• Welcome to Phoenix Rising!

    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. warriorseekspeace

    FROM MOOD DISORDERS TO MCS: A NEUROINFLAMMATORY MODEL

    Yes, yes, yes! Thanks to all so much. OK. I am on right track. Have all of the above in cabinet, and/or was taking on/off. Now am going to water therapy then back injections; will reply more later; so grateful! P.S. Is there any reason NOT to take the NAC until after the last amalgam is...
  2. warriorseekspeace

    FROM MOOD DISORDERS TO MCS: A NEUROINFLAMMATORY MODEL

    Please, Marco, and AB, if you know anything that might help me. My brain is going quickly. I think what you wrote about astrocyte swelling resonates with me. Are there glutamate inhibitors I can take?? My muscles are not tense however, rather, my core/ spinal muscles are very weak and low tone...
  3. warriorseekspeace

    Prolotherapy - for the joint pain in ME/CFS, Ehlers-Danlos and others?

    So sorry, Lotus, to hear about the disappointing experience with treatment of your hands and feet. Thanks for sharing that, and about the hip and knee. I am lucky I do not have as much problems with the distal joints. I am thinking there must be some sort of unrecognized form which involves...
  4. warriorseekspeace

    Prolotherapy - for the joint pain in ME/CFS, Ehlers-Danlos and others?

    I am scheduled for prolo of the lumbar spine tomorrow. I am scared. Can anyone think of any questions I want to ask the doctor? I know I want to ask if he will target specific ligaments at the bony junction, rather than just generally sticking the stuff all over in the soft tissue (this is how...
  5. warriorseekspeace

    Update on Alex3619: in hospital but doing well

    I am largely Scottish on my mother's side, too, in remote history, I'm told. But on my father's side (don't know him well) supposedly Irish, although that could be also "Scots Irish." I recently (two months ago) found out my father also had glandular fever when he was in his early twenties in...
  6. warriorseekspeace

    back pain and immune system or inflammation

    well just spent another half hour cleaning up and editing and clarifying that post and lost long long good post i give up yes, my point was that i am in pem when the spine starts to feel it is collapsing and also i think i was in pem and hence had decreased endurance first and foremost in...
  7. warriorseekspeace

    back pain and immune system or inflammation

    so, xmrv, i guess the point i was thinking of yesterday is that, i think i would not have injured my back at work in the first place, nor have developed so many problems after, had i been able to use the proper core postural support - more an issue of endurance and of coordination of proper...
  8. warriorseekspeace

    back pain and immune system or inflammation

    yes, xmrv, i was constantly in PEM/ PENE, and the last 4 yrs i worked at all, had frequent total collapses into severe fflulike illnesses of many weeks or months (remember i did not know about this illness, only that id never been right since mono). i had been gradually decreasing my hous down...
  9. warriorseekspeace

    back pain and immune system or inflammation

    Regarding back pain, in my case, I have been thinking it is primarily of a mechanical origin. And to go further back to causation, I believe it has to do with decades of overexertion after the time on a daily basis, when my postural, antigravity muscles, were completely fatigued. I believe these...
  10. warriorseekspeace

    Update on Alex3619: in hospital but doing well

    Hi, Alex! Just saw this thread (only on here rarely now). Haven't read it all, but so glad you're back in touch. Good recovery! I wish I could be your PT! WaSP
  11. warriorseekspeace

    The Aviva Community Fund Semi-finals are coming

    Some great work by ME/CFS patients: a couple of easy-to-watch videos about online charity fundraising. Please post to FB, Twitter, and share widely! There is so much at stake in the upcoming Aviva contest that it would be good to show the opportunities to as many people as possible. They are...
  12. warriorseekspeace

    I cannot move my Tongue and Swallowing is difficult

    Hang in there, Andrew. I'm so sorry you're going through this. Glad you're posting about it, as there are many people on here who care about you. What about stopping the medication Kina was talking about which lists your problems among possible side effects for that med? WaSP
  13. warriorseekspeace

    I cannot move my Tongue and Swallowing is difficult

    Good luck, Andrew. It's an awful position to be in to have to do much of the thinking for one's doctor, and feel you must push, when you really aren't sure yourself. At least that's how I felt, when I only had MD's who refused to become properly informed about this illness.
  14. warriorseekspeace

    I cannot move my Tongue and Swallowing is difficult

    I wrote linking her to your post. She is in Oz, so may be later she will wake up and see it. Hang in there. WaSP Also, I too think if you have any sort of doctor, GO! Even possibly ER, although if it is possible, I might not mention the ME/CFS. ? Just invite judgement and discrimination...
  15. warriorseekspeace

