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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. M

    KDM and sleep

    The problem is, end, that there exists currently no reasonable alternative that actually matches the benzos in terms of potency and effect-- so if you are truly having substantial difficulties with prolonged insomnia, can never seem to get more than five to six hours, ect, it becomes one of the...
  2. M

    Progressive SOB, fatigue, tremors, yikes.

    I will have to wait for another window when that SOB occurs-- I have been incredibly fortunate in the past year to say that symptom is much better, but why? No idea. I know what you mean by having zero shortness when anxiety hits-- it truly is staggering that so many physicians can't...
  3. M

    New kind of fatigue for me...

    It could be the disease-- but the mention of feeling adrenaline and a different sensation of the fatigue itself makes me wonder if it could be related to any meds or supplements you are on, even if you haven't changed any of them. Our body after time can grow accustomed to them, causing changes...
  4. M

    KDM and sleep

    Absolutely-- which is why I find them so inherently nasty. You're getting hit with a host of symptoms that can make coming off heroin look like a stroll down a dark alley-- scary, but it ends relatively quickly in relation to benzo hell. So all prescribers should be made very aware of this, but...
  5. M

    KDM and sleep

    It's pretty revealing that at the time of inception of the Benzos, it was thought that they wouldn't cause serious dependence...and then the horror w/d stories started to slowly pour into Psych and Doctor's practices of patients instructed to abruptly come off the drug. And what gets me, is...
  6. M

    All plausible causes of ME

    Triggers are what I wonder about often as we'll; can this one disease have multiple triggers. Looking at this forum, one would have to conclude it to be likely-- the fire can be set in multiple ways. I like what Chia said concerning how he tries to get a detailed history of a patient in the...
  7. M

    My Air Hunger has improved dramatically !!

    Air hunger is never fun, so it's great that the digestive enzymes have made such a dramatic improvement. Ramesses, did you by any chance have a flu-like illness occur which you think could have triggered your symptoms in the first place? Always curious about the onsets in those who have...
  8. M

    How the government bought off the advocacy movement

    I have to agree with this- nature is inherently complex, making the propensity for problems great, and some of those problems themselves will be exceedingly complex. So because nature itself is not beholden to whatever the current medical/scientific understanding is, it should not be surprising...
  9. M

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    I never knew how 'slouchy' it looked until I saw myself in pictures-- looking at it, it is so blindingly obvious that is naturally what our bodies want, even if we're not aware of it in the moment. Who would guess one of our biggest nemesis would be right angles and standing still.
  10. M

    Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

    Walking slowly for me is far better than standing-- even if I am sitting in a chair that is too close to a ninety degree angle, I'll feel it after an hour, and then feel weak, almost the way people with hypoglycemia explain their symptoms before an attack. Also I'm opposite of stretchy veins--...
  11. M

    FULL Autonomic Profile results back; ANY THOUGHTS FROM ANYONE?

    Voner, My post-viral dysbiosis was so bad, that it mimicked almost all of the hallmark cases of CFS. I got incredibly lucky, found a forum that dealt specifically with gut, and a member there said to try some pro bacteria. Bought some yogurt, and felt 50 percent better. After a week, I was back...
  12. M

    Symptoms, Non-Cog

    Any cognitive problems I think I have, are fleeting, and due to poor sleep. Not nearly to the level of the M.E. camp though, who seems to hit much harder with this key symptom. I have looked for a lot of other possible diagnoses, but still feel the more general CFS applies to me, and I know...
  13. M

    Symptoms, Non-Cog

    Couldn't think of a good name for the thread: I was curious, for those of us who have been at least currently spared from the cognitive, ala brain-fog issues often found in the disease, what are the rest of your symptoms? Was curious after reading so many threads recenty on all the...
  14. M

    Benzos

    It's difficult to comprehend for many just how easily addictive these drugs can be-- but that doesn't change the fact that they are. And yes, it's not the tolerance that's so bad, it's all the withdrawl symptoms that can go along with it. I mentioned this to my doctor whose jaw was gaping...
  15. M

    Benzodiazepine Withdrawal and Tapering

    For some reason, Klonopin became the weapon of choice among the anti-seizures. However, Temazepam withdrawal can have all the same effects, as well. It actually has a higher kill-rate than the other benzos do regarding withdrawal, with a slightly higher chance of going into seizures. You don't...
  16. M

    Benzos

    Temazepam is what I'm on now. If I had half a brain (make that a quarter) I would have read up on it sooner after my Doc prescribed it, and been far more limited with its use. Mentioned I had some insomnia with RLS and he prescribed it in a heartbeat. Now I do have some dependency on it, and...
  17. M

    Improve when I get a virus? Ideas anyone?

