The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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I am having the best day...

Discussion in 'General ME/CFS Discussion' started by TiredBill, Oct 21, 2017.

  1. TiredBill

    TiredBill Senior Member

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    The second day in a row in fact of feeling really well. How strange and unusual (and quite welcome) it feels.

    33 years with this dreaded disease. And less than a handful of days where I've felt as well as I'm feeling today. Yesterday and today I've been enjoying hard-work in the garden for long hours (the weather here in Los Angeles has been perfect) and I've been able to do things I ordinarily wouldn't dream of doing for fear of setting up a crash. But no PEM warning signs at all.

    It is amazing what a refreshing night's sleep will do.

    I'm near tears (of joy) writing this. I needed a taste of feeling "normal" as things had been moving the wrong way for me in the past couple years and I've been struggling lately after some decades where I felt like I'd managed CFS pretty well (all things considered) and was (relatively speaking) one of the success stories.

    Enough thinking. I'm going back outside to do some more planting, weeding, pruning and rock moving.

    A day like today keeps hope alive. I'm relishing the moment.

    Best to all,

    Bill
     
  2. NotThisGuy

    NotThisGuy Senior Member

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    what did you do to get better?
     
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  3. Alvin2

    Alvin2 If humans were rational...

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    Thats incredible. Congratulations :)

    Some advice you don't want to hear though, don't over do it even if you feel you can, some people have found that to bring back the hell of ME/CFS
     
  4. Gingergrrl

    Gingergrrl Senior Member

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    Wow, that is incredible news! What do you attribute the change to?

    I might live in a different part of the city than you but we had a huge windstorm last night and I thought it was going to blow everything off my patio! I'm glad it did not mess up your garden!

    Absolutely and enjoy the moment.
     
  5. lnester7

    lnester7 Seven

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    Do not overdo, let your body use the energy to repair. Then the good days will become more often
     
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  6. Alvin2

    Alvin2 If humans were rational...

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    I had a brain spasm moment (or what ever its called) and thought you said enjoy the enjoyment :woot:
     
  7. TiredBill

    TiredBill Senior Member

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    I'm in Encino. We had winds here too, but not too bad.

    I think what's helping me is (unfortunately) something that would help a small minority of people with CFS. Jumping to the end may same time for those who don't have the energy to read personal journeys.

    Backstory: By the summer of 2016 the debilitating fatigue of this disease was back with a vengeance. I've lived every day with this since 1984. Initially bed-bound. After a few rounds with doctors who were looking at Yuppie Flu--and trying a couple things that made matters worse, and a few visits a Chinese doctor (I had "wiry pulse, don't you know?) for potions and acupuncture (which wasn't unpleasant, but did nothing) I decided to give up on medicine until there was a mechanism discovered that causes this disease. That couldn't take long, right? ;)

    Anyway, I decided the only way to feel better (not "well" mind you, but more able to function) was to eat well, and live well, and do things my body told me were good for me, and to avoid things that were clearly bad.

    So I invented "pacing." I mean, I didn't call it that (and no one else knew I'd invented it) but I understood the concept early. Just like I understood "PEM" from the get-go, despite learning the term only recently.

    I could have a crash provoked so easily. Being around one cigarette could send me to bed for days. No more clubs. I got back to work, but the early years were work then sleep with no much social life in between. As time went by I became less sensitive to things. The night-sweats faded, the inflamed lymph nodes stopped hurting, light stopped feeling painful. Still plenty of fatigue. Never had joint or muscle pain.

    Over years I got good at managing "crash avoidance." I worked, had a pretty good career, found a beautiful partner and married her. We have a wonderful 13-year-old son. I had CFS always, but one of the more manageable cases (if I called it "mild" I'd have to punch myself in the face).

    But in the past couple years what had worked before started to fail. Life became more and more compromised. I was too sick to work. For all the decades I'd paid for good health insurance for my wife and I, as he had hip issues and I knew she'd eventually need a hip replacement and I wanted a great surgeon. But I avoided the doctors. I did not want to get tagged with CFS when I was self-insuring and they had nothing to offer.

