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

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  1. Misfit Toy

    Housing or Section 8, etc in the USA

    Hey, not sure, but I do remember seeing it.
  2. Misfit Toy

    Housing or Section 8, etc in the USA

    @Zebra -yes, it's crazy. It sounds like we have to move somewhere else.
  3. Misfit Toy

    Concerns about Work Accommodation in US

    You may not be on here anymore but I thought I would ask anyway. I am on SSDI so a disability lawyer might be right for me but I don't know. I contacted a special needs trust lawyer. Someone who deals with estates. She is on vacation but you can consult with her for half an hour and ask...
  4. Misfit Toy

    Housing or Section 8, etc in the USA

    Yes, thank you. I did reach out to a lawyer today and will wait to hear back. What surprises me is how few people who are sick are on government assistance. Also, it seems like Phoenix Rising has really died down since 2018. I could be wrong.
  5. Misfit Toy

    Housing or Section 8, etc in the USA

    I am not sure I should do that as I still have an inheritance and I would not qualify. I am not sure how this works.
  6. Misfit Toy

    Housing or Section 8, etc in the USA

    Is anyone in the US on SSDI and on Section 8 housing? I am really sick since Covid, CFS, Sjogrens and I know at some point I will have to go into Government housing. I want to get a head start on how to go about doing it.
  7. Misfit Toy

    Need Guidance

    I have MCAS, Dysautonomia, POTS, Sjogrens, CVID, you name it. What do you do when you have no doctor to tell you what to do? I just called my doctor on emergency and he hates it. He hates when I call. It's not fair. Ever since I had covid, I am not absorbing hormones. None of them. My...
  8. Misfit Toy

    Heavy Metal Detoxing question

    The stuff I am on is like $80 per bottle. Crazy expensive. It's just zeolite and something else but the MD I talked to said it's really high quality. Not sure anymore. I need to get back on it and YES, I have chocolate every....single...day.
  9. Misfit Toy

    Heavy Metal Detoxing question

    I don't do well on glutathione at all. Horrible actually and it has something to do with my mutations. Or 23 and Me test.
  10. Misfit Toy

    Heavy Metal Detoxing question

    Honestly, I have never even heard of chromium.
  11. Misfit Toy

    Heavy Metal Detoxing question

    Yes, I am on zinc now, but nothing about chromium. This doctor does not respond and honestly, I am at a loss on what to do because without her responding, I really don't know.
  12. Misfit Toy

    Heavy Metal Detoxing question

    Were you metal poisoned from the baths? I should have done just a few drops, I agree. The doctor I consulted with said that sometimes doing it slowly makes it worse. Today has been cancelled. I too am in bed. I am so sorry you are also so sick.
  13. Misfit Toy

    Heavy Metal Detoxing question

    I recently had an Oligoscan. It measures heavy metals and minerals in your body. I came back high in cadmium and aluminum. The doctor who wanted me to have the test says that these metals could be causing me all kinds of problems. Who knows. She wants me on a super expensive zeolite. Clear...
  14. Misfit Toy

    Pain Relief for my Fibro/Sjogrens-Finally!

    This was so long ago. I stopped them. they didn't work for long and honestly, the sjogrens was the issue. I am on methotrexate and I LOVE IT!
  15. Misfit Toy

    Link Between Tinnitus and Inflammation

    I developed tinnitus after I had my thyroid removed. A constant buzzing. No clue, but at the same time MCAS started which is inflammation. It's better now that I am on methotrexate for Sjogrens. It's all auto-immune.
  16. Misfit Toy

    Comment by 'Misfit Toy' in 'Jen Brea no longer "has" ME CFS'

    Wow, really? how crazy is that? I honestly wonder...how many of us don't have CFS.
  17. Misfit Toy

    How Do I Get Rid Of A Cold Sore?

    I have wickedly high EBV titers. My doc is always in shock. I am not sure if that causes a cold sore, but when I first had EBV, that was my very first symptom.
  18. Misfit Toy

    How Do I Get Rid Of A Cold Sore?

    I have had a cold sore for over a week on my lip. It hurts, it's disgusting, etc. I am on valtrex and it's done nothing. I mean, it's helped, but not enough. My lip is still bleeding, etc. Does anyone have any thoughts? I know it's much bigger than a cold sore. It's a virus. I am also...
  19. Misfit Toy

    My Lifeline

    It makes me so sad to think of anyone in this situation. The one you need the most is being the biggest "shit" to you. It's not fair. I am so sorry this is happening. Are you unable to go to counseling, for yourself, in this situation? It sounds like you may be too sick to do so. It's...
  20. Misfit Toy

    HOT Flushes finally

    Caffeine makes me nuts. But also stimulates adrenal surges. That is what could be happening. The adrenals then kick out a lot of adrenaline and makes you hyped and over heated.
  21. Misfit Toy

    ME/CF/EBV/EDS/Menopause - carer looking for knowledge.

    I can only say that for me, everything got worse when I went into perimenopause. I started having awful food allergies, was so tired. Like horrible fatigue and my adrenals tanked. I developed pain in full force and then was diagnosed with Sjogrens. There is a correlation between menopause...
  22. Misfit Toy

    In Memory of Purple (Klara)

    I don't remember Kiara, but I am so sorry she has passed and to everyone who had interactions with her. RIP, Kiara.
  23. Misfit Toy

    Bizarre tooth pain that come and goes.

    I have no gaps. It went away....for now!
  24. Misfit Toy

    Bizarre tooth pain that come and goes.

    Mine happens due to having partials and I think the partials are rubbing on the dentin of the tooth. I have partials because my root canals didn't work and I had to have teeth pulled. I wanted a bridge, but I have CVID so my teeth become infected easily. I take really good care of my teeth...
  25. Misfit Toy

    Bizarre tooth pain that come and goes.

    Does anyone else have this weird symptom. My teeth hurt. It feels like a cavity, or a tooth just hurts and then it goes away. Whenever I have an X-ray of it, it comes back fine. does anyone else have this bizarre situation? Right now it's my back molar. It scares me to death.
  26. Misfit Toy

    Low Histamine Chef died.

    It was back in 1994. I had PCOS and for some reason it came back high. My doctor never tested me for a tumor and it's not like that anymore. I have had brain MRI's with no tumor. I am not sure if it would come up with an MRI. I often wonder if I have a brain tumor due to hormones, true story.
  27. Misfit Toy

    What is your lifestyle like?

    My lifestyle is so odd. I have been ill for 29 years. It affected my brain the most and I had fatigue but also full on hormonal issues after EBV. I was able to go to college part time for 10 years, work part time, live on my own and fully function. I am now on 29 years. I have had many...
  28. Misfit Toy

    can IGG make one more sensitive to things?

    I had a rash all over from IGG and also my throat closed up on it but I am a rare bird. I became very reactive to everything. Many do on IGG so you are not alone.
  29. Misfit Toy

    Low Histamine Chef died.

    This is interesting. So, I have PCOS, which is said to come from the adrenals and ovaries. I had high DHEA years ago and testosterone. I had an ovarian wedge to fix it. But my hormones have always been all over the place so this makes a lot of sense. At one time, my prolactin was super high...
  30. Misfit Toy

    Low Histamine Chef died.

    CRH is just another label if you ask me. It's the same thing as histamine intolerance and it may be genetic but what can be done about it? All of these different labels. MCAS and now CRH. I have an auto immune illness that causes MCAS. All of what I just read, it all can be pyroluria, MCAS...