sexual problems (i'm a boy) as not feeling any pleasure from the sexual act and no excitement for it. Also my head felt like a baloon all the time.

    I tried everything in these 12 years, i saw many doctors but they all shrug.
    I've done tons of analysis and they all were good except for the hypofize hormon - wich later i found it gets high when there are dopamine problems.

    I searched and searchd on the web until i found a naturist doctor saying is from chronic mononucleosis and i went and i did the test - i had it (Epstein-Barr virus) but it was just the marker. The disease is long gone because the body naturally fights it and kills it. So the naturist lady gave me many vitamins and herbs. Well the herb helped but only when i took it. When i didnt i was awful again. It is the astragalus - echinacea herb that really work - you feel much better- but dont solve the main problem.

    Later in 2009 when i tried again and by recommendation from a friend i went to the lady doctor that cured me i showed her the herbs that help me and told her the whole story. She for the first time diagnosed me officially as FM/CFS, it was the first doctor and knew about it. She works at a big hospital here in Romania.
    She said: "Of cours these herbs help you cause they are anti-oxidants" and prolong the life of the neuotransmitters.

    So, i was skeptic at the start when she said it is not a physical issue and all cause i know in not a loonie. But really she convinced me to do as she said.

    She told me: Exercise every day got to gym - bycycle - fitness or swimming, or as much as you can. You can keep your herbs and take them. And eat foods rich in tryptofan (bananas turkey etc). And massage she told me but i didnt do massage.

    Anyway i did like 2 times a week for 6 months gym - bycycle and shoulder - back exercises with small weights - 2-5kg and really kept at it.
    i didnt feel much better at the start but in time and after i finished these 6 months i was starting to feel much better( in the next 6 monts when i took a break from the exercising my body started to feel better with time) . And i also gave up herbs and vytamines cause i didnt need them to feel good. I was already much better.

    Then in this winter i did again 2 months of gym and now i can tell you i feel like 80% cured in real.

    So, i write now cause now im sure what im talkign about. Before i wasnt sure and i didnt wanted to maybe mislead anybody.

    So, forget the meds! GO TO GYM or swimming at least 2 times/week and really work your body with bycile and realtively small wights - ask the instructor for shoulder and back pain what exercises to do. The movement and prolonged light-effort really stimulate regeneration of the neurotransmitter tissus in your brain. And eat well.(tryptofan rich foods - serach on google)

    If you are feelign aweful you can take astragalus-echinacea herbs as they are natural anti-depressants (powerful antioxidants - delay the oxidation of neurotransmitters ) - but this is only a temporary solution. Exercise! This will cure you!

    Your head hurts because the brain has no neurotransmitters to work with, to live with and all the vessesls in your brain are dilated to get more neurotransmitters from the blood.

    This is the only thing that worked for me. In the hope i helped you and you start to cure and feel better i wish you to really do so.

    Christian.
  20. deepak

    deepak Member

    Dear Vitaminboss,

    I am writing from India and have been having symptoms of FM/CFS , though in India the awareness is even more abysmal than in USA.

    I came across your interesting post - what worked for you - can you please tell the brand and product names you recommend ?

    Love,
    Deepak