I got BETTER! a.k.a what has WORKED FOR ELLIKERS!

Discussion in 'Fibromyalgia Main Forum' started by ellikers, Feb 15, 2006.

  1. ellikers

    ellikers New Member

    I orginally posted this in February of 2006, because I wanted to share my story of how my health had dramatically improved, first in only a few months (when I first wrote this), and then later, recovering from a resurgence of chronic pain/diagnosed with fibro May 2010 ...

    Here is the brief summary of my experience with CFIDS (the best diagnosis I think for this part of my "stuff") and some fibro-like tendencies that then became way more pronounced fall 2009 until may 2010 after a good period. It's rather long, but I made it as succinct as possible.

    This is what I think are the main areas to solving my version of CFIDS (what my NP and I came up with):

    1) Quality Sleep: having a regular sleep time, healthy bed (get rid of allergen issues), no TV in room, taking meds to help if need be

    (2) Nutrition: eat a well balanced diet focusing on WHOLE FOODS (as little refined food as possible) such as whole grains, pasta, quality meats, nuts, fruits and veggies (eating organic whenever possible), take supplements such as vitamins and minerals esp. if you have a definciency

    (3) Exercise/Movement: GENTLE and CAREFUL exercise, such as swimming, that moves the body and helps it adjust to increased activity and keeps us healthy, gradually increase as body gets stronger and healthier, stretching/YOGA can be especially helpful to balance the body, calm the mind and develop some strength back

    (4) Manage Pain/Immune System/other issues: if you have other related issues such as anxiety, get good treatment (meds, therapy, etc) and have things to use when you have a flare of viral or pain symptoms

    I am NOW 28 years old, (COMPLETELY graduated from university- HOORAY!) I am on the petite side and have always had a sensitive system (I am passionate, emotional, have had some anxiety and depression issues previously in my life).

    I started getting ill December of 2004 after cleaning up mold in my house (may have been a trigger, I don’t know). I got two very bad colds within days of each other, then had bout after bout of really bad flu symptoms (mainly chills, major aches, super sensitive skin, sore throat, sweats, fevers etc) for next month and a half. My energy dropped very low, immune system was haywire, stomach hurt, intestines hurt, bladder hurt, and my brain felt like mush. I withdrew from most my classes at the university that term. Slowly recovered with the help of immune supportive herbs and vitamins and lots of rest in the spring. Hard (emotionally, mentally and physically) term sapped all my energy again, I crashed and was anxious, super sensitive emotionally and mentally to everything, extremely fatigued, got more flu viruses, couldn’t exercise or exert myself to any normal pre-illness degree. Things went up and down over the summer, got the flu bugs again with super sore throats, energy still low and very sensitive to any exertion, pains and aches started to intensify, including spasms in my muscles in my back and under my shoulder blades. Developed panic attacks, immune system crashed again, bladder/stomach/intestine problems flared up again (especially after exercise or any exertion). Was sleeping way more than I ever have before but I was still exhausted etc.

    Over this period of time I faced the same crappy responses from doctors that I read a lot of people on here have dealt with as well. They all kept saying I was stressed and that’s why I was getting sick and having these various problems but the thing is I was no more stressed than any other time in my life- what was stressful was my being sick and feeling horrible almost all the time!!

    Finally found a GREAT nurse practitioner in December (2005) and with her help and the lots of other things I was already doing to help myself get better, I have improved a LOT. It's based on the four areas mentioned above.

    Here is what I STARTED as my specific Ellikers protocol (I'm not currently doing all of these):

    Both taken after I eat a meal (twice a day): (1) multi-vitamin (from Thorne, formula 5) (2) calcium and magnesium supplement (1,200 mg each, Rainbowlight brand “Everyday Calcium”)

    Taken as I eat: GI Encap from Throne (helps stabilize my IBS symptoms)

    Taken as needed after eating: Udo’s Choice Pro-Biotic (especially if my bowels are being aggravated or I drink some beer) and after I have a round of antibiotics

    Taken at bedtime: Prozac (no longer taken) & Remeron (anti-depressants that helped me achieve quality sleep and balance my neurotransmitters I assume)

    Xanax (as needed) for panic/anxiety (mainly panic attacks)

    I took the TV out of my bedroom (as was recommended to me to leave the bed for sleep and sex only) to help with sleep, and I go to bed at approximately the same time every night

    I drink lots of water everyday and eat more fruits, veggies and whole foods (I limit highly processed and sugary foods) and I eat organic foods as much as I can.

