1 Year Anniversary / What I've Learned

Discussion in 'Fibromyalgia Main Forum' started by bpmwriter, Jun 12, 2006.

  1. bpmwriter

    bpmwriter New Member

    hi all,

    one year ago this week i received my diagnosis of fibro and cfs (had been sick for about 18 months prior). in any case, i thought it would a good day to post a summary of some things that have helped me for anyone interested.

    1) DIET - i've become a juicing fanatic. even if you cheat a little on a wholesome, allergen-free diet, you're still doing a huge service to your body by juicing because the vitamins and minerals are so abundant and available to your body in juice that they make up for deficits elsewhere. diet is a huge subject and i won't even attempt to cover it all here but processed foods, alcohol, sugar, these things are all huge no-no's of course. imagine the trash compactor of your body shouting at you and refusing to clean up your messes anymore!! establishing that dialogue over the long term leads to body wisdom. everything you put in your mouth has an effect, positive or negative, somewhere, somehow. conscious eating is critical.

    2) SLEEP - i recently bought a new mattress and a cuddle EWWWWWE too! i love it. i sleep through the night now. less morning pain and stiffness. your sleep sanctuary is very important. i would recommend making sure your bed is in order and you're following the simple rules of good sleep hygeine before indulging in a cocktail of pills. also, amino acids (see below) can make a big difference in your sleep.

    3) MOVEMENT - my mobility degrades and my pain levels rise if i don't find some way to MOVE everyday. we must keep moving. you don't need to run the marathon, just move. the more predictable and regular you can make this routine, the better results you will see. if you need to take naps, by all means, take them! rest is very important too. but your muscles will only become tighter and more toxic if you're not moving. don't look at it as "exercise." look at it as lymph stimulation if you must.

    4) LEXAPRO - my experience is that anti-depressants for the treatment of cfs and fibro take up to 6 MONTHS to really do their work. i've been on and off lexapro twice now and the greatest benefits come when the muscles begin to relax, not temporarily like with a muscle relaxer, but day to day. anti-depressants have a place in treatment for their ability to run interference on the terminal stress response that keeps us all balled up. until the stress cycle is broken through some series of lifestyle changes and/or pharmaceutical intervention, healing can't begin. i know some people can't tolerate these meds, but anti-depressants
    and anxiety medications are the only class of prescription medications i can recommend until the medical community figures out these illnesses and delivers a real "cure." taking lots of meds only increases the toxic burden on your body. no one should live in pain of course, but the less meds the better, as a general rule.

    5) AMINO ACIDS - my experience is that there's something going on with our ability (inability rather) to break down protein; the gut, the liver, there's a problem somewhere. taking supplemental amino acids gives the body what it needs in a more easily absorbable form. i think the best way to work with amino acids is to experiment. my own research has led me to taking a free form complex that contains all the essential amino acids (these are the ones the body doesn't make, but we must get through food). it's a matter of debate but i believe in the science that says the essential amino acids are best taken as a group, not separately. i also occassionally take tyrosine for the dopamine boost/thyroid support and glutamine for gut healing, both non-essential amino acids.

    6) FIBER - if your bowels aren't moving, you're poisoning yourself (remember the trash compactor analogy!?) whatever it takes, keep the bowels moving! best way is through diet (beans, oatmeal), but use whatever works (ie. psylium).

    LYSINE (amino acid) for in-the-mouth sores.

    PRO-BOOST thymic protein during cold season, dips in immunity.

    METHIONINE (amino acid) and QUERCETIN for histamine problems and seasonal allergies.

    ACUPUNCTURE is a wonderful all-around therapy if you can afford to go fairly regularly (at least once a week).

    OH, headaches! the only thing that works for my MIGRAINES is an ssri anti-depressant (see above) as a preventative, but everyone's different. SHOOTING PAINS are almost always a result of accidentally ingesting aspartame (aka poison, class action lawsuit anyone?) SINUS HEADACHES i deal with as they arrive but sinus rinses (preventative) and steam inhalation when symptomatic work best for me.

    i've seen countless doctors over the last 2 years including a stint with the FFC, yet most of what has worked for me has been ideas i've gained from this board (thank you!) and independent research. we have to be our own doctors and health advocates. the worst thing you can do is wait on the line hoping salvation will come in the form of your next doctor visit. there are many great naturopaths out there, but this is stuff you can ultimately teach yourself. not only is it empowering but all your family and friends can benefit from your knowledge as well!

    be well,
    eddie
  2. mrsjethro

    mrsjethro New Member

    Eddie,
    It is always inspiring for me to be able to read about someone who is seeing an improvement in their conditions. I've been considering the juicing thing lately anyway. I am curious. Can you not get basically the same results with a much less expensive juicer rather than having to spend a fortune on one of those really nice ones? What kind do you use?

