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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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Search results

  1. loakley001

    Hair loss/Low blood bp linked to fatigue

    The "remission" wasn't a full in remission. Just enough where I was able to handle some light yoga. But it slowly happened. And then just like that, it was gone!
  2. loakley001

    Hair loss/Low blood bp linked to fatigue

    No kidney problems. Thank goodness.
  3. loakley001

    Hair loss/Low blood bp linked to fatigue

    I take a ton of biotin and B12 suplements. I am not sure about my b1. I have had so many blood tests done, it's hard to keep track I had a few months where I felt good in comparison to the worst days that I have had. But by no means, back to normal. It was good in the sense that I was actually...
  4. loakley001

    Hair loss/Low blood bp linked to fatigue

    I have a similar issue. Massive hair loss since i have gotten sick. It improved during a few months when I was feeling better. And now it's bad again. I also have low bp. 75/51 when feeling ill. My number are good except I'm anemic. But not iron deficient. Still trying to figure where that one...
  5. loakley001

    Anyone tried folic acid for overmethylation?

    Ah ok. Thanks for clarifying. They said I have homozygous for A1298C mutation. Do you have any recommended reputable sites for helping me understand what this means?
  6. loakley001

    Anyone tried folic acid for overmethylation?

    Hey everyone! I by no means have any scientific or medical background. I am a patient of DR Montoya. I just got a letter from his PA that I have this MTHFR gene mutation. And she wants me to take Methylated B12 (methylcobalamin) and Methyl-Folate. My question is.... If this isn't a real thing...
  7. loakley001

    Geographic tongue

    Haha. The things you learn with this disease are endless! :)
  8. loakley001

    Feeling exhausted after bowel movement

    I cut out all grains, sugar, and dairy. I haven't noticed any change. Been on this diet for three months. Although, I lost weight. I am at my pre pubescent weight. Silver lining ;)
  9. loakley001

    Reading on paper vs on screen

  10. loakley001

    Boob.

    I get that. In one nipple. It drives me crazy. Absolutely crazy.
  11. loakley001

    Feeling exhausted after bowel movement

    So I get dizzy, light-headed and short of breath before a bowel movement. I feel like I am crashing, and then I have the sudden urge to go. The symptoms are mostly relieved afterward. Is this totally weird, or do others experience this too?
  12. loakley001

    Do you have crimson crescents?

    Hey all. I may be too late on this post. But from this picture, does it look like I have the CC? My throat has been like this at least for the last 3 months. I also developed geographic tongue and canker sores within the last three months. My body is rebelling. :)
  13. loakley001

    Geographic tongue

    Thank you! I will try this ☺️
  14. loakley001

    Geographic tongue

    Yeah. I have heard that same theory. I too find it curious that it appeared at the same time. For me, it's a bit of a hassle because it actually hurts. But, compared to the other symptoms of ME, it's easy to deal with!
  15. loakley001

    Geographic tongue

    When people refer to intestinal pain--does that mean severe gas pains? I only ask, because I have been experiencing that recently, and could not figure out where it was coming from, since I am on such a strict diet...
  16. loakley001

    Geographic tongue

    Yeah. My dentist doesn't know if it's related. But he said it was an autoimmune disorder that is benign. It just seemed too coincidental that I had a major crash, and this just appeared at the same time. :)
  17. loakley001

    Geographic tongue

    So interesting! I have never had it before now. I have been on an AIP diet since, but nothing seems to help it. :/
  18. loakley001

    Geographic tongue

    hey everyone. I have been lurking for a while, too shy to post. Forgive me if this has already been asked. I have been diagnosed with me/Cfs. During my last crash (about two months ago) I developed geographic tongue. It literally has not gone away since. Does anyone know if this is related...