What Worked for Me

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

  1. Sue50

    Sue50 New Member

    for the past several months I have been working on improving my life. I have several professionals helping me. I think the most important one is the fibro specialist at a rheumatolygy clinic. She suggested that I get a sleep study and I found out that I have sleep apnea. The sleep study Dr. told me that everyone with a diagnosis of Fm should have a sleep study. When you have sleep apnea you could have a build up of carbon dioxide which can cause pain among alot of other things. I was amazed when I googled sleep apnea.
    I also went to an endocrine specialist and I have hypothyroidism. She did the total panel of thyroid hormones which several drs. had refused to do for me. my thyroid tests had always come back normal. the specialist discovered my body doesn't have the ability to convert the t4 to t3, my t3 was almost non existent, so now I take 2 thyroid meds. I went to an allergist and discovered I was allergic to my cat, amongst other things. I had to give away my cat, but I feel better now, the good news is I'm not allergic to dogs :) I'm going to physical therapy and found out that one leg is shorter than the other which can cause all over body pain, so now I have a lift in one shoe. I found out I had a huge vitamin deficiency, now take alot of supplements and eat whole foods and alot of fruit and veggies. Also, fish oil has helped, I had refused this before because I was vegetarian, but now eat chicken and tuna. I just went to the dermatoligist so I can find out what the skin bumps are, waiting for results on this.
    I use a tens unit and lidocaine patches for back pain. Also found out my white blood cell count is low so I'm waiting for this to be investigated. Stopped the SNRI med. I can think better now!!
    So that is my story, hope it helps someone :)
    I would also advise Dr. Teitelbaums book From Fatigued to Fantastic, so far he has been right about several of the problems that fibro people have that can be helped.
  2. dorrene

    dorrene New Member

    49yrs old RN, Fibro started 1982 CFS started 1997 plus Restless Leg Syndrome 20 yrs and IBS

    Right now I'm back to normal. Took years to find the right supplements that really work for me.
    I believe the CFS is caused by a virus or two so I try boost my immune system.

    L-Tryptophan and B6 (for sleep)
    B12 sublingal (brain & energy)

    Thymus gland extract (immune support) Reshi mushroom (immune support) Green tea capsules (immune support) TRANFER FACTORS (immune support) VERY IMPORTANT for immune support keeps the viruses under control. Yin Chiao Chinese pills (immune support0

    Culling pills (chinese meds)for IBS, Probotics ( IBS) the kind that have to be kept in refrig, 50 billion a capsule for IBS
    Hawthorn ticture ( heart ) Eleuthero Root (adrenal support) Astragalus (energy)

    CoQ10 300-600mg (exhasution, heart) Acetyl L-carnitine 1500mg/day (brain & pain, memory, brain fog) VERY IMPORTANT, Ribose 5gm up to 3x day All these increase energy helps CFS and Fibro

    Vitamin D3 2000u to 10000u /day VERY IMPORTANT much less pain since I started taking two years ago.

    Cal/mg/zinc liquad (for RLS)

    Lots of vitamins: B12, all the B's, D, C, E, Cal/mg/zinc Fresh vegie and fruit juices Healthy diet NO SUGAR, FIBER, NO JUNK FOOD ie Wendys, Burger King, Home cooked and organic ismuch better for you. Drink only filtered water.

    I take thyroid too, levothyoxine and T3. I have had no problems with them but you do need a endocrine doc or a friendly doc to watch you closely at first ( regular lab tests). Thyroid has decreased my pain whenever I stop or reduce the pain comes back.

    Something that helps with the Fibro pain, I sleep on a magnet mattress pad that has a lot of strong magnets.

    For exercise walks and yoga are a good start.


    I take almost all of these every day and now I have my life back.
    [This Message was Edited on 06/08/2010]
  3. Amyiable

    Amyiable New Member

    I had the same experience. My pain just vanished once I got my ft3 in the top 1/3 of the lab range. Before I figured that out, my pain was horrible. Had trouble dressing, opening doors, pain just laying in bed. Very bad.

    My rheummy didn't understand it. NO more Humira, Enbrel, Methotrexate. It's been 8 yrs since I began dessicated thyroid meds & never looked back. I still deal with some fatigue, but it isn't nearly as bad. And of course, no pain. Bones improved too, which never happens with the synthetic stuff.

    Mainstream doctors don't like that med, but none of their complaints are science based. I nearly died at their hands, because they want to rely on the TSH test, which is a pituitary hormone (not a thyroid hormone). I go to a Integrative Medical doctor. He's much smarter.

    Amy
  4. dorrene

    dorrene New Member

    Yes, the thyroid cut my pain in half. Now taking D3, Magnesium and Acetyl L-Carnitine for fibro I only have pain when I'm coming down with a virus.

    Dorrene
    [This Message was Edited on 06/10/2010]
  5. dorrene

    dorrene New Member

    I've been sleeping on one of these magnet mattress pads since 2000. I bought one because at the time fibro patients were having good results relieving their pain etc...I don't like being without my pad for very long. You might not notice a difference at first I think it takes some time for the full effect.