    But things changed. We got new insurance through my wife's work. Kaiser, which while a downgrade in some respects (as we can no longer see who every we want) has been insurance I actually felt comfortable using. Kaiser is a non-profit health organization (for those who don't know) where all ones doctors work for the company and all the treatment is on one big campus. Patients pay very small fees for services. To me, it feels like what a national health service might feel like (except this one isn't government run). I like it.No CFS specialists though.

    Sorry I'm digressing so much--but like I said---I'm feeling energetic today.

    So I decided to start pushing to see if there were any other conditions that might be contributing to my fatigue. And there were. The first that I discovered (doctor said nothing) as my testosterone levels were low. 6 points (out of 300) over their minimum threshold of treatment, so we had a battle that I won. TRT helped a lot. But I was still bad. But how had the energy to dig.

    Turns out thyroid was low (again "low normal," but jeepers). Been getting that dialed in over the past year and finally may have hit optimal. Same with Vitamin D and B12. Both low and I started treating.

    It was like if you could look for the most obvious things that might contribute to fatigue, I had all of them. Except sleep apnea--which it turned out I had as well--what a mess :whistle:

    So I started on one of those APAP machines. It was a little weird, but it seemed to help. For a while. And then the therapy started going bad. I started having "Central Apneas" where the brain stops breathing mixed with the regular Obstructive sleep apnea.

    I followed the data and discovered there was a device called an ASV that's designed to treat people with the sort of rare mixed apneas. But the machines are expensive and hard to get prescribed. But I worked the system.

    Anyway, I got the new device a week ago. The second night wasn't bad, but I found myself out of sync witht he setting and have been making adjustments to maximize comfort and therapy. Then, the night before last, I slept. Real sleep. Not CFS trashed out unrefreshing sleep. Amazing!

    Now two night's in a row. I pray it lasts, but I have not had days that were this great in a very (very) long time.

    I still feel my old-pal lurking in the background, but what a difference to sleep soundly. I'm feeling human.

    I'm sorry for the long post. I'm even more sorry that this isn't a universal solution, as I suspect few are additionally compromised with Central Apneas on top of their CFS, as I have been.

    But for those who have sleep apnea issues, I'd recommend a free software called Sleepyhead that allows patients of monitor our own data (these machines are capable of recording amazing details) and if anyone is interested I can point to a forum for help if you PM me.

    I hope I have another great night tonight. Just these couple days have felt like a reprieve when I really need it.

    Best,

    Bill
     
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  8. NotThisGuy

    NotThisGuy Senior Member

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    good for you

    Your testosterone was 306, is this correct?
    was this your first measure of testosterone?
    Any side effects of TRT?
    How is your Cortisol Level?
    Sorry for the questions, but i think you have the energy to answer them :p
     
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  9. Firefly_

    Firefly_ Senior Member

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    Love it when I get good days, just lets me know I’m not irretrievably broken! Got my fingers crossed for you.
     
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  10. TiredBill

    TiredBill Senior Member

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    @NotThisGuy

    Yes, my testosterone was 306 ng/dl, which they called "normal." When I started reading the research I discover that as "normal" only if one was a sick old man. I got an appointment with the Chief of Endocrinology for all of Southern California and this guy tossed me out of his office without taking a history, listening to my symptoms, or discussing the peer-reviewed medical research studies that support TRT in cases like mine. He was cruel, dismissive, and insulted me saying I'd seen too many ads on TV. In fact, I'd seen none.

    I then saw another Endocrinologist who first said no. But faced with a guy in his office who was about to break down into tears, he at least said he'd hear me out. So I presented several papers including two by Dr Swerdloff of UCLA (a leader in the field). It turned out Swerdloff was the mentor to my Endocrinologist.

    My doctor muttered something about "getting into trouble with his superiors, but I'm retiring soon anyway" and he said, "OK Tired Bill, I don't think this is going to do any good, but I'm willing to do a trial." I said, "that's all I can ask for" and gave him a hug.

