Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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You want the best road map to manging putting SEID/ME/CFS to sleep on the planet?

Discussion in 'General Treatment' started by Tired of being sick, Jul 6, 2016.

  1. Tired of being sick

    Tired of being sick Senior Member

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    Read then Print a copy of>
    Are Oxygen Starved Tissues Causing Pain and Fatigue in Fibromyalgia and Chronic Fatigue Syndrome (ME/CFS)?
    by Cort Johnson

    Because this is the closest evidence I ever found on the internet that describes EVERYTHING that is wrong with
    The SEID/ME/CFS sufferers period.

    How did I find it? By my own THEORY then Googled (Blood oxygen starved tissues are the root cause of SEID/ME/CFS).

    And this article was right on top of the search page.

    Keep in mind I had this theory for a while now so after I read the article I am now convinced this is as true as it gets.

    You see I have a specialist for everything wrong with me.
    I fought I argued I got kicked out of many or just left these so called Doctors/PCP or specialists offices.

    This is how you have to do it because the truth is none of these Physicians have a clue or care to even step from their limited areas of expertise not because ALL do not want to but because it is against the LAW to
    put 2 and 2 together. How do I knows this? From experience. I do not hesitate for one second to tell a doctor he or she is wrong or ask WHY they won't do as I ask.

    My PCP and I have it out every time I visit my PCP.
    Within hopes of one day I will finally crack my PCP's stubbornness to learn about my "condition" because the TRUTH is this is the PCP's job is to collect all of my Specialist's information and connect the dots but no.The PCP will say I can take care of Diabetes/Blood pressure and illnesses but we all kmnow normal mother could diagnose these common illnesses with her eyes closed.

    Tell me this why do you have to go to school for 8 years or whatever it is to diagnose and treat what "anyone"
    with a blood pressure machine, finger BPM Oxygen meter, thermometer, able to send you blood test labs,MRI machines,X ray machines,CT scans,Tilt table testing you name it..When a person with a room temperature IQ like myself could do this?

    The specialist's do all of their "scope range" of work which is small since there is a specialist for every part of the of the human body!

    But you will never get the one particular specialist to communicate with the other particular specialist. Even if you do the other specific specialist will not listen to a word they say.I know this for a fact from seeing it over and over again with my own two eyes!

    You have got to be your own doctor, otherwise you will not have a snowballs chance in Hell of getting the RIGHT specific treatment that you specifically need.

    I diagnosed every physical thing I have,Then found the specialist to confirm the diagnosis.
    Then I had to fight for the medication I already knew would be the best because most specialist can't even prescribe what you really need because it is out of their "prescribing guidelines"

    I'm going to stop here for now but I will continue to tell my story of every medication I'm on and so forth.

    I am almost there.I believe one more medication and I might be able to function normal enough to work at least 8 hours a day again.However it will be my own business as I can't get fired for missing work as I'll make my own hours as well.

    The last medication I believe I need is an anaobolic steroid called Androxy along with
    Pyruvic acid.

    For now if I were you I would print this article and force feed it to every specialist you have because it WILL connect the dots to every single Specialist you have.Here's the link and the reference is testing that is recorded in the national library of medicine I'll give you both links.

    It is time to put this baby to sleep!



    Are Oxygen Starved Tissues Causing Pain and Fatigue in Fibromyalgia and Chronic Fatigue Syndrome
    ME/CFS)? - Health Rising


    Noninvasive optical characterization of muscle blood flow, oxygenation, and metabolism in women with fibromyalgia. - PubMed - NCBI





    .
     
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  2. wastwater

    wastwater Senior Member

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    Does this thinking have parallels with altitude sickness
     
  3. ukxmrv

    ukxmrv Senior Member

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    the article above by Cort is 3 years old so if you do a search you should already find a thread on the topic
     
    wastwater likes this.
  4. PennyIA

    PennyIA Senior Member

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    I couldn't find the direct thread... but did see some discussion here:

    http://forums.phoenixrising.me/inde...went-up-a-tad-and-sjogrens.23477/#post-359676
    I would argue that having been through a couple of bouts of altitude sickness - that the symptoms might be somewhat similar but by far and away are far milder and resolve fairly quickly with hydration (which obviously isn't a cure for ME/CFS).

    And as was pointed out in the other thread I've linked, that it's not the lack of oxygen to the person or even in their blood... it's the fact that it's not taken up by the muscles that seems to be the breaking point - which is also being discussed in the article above on Fibromyalgia. They bring up two theories related to Mitochondria and oxygen debt.

    If it's mitochondria that are damaged or malfunctioning or functioning at lower levels -that could lead to oxygen debt and slow recovery. And that's a pretty populate place to be looking right now - whether or not it's measurable (biomarker) and then to figure out what might be the root cause (autoimmunity, mold, toxins, methylation, etc).
     
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  5. alex3619

    alex3619 Senior Member

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    This is similar to my own theory circa 1999. My version was later disproved as new science was published. My revised version has never been disproved, but is of much less utility as its only about a specific aspect of pathophysiology.

    I was all about hypoxia and how it might be explained.

    Evidence is growing of some kind of hypoxia, with various (and not just one) mechanisms. However nobody has figured out, yet, how all the pieces fit together. You have to explain metabolic blocks and altered metabolites, microcircular issues, neurological issues, brain stem issues, heart issues, cytokine issues, and more ... its a mess.

    Its important to realize that not all of us do well on supplemental oxygen.
     
