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Thread: fibromyalgia

  1. #1
    Senior Member kclausing's Avatar
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    I have seen many posts on tyhis board from fibromyalgia sufferers. My daughter has been diagnosed with this and is having a hard time, so I was hoping for some input.

    They have tried multiple medications, most make her tired or ill. The pain is constant, her memory is horrible. She has a 18 mo old boy, she need some relief from these symptoms.

    They keep trying different meds but she is getting frustrated and tired of trying mew meds, since none seem to work without more side effects.

    Any advice? What meds did they try on you? Which ones worked?

  2. #2
    Super Member Murphy's Avatar
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    Magnesium malate found at your local health food store works well.

    Massages; Movement.

    I have heard most medicines don't work and that taking a natural road seems to work for most people.

  3. #3
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    tho it's hard with a young child, try to make her schedule as routine as possible so that she gets a lot of rest. Maybe regular day care so that she can take a nap during the day...a friend with fm said that made the biggest difference for her.

  4. #4
    Super Member raptureready's Avatar
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    My mother, also a sufferer of this disease, dug up burdock (wild leafy weed) roots, washed, quartered and cut them into 3-4" lengths. Then she would pour about 2" of rubbing alcohol out of the bottle and put enough of the burdock roots in it to fill it up. She'd put the cap back on and set this mixture in the window sill. When the alcohol turns sort of dark brown it's done and ready to use. She'd rub this on the most painful areas a couple of times a day and it helped. Worried that there might be something in burdock that would hurt her I contacted a plant/folk medicine expert at the University of Illinois. He researched it for me and said that burdock has been used for hundreds of years as a pain reliever. It can, although a bit bitter, be eaten in salads, dried and brewed as tea, or infused in alcohol as mom did. You can also use a rolling pin to crush the fresh leaves, dip them in hot water and wrap them around a gout inflamed toe then wrap a towel around that for some relief.

  5. #5
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    Quote Originally Posted by raptureready
    My mother, also a sufferer of this disease, dug up burdock (wild leafy weed) roots, washed, quartered and cut them into 3-4" lengths. Then she would pour about 2" of rubbing alcohol out of the bottle and put enough of the burdock roots in it to fill it up. She'd put the cap back on and set this mixture in the window sill. When the alcohol turns sort of dark brown it's done and ready to use. She'd rub this on the most painful areas a couple of times a day and it helped. Worried that there might be something in burdock that would hurt her I contacted a plant/folk medicine expert at the University of Illinois. He researched it for me and said that burdock has been used for hundreds of years as a pain reliever. It can, although a bit bitter, be eaten in salads, dried and brewed as tea, or infused in alcohol as mom did. You can also use a rolling pin to crush the fresh leaves, dip them in hot water and wrap them around a gout inflamed toe then wrap a towel around that for some relief.
    This is about the only thing that burdock is good for! Nasty plant.....

  6. #6
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    There was someone on the board that posted this, I'm sorry I don't remember who it was, but here is what she posted, maybe it will help. I had replied that I had a couple of friends with fibromyalgia and this was her response.

    http://www.vitalfactors.com

    They will probably be convinced it's just another blind alley, so they should scroll down where it may still offer a week's supply for the price of shipping and handling, or call the 800 number listed there and call in and ask if the offer is still good. I have a hunch it will be. I started taking Vital Factors on a Monday, and by that Wednesday, I was able to put the Neurontin my doctor had prescribed for excruciating pain on the shelf never to take it again. That was about 6 or 7 years ago. You take it 5 days and skip 2. All it is is natural vitamins and minerals and plant extracts from around the world that some doctors and biochemists collaborated upon and are still improving to this day. After I post this, I will try the website again. I haven't had to call them except when I moved from Wyoming to the farm in rural Walker County where I live now. I still take it faithfully. It still stops most of the pain (about 90%).

  7. #7
    Super Member Ditter43's Avatar
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    I sympathise with your DD. I have had fibro most of my adult life. I have gone through years with few symptoms and other times it was almost crippling.
    Attitude is very important. Laughter is medicinal. Hot showers or baths and massages help. Having a supportive spouse makes a lot of difference. There is a lot of research going on now and hopefully they will come up with the answer.
    I take Cymbalta. It's the only thing that has worked for me. I still have flare ups from time to time, but overall it works well for me.
    Check out this site. I get the news letter with all the latest research and suggestions.

    http://www.fmnetnews.com/

    I hope she gets some help. The good news is it tends to wax and wane, so she will have better days. :cry:

  8. #8
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    Try the Mayo Clinic. We took our son there and after testing they suggested that he go to their Chronic Pain Center. Fortunately, (we live in Canada) while we were waiting for an opening, my son found a clinic in our home city. He was not able to do very much and was always in pain. He is now back in University. He has his life back. He is not "cured" but he has quality back in his life. It is the asolute best thing that has happened in our family.