    I that point I was really (really) low. My fatigue levels were incapacitating. Only the initial 6 months of CFS were worse (and then I was often bed-bound). I was desperate.

    The testosterone injections helped a great deal and rapidly. Faster than usual from what I understand.

    The only downside (at first) was the Endo insisted I get the shots at the medical center, which meant a fairly big dose every two weeks. That protocol resulted in peaks and valleys, neither of which were optimal. But seeing I was a solid citizen and that I was responding well the Endo agreed to let me self-inject and to go it once a week. Once a week was so much better. No ups and downs. No side effects. Just back to feeling I had normal hormone levels. This didn't cure the CFS, but what a huge difference it was removing a co-factor for fatigue.

    It also turned out that one weekly injection kept the numbers right on target using about a 25% smaller dose. At one point early on I actually climbed a little too high by using a half of the original dose, and--surprising to me--I didn't like the feeling. More wasn't better.

    I have never had my Cortisol levels checked. I pushed the Endo into TRT. Then into treating me for low thyroid (when I was low normal). Maybe when he retires shortly I'll have the Cortisol conversation with his replacement?

    Bill
     
    Last edited: Oct 21, 2017
  11. TiredBill

    TiredBill Senior Member

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    Thanks. I'll do the same for you.

    It is amazing what a couple night's of refreshing sleep will do. I think that's been the hardest part of this condition. Never feeling refreshed.

    And your exactly right. A good day gives hope one isn't irreparably broken.

    I find myself looking at the clock and hoping the streak continues.

    Bill
     
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  12. Wayne

    Wayne Senior Member

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    Hi BIll,

    Huge congratulations on your remarkable improvements! And thanks much for your great reporting on your progress. Looking forward to hearing more.

    Best, Wayne
     
  13. TiredBill

    TiredBill Senior Member

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    Thank @Wayne, I will do.

    I only wish this particular fix of using an ASV device was more useful to more people, as I realize dealing with Central Apneas is a fairly narrow condition.

    But I guess if we can find things that help ameliorate problems that contribute to our fatigue (or other symptoms) it is all to the good. And as crappy as I've been feeling lately, I hope it offers others a little hope that things can improve for the better sometimes. Who knows what tomorrow will bring?

    I feel good tonight. Tired in the good sense, where one has worked hard and accomplished something. And sore in a good way, where one knows they used their muscles. And none of the wired-tired aggravated warning-signs that I just set up a crash. All I feel I set up for is the potential for a good night's sleep.

    How strange to feel like a "normal" person. If it never happens again, I supremely enjoyed feeling that sensation on this beautiful day.

    Best,

    Bill
     
  14. Skycloud

    Skycloud Senior Member

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    I'm happy for you, TiredBill, and I truly hope you've turned a corner permanently.
     
  15. TiredBill

    TiredBill Senior Member

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    Thank you. More than I can hope for at this juncture. But it has really been a shot in the arm to experience what feels like "normal" again. CFS with restorative sleep (something I wasn't sure was possible) is way easier for me to handle than what I'm accustomed to (which is waking up unrefreshed).

    I'll check in tomorrow.

    Bill
     
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  16. echobravo

    echobravo Keep searching, the answer is out there

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    If the adrenals churns out excess cortisol (stress of being sick etc) it might affect the output of the other adrenal hormones. And high cortisol is detrimental to health in so many ways..digestion, immune system, tissue regeneration. Dr Myhill recommends testing both cortisol and dhea - spit samples 4 times during one day.

    Wonderful that you had such a blessed day☀️
     
    Last edited: Oct 22, 2017
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  17. Cheesus

    Cheesus Senior Member

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    I am really very pleased to hear of your improvement, @TiredBill!

    Regarding what you said about sleep, I have had two occasions where, on the cusp of sleep, I would suddenly feel something in my body shift - like something in my nervous system suddenly shifted gear. It puts me in mind of when a noisy fan you hadn't previously noticed switches off and silence reigns; a peacefulness washed over me that that I didn't know I was missing.