    Hi Esperanza, I made a thread a few weeks ago on this, but involving Colds-- some forum members also seem to agree that there is something to this, and I'm currently trying to piece some of the puzzle together myself to try and see if I could find any more research on this, though I doubt...
  18. M

    Frequent Waking Thread

    Thanks for the posts-- I'm glad both of you are not on sleep meds; I mentioned to my doc that I think part of the reason I may wake is because of limb movement, and within moments he wrote me a prescription for Restoril. I asked if I could continue taking it as months went by, and he said it...
  19. M

    Frequent Waking Thread

    Hey guys, I wanted to start a thread specifically for those whose sleep problems are connected with frequent waking at night (could be several times or more) and what has helped those who are dealing with this problem, especially if it is chronic. Also, for those who became Dependent on Benzos...
  20. M

    Brain Fog vs. Cognitive Clarity in Dreams

    I agree that that sleep ends up really being one of, if not the biggest Cfs links-- time and again we read these reports of either sleeping far too much, or little. And like the fatigue, it's chronic-- I hear of people getting a lot back, but sleep ends up being one of those things that's...
  21. M

    Dr Myhill publishes second paper

    John, Did anything come of your dental appointment? I got root work done three months before my symptoms started to hit. I think I got a possible dental infection as well some time ago because of tooth pain with a fever, but nothing was found on X-ray. Would hate to have the canal removed if it...
  22. M

    Vitamin D and calcium

    It's interesting that a recurrent number I hear is "10"-- I dunno if it's a rounded off point in the test, but I was on an endocrine forum a while back, and a lot of people would come back saying they were deficient, at a level of 10. I wish I could remember what lab they were using. D is one...
  23. M

    Adrenal Fatigue: A Possible Element of ME/CFS?

    I also wonder, did Rich ever get to do tests on normal, non-CFS patients in relation with those who have CFS concerning the Methylation block? Wanted to know the ratio of the block and severity of it in relation with 'healthy' people.
  24. M

    Adrenal Fatigue: A Possible Element of ME/CFS?

    Also a big problem is that we technically don't have experts solely on fatigue itself-- there are so many causes, yet experts on what create it are pretty nonexistent; I mean, many know the basic ones- cardiac, pulmonary, anemia, ect. But one can't help but wonder how many in the CFS boat are...
  25. M

    Does anyone else have chronic pain at base of skull and neck?

    X, did he (Cheney) ever elaborate air hunger? One of the big mysteries to me, is how you can have people who crash after exertion, but just feel really "tired", but with no SOB. And then you have people like us, and with me, I won't be even close to a crash, and still get SOB at seemingly...
  26. M

    Antidepressants

    Concerning the cortisol/noradrenaline aspect, I started a thread about colds the other day; I was amazed at how a few others also reported feeling really good when under a cold virus. We were trying to throw some theories around as to why this may be, and I wondered if the primary reason was...
  27. M

    The Role of Cortisol in Sleep

    Ha! A mugshot-- ya know, just in case you kick the bucket looking like Jim Carey from "Batman Forever". I rarely sleep before midnight as well. My doc wanted me in bed by 10 and no later. You would think while they are taking that urine, they would want neurotransmitter levels. Nah, they just...
  28. M

    What Is Your Body Temperature? Rethinking 98.6

    That's right Xk-- the word "causal" has been haunting us for a long time now. Oh, lots of theories concerning the causality of the disease, but we really yet have a very good picture do we? As I told Sherlock, I even heard of a guy whose CFS specialist felt after the two decades he saw patients...
  29. M

    Colds and Symptoms

    I guess the big question for us then is..what are the mechanisms involved giving us this temporary respite. Its strange, because I almost feel awake to the point of being on a stimulant with them...the downside is feeling almost to the point of being hyper, making sleep difficult.
  30. M

    Colds and Symptoms

    So, still trying to figure out for sure if I fit CFS criteria, when I noticed I got a small cold the other day, and felt I had some more energy-- this happen to anyone else? It's almost like I had more adrenaline maybe. This seemed odd to me, wanted to know if it's pretty normal, considering how...