  9. #9
    Super Member topper1's Avatar
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    I have had fibromyalgia since I was 17, now 56. I also have polymyalgia rheumatica which means more pain and fatigue. I am on prednizone for poly. I take pericet once in while when pain gets worse. I endure it all I can. I do take vitamin D3, helps with energy, take in morning gives me more energy 3000mg day. mOST OF US HAVE VITAMIN
    D deficiency. Hope the best for her. Take one day at time.

  10. #10
    Super Member Momma_K's Avatar
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    Keep moving...I know it's hard at times but not to let the muscles get stiff. Stay warm! The cold makes it worse. I can't take the meds they have, for one thing...no insurance so I take aspirin when it's bad. It helps the inflamation and keeps it down, not away. The worst thing with me is the chronic depression and fatigue! I have to stay busy..being here helps more than you know! I take naps when I can...mainly in the later mornings. And laughter...really is the best medicine. It releases the good endorphins and helps to heal. The good thing is it may come but goes away at times for a short while. Some people it's better and others worse. My sister has it worse than I do. Your daughter...She sounds way to young to have these problems but it happens. I feel for her, I'm in my 50's and my children are grown taking care of their own babies. They do check in on me and make life a lot easier for Mom. I'm married but seperated for 6 years now, my youngest daughter lives with me and boy does she help me so much. I think I'm very lucky to have what I do with my family. But thank God, the fibro isn't any worse than it is...as anything could always be worse. Help her, love her and pray for her...thats better than any medication on earth...

  11. #11
    Super Member wolph33's Avatar
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    I have it also tried many meds-none work.I live in constant pain-some days are worse-but have learned to deal with it.I would love to have an answer for something that really works also

  12. #12
    Super Member Airwick156's Avatar
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    I also have fibromyalgia. I take Lyrica and for me they are worth their weight in gold. Granted they are very expensive about $130 for 90 pills which is about $1.45 a capsule. But since I have been taking them, I have had way fewer flare ups then I was having. They also help tremenously on leg cramps. Also sometimes just a nice hot shower or bath will help.

  13. #13
    Super Member Tink's Mom's Avatar
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    Please let you daughter know that we understand...try to remove stress...be like a duck and let the water just roll off your back...a nap or rest in the middle of her day is almost mandatory...even 15 minutes. I try to lay down around 3:30 just so that I can rejuevenate before making dinner and all the rest of the stuff.
    I can't take some of the meds...side affects.

  14. #14
    Super Member amandasgramma's Avatar
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    I, too, was diagnosed years ago. I control it by avoiding MSG (monosodium glutamate) and aspertame (the blue fake sugar). Before you say "we don't use it" -- please go to www.truthinlabeling.com and read up on it. I was shocked the places the crap is put in our foods, hair conditioners, etc. I was on the verge of going on disability when I discovered these additives aggrivate the symptoms. Since eliminating the additives, I am no longer in a wheelchair, have hiked, fished, gold panned...anything I want to do (except do the health walk -- I refuse ...LOL) Good luck!

    ON EDIT: i just remembered...my doctor gave me a prescrip of Gabapentin. He said it was originally for seizures, but they've found it works on fibro/CF and for some mono problems. I have been diagnosed with mono last month --- this stuff is great!!! You all might talk to your doctor.

  15. #15
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    I have it too. Very painful some days.Fatigue gets awful.STRESS is a bad thing!Even GOOD stress.I went to daughters for Natalies birthday party and just sat there for awhile. Next day I was exhausted and could barely move.I wish I had some advice,what works for one may not work for another.I do know LAUGHTER is good. This board is my medicine,and Ditter provides my daily dose of the giggles. God bless all of you afflicted with this nasty condition.I say,if you are a believer we all take a moment each day to pray for one another.Hugs to all(gentle ones !!)