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  6. Tired of being sick

    Tired of being sick Senior Member

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    My theory is "PROVED" by my own success all you have to do is read my post history to know how many sicknesses injuries,everything.

    The truth is plain and simple>:SEID/ME/CFS is Vagus nerve dysfunction either through injuries/virus or just your own body pinching it naturally from abnormal placement of body part pinching the nerve.

    Read my diagnoses in my signature then goole each one and Vagus nerve dysfunction and you will find writing on everyone of them including my mental illnesses of ADHD/Asperger's and Major depression of course.I mean who in this world not develop Major Depression with all of my sicknesses!

    How to google this prove theory Example>POTS and Vagus nerve dysfunction.

    I am using POTS because it is a FORM of Dysautonomia.

    If you have SEID/ME/CFS you WILL have some form of Dysautonomia.
    Most SEID/ME/CFS sufferers do not know this because they did not investigate Dysautonomia on their own because you will be lucky as hitting the lottery if you run into a Dr. who can figure this out.

    I strongly believe that this Dysautonomia coexists in ALL SEID/ME/CFS patients.

    I have not read anything yet to prove otherwise.

    But I do know this much. It is very rare for SEID/ME/CFS patients not to have some form of Dysautonomia.


    This blood oxygen trouble is what caused all of my osteo arthritus in everybone/joint in my entire body.
    It also caused my Kienbock's disease(the rarest of the rare)"only 200K+ known cases in the US.
     
  7. Tired of being sick

    Tired of being sick Senior Member

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    The best medications combinded for SEID & Dysautomia especially POTS and pain and arthritis it creates are>
    Adderall/midodrine/Fentany/TramadalGabapentin/Androgel gel/Androxy/Pyruvic acid./vitamin d3/magniesium/claritin D/60 ounces of electrolyte sport drinks or water called propel and 1 gallon of water per day/I do this everyday and am lucky to urinate twice as my body uses 95% of it for what I do not know.
    On top of all of this you must wear compression stalkings with compression pants/compression shorts/compression arm sleeves/ compression neck brace collar all worn together everyday when you are out of bed on your feet.PERIOD.....

    Compression stalkings alone are worthless and It fathoms me to death, why a Dr. any Dr. can not figure this out.

    All your limbs need serious compression especially your quads the largest blood oxygen hogs in your body.
    Your neck needs compression vitally as your brain will age 15 to 20 years ahead of time and my Brain MRI proves it.
    I was 48 years old when I had MRI done and it was normal compared to a 65 to 70 year old man.

    If you have chronic neck pain at base of skull now you know why.

    How many of you have had a brain MRI done lately or ever for that matter?

    Then when you can't go to sleep because your body thinks it's time to work when lying down you will need sleep meds.
    Right now I'm on clonipin and bi pap but the real drug that makes your body get full cycle sleep for building normal muscle mass as we can not on our own is Xyrem...


    All of this combined and you WILL feel "almost" normal........................

    I guarantee you'll at least be able to do regular self maintenance chores EVERYDAY.
     
  8. Tired of being sick

    Tired of being sick Senior Member

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    One more vital ingredient you will need to find a great therapist for on going mental health treatment.

    I have been going weekly since 11/5/13 and it has did wonders for my fight/acceptance, and hope for life itself.
     
  9. Tired of being sick

    Tired of being sick Senior Member

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    Those of you who believe you do not have depression you are only fooling yourselves as a major debilitating illness such as ME/CFS/SEID is going to cause depression and this is fact......
    The reason you do not want to admit to depression is because you believe your doctors will say depression is your primary illness.......

    Who cares what your doctors say, especially if they are ignorant enough to say depression is your primary illness???

    Remember you are managing your illness as you are the expert.
    You are only USING your doctors to prescribe the best medicine for you,which you researched on your own.
     
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  10. ukxmrv

    ukxmrv Senior Member

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    What fact is this?

    Depression doesn't have a reliable test and if one uses the instruments to currently diagnose it then it's not a fact that PWME are going to be positive.

    I've been examined more than once and assessed for depression in circumstances where I don't care what the outcome is. The result has been the same - no depression diagnosed.

    Yes having ME is very hard, but arguing that it always leads to depression doesn't match my experience. I've had other major illnesses and not suffered from depression there either.
     
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  11. PennyIA

    PennyIA Senior Member

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    I'm also skeptical. I get sad, angry and frustrated because of having such a debilitating illness. But I'm not depressed. I've been depressed before. I suffered from severe depression as a teenager. And only recovered after marriage to an abusive husband ended and I realized that if I didn't get a handle on my depression it was going to be such a negative impact to my son's life.

    I've gotten depressed after childbirth (post partum depression).

    But even though I get sad or irritated... angry... frustrated. Being any of those things is NOT THE SAME as suffering from depression.
     
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  12. Valentijn

    Valentijn Senior Member

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    Gee, thanks for the diagnosis, doctor :confused:

    I'm not depressed. And please stop diagnosing people based on your bizarre assumptions.
     
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  13. Jan

    Jan Senior Member

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    I'm not depressed, out of 26 years of illness I have spent approx 6 months suffering from depression caused by a death and falling out with family. So 25.5 years with no depression.
     
  14. hmnr asg

    hmnr asg

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    how would you explain your musculoskeletal symptoms, i.e., "Osteoarthritis throughout entire body/ and chronic SEVERE neck and back pain" in terms of vagus nerve damage? I have nearly same symptoms as you.

    H
     

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