    I stretch and do simple yoga almost everyday.

    I go in a hot tub, then swim laps and tread water, then go in the steam room at a fitness center 3-4 times a week.

    I started by only being able to be active in the water for 5-10 minutes at the maximum and now I can swim laps (much faster than when I started and without pausing very much) for 20-25 minutes. I am amazed I can do this! I also sleep much better, I had nearly NO anxiety problems for a year (then they came back, unrelated to my illness I think). I have incredibly increased energy levels, no bad bouts of the flu or bad colds in at least 2 years (I've had a handful of normal colds, nothing super bad, NOTHING like it used to be), I can ride my bike, go on walks, jog, hike, and rock climb again without being exhausted (other than normal), I am happier, calmer, stronger, and my pain is manageable and hardly noticable.

    I am much more confident and healthy now, even though I know that I might have relapses or flare ups- it’s easier to handle them since at least I feel pretty good for a fair amount of the time. I know that I need to limit my activities and check in with my body to see how much I can do in a day, but I can understand my limits better now (after practice). And NOW I've gotten to such the point that I hardly have to manage my life to avoid symptoms! It's SHOCKING! And TOTALLY POSSIBLE TO GET BETTER!

    I really didn’t think I could get this much better in such a short period of time, and that it would last, but it did. I think that it is all thanks to my hard work (lots of research, reading and trying things out and making big changes in my life), the advice and the availability of medications from my NP and the fact that I am young and have a relatively healthy body besides the CFIDS.

    I just wanted to share my story and talk with everyone who has comments or questions in the hopes that my experience can shed some light and hope for all of you wonderful people.

    Much love to you all,

    p.s. Over the years I was also on zantac and protonix for stomach issues, lexapro (different anti-depressant) and trileptal (a mood stabilizer). Don't really know if they helped or didn't ... I think the protonix solved a start of an ulcer though.

    p.p.s As of 8/28/2008, this is my protocol:
    - swim, yoga, riding bike as much as possible
    - remeron at night for sleep/balance of neurotransmitters
    - xanax as needed for panic
    - multi-vit, calcium and mag. everyday
    - GI encap (at meals) when digestive system acts
    - vit D (for deficiency) everyday
    - vicodin as needed for idiopathic (unknown cause) stabbing upper abdominal pain (see later posts)
    - immune system support herbs when I'm fighting something off
    - heat compresses (flaxseed bag heated in microwave) when I'm having usual muscle cramps, pain, etc
    - I go to a bio-energetic practitioner to help with energy balancing to fix belly pain problem

    p.p.p.s As of Spring 2011:

    - I don't have any issues with CFIDS symptoms
    - Super super mild fibro flares rarely
    - I can work 40 hours a week at an intense and stressful job, and have energy to spare
    - I can hike, run, bike, do intermediate yoga
    - I have meds to take if I have a pain flare, but don't use them much
    - Only things I regularly take right now are (1) omega 3 supplement (fish oil, which helped my skin A LOT recently (2) semi regularly take vitamin D3
    - I eat a balanced diet with lots of water, focus on whole foods and limited sweets, enough protein, etc.
    - Actually finally gained weight (without influence form meds) to my healthy goal (before, stress caused me to lose weight)
    - I stay on top of trigger point muscle issues with stretching, heat, tennis ball therapy and if needed physical therapy sessions

    I'm astounded at my recovery. I feel like I'm in my early 20's again ... I'm restless and needing more goals and things to do because the goals of "feeling well" or at least better happened ... the last several years were fraught on and off with health issues, and I didn't know what "Average" or healthy or normal energy levels even felt like until now.

    As of Feb 2012:
    Doing just as well as ^ my last update, but I can bike and run more (ran a half marathon last Fall- 13.1 miles, and 3 other races last year).

    Love and healing to all!

    <br>[<i>This Message was Edited on 03/05/2006</i>]
    <br>[<i>This Message was Edited on 06/26/2006</i>]
    <br>[<i>This Message was Edited on 01/15/2007</i>]
    <br>[<i>This Message was Edited on 11/21/2007</i>]
    <br>[<i>This Message was Edited on 09/09/2008</i>]
    <br><br>[<i>This Message was Edited on 05/15/2011</i>]
    <br><br>[<i>This Message was Edited on 05/16/2011</i>]
    <br><br>[<i>This Message was Edited on 02/09/2012</i>]
  2. ellikers

    ellikers New Member

    Thanks for the info!

