What Worked for Me

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

  1. 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.
  2. 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!
  3. 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.
  4. 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!
  5. 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)
    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).


  6. babysnake

    babysnake New Member


    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.

  7. 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 ?


  8. Allen

    Allen Member

    I take a lot of what you take and I too take D-ribose and it does help.
  9. Elsieo

    Elsieo New Member

    I am posting this because when I first got the symptoms of fibro forty years ago, I had no where to turn. No one even knew what it was and doctors had no clue. Sadly, not much has changed in all these years. No one knows what fibro "really" is and know one know "really" how to treat it. Sure there are drugs that doctors are more than happy to prescribe, but are they what we really need. I am sorry to say that I don't think so. I have been on Elavil, Ultram, Fluoxetine, Ambien, Trazodone, Kadian, Cytome, Ultracet, MS Cotin ER, MS Cotin IR, and Topamax.The last drug I was on was Cymbalta. None of these helped. I ended up almost bedridden and in a wheelchair. Cymbalta gave me painful, progressive nerve and muscle damage and pulmonary hypertension. That is when the blood vessels in your lungs shut down. It is incurable and fatal. When I was diagnosed with PH, my cardiologist told me that if I did not get off all meds for fibro that I would be dead within two years. My primary doctor told me the same thing. It still took me two months to comply. I was scared that I could not handle the pain. That was when I started to do some major research. I discovered that most of us have very low vitamin D levels. So I saw my doctor and was tested. Mine was 18. I was put on 50,000IUs a day for three months. I had subsequent blood tests until I found the dose that I needed to sustain my level at 80. I started to feel better. I did more research and found that we also need magnesium. I added that. I started other supplements and in time, I found that I was pain free 95% of the time. I could never say that when I was on meds. My friends noticed the difference. I was no longer that drugged out zombie that I had been for years. My husband no longer had to be a caregiver for me. He no longer had to cook and do laundry or drive me everywhere I needed to go. I got my life back. My withdrawal from Cymbalta was horrendous and my daughter found a site on facebook that was a godsend for me. After 18 months, I felt like a normal human being again. My memory is good. I want to go places and do things. Since I have gotten off drugs I have taken two 6000 mile trips to visit my family. I met my granddaughter for the first time when she was five. Yes, I still have fibro. I still have an occasional bad day, but for the most part I feel very well. I also have severe osteoarthritis and have been told three times that I need knee replacement, but because I cannot take pain meds or undergo surgery I have found alternatives. I also have degenerative disc disease in my neck and lower back. I have recently developed panic attacks due to my family living in a country undergoing a revolution. I cannot take meds for this so my cardiologist told me to walk every day for 45 minutes. I have started to do this and it helps. This isn't easy with bad knees, but I have also found out that this has helped my arthritis. So yes, I am very sympathetic and have empathy for all of you with fibro, for I am one of you. I just wish I had the information that I now have. I would have made very different choices. I only post my story, so that you can do your own research and make choices that are beneficial to you. I did not have access to all this information when I started out. I have learned that doctors don't know everything. We have choices and if something is not working, then maybe it is time to change something. You don't deserve to suffer. I wish you all well. Take care.
  10. deepak

    deepak Member

    Dear elsieo,

    Thanks for your story :) Hugs.

    Which facebook page were you saying was a godsend ??

    With love,
  11. sarahcatherine

    sarahcatherine New Member

    I have had CFS/FMS for the last year and a half. Like most people with CFS and FMS, I have other complicating health problems (cervical dystonia and tourette's syndrome).

    I have made many adjustments that are making me feel better, but I highly recommend subcutaneous vitamin B 12 injections. I have been administering them to myself (prescription) 3 times a week for the past month. The increase in my energy and stamina has been remarkable.

    Additionally, when I was first diagnosed, my rheumotologist noticed that I was very vitamin D deficient. Addressing the deficiency was also alleviated a lot of my bone pain.

    I hope that helps!
  12. Critter0

    Critter0 New Member

    You're the first person I've found so far who reported improvement from Valtrex.

    At age 54, in August 2005 I got Mono. Knocked me flat. By the following Feb, 2006 I was still fighting with fatigue in a very big way. I read an article on the use of Valtrex for Mono and my doctor agreed we could try it, in 3,000 mg/day doses. Immediately, I was full of energy and remained that way for the 10 day trial we had agreed on. Trial over, I was flat on my back again.