  16. #16
    Senior Member kclausing's Avatar
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    Quote Originally Posted by ktbb
    tho it's hard with a young child, try to make her schedule as routine as possible so that she gets a lot of rest. Maybe regular day care so that she can take a nap during the day...a friend with fm said that made the biggest difference for her.
    My grandson is in daycare, she works fulltime. Computer work. She used to have a second job, but just couldn't do it, was not getting enough rest.

  17. #17
    Senior Member kclausing's Avatar
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    Thank you to you all and I wish you all a year of no pain, no stress, full of energy and love.

    I will share your advice with my DD.

  18. #18
    Super Member irishrose's Avatar
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    I love my Magnesium Malate. Six a day during a flare and 2 a day for maintenance. I was diagnosed in 1983 - just added it to my too long list of autoimmune diseases. At this point, I am on no pharmacy meds other than a NSAID, but that may change when I see the Dr this month. I, too, avoid MSG and artificial sweeteners. They are poison for everyone, but more so for some of us. My dogs make sure I exercise every day. Great nap partners, too.

    Tell your daughter she is not alone. There will be good days.

  19. #19
    Super Member bluteddi's Avatar
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    I too had difficultiy taking most of the prescribed meds.. ( I had a bad side effect left me legally blind for almost 2 yrs... I see well enough now with bifocals to read large print and drive) My life saver was Flaxseed oil.... rest..... and keeping on a a routine. The slightest thing out of my routine and my fibro goes into a tail spin!
    Just a few more diagnosis and I'll have the entire alphabet!!FBS,CFS, RSD, EBS, IBS, DJD,

    hugs ...

  20. #20
    Power Poster lynnie's Avatar
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    Cymbalta helped for awhile, now if i turn my head right or left, even slightly, i go numb . it's to weird for me.

  21. #21

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    My husband suffers from fibromyalgia. For years doctors told him it was depression, imagined, etc. He now has a competent doctor and takes Lyrica with some success, and exercise helps too. DO NOT try all the scams. Check them out on Scambusters on-line or search all the Medical Scams. Worst one in Kansas City area was Nikkon. It used "magnetic water" (impossible) and had salespeople who never even passed elementary science! Also scams are aroma therapy, fake vitamins, facing north rubbing mud on yourself, Noni juice and many more snake oil fads. Do your research and find support groups. I have put your doughter on my seven state prayer list. Let us know her progress.

  22. #22
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    I also have Fibro. Last night was a miserable night for me. Could not get comfortable in any position. We are having a blizzard at the moment and I know that makes a difference. I can not take Lyrica. I got so dizzy I couldn't stand up.
    I know exercise does help and even though it is really hard to make myself do it, it does help. My daughter also has Fibro and last night she sent me a message that she was just miserable.I am praying for all of us that has this dreaded disease. Hopefully in the future something will be found that really helps.

  23. #23
    Junior Member lakesidequilter's Avatar
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    I'm also a long sufferer of fibro--was diagnosed in my late 20's and am now nearly 57 yo. Two of the best things for me have been an increase in vitamin D intake--as was stated earlier, many fibro patients are deficient. Since it is not a water-soluable vitamin, it might be smart to have a doc test your levels after you've taken the additional supplement for a time. I personally get about 400 mg from my multi-vitamin and take another 2000 mg dose fo the total of 2400 mg daily. I take no other drugs for the fibro...too many side effects for me. However, when I flare and am absolutely miserable I get myself to the doc's office--they give me a shot of 60 mg. of Toradol and it usually takes me from a 8 or 9 on a "10" pain scale to a level 2 within a matter of 90 minutes or so. It has to be given intramuscular as your tummmy cannot handle it--as it's a massive dose of Ibuprophen. Your kidneys also have to be good since that's how your body rids itself of it. I can get the injection as often as each week, but never have had to since I'm taken out of the flare altogether for a time.
    Hope this information helps--I am a nurse so understand the pain a difficulty well with living with this problem.

  24. #24
    kreinhart742's Avatar
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    If you have her take Vitamin D and have her levels checked most suffers of Fibromyalgia are extremely low. Also a mild exercise program such as swimming is beneficial. There is a med called Savella that I have had great success with in my patients.

    Karla Reinhart - Nurse Practitioner

  25. #25
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    She needs a very good herbal parasite cleanse. That's how I was cured from mine...and I have two other women I know who were cured with the same cleanse
    And I also totally agree with the vitamin D issue.

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