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ME/CFS and Beating the Clock
For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room ...
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Feeling generally better

Discussion in 'General Treatment' started by m1she11e, Apr 2, 2013.

  1. Jarod

    Jarod Senior Member

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    planet earth
    I'm for whatever makes one feel better. Even chicken soup, if that is what it takes. ;)
  2. First, thanks for sharing your experiences with us. Little steps forward are HUGE when you've been down and out for so long. Every story of improvement gives me hope.

    The issue with the colds and such is a really interesting one that I have experienced, but don't fully understand. As you note, it's ironic that for as awful as we feel most of the time, we never "get" sick. I've had CFS for six and a half years, and can't remember the last time I had a real cold that required tissues. Come to think of it, I can't remember the last time I had a gastrointestinal bug, flu... Anyway, I'm sure there are other threads on the forum that address this, but, again, it's validating to find that I'm not imagining things.

    Thanks again and keep getting better!!
    Wayne likes this.
  3. Gypsy

    Gypsy Senior Member

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    I felt inspired to try progesterone cream after reading this thread. Like so many other CFS/ME women, my periods and hormones are just....Hell. I showed estrogen dominance and slightly low progesterone on a saliva test. I currently have no doctor to help me monitor this anymore. Anyways, I am giving the cream a go. I ordered Dr Lee's cream, Progesterall. If it gives me even 5% relief from my hellish PMS it will be worth it.
    ukxmrv likes this.
  4. Allyson

    Allyson Senior Member

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    i treid yam cream that natural one nd it did not helpat all - I also had very bad pms and the best thig i did was take diuretic tablets - herbal- during last 2 weeks of every cycle Gypsy - hope this helps; no long term relief but it helped the horrid fluid build up that caused so many other problems - i would have taken Mg supps too if i had thought of it - evening primrose oil never did a thing for me. cheers
  5. Gypsy

    Gypsy Senior Member

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    Hey Allyson,
    Sorry to hear the cream you used did not help. I literally just started the cream about a week ago so I do not have much to report yet. One thing I thought I would mention, is that Wild Yam Cream is not the same as USP Progesterone. I spent 2 days trying to figure out the difference as there is so much conflicting info online, but apparently there are a lot of creams on the market labeled "wild yam extract" that actually have NO active progesterone in it. It sounds like you have made a lot of progress with your PMS with other things, but if you are interested in a little reading about wild yam vs. progesterone, here are a few links:

    http://www.sixwise.com/newsletters/...-does-provide-eight-other-health-benefits.htm

    http://www.johnleemd.com/store/faqs_progest_crm.html

    http://www.johnleemd.com/store/resource_progesterone.html. (this one has a large list of recommended progesterone creams)
    m1she11e likes this.
  6. Wayne

    Wayne Senior Member

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    Hi Michelle,

    I just ran into this thread today, and am thrilled to hear you've improved so much. I've noticed how you've tried so many things for so long. And it now appears the law of mathematics (odds if you will) have finally demonstrated that perseverance makes ever more and more things possible. Relentless persistence (or downright stubborness :)) appears to have shown its virtues!

    I think you make an excellent point about whether doing things in a certain order can make a difference between success and failure. I do think that in order for us to make use of a "good" supplement, our bodies have to be prepared to integrate it. And so often this integration is not possible with such run-down, enervated bodies pwCFS deal with.

    I recently started treating some severe hypothyroidism with some thyroid extract, and taking some herbals remedies for my Lyme issues. After starting this regimen, I've re-tried supplements I've tried in the past and not done well with, and am now able to get some benefits from. Laminine is the primary supplement I've noticed in the past few days that is now working for me, instead of making me nauseous like it did a few months ago.

    So relentless experimentation can indeed prove worthwhile in the long run. I've always cringed a bit when some on this board say they've tried something that didn't work as expected, and seem to believe this will always be the case. I think this can often be a hindrance to the kind of flexibility that is required of our complex health situations.

    Jody recently replied to my inquiry about how she had improved her health fairly significantly. Her reply (Jody's Post) was one I think you would appreciate. Relatively simple, but unique to her own situation. If there's one thing I've learned from dealing with my frustratingly difficult health issues is the absolute need to stay flexible. And to also be creative. When conventional medicine has very few answers (and even less compassion), and many other well meaning alternative practitioners are often guessing, it eventually leads us to having to assume responsibility and summon the initiative to do what "might" be our next best step (within our own unique financial constraints).

    You've obviously made some great strides for yourself, and I thank you for sharing your story and experiences with us. I also applaud your tenacity (and perhaps even audacity ;)) in making this happen for yourself. Congratulations!