    I don't actually take that much of it- only if the pain is really bad and all my other methods have not alleviated it. I have to take tylenol instead of ibruprofen because of stomach issues, otherwise I would switch/alternate between them.

    Thankfully I have not had much need for it lately (only recently with a root canal, blargh! Glad that is over and solved!)

  3. ellikers

    ellikers New Member

    bumpity bump
  4. snooker11

    snooker11 New Member

    congrats to you!!! that's great. it's always great to hear stories about people feeling better. yay!
  5. jane32

    jane32 New Member

    Did the nurse do any blood work to check your toxic levels or for viruses?
    I am just curious.
  6. ellikers

    ellikers New Member

    Nothing showed up on the blood tests that were run .... I've had LOTS of tests run over the last year .... my viral levels were normal as was my immune system (i say that it's dysfunctional, but not deficient). They even tested for HIV. (Which was negative)

    I am pretty sure they also tested for any unusual levels of chemicals or metals ... but I can't be completely sure.

    Do you happen to know what tests for those issues could be called? (The name that would show up on a bill etc?)

    Now that I have insurance again (HOORAY!) I might have more tests done to make sure I don't have any lingering problems (like allergies etc).
  7. jane32

    jane32 New Member

    I was just thinking of EBV or the heavy mental toxins maybe candida too I would have checked.

    But if you changed your diet and you are feeling better I would just go with it. Ifyou start to feel worse again then I would have the levels checked,
  8. ellikers

    ellikers New Member

  9. Paracelsus

    Paracelsus New Member

    Wow, what an uplifting success story. Keep up the good work.

    Try to get off the drugs (especially Prozac) as soon as you can--- their side-effects are not trivial, and any powerful psych drug is going to have deleterious effects, especially long-term.

    For natural aids to better sleeping you might look into remedies like melatonin, magnesium, herbal formulas (with valerin, chamomile, etc.), and tryptophan.

    I agree with one of the other posters-- a chronic virus like EBV may have been one culprit in your illness. Nearly everyone is infected with EBV but few get sick from it (like mono, which I have had). There are tests that measure levels of EBV or EBV antigens in blood.

    Stay positive. Your attitude about putting health first is sensible. Get your remembered health back, keep it, and live a long happy life!
  10. ellikers

    ellikers New Member

    I had lots of blood tests for infections over the last year because the doctors were trying to figure out what was going on with me- nothing came back indicating any infections or mono or EBV or anything related to that. Not anemic, no signs of immune system deficiency.

    I've been on remeron for a long period of time previously in my life and didn't have any majorly bad effects. I think it does shift my biochemistry and that my reactions to stress change, but not necessarily in a bad way.

    I will try to get off the meds after I have had a good period for quite a while. I know that I need to stabilize my body fully before I go off medications that are currently helping me.


    Thanks for the comments! I think the best cure to my illness (and probably other chronic illnesses) is to live as healthfully as possible and let your body try and heal the best it can (since it seems a lot of the triggers of our mysterious illnesses are exactly that, super mysterious).

    -- Ellikers
  11. ellikers

    ellikers New Member

    bumping ... because so many people constantly mention that they want to know the "success" stories of people feeling better.

    :) Wishing you all well!!
  12. ellikers

    ellikers New Member

    I'm still doing pretty well, although I think I might be getting seasonal allergies .... I'm considering going to an allergist and having a big test to figure out what I might be allergic too, I'm pretty sure I have sensitivity/allergy to mold and possibly pollen.

    Anyone been allergy tested? Do you feel like it was a help?

    I just want everyone to know there is hope out there. There are ways to feel better. The hard part for me was just to keep persevering and working hard on trying new things to find what worked for me.
  13. ellikers

    ellikers New Member

    Wow. So I wanted to post an update and I just realized that I've been relatively well for several months now. How great!

    I'm still taking the anti-depressants at night for sleep and such, the vitamins and supplements during the day (although I switched to a women's multi-vitamin from RainbowLight) and I'm taking less xanax and tylenol because i'm having less trouble with panic and anxiety and pain.

    I'm still having what I think are allergy issues ... I have scheduled an appointment with an allergy specialist for next week. I'm hoping that the doctor is positive and supportive about CFIDS issues, and isn't dismissive, because I would really like some testing done on me to see if I have documentable allergies to mold, dust and the like.

    I still have minor flares when I do to much (9 hours of child care work, being in a relative's wedding and traveling etc) which basically means my glands swell, I become SUPER tired, get a fever sometimes and tense and spasming muscles. But those flares only happen when I overdo it, and I interpret it as my body saying it's not ready to do so much and I need to stop and take a break.