    I do know that my bed is wreaking havoc on my body. I'm hoping that I can pull out of this flare just enough to find a new bed this next weekend (they're having a big sale here). This mattress is an extra firm and it is just killing my back. It takes me 1 to 2 hours just to be able to get up and move around in the mornings. I had also been looking at and considering the cuddle ewe. It's good to hear from someone that actually uses it.

    I've tried a couple of different antidepressants and they always seem to make me feel so much worse. I have not tried the lexapro yet though. I may have to consider that one and discuss with my doctor.

    I do try to stretch gently, several times a day. Sometimes I just do it out of habit and don't even realize I'm doing it because I get so sore that I just HAVE to move around.

    What amino acids are you taking? Would you mind sharing which brand, what it has in it and all that good stuff?

    I think I've pretty much got everything else covered for now. Headaches are finally under control. Allergies and bathroom habits are fine too.

    The thought of accupuncture still scares me though. I'm not sure I could handle it on a regular basis right now, but I may reconsider if I can pull out of this flare for any reasonable amount of time. Do you by any chance have myofascial pain and knots? I think that's what scares me the most about the accupuncture. I'm afraid (scared to death) that she'll hit a knot and it will make me hurt that much worse. I've heard some terrible stories about that actually happening.

    Thanks again for sharing all of this information. Congratulations and Happy Anniversary!!
  3. jane32

    jane32 New Member

    I had my 1 yr. a few months back and I date it from when I first got sick..my officially 1 yr. of diagnosis will be in Sept.

    I totally agree with you about being yrou own dr. I had myself diagnosed way before I even saw the 22 drs. that could nto figure out what was wrong with me! That part was the most frustrating.

    I continue to try new things and just had acupuncture for the 1st time last week. I was very nervous but felt so calm afterwards and she started out slow with only 6 mins.

    What did the acupunturist diagnosis you with? mine was Qi, heart, and blood deficiency. She also recommended a chinese herb that is specific to CFS.. I plan on starting it this week.

    If I look back form where I was a year ago I am better in some ways but worse in others...I guess that is just part of the illness but fevers are still the worst symptom followed by low stamina/fatigue. Just recently I developed muscle weakness in my hands and forearms i think from typing..it is more like a burning pain but so annoying!

    Keep up the great work
  4. bpmwriter

    bpmwriter New Member


    mrsjethro, i take an amino acid supplement called biobuilde by body health but it's obscenely expensive, which makes it hard to recommend. the bottle says take 5-10 tablets a day, but i find that taking 2 a day is enough to get me through 30 minutes on the treadmill and a couple short, light sets of weights. it's amazing product but cost is prohibitive for long term use. i highly recommend the cuddle ewe. i actually spent $800 on a new mattress but still wasn't happy with the comfort level until i got the cuddle ewe.

    jane, my acupuncturist says the same thing, qi and blood deficiency. we also do a lot of ear needling to balance neurotransmitters.

    eddie
  5. Lolalee

    Lolalee New Member

    Thanks for sharing all the good info about what has worked for you. If you don't mind, I have a couple of questions.

    You mentioned that this is your 1 yr anniv of diagnosis. How long were you ill before you received diagnosis?

    How sick were you? In other words, were you housebound, partially disabled, able or unable to work, etc..

    One year later, what improvements have you seen as a result of your protocol? What can you do that you couldn't one year ago?

    You don't mention lifestyle changes. Do you have less stress in your life or are you handling it differently?

    Since our symptoms and situations are so varied, I guess I am trying to get a better picture of your before and after.

    I am happy for you that you have found some healthy ways to manage your illness. I think that would be a goal that most of us would aspire to.

    Thanks,

    Lolalee
  6. bpmwriter

    bpmwriter New Member

    i got sick december 2003 and never really recovered. in mid 2004 i had to leave my full time job in los angeles and move home to florida to live with my mother. i received california state disability for a year. i have not worked since i left california, not housebound necessarily, but not very active either. i've had ups and downs, just like all of us. but my life has been almost entirely stress-free for 2 years, no partner, no kids, no job.

    the most encouraging signs lately are the reduction of back pain and trigger point pain in my legs and hips. i attribute this to a combination of the lexapro and the new sleeping situation (mattress and cuddle ewe). the reduced pain + amino acids has given me enough energy to do light weight training, and surprisingly, my muscles aren't resisting. a workout does still leave me rather tired, but there doesn't seem to be the terrible backlash i've experienced in the past. baby steps!!

    prickles, thanks for dropping in. i try to read your posts whenever i can. always informative. everything i ever wanted to know about sinus problems i learned from you :)
    [This Message was Edited on 06/13/2006]