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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. L

    Comment by 'lenora' in 'Not Exactly an Emergency / The Beat Heat Manifesto'

    Hi Howard....I thought you had a wooden garage door, but the picture with the window has thrown me. If that's the case, it's a metal door. You can get them without windows (may be cooler, I don't know), and the metal ones are so much better than the wooden ones; cheaper, too. Mind you, I...
    • lenora
    • Blog entry comment
  2. L

    Extremely chapped lips

    Yes, please thank your wife. Sharing the recipe was most kind. I do hope both of you with have big health improvements. Yours, Lenora
  3. L

    ME/CFS Doctors and Specialists

    I agree with @ Blazer95. I've been the victim of multiple diagnoses for years now. One right after the other. OK, my fine and caring neurologist died 4 mos. ago. I still miss him, but I did find a replacement. Not great the first visit, but on my second we established a cordial...
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    Extremely chapped lips

    Hi @Nord....When are you and your wife leaving for your train trip? I hope all will go will and you'll both return ready for a better season. Yes, the changes in weather have been difficult this year. Mine will start as much as 2 days or more in advance, and it's getting tiring and painful...
  5. L

    ME/CFS and the UK Post office scandal.!!

    What is the scandal? I've never heard anything about it. Sorry that you're both affected. Yours, Lenora
  6. L

    Comment by 'lenora' in 'Pray'

    Good news @sunshine44. Doesn't having a kind doctor make all the difference in the world. I encountered great kindness from mine today, also. My third visit, a cardiologist and quite young. Upfront he told me that I have to have another stent (my 8th) and another test to confirm exactly...
    • lenora
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  7. L

    I've been here for 30 years.

    @Booble.....Yes, I try to ignore the way I feel in the morning. Get up and start singing anything happy. It makes me feel better. I seldom get dressed now, but have a lot of caftans, etc., that are pretty looking. With make-up on (little) and a smile, I'm ready to face the day. Of course if...
  8. L

    Landmark Study Confirms Chronic Fatigue Syndrome Is 'Unambiguously Biological'

    Personally, I believe that the mind are body are one. It may not seem it, but it does exist. How can it not? All things considered, we're human beings....there is no major division between mind and body. Whether it's inside or outside influences, we're affected. Some more than others...
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    Comment by 'lenora' in 'Pray'

    You know, one of the times I was in the hospital feeling my worst, a couple of angels really, really helped. One was male and a nurse and he gave me the biggest hug in the world. No, it had nothing to do with sex, but something (anesthetic) had driven me a little crazy and I was screaming and...
    • lenora
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  10. L

    My weird scalp problem

    hi Judee......I also can't wear my hair in an updo or with any bobby pins, clips or anything that may cause irritatiion. It hurts and like you said, it hurts after we've tried to put it up. I'm wondering if alternate hot and cold water may help with some of your pain. It does mine, but of...
  11. L

    My weird scalp problem

    By crowning I mean that you weren't in the proper position to be born. Sometimes even forceps can cause problems. Birth is by no means carefree. In most cases (and please let me stress MOST) things are fine, but it can happen. If your mother is alive, ask her exactly what the problems...
  12. L

    Mast cell activation syndrome is not what it seems

    Just be careful of too much charcoal as it can also absorb anything in its path....meds, vitamins, supplements, etc. I believe that if you wait 45 min. before taking the charcoal and a med, say, that it's enough time to separate the problem. Still, I'd really check it out. I use it very...
  13. L

    Rotating symptoms again..

    I think I'd be inclined to not add anything to what you're taking, slowly stop what you're on and just see what happens to your body. I wouldn't change your diet, but would eat highly nourishing food. No snacking on junk food....your body and mind both need help. Sorry, I don't have any other...
  14. L

    What kind of doctor could help with nervous system disorder?

    Yes, craniosacral therapy is good and should always be gentle. There should be no "clicking of the neck," as there are others ways of gently accomplishing the same thing. It's a gentle therapy done in a quiet environment. It's not as harsh as chiropractic adjustments and while there may be...
  15. L

    My weird scalp problem

    Hi @Dysfunkion.....I wonder if you had damage to your head (nerves) when you were born. Perhaps you didn't crown properly, or there was a new or even incompetent person delivering you. I'm only saying that because you mention that you've had it "for as long as I (you) can remember. Just a...
  16. L

    Comment by 'lenora' in 'Pray'

    Hello Everyone.....Judee, I have a question that I hope you may have the answer for. I'm on meds (and I'm sure others may also be on some) that prohibit the use of grapefruit I did try to find an answer to the questions of whether or not grapefruit seed extract could be used with something...
    • lenora
    • Blog entry comment
  17. L