    I sincerely believe that I have found the best "cure" for my body, and possibly many other people. I believe the best "cure" out there is to do as many methods as you can to support your body and be as healthy as possible. I do not think there is one single thing that can work miracles, and nothing changes overnight. It takes hard work but it pays off.

    My opinion on the best way to get better and heal has these main goals:
    (1) better sleep and rest
    (2) less pain
    (3) less illnesses and better immune system functioning
    (4) less anxiety

    Several important methods:

    (1) good nutrition: lots of whole foods like fruits and veggies, whole grains, high quality meats, nuts and seeds and fewer sugary and processed foods. I'm taking a nutrition class right now, and what I have learned is AMAZINGLY helpful. I'm really glad I took this nutrition class, and I wish I could share all the info with everyone on here because I think it would help so much!

    (2) regular sleep and relaxation by doing yoga, stretching, taking baths, taking walks, getting outside to be in nature and getting fresh air as much as possible, taking ADs for sleep

    (3) decreased pain and anxiety through breathing exercises, decreasing my work and stress load and taking xanax as needed for anxiety and pain due to tension and muscle spasms

    (4) movement and exercise: I do yoga almost everyday, I recently started pilates at home, and as I mentioned before I swim every week. I think the main point is to do as much activity as you can and slowly increase the amounts and different types you're doing so your body can adjust and get healthier.

    Healing IS possible. Feeling better IS possible. There is hope.
  14. Scapper

    Scapper New Member

    Thanks for sharing with us your road to recovery!!

    Aside from each individual's combination of meds and supplements, I need to be reminded of the practicing of a "routine"

    Your use of a steam room also caught my eye. I don't have access to one, but I know this is an extremely powerful and effective way to detox. I'll put this one on my list of things to check into - thanks.

    Keep doing what makes you feel good :)

  15. TwinMa

    TwinMa New Member

    It's nice to see someone getting better! Thanks for sharing what worked for you! I'd sure like to see you keep updating on this thread. It's a good way to see progress over time.
  16. PepperGirl52

    PepperGirl52 New Member

    Sorry that someone so young has to be dealing with this horrid battle! But you have been VERY pro-active and it's helped you a lot to take control, hasn't it??

    I have been taking several anti-depressants for a few years now, too. For pain and sleep problems, and NO ONE is going to get me off them right now! They'd have to pry them from my cold, dead hands! Believe me, there are just as many side effects from some of the 'natural' supplements, especially if you are allergic, like you are.

    Yes, I have been allergy tested-and I used to do them for an allergist, also. They're really not that awful, unless you're terribly allergic, then you will have a good deal of discomfort. But the allergist and his nurse should certainly have meds on hand to counteract any reaction you'd have.

    Take care, and keep updating us, ok?? God bless you! PG
  17. winsomme

    winsomme New Member

    do you know the ingredients in this GI product?

    if so, could you post them?

  18. place

    place New Member

    You are so thoughtful for coming back. thank you for posting.

    Do you feel like you can increase your level of activity without causing pain in your muscles?

    Have you pushed your self up to the point where you're about to have pain but then stop? And does this method, IYO, increase the threshhold for your pain tolerance?

    Please come back and post on your progress!
  19. Mikie

    Mikie Moderator

    I'm so glad you have found a regimen which helps. I think it's important for people new to these illnesses to see that it takes a lot of effort and trying different things to find which things do work. There is usually no one thing which is a magic bullet. It's lifeystyle changes, rest, nutrition, exercising as tolerated, destressing, and whatever combination of supplements and meds which help.

    Best of luck to you for continued good health.

    Love, Mikie
  20. earthdog2000

    earthdog2000 Member

    Dear Elli,
    All I can say is Thank God and keep taking such good care of yourself! I am a 48-year old female who has CFS, FS and Panic Disorder and was'nt diagnosed with the first 2 until the age of 41. I think my problems began with a really bad intestinal flu that had me in bed for 6 weeks 7 years ago. Anyway, I have been struggling with all of this for 7 out of the 8 years my husband and I have been together unfortunetely! I am now taking many vitamens, some meds and try to do yoga and swim 3-4 times per week thanks to people like you who have shared your success stories and what works for them. Stay healthy and well and above all, if you do have flare-ups DO NOT give in to them. Meaning, try to fight it mind, body and soul and keep moving!
    I'm so happy for you, Stay well, Julie