    On the two occasions that has happened for me, I have had just the most wonderfully restful and restorative sleep I can remember having. The following days, I would wake up not only feeling refreshed, but feeling measurably better.

    Those experiences led me to wonder whether or not part of our disease mechanism revolves around an inability to attain restorative sleep. It could be that by identifying and treating your issue with sleep apnea, you have found a way of breaking the vicious cycle that perpetuates the disease.

    Whatever the case may be, I really hope you can maintain or even improve your current gains!
     
    Last edited: Oct 22, 2017
  18. Wayne

    Wayne Senior Member

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    I think about this more and more these days.
     
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  19. TiredBill

    TiredBill Senior Member

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    Good morning to all!

    I wish I could report another night of miraculously refreshing sleep--but not bad.

    I can feel my little friend lurking today. A better day than usual (relatively speaking), but a day to ramp down the activity level. I don't want to push my luck.

    One thing about my long experience with CFS is that is has been predictably unpredictable.

    @echobravo (and others) I'd be willing to ask for cortisol and dhea tests. Is there a resource that would help me understand these issues better? I have a vague understanding cortisol levels need to be checked over time. Is there one standard test?

    I would not be surprised if I have an issue with cortisol levels, as intuitively I try very hard to decompress and relax as the day draws to a close and tend to fare very poorly when I get wound up with stress in the hour or so before bedtime. When I do get wound up it seems to me I can almost feel stress chemicals unleashed that screw up my sleep and guarantee a day of bad fatigue the next day.

    For me, I feel as though a stress-induced "PEM" (if I dare call it that) triggered by getting wound-up just before bed can be at least as great a concern as too much physical exertion. I wouldn't be surprised one bit is cortisol levels are involved here (but will admit no expertise on the matter).

    Is one's cortisol levels are whacked out, what is to be done? If my intuition is correct, do cortisol levels jump around due to stress triggers? How does one deal with that?

    I'll also need to look more into DHEA. My hormone levels all seemed poor and my very weak understanding of DHEA is that it plays a role in proper hormone production. I need to learn more.

    @Cheesus I love the "noisy fan" analogy and totally relate. It is something one gets used to hearing, and when it goes silent it's strange and wonderful. My fan is on low today.

    I'm convinced that unrefreshing sleep is a huge part of what hammers us so badly. I wonder how many nights of "resfreshing restorative sleep" people have had since getting this disease? In 33 years I have had a handful at best.

    That's where the two night's prior were so unusual. What a profound difference to actually sleep.

    Best to all,

    Bill
     
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  20. echobravo

    echobravo Keep searching, the answer is out there

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    I am also starting to learn about adrenals, after a test with ZRT labs showing high cortisol, low testosteron. It was the analysis from ZRT labs that recommended Cortisol/DHEAS Saliva Test. There is some info here. http://adrenalfatigue.org/saliva-testing-for-adrenal-hormones

    The lab also recommended the book "Adrenal Fatigue: The 21st Century Stress Syndrome",
    https://www.amazon.com/Adrenal-Fatigue-Century-Stress-Syndrome/dp/1890572152

    For a deeper understanding of adrenal hormone regulation check out articles on HPA axis, I havent had a chance to look into it yet. One interesting thing I have read. though, is that the adrenal hormones might also inhibit the thyroid, by causing "reverse T3" (rT3) to be made instead of T3.

    "Wired and tired" is supposed to be a symptom of adrenal issues. Feeling stressed out for nothing, is definitely a big part of my symptoms too. Also have that same challenge of being unable to wind down, somehow, always too tense, almost never really relaxed. I link it to a head injury in my teens (PTSD). Have you had stressors earlier in life that might have caused a sustained output of cortisol, hence keeping your ANS in a more or less constant state of sympatic activation ("fight & flight")? The body needs to be in parasympatic mode ("rest & digest") to recover and rejuvenate, if I understood it correctly. Would not surprised if good sleep is a big part of that...
     
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