    Comment by 'lenora' in 'Pray'

    Hello @sunshine44. I'm sorry that you don't have an Advocate per se, but may I suggest that you ask to see a minister, priest, rabbi, whoever happens to be able to come? Tell them your story and see if they can be of help. I'm not saying it will work...but also ask someone from that...
    • lenora
    • Blog entry comment
  18. L

    Thoughts on Suicide — A Dream Experience

    Personally I think those who believe what they've believed since childhood are fortunate, in many ways. I'd like to be that person, but my experiences have led me elsewhere. Still, when all is said and done, it's the music of my childhood, the remembrance of the people involved and some of the...
  19. L

    Thoughts on Suicide — A Dream Experience

    I, for one, am not certain of anything. I was raised in a mainstream religion (well, two of them) and I always loved the "feeling" of those days. I do not go to church today....but I feel strongly that children should be brought up in some religion. Whether they believe it or not is their...
  20. L

    Comment by 'lenora' in 'Pray'

    @sunshine44....It occurred to me that rubbing Vick's into your throat and on your chest may help give you some relief. The fumes are often good for us. If you don't want to do that, perhaps a vaporizer with Vick's liquid may help. I'm truly sorry that you're suffering this way. Yours...
    • lenora
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  21. L

    Comment by 'lenora' in 'Pray'

    Hello @sunshine44.....I'm sorry to hear that you've been having a bad time (worse time) with your health. Of course I'll pray for you. It would be an honor. Yours, Lenora
    • lenora
    • Blog entry comment
  22. L

    Dr Nigel Speight in the ME Global Chronicle : Children with ME taken into custody - part one

    Hello @Treeman.....Yes, there are many sides to the story, too many. @Countrygirl continues this story with additional comments if you move down the "What's New" heading. It's all so complicated. Yours, Lenora
  23. L

    Dr Nigel Speight in the ME Global Chronicle : Children with ME taken into custody - part one

    Hello @Countrygirl....I would like to read more about this subject. I can't imagine having your child taken away, especially if they're ill but I do know it happens. What condition are these children in when they return home? Is there anything on that? And where are they put...with a...
  24. L

    Severe LDN side effects continuing even after stopping the medication?

    Hello@SpinachHands.....I don't really have an answer for you. I guess the only suggestion I would have is to take them to the ER. At least a neurologist could check him out, tell you about LDN and, if possible, give him something to make him sleep. I know you hate to do this and I hate to...
  25. L

    Long Term Sufferers = Low Stomach Acid/SIBO/IMO?

    Hello @bertiedog.....I would go to Earth Clinic Site and look for the vinegar (not white), baking soda and water drink...you may find some relief with it. (Caveat: Don't brush your teeth right away...the acid can cause problems.) I used that years ago and was helped immensely. Follow it up...
  26. L

    Is/was there anyone here who has had cranialcervical surgey?

    I had ACM (Arnold-Chiari Surgery) many years ago. I don't even know if it's being done today. I was fortunate, and found great relief. I never returned to my former self, but a lot of pressure and certain pain was relieved. Lyrica relieves the horrible pain I was in for years, thankfully...
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    Comment by 'lenora' in 'Calculating Infinity / Solving Scenarios / Bedding Down in the Desert'

    I guess that having too much money weighed down both Clint's pockets and smile! (Well, something along those lines). Now we have all sci-fi it seems. Yesterday everything revolved around westerns. There is an all western channel for you really big-into-western folks! Don't ask me what its...
    • lenora
    • Blog entry comment
  28. L

    Comment by 'lenora' in 'Calculating Infinity / Solving Scenarios / Bedding Down in the Desert'

    @Howard....Hello. You're doing your best and I hope to hear of a good pay-off soon (not money, but the other things you need). I'm sorry that your recent ex hasn't been able to find her way. You're right...we each have to want to do it, can't complain and blame others forever, and it takes...
    • lenora
    • Blog entry comment
  29. L

    Comment by 'lenora' in 'Calculating Infinity / Solving Scenarios / Bedding Down in the Desert'

    Good day @Howard. Oh, I'm so glad the mask is still helping you. Sometimes the smallest things can be exactly what we need, and other times a whole arsenal doesn't help. I can't say that I like the idea of you being in the garage (still). Mrs. ex-Howard seems like a really good woman and...
    • lenora
    • Blog entry comment
  30. L

    My son has been sleeping 14 to 16 hrs a day

    @Judee....That yogurt sounds heavenly. I eat a lot of Greek yogurt, but all yogurt is helpful. Yours, Lenora