    Best Regards, Wayne
  7. Allyson

    Allyson Senior Member

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    thanks for all that gypsy that is very kind of you

    Ally
  8. m1she11e

    m1she11e Senior Member

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    Yes, I have thought about what kind of improvement getting out of Orlando and this house that I know has mold issues might do for me. Prior to living here I was in Montana for many years and originally got sick in California. Moving from one place to another had never made a difference in the past. It wasnt til I had the HORRIBLE experience that I have begun to really think of environmental possibilities. If I had the opportunity, money, etc I would try some camping. Might be able to pull off a week. Do you think a week would give a person enough of a break to feel if its helping?
    jenbooks likes this.
  9. m1she11e

    m1she11e Senior Member

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    Thanks Wayne!
    You are always so positive and I always enjoy your posts! In regards to what you mentioned about Jodys post and "unique to our own situation." I couldnt click on her post or find it, BUT, by what you are saying I think I get the idea. One of the things I also started doing was to quit telling myself that "we (CFS people) cant do that or take this because our bodies will do this..." I started very much reminding myself that I was an individual with my own health challenges. Yes, I can relate to this group of people with symptoms much like my own but I am not a "them" or an "us." I am a me! I do come on here to see if something new or THE CURE has suddenly come up. I really have had to pull away from assuming that my body will react like everyone elses. Does that make sense?

    Also Wayne, somehow I think you may appreciate this. I understand this may sound weird but so is being sick every damned day!! One of my clients was studying weight loss and the mental aspect of it. She is taking a lot of classes. She told me about a woman that started to dialogue with her cravings, symptoms, etc. Things like "Hey stomach pain. I feel you, I respect you... Im not sure how you are serving me?" When she told me about it it kind of sounded interesting. Ive been around this type of thing my whole life so I take it all with a grain of salt. BUT, I did (in my mind, not out loud) start dialoging with my symptoms. If nothing else it started helping me to see these symptoms as being just that and outside of me. There was something about it that seemed to help. Emotionally if nothing else??
    I think it helped me and I continue to do it, each time thinking how stupid what I am doing is... (who knows???)

    Sounds like you are headed in the right direction too! Im here cheering for you! :)

    Michelle
  10. m1she11e

    m1she11e Senior Member

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    I am sleeping a lot better since taking the Progesterone. It really is amazing all of the ways hormones affect each other.
    I have tried pregnenolone in the past and again recently. I didnt notice any kind of a difference but have still been researching.
  11. jeffrez

    jeffrez Senior Member

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    jenbooks likes this.
  12. jeffrez

    jeffrez Senior Member

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    I definitely will look for a better tent if this trial run works out. I have an old Eureka Timberline tent that's fantastic, but even after 15 years it still smells outrageously, rendering it completely unusable. They must load those things with all kinds of chemical cocktails of flame retardant/mothproofing, etc. Can't imagine what the brand new ones would be like.

    This screen tent barely smells, it's big enough to stretch out totally for sleeping, and it literally sets itself up - it comes folded up in a kind of a disc-shape, and you just basically let go of it and it pops up completely open and ready to be staked down. To store it, you just fold it together and back into the disc shape. Takes literally less than a minute. Seems perfect for a test run.

    I have a tarp I used with the Eureka for the ground, and another one to string over the top of this one to protect from rain. The thing I'm actually most worried about is excessive pollens, but since getting my amalgams removed, that's been less of an issue. I usually sleep with the windows open in the spring/summer anyway.

    Anyway, not to hijack the thread, but thought it would fit in to the idea of getting out of any potential mold. My house is around 20 yrs old and mostly offgassed by now, so it's just the mold I've been concerned about. Not expecting miracles, but who knows! Thanks for the suggestions - no eating in the tent, new rule! :- )
    m1she11e and jenbooks like this.
  13. jenbooks

    jenbooks Guest

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    I should add, Jeffrez, that you don't want to use a tarp or anything stored in, say, your basement, IF you are trying to see if you have a mold issue. Also don't pitch the tent too close tot he house. Get a new tarp at walmart or somewhere. For under the tent and over the tent. And for sleeping, get a new thermarest or kelty inflatable mat, or REI--they make a 3.5 inch self inflating mat that is really comfy. And as I said, keep some clothes just for the tent, same with sheet or blanket (NEW stuff). The point being, if by some chance you had a significant mold issue, the spore fragments and toxins will be in all the stuff from the house, and then you wouldn't really detox enough to know.
    jeffrez likes this.
  14. jeffrez

    jeffrez Senior Member

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    Awesome video, Jen! That was really my idea exactly. Just a sleeping space, bring the laptop/kindle, maybe run an extension cord for a small ceramic space heater in the colder months. The tarp I got for overhead is brand new, just $20 8x10 and some paracord to set it up with. The one for underneath has been stored in the Eureka bag all these years, and is clean as a whistle.

