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Patient Experience: "What Bronllys taught me about pacing."
In 2012, Maya, who had tried to cope with ME/CFS on her own for many years, attended a pain management centre in Wales, U.K., and is now able to achieve more through pacing and acceptance, than she had been able to before the course...
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Article: To blue skies...and far away places.

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, May 20, 2010.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. Kati

    Kati Patient in training

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    Thanks for sharing, Spitfire, of course you can talk periods in here- and prepare me to what it's like to prepare for menaupause. (sp?)

    I would suggest that XMRV is being fed by estrogens which could explain why you feel TERRIBLE around your periods- or perhaps even in between- When your estrogens are high, XMRV thrives.

    Would it be an option for you to try getting off hormones or cutting down the dose to see if that helps?

    I really wish I had answers for you- but I don't. We are all patients and all struggling, until scientists figure it out. In the meantime, we can all dream of Mexico, NZ, Peru, India, Italy, wherever you want to be. Dreaming is free!

    :hug::hug::hug::hug::hug::hug::hug::hug::hug:


    ETA: Nice shot of you!!! If you want to send me the photo file, I could correct the noise in the background via photoshop program - easy enough to do.
  3. Kati

    Kati Patient in training

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    Spitfire, I couldn't send you a private message back due to full mailbox on your side. Also couldn't get the photo- Clear a bit of your mailbox and will give you my e-mail address as a pM. Kati
  4. Hip

    Hip Senior Member

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    Hi Spitfire

    You know that old joke: "If men had menstrual cycles, they would have figured out a cure for PMT a long time ago".

    Of course, in reality, this is no joke. As a male, I have no such cycle, but I experienced suicidal thoughts (suicidal ideation) every day for several years, caused by catching a virus that led to my chronic fatigue syndrome. This virus also caused very high mental tension and anxiety all the time, profound anhedonia (loss of the sense of pleasure in life), depression, plus the usual gamut of CFS symptoms

    Miraculously, I finally figured out the cause of the anxiety, suicidal thoughts and anhedonia. It turned out that these were due to brain inflammation (inflammation caused by the viral infection). In fact, brain inflammation probably underlies many of the problems of CFS.

    More to the point, I was thankfully able to devise a simple way to treat this inflammation, with natural supplements.

    Once you treat the brain inflammation, the anxiety, anhedonia and suicidal ideation will largely disappear.

    Now, since inflammation is also the main cause of many symptoms of PMT, therefore there is a good chance that the same anti-inflammatory supplements that helped me will also work well for you. The anti-inflammatory supplements that eliminated these dire mental symptoms are:

    Curcumin 1000 mg
    Alpha Lipoic Acid 500 mg
    Propolis 1000 mg

    Curcumin is a herb, Alpha Lipoic Acid is an anti-oxidant, and Propolis comes from bees.

    If you take these 3 anti-inflammatory supplements twice a day, with a meal, they will greatly reduce the brain inflammation (and sinusitis or headaches, if you have these), and as a consequence, will greatly reduce the anxiety symptoms, suicidal thoughts, as well as the anhedonia. For me they were a miracle.

    All of these safe supplements are easily obtainable in your local vitamin store, and are fairly cheap to buy.

    Technically, these supplements reduce inflammation in the brain mediated by the NF-kB and COX-2 pathways.

    It is probably the estrogen cycle that is behind your symptoms. Estrogen is considered a pro-inflammatory hormone. So the higher the estrogen levels, the more inflammation you will experience. Inflammation is high in CFS anyway, but add estrogen and the inflammation get even worse.

    Here is a graph (the red curve) of the estrogen cycle: http://67.228.209.215/biology-forum/about4749.html?hilit=Heat exhaustion Does this roughly follow your symptoms?

    By taking the above supplements, these should prevent any brain inflammation occurring, even when estrogen levels are high.

    You need only take these supplements when you experience symptoms. In my case, I take them all the time now (as my inflammation symptoms are always there, unless I take these supps).

    Note: I cannot say for sure that this will work for you. But I really hope that it does. I am trying to help, because I have been through this same hell, and I know exactly what it is like. And I suggest it is not directly do with menstruation, but rather brain inflammation. The menstrual cycle just ramps up this inflammation processes.

    If you want to read more about brain inflammation and its casual conection to anxiety, depression, etc, see the research of Dr Gina Nick. http://www.sicksyndrome.com/dr_gina_nick_bio.php

    Gina Nick offers some other ways to tackle brain inflammation, which you might also consider employing. I came across Gina Nick's resaerch only after I worked out the above protocol; such a shame, because this would have saved me a lot of trouble and misery.

    By the way: even for those with just regular PMT, it is worth trying out herbs that reduce brain inflammation on your bad days.