    I cannot move my Tongue and Swallowing is difficult

    Oh dear! I wish I could help. This sounds awful for you! All I know, is, it is several of the cranial nerves which are responsible for swallowing, moving the tongue, etc. There is a speech language pathologist who is a patient and member of this forum, whom I will forward your post to right...
  16. warriorseekspeace

    Klimas' clinic tests and results

    Madie, I'm glad you're getting testing and treatment. I don't have alot of time to be on the forum lately, so thanks for the PM. Dr. Rey is great! Best wishes, WaSP
  17. warriorseekspeace

    Chase Contest For ME/CFS Non-profits Has Begun

    I know two people who have links and need bonus votes, if anyone still needs to vote.
  18. warriorseekspeace

    Chase III: Maximizing Your Chase Vote: the Bonus Vote Exchange

    OK. 9/9/12, There is a link for someone who has not yet voted, on the following FB group: "ME (ME/CFS) Fundraising Group" posted by Ray Steele. It is to NIDA, but person can probably search for another group (such as PR) and still give him a bonus vote, or use the first vote for NIDA, and the...
  19. warriorseekspeace

    Chasing the Money: Chase Community Giving Contest to Start Soon

    Hi, Anne. Just to let you know, I got an alert from FB/Chase, that I have a bonus vote. When I click on the link in that alert, it takes me right to a choice to "use bonus vote" for either Phoenix Rising, or NIDA, the two I voted for to begin with. (I haven't used it yet, waiting to see who...
  20. warriorseekspeace

    Chase III: Maximizing Your Chase Vote: the Bonus Vote Exchange

    I was actually given one that night after posting here. Forgot to come back and remove my request.
  21. warriorseekspeace

    Chase III: Maximizing Your Chase Vote: the Bonus Vote Exchange

    I am looking to use someone's link to vote, so they can get a bonus vote. So if someone has not yet gotten a bonus vote, could you please let me know so I can go in through your shared link to vote?
  22. warriorseekspeace

    Chase Contest For ME/CFS Non-profits Has Begun

    I am trying to follow all these different articles and discussions here and on FB. I just posted that I can give someone a bonus vote by going to their link to vote. I posted it in the bonus-vote exchange here...
  23. warriorseekspeace

    Chasing the Money: Chase Community Giving Contest to Start Soon

    Hi. I see on my FB page, the RMCFA is being promoted too. Isn't this going to split the vote? Does anyone have a dialogue going with the people promoting that group? Just wondering before I do my voting.
  24. warriorseekspeace

    Chasing the Money: Chase Community Giving Contest to Start Soon

    Aww, Merry, I'm sorry you hate it. It's just that you seemed to jump right into a leadership role with it. I totally understand wanting to do something that makes a difference, but finding the things involved in doing that repugnant. After having read/ re-read this whole thread on FB today...
  25. warriorseekspeace

    Chasing the Money: Chase Community Giving Contest to Start Soon

    Merry, I just wanted to say it's so delightful how far you've come in the world of internet and facebook operation! I remember when you seemed a little hesitant about it! (And not long before that, I myself was CLUELESS! and also very fearful and suspicious of getting on FaceBook. Now it's...
  26. warriorseekspeace

    Chasing the Money: Chase Community Giving Contest to Start Soon

    I tried the links in Cort's article, to see info about the participating groups, but they all take me to the same page, asking for Chase Bank online acct. info, which I do not have. I have voted in Chase contests before, so I don't know what the problem. I have already "liked" the Chase page...
  27. warriorseekspeace

    Facebook Phobia a CFS issue?

    There is a Chase Giving contest starting tomorrow. Any forum members considering joining FaceBook just to vote, but have questions?
  28. warriorseekspeace

    Pycnogeneol

    I forget why I started Pycnogenol, haha. Something about making the blood cells move around freely. That sounded good to me. I must have heard something else about it first though, which made me look up Pycnogenol. The grape seed extract, I started becuase it helped my Grandma's...
  29. warriorseekspeace

    Pycnogeneol

    Thanks, Alex. Do you have a link to where I might find this? Swanson's has several brands which are all from Pine Bark Extract. I also take grapeseed extract, by the way, which has something called "polyphenols" in it, supposedly, whatever that is. LOL. WaSP
  30. warriorseekspeace

    Pycnogeneol

    I added pycnogenol about 4 months ago, and thought I could tell a notable improvement right away, which has lasted. I didn't know you could get it from grapes, so I take one that comes from Pine Bark extract. I take Swanson's, 100mgs, 90 caps, I think was under 20 bucks, which lasts me 3...