    We tried lower dosages, but nothing under 3,000 mg/day worked. Eventually, I had to go to 4,000 mg/day (or 4 gms if you will). That kept me going till September 2006. Then I woke up one morning in early Sept and I was right back to square one again. The drug had stopped working for me and never did work again.

    Was aweseome while it lasted though and it was at that point that the diagnosis became CFS/Mono.
  13. words

    words New Member

    Hi... much hope & wisdom here; I hope to be where you are in a couple decades. =) Be well!
  14. Robin1237

    Robin1237 New Member

    I went 25 years symptomatic, after a known tick bite that I didn't know mattered, so I forgot about it. My neck and shoulders went sore 10 weeks later, and I had full-blown fibro symptoms a year and a half later. No one knew what fibro was. 25 years later, I was on a health chat board, begging for someone to clue me in as to what was happening, as I had now become profoundly chemical sensitive, and I had been born healthy. A nurse caught my symptoms, asked if I'd ever been bitten by a tick, I had, and she told me I had Lyme disease, a bacterial infection transmitted to me by that tick. It can also be transferred by 23 other insects and by human fluid and tissues too, including congenitally, via breastfeeding, blood transfusions, organ transplants, and sometimes via partnering, but not always. I tested positive through the IGeneX lab (www.IGeneX.com), went on clindamycin oral antibiotics, 150mg every 6 hours like I'd done for a finger infection, and in a week's time, my fibro symptoms went to NOTHING! I herxed after a month, meaning the antibiotics were successfully killing off the bacteria, and I dropped back to 2x/day. We're all different when it comes to what will work for treatment. Treatment for Lyme disease falls in three categories: kill/deter the organisms, detox, and fortify the body. I've done a lot in all those three categories by now, and I still have more to do. It's very important to go to a Lyme-treating doctor, since they are aware of the complexities of this illness, as well as any of the co-infections we could have, like babesia, bartonella, and ehrlichia. I always suggest that people google the symptoms of all of these infections, and if you think you're symptomatic, then go see a Lyme-treating specialist. You can get referrals for any area at www.lymenet.org, click on Flash Discussion and Seeking A Doctor. You can also study there what people are saying. You can use the Search function at the top of the page to type in any word, like say, fibromyalgia, and then read the archived posts for what people have to say.
  15. Robin1237

    Robin1237 New Member

    Hi - my fibro of 25 years turned out to be Lyme disease, a bacterial infection that inflames nerves and tissues. I got mine from a known tick bite. 10 weeks later my neck and shoulders went sore, and 18 months later, I had full-blown fibro symptoms. I am now treating symptoms successfully - first, with antibiotics - I took oral clindamycin, 150mg, 4x/day, and in a week's time, my fibro pain went to zero!! After a month, I backed it down to 2xd/day, and it worked for 5 years. Now I take do teasel root tincture drops and turmeric capsules to keep joint and tissue pain down. Re how we get it - ticks are in vegetation and on wood and animals - they are really tiny and lots of people never see the tick or ticks that bit them. Second, the Lyme bacteria can be in 23 insects, as well as in human fluids and tissues, including transmitted congenitally, via breastfeeding, blood transfusions, organ transplants, and sometimes via partners, but not always. Why we're not being told about it - because insurance companies don't want to pay for all the treatment. My argument - if people could know in the first place what Lyme symptoms are, as well as symptoms for co-infections like babesia, bartonella and ehrlichia - yes, google for symptoms for all of those to see if you match any - then, it would be a lot cheaper to stop the infections in the first place! Let alone allow everyone to have their lives!! You can get more info and Lyme doctor referrals at www.lymenet.org - click on Flash Discussion, and any of the categories, including Seeking A Doctor if you want referrals for your area. Treatment happens in three areas: kill/deter the organisms, detox, and fortify the body, plus clean up the damage as much as possible that's been done to us. It's complicated, and that's why we're all on lymenet, discussing with each other what we try.
  16. bedazzled

    bedazzled New Member

    Hi delia,
    I agree vit D and B12 are prety beneficial especially with treatment related to fibro and other chronic illnesses. Also ,I think healthy eating is something that every person must adapt irrespective of whether they are suffering from illness or not. There are hell lot of options to explore and resources and articles on the internet.Chronic fatigue is a troublesome illness and one must find a good doctor and find out the root of the problem in order to take care of it. I checked a few videos. I would like to share one by a doctor regarding food and metabolims aspects with fibromyalgia
    I hope this helps all who are looking for some info. Also you may explore various medical articles for more information., Wishing you all the best.
  17. larocean