    Dorrene
  6. walkingthetightrope

    walkingthetightrope New Member

    When I was a child, I was very active physically (playing basketball, swimming, hiking, etc.) Every once in awhile, however, my legs would lock up and I couldn't bend them. At first they thought it was polio, but I didn't run a fever, so they sent me to bed for a day and my legs would recover.

    In my 40s my fibro became so bad I wanted to die. I didn't know what was wrong at the time. I heard about a workshop on fibro so I went and it was such a relief to know that there were others with the same symptoms. I pursued my problem with doctors and my own doctor didn't believe in fibro; another specialist that dealt with rheumatoid diseases tested me but didn't know if what I had was fibro or just low thyroid. Later, under the care of another doctor, my thyroid was brought up to normal but the fibro symptoms remained.

    The only thing that the doctors seemed to have available was anti-depressants. These made it impossible to for me to think clearly as I needed to do for my "research oriented career" so I decided not to take them. Meanwhile I did my own research and discovered that one didn't need anti-depressants to boost seratonin levels so ones body would produce melatonin to sleep soundly at night. One could buy melatonin over the counter and it worked fine.

    For awhile, I also took malic acid with magnesium which helped boost my energy, however, what seemed the most hopeful was reading about guaifenesin. I checked with my doctor and after taking a few tests to make double sure that guai. wouldn't have any side effects, she gave me her blessing to work out the best dosage on my own. 6 weeks after beginning it, I felt a muscle relax for the first time in probably 15 years.

    I continue to take it in the morning and before bedtime and I am able to recover somewhat from the day's activity. A massage once a month helps as well to keep me going.

    The world out there has many amateur doctors willing to discount ones aches and pains, offer remedies such as "just walk and exercise more", etc.. I find it better to keep my pain to myself and get by as best I can.

    This has been what has helped ME the most, but it is still like walking a tightrope: you have to keep going but watch your step and try to keep everything in balance. Good luck to all of you out there. I am now 72 and life is much brighter than it was 30 years ago.
    [This Message was Edited on 06/20/2010]
  7. u&iraok

    u&iraok New Member

    Fixing my digestion and taking Betaine HCL, enzymes, probiotics and fermented foods

    Repairing my endocrine system

    Killing viruses and infections with MMS

    Fixing nutrient deficiencies

    Eating well

    Doing what I can to sleep better

    CoQ10
    Vit D
    Vit C
    B Vitamins
    Good fats/oils
    Whey powder
    Antioxidants and greens powder
    Minerals

    Exercising a little bit

    Stretching & massage

    Working (lightly) in garden, being in nature

    Budgeting my energy

    Avoiding stress (yeah right!)

    Avoiding chemicals

    Looking at the bright side--if I have to lay down a lot well then I can read lots of good books and watch some good shows on tv, can avoid events I didn't want to go to anyway


    [This Message was Edited on 06/29/2010]
  8. Juscindy

    Juscindy New Member

    I found something that is working very well for me. It's called low dose naltrexone (LDN). I've been on it for a month now and I feel better than I have in years! Prior to taking this med I had been taking vicodin to deal with my pain. I haven't needed to take one in weeks now. I have energy and I just plain feel good more days. I hope others will look this up online and learn about. It's an old, known, very safe drug that was used in large doses ( I think I read 300mg) to treat drug addiction. It's used for FM in vey low dosages (4.5mg). It has very low side effects that go away over the first two or three weeks and it has few drug interaction precautions. the way it works is this (mind you this is my understanding of it and I would reccommend doing your own reading about this), it bind (for a short time) to the same receptors in the brain that opiates do, blocking them for a short time. These same receptors are also used by endorphins so when they receptors are blocked the body thinks it is low on endorphons and produces more. Endorphins are the bodys natural pain blocker. The results are amazing! I took my first dose at bedtime and the next morning I woke up feeling better! I could stretch and I didn't have the joint aches! I had energy too. And the best thing was I plain felt good! Now, this is no cure...I still have flares from the weather and stuff, but I can get twice as much done each day. In fact I feel so good some days I have to make myself be careful not to over do it and throw myself into a flare.

    Most doctors do not yet know about this med because it is an old, out of patent drug so no pharmaceutical companies will spend the money to fund the research.

    If anyone is interested in finding out about this med I can give a few links:
    http://autoimmunedisease.suite101.com/article.cfm/the_promise_of_low_dose_naltrexone_therapy
    http://www.ldnscience.org/

    You can also call a compunding pharmacy in your area to find out who is prescribing this med and what it is being prescribed for, this is what your doctor will want to know.

    I hope this helps someone who is hurting
  9. 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

  10. 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.
  11. 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.
  12. 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)
  13. 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!
  14. 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?
  15. 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.

  16. 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.
  17. 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
  18. 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.

  19. karkel

    karkel New Member

    magnesium/calcium/zinc
  20. karkel

    karkel New Member

    look on their web site couldn't find