What has helped ME (no pun intended Myalgic Encephalomyelitis)

Discussion in 'Fibromyalgia Main Forum' started by balletdancer74, Oct 25, 2006.

  1. balletdancer74

    balletdancer74 New Member

    I'm about to turn 32 on Halloween but have had FM/MPS complex, CFIDS/M.E., chronic, incessant head pain (the bain of my existance), IBS, GERD, small pituitary adenoma, severe 'reactive' hypoglycemia, allergies to just about everything, etc. for at least seven years...full blown that is.

    When I first became bed-ridden for eight, long months, all I could do was focus on the pain, weakness, bizarre symptoms and anything that wasn't so positive.

    I've tried over 100 medications, many herbs which I'm not so keen on, personally, as they're not FDA approved, so we really don't know the side effects or how they "could" potentially react w/ meds, etc.

    What has helped:

    - Neurontin (helps me w/ neuralgia, myalgia, spasms/twitches and weakness
    - Calans SR (preventive for "migraines" though I get what my neuro and I call head pain attacks - HPAs)
    - Klonopin - helps with the severe muscle pain (neck, legs and head especially)
    - Zopiclone - sleeping aid that can't be found in the U.S. Can be found in Canada, the U.K., etc. I just stopped needing it not that I sleep that well still...
    - Zyrtec - as needed
    - Migranal Nasal Spray - migraine abortive - as needed
    - Nexium

    Weekly vitaimin drips/Myer's Cocktail tailored to my needs and vitamin/mineral deficiencies. Very helpful!

    Acupuncture - works if you find an acupuncturist who one, LISTENS, and two, is knowledgeable about FM and/or CFIDS/M.E.

    Myofascial massage/cranial sacral treatment with a PT

    Warm epsom salt baths - one can add a little bit of hydrogen peroxide and/or baking soda to help detoxify the body. Be sure to drink 8 oz of water before, during, and after.

    Gentle stretching. As a former professional ballet dancer, I need to stretch or I feel like I'm "stuck."

    Heating pad - my best friend along with my ice pack for my head as someone else mentioned. :)

    Changing my diet. I have "sweet teeth." Heck, I was born on Halloween! lol I avoid sugar as much as possible. I avoid yeast.

    Detoxifying through diet every few months. Juicing is very helpful as Rich Carson mentioned.

    Ridding oneself of toxicity - people (who are your real friends and relatives who care about you?), foods, scents, chemicals, etc. That has been a big help in diminishing the stress in my life.

    Meditation - Ok - so I suck at meditation as I'm too upbeat, but when I start relapsing or flaring up or getting a head pain attack, I FINALLY learned to stay calm as I KNOW it will pass...When? I have no idea, but becoming anxious has never helped. Easier said than done, but after years of dealing with these illnesses, I finally truly accepted them.

    Walking...

    Music - my "therapy" as I used to work for a record label in publicity after my ballet career abruptly ended...of course, college was in between...Hard to tell I was an English major sometimes these days! lol

    The staple vitamins I get in my drip are Magnesium, Chromium, B complex, Vitamin C and glutathione. When I'm deficient in something else, it's thrown in. I can't take anything orally as I don't digest them properly...

    Probiotics...

    Eating every hour or two - small portions...

    Sorry for the soliloquy I've written. I'm sure there's more, but I think I've bombarded you all enough...for now. *grin*

    Oh, and having a fantastic medical team - duh, right? :)

    So, again, I went from COMPLETELY bedridden to able to walk, get around and do things. Sure, I'm ALWAYS in pain and feel weak (not nearly as much though), but I pace myself as much as I can....That's the hardest thing to learn - pacing oneself, but it's the most important thing. Don't beat yourselves up...takes time.

    Hope some of the above helps.

    Healing hugs,
    LB31

    p.s.
    Pls pardon any typos, but this perpetual head pain makes it difficult to look at the screen for too long.
  2. KelB

    KelB New Member

    Found this a few pages down with no responses - this board moves too fast!

    Bumping so that others can benefit from these suggestions.