    larocean New Member

    i have had fibromyalgia for many many years and then chronic fatigue for about 7 years (associated with hyper-parathyroidism and surgery for a benign parathyroid tumor). i have tried everything, with some gradual small improvements over the past 7 years. but the MOST significant thing that has utterly given me MY LIFE BACK is the lightning process by phil parker. i did the training in september and it absolutely worked for me. i cant encourage you enough to go online to the website, get the book, learn about it, do it. there is a practitioner in california, the rest are outside the u.s. while i still have some fm symptoms my debilitating fatigue is GONE. i continue to use the process to address other mild-moderate pain symptoms but i have completely recovered my energy and cognitive functioning. it is nothing short of extraordinary. it is NOT magic. it is a training process that helps change the way the brain works. it requires work and trust in yourself and the process. i was desperate enough to put aside my skepticism and my medical training (i am an md, i had to close my psychiatry practice due to disability) to just dive in. (i learned about it when i went online to look into the amygdala retraining process again. i had done this several years ago with some improvement.) i watched all the testimonials, read everything online, got the book, worked on the questions, worked with the practitioner to prepare for the training, then did the training. it is amazing. the training is only 3 days once you are ready to do it. PLEASE look into this. i only wish i had known about it sooner.
  18. petemora

    petemora Member

    I have felt the best I have felt in 7 years, since I finally quit work and went on disability. (I was diagnosed with CFS in 1999). The problem (?) is, I don't know what I have done recently that is working. There have been 4 major changes in my life since last fall.

    1. I started taking 40 mg. of Omeprazole (generic Prilosec OTD) last fall for my sort of severe acid reflux. No more vomiting, no more acid reflux. Problem fixed!

    2. I did not get a flu shot this year because of my fear that it would wreak havoc with my immune system. Naturally, then, I got the flu! I came down with the flu on December 16th and it didn't totally go away until January 13th. Anyway, since I got over the flu, I have felt much better.

    3. I started doing jigsaw puzzles after I got over the flu, the big ones 500 to 100 pieces.

    4. I quit eating Nutty Bars in December. I was so addicted to them, I finally told my husband to either quit buying them or to hide them where I couldn't find them. He quit buying them, and I switched to apples for my daily snack. I generally have 2-3 apples every day.

    The changes I have felt:

    1. My day is longer. I used to get up around 9 a.m. and was in bed by 4 p.m. Anyway, that was my goal, and often I was in bed earlier. Now, it's not uncommon for me to be up past 6 p.m.!

    2. I feel more "normal", that is, I have more energy and less pain.

    3. I actually get bored sitting around the house all day! When I am bored, it means I actually have energy I haven't used yet. Weird to feel this way after all this time.

    Does anybody have any thoughts about this?
  19. sarasmish

    sarasmish New Member

    I was hospitalised last year with a sever virus, could not walk and had seizures. I now have been diagnoses with post vieral syndrome or chronic fatigue.
    What has helped me enormously is ozone and filteration therapy. I live in Bali so I am not sure you have it elsewhere but I guess you do. In a session 4 litres of blood is taken via a tube from one arm and passes through a filtration tank similar to dialisis. It is pumped with ozone and then returned to your body through a tube in the other arm. It takes one house and is relatively painless. Each time I did it I felt fantastic for a couple to a few weeks after.The problem is the cost at $300 per treatment. I also did ozone only treatment without the filter which is half the cost but the results were not as marked.
    I hear that alot of people with CFS are helped with this treatment but whether it can cure or not I am not sure.
    I have a few months of being able to go out when I did it and could even exercise which without I cannot do.
    Best of luck Saras
  20. herennow

    herennow Member

    Things have helped me to this day:

    For sleep: 5-HTP, L-Ornithine, Phosphatidylserine

    For raising adrenal hormones (gives energy): Licorice root, Isocort.

    To feeling less toxic and ill: Methyl Folate, B12 skin patches, Magnesium Flakes in baths

    To reduce inflammation (makes me feel less ill/more clear headed): Bromelain

    Gut health: digestive enzymes, L-glutamine

    General Energy: full-spectrum amino acid supplement

    Many of these at too high a dose affect my sleep and/or energy negatively. I have to introduce a small dose then see what happens as I increase.

    For example 1/3 the normal dose of Bromelain is good for me. However the normal dose caused my energy to drop.