    I'm going to hang up that Eureka tent in the garage for a few years, hopefully that should get it offgassed. I wasn't even thinking, and just left it rolled up in the bag for years when it could have been offgassing, argh. Eventually maybe it'll be usable, though, or else just try to find one with fewer chemicals, if they exist.

    When I was researching all this, I found this page pretty informative:
    http://www.eiwellspring.org/SaferCampingEquipment.htm

    That author says a couple years from the garage rafters seemed to do the trick.

    Even if there's no mold issue, I think it's probably better to just sleep outside anyway. It's going to be wild, lol, can't wait. : D
    jenbooks likes this.
  15. Marg

    Marg Senior Member

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    .

    When I was tested to see what my hormones were up to, I imagined I would be estrogen dominant. (That was a popular diagnosis, promoted by John Lee's books back in the 90s.) As it turned out, I really needed some estrogen. I've used the compounded bio-identical kind for 2 years, but it hasn't made a big difference.
  16. Marg

    Marg Senior Member

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    That one got away from me.

    I wanted to say that I thought I would be estrogen dominant and I was quite low. I do not see any improvement though from that. I am feeling better and I think that lymphathic drainage is getting the lymph moving. I am still on Acyclovior and do not feel flu like at all. I also take equilibrant. I still have leg pain and weakness but it comes and goes. I overnighted blood for testing and have an appointment in Miami May 22. So, we will see what improvement there is. I am doing everything in he house worked in the garage the other day. I was so tired after I expected PEM but I was fine the next day.This is my 4 year of my second bout..I had an eight year remision. I will know this time not to think I am superwoman.
  17. jeffrez

    jeffrez Senior Member

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    Thinking maybe we should have an ME/CFS/MCS camping thread, with videos, camping tips, supply suggestions, anti-mold recommendations, etc. I'm going to bed now, but I'll make one tomorrow if I don't find one already.
  18. m1she11e

    m1she11e Senior Member

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    As much as I think we need to do all we can to keep toxins from entering our body (would really love a bubble to live in...), I think that trying to detox as much as possible is SO important. I know that is what the whole meth protocol is about and there are a million others. I think several of our detox pathways may be shut down or partially blocked.

    I had an interesting little experience the other day...I was about day 10 into my never ending cold and was just about over the set back. My daughter came over because I have purchased a professional body wrap system that I plan to start using in the spa on my clients. The wrap I have started with is called Bioslimming. (No, Im not selling products, no multi level here) Anyway, after wrapping my daughter, I slathered what was left on myself and wrapped myself. The wrap does help the fat cells dump fatty acids but beyond that is really gets the lymph system moving and even helps remove lactic acid. Lactic acid in particular has come up as a problem for CFS'ers.

    So, after I finished the whole process I felt horrible. I was weak and nauseated and thought I probably got to much junk going in my body and was now going to pay the price. After about a half an hour of resting, I gently started to move around attempting to pick up the mess I had made. I was also downing water to help flush out my system. My plan was to just do a little and pass out when I needed to. Oddly, I kept getting more and more energy. Usually when I feel that awful, I am done for the day. I cleaned the whole darned house. Baseboards and all!! Yikes!

    There is another company called Milis that I have been interested that sells professional body wraps. They are much more holistic and much more about detoxing over fat loss than the one I am doing now. It requires a 2 day training. Hopefully I will attend in June and start doing that one as well. The lady who owns that company claims to have gotten over Fibro and they even have a Fibro (CFS) protocol. They add Candida supplements and internal cleansing products to that protocol. Im not saying body wraps are the unfound cure to CFS and FIbro. I am also very aware some wraps are actually bad for you. I do my research so no need to point that out to me.

    Ive done all kinds of detox baths and supplements but this wrap I did really gave me a huge boost in energy. There are take home products too and one in particular helps reduce inflammation in the muscles, helps muscles recovery and again helps rid the body of Lactic acid from working out. Ive been using this one daily and I cant believe how much lighter and less achy my body feels even with working out.

    So, detoxing in every way possible along with trying to live in a healthy environment and putting clean things into our body appears to be the best thing we have going as far as I am concerned.
    chilove and jenbooks like this.

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