    And anyone with chronic fatigue syndrome, male or female, may benefit from taking anti-inflammatories to reduce brain inflammation. It is definitely worth experimenting with this.
  5. drjohn

    drjohn Senior Member

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    This is what happens when there's "women's converstaion" and men are around in Mrs Brown's house http://www.youtube.com/watch?v=FdSaWW9vuow (caution: sexual references and very strong language: Do not open if likely to be offended). The bit about "cycles" is at 1.43 but I'd sit through the lot if I were you. My favourite is Victoria Wood asking a friend at what part of the menstrusl cycle she was and getting the answer, "saggitarius."
    Cheers John
  6. markmc20001

    markmc20001 Guest

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    Sorry your sick Spitfire, and you don;t look sick in your picutre like many with CFS. However, great picture anyway! (The same problem I have becuase I am slim and look younger than my age. I also have had CFS so long I don't have as much phyiscial wear and tear on my body.)

    My favorite place to travel is to tropical climates,love cozumel! and playa riviera. Any CFS'rs going to mexico for a snorkeling, crashing, and napping party?

    Anyways, hang in there, in a few years we will have some treatment to allow us to live better. but don;t give up the hope you will have some better days!
  7. Kelvin Lord

    Kelvin Lord Ampligen Journalist

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    Colorado
    Nicely written, Spitfire. And very brave of you to post the picture. Not because it's a bad picture...you look lovely...but because it's such a good picture. I sometimes hate to look at my travel photos because they remind me of better days, or I start imagining being back there. Which sometimes feels, as you have so accurately reflected, like a dream. I was in Cabo San Lucas not too long ago, in a gorgeous location, about ready to finally "relax" when I had a serious crash. It turned out that the smog there was so high that my body completely freaked out. "Normal" people were saying, "what's the big deal, it just smells bad once in a while" but my body was screaming "It's a big deal!" My ears rang for days, I had a headache for a week, etc. All that to say, people today look at my Cabo photos and smile. I look at them and have bad memories.
  8. silicon

    silicon Senior Member

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    Hi Spitfire, I hold out optimism that you will be able to regain your “Mexico”-level of functioning (especially since that was not so long ago), and hopefully more. I hope that you are able to find something that actually improves your situation in the near term. Your mind seems very active and your fiery spirit shines through in your writings.

    I appreciate you speaking about your hormonal issues—it helps reinforce some glimmers of my understanding that there’s a whole other thing going on with female hormones generally, and especially when combined with chronic fatigue.
  9. ixchelkali

    ixchelkali Senior Member

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    Long Beach, CA
    Back when I still had menstrual cycles, I noticed that my ME/CFS got worse around my periods. I remember wondering if I were allergic to my own hormones. And the fibromyalgia made the cramps more painful. Then came menopause. I was thinking “Whoopee! Thing should get better now.” And they did. But I have to tell you, for me, they got worse before they got better. I didn't want to take hormones, because my endocrine system was already to wacked out. I would be having chills and hot flashes, alternating like every minute or two. I took to wearing shawls, because they were easy to whip off and on. And the hot flashes made it harder to sleep, which just made everything worse.
    <?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:eek:ffice:eek:ffice" /><o:p> </o:p>
    I was so crabby and cranky and awful, I couldn’t believe the things that were coming out of my mouth. It didn’t seem like me. I can’t explain why my husband, the most frequent target of my abuse, hung in there. I can remember wailing “NO ONE should have to go through menopause and have CFIDS at the same time. It’s just not fair!”
    <o:p> </o:p>
    Now that it’s behind me, it is better, in that I don’t have cramps, I don’t have the monthly exacerbation of symptoms, and I don’t have the hot flashes. I’m not the reincarnation of the Wicked Witch of the West. But I was hoping that maybe my ME/CFS would improve, and that hasn’t happened.
    <o:p> </o:p>
    I hope that one day we both can enjoy the beaches of <?xml:namespace prefix = st1 ns = "urn:schemas-microsoft-com:eek:ffice:smarttags" /><st1:country-region w:st="on"><st1:place w:st="on">Mexico</st1:place></st1:country-region> again. Although right now, being able to go to the local farmer’s market would make me very happy, too.
  10. Misfit Toy

    Misfit Toy Senior Member

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    Thanks to all. I love looking at pictures of when I was better because it brings such good memories back that I want it all over again and it gives me hope. I need to see them to remember who I am. What you see in that picture is how I look most days even now. I still look decent. It's very confusing to most.

    I hope that menopause brings some relief but I know other things will exacerbate. I can be like a total witch and I feel so unlike myself. I am moody and irritated.

    I would love to enjoy anywhere right now. Especially, being in my own skin. I feel lucky that I was able to go to the movies tonight.

    To better days ahead.
  11. tahoma

    tahoma

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    What type of treatment are you doing?

    Tahoma
  12. Misfit Toy

    Misfit Toy Senior Member

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    I am on progesterone cream. I also take minerals, norival, and I just started Hip's suggestions for brain inflammation. I have horrible brain fog. I tried yasko's protocol but honestly, it is too complicated for me to understand all of the pathways.

    That is what I am on along with Remeron an antidepressant which really has no effect.

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