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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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Search results

  1. iwantsimple

    Do I need an ME/CFIDS doctor?

    Hi, Flurry. I never found a CFS specialist, and after more testing, it turned out I have Lupus and Antiphospholipid Syndrome, but I can recommend an excellent doctor. Her name is Dr. Karen Hansen-Smith. She is a concierge doctor, meaning you have to pay her 125/mo regardless of insurance. For...
  2. iwantsimple

    Independent Medical Exam? Anyone had one?

    Thank you. I agree, and I'm going to do it now.
  3. iwantsimple

    Independent Medical Exam? Anyone had one?

    I'm beginning my lawyer hunt today. I will actually CALL and speak to a few of them! Let's see what I can find... I will update you all... Thanks for the ideas!
  4. iwantsimple

    Independent Medical Exam? Anyone had one?

    I am no longer employed by the school district, so I no longer pay dues. They only help "paying members." The California teacher's union is EXTREMELY self-serving.
  5. iwantsimple

    Independent Medical Exam? Anyone had one?

    I hope so, too! It's a lifetime benefit, and maybe that's why they are taking so long to make a determination. At any rate, I just want it settled!
  6. iwantsimple

    Independent Medical Exam? Anyone had one?

    I've been scouring the internet for lawyers that deal with public employee retirement systems, and they are hard to find. Did find a few in the Los Angeles area, but do I really want to have to travel? Will they even work with someone from 4 hours away? Guess I need to make a few phone calls...
  7. iwantsimple

    Independent Medical Exam? Anyone had one?

    It's not disability insurance. It's a disability retirement. CalSTRS is the CA teachers retirement system. So I'm applying for disability retirement. I can't find any info online about it. It's like there's no one who has ever gone through the process with them before. Really frustrating. Only...
  8. iwantsimple

    Independent Medical Exam? Anyone had one?

    Hmm...this is a little scary. Mine is for a disability retirement with CalSTRS, so it is different than SSDI. I am worried about how to handle the actual exam. For example, if I am asked to lift my arms over my head, I can do it, but it becomes extremely painful on the way up, and I can't...
  9. iwantsimple

    Independent Medical Exam? Anyone had one?

    I am in the US, and I am 6 months into my claim for a disability retirement. My case worker just told me that they will be sending me to an independent medical examiner. I will have the name/date next week some time. In the meantime, I'm hoping some of you have had to go through this and...
  10. iwantsimple

    Systemic Candida questions...

    Oh, I'm satisfied that the diagnosis is correct. It's a regular doctor, but I've seen the blood test results. I was in the hospital because I developed an inter-abdominal abscess after a hysterectomy. I had a drain and three different antibiotics by iv around the clock for 6 days straight...
  11. iwantsimple

    Systemic Candida questions...

    Why is it htat most people can eat sugar and not have a candida infection, though? I'm trying to figure out why diet matters for some people and not others...
  12. iwantsimple

    Systemic Candida questions...

    What effects has it had on your body? What treatments have you tried?
  13. iwantsimple

    Systemic Candida questions...

    Hi, all! I have been diagnosed with a systemic Candida infection. We have been fighting it for over a year now, but I have a few questions I'm hoping some of you will be able to answer: I have never had a vaginal infection in my life. I'm 39 and have had three children. Never had thrush...
  14. iwantsimple

    Getting my scooter!!!

    I'm so excited! My insurance is going to cover a scooter for me. I can use it both in and out of my house, and it will make getting around so much easier! I'm so excited!
  15. iwantsimple

    My results Fungus in blood

    Yes, when the antibody levels were lower, I had MUCH less joint pain. There was still some (which Doc thinks is permanent damage that the infection has done to my joints), but the constant hollow, aching pain was mostly gone.
  16. iwantsimple

    Candida:The Untold Story

    Does the candida cause the lowered immune system, or does the lowered immune system allow the candida to grow and become a problem? I've been fighting a systemic candida infection for over a year now. I've been through rounds of anti-fungal meds, and even though the infection was gone after...
  17. iwantsimple

    My results Fungus in blood

    I have a chronic candida infection in my blood. Been fighting it for over a year now with a variety of "azole"-type meds. Even though we had it gone for a few months, but then it came back when we stopped meds. Starting new "azole" after Thanksgiving (dont' want to start before because the...
  18. iwantsimple

    Insurance and mobility scooters

    That is exactly the case: good and bad days. On bad days, it is difficult to get to the bathroom because of the pain. Doc says she'll sign off on medical necessity in my home. She wants me off of my feet as much as possible. Less pain, less stress=more energy. So, I'm starting the process...
  19. iwantsimple

    Insurance and mobility scooters

    Has anyone been able to have their insurance pay for a mobility scooter for them? From what I'm reading, you have to need it to be mobile in your own home. I am mobile in my own home, but many days, it is extremely painful to walk from the couch to the bathroom or kitchen. I cannot use a...
  20. iwantsimple

    Bumps on fingers...

    Interesting. I DO get cold sores, and I understand that is the same virus. How frustrating!
  21. iwantsimple

    Rush of warmth in chest?

    Haha! Love the dancing! No, I'm sure it isn't reflux. There's no pain at all. It *feels* like a rush of blood suddenly filling my heart up. Weird, I know!
  22. iwantsimple

    Reasons for autumn relapse?

    It has to have to do with where you live, as well. I'm sure Wales and London are very different in the fall than California or Utah. If it is environmental, then location has to be considered. I haven't had this long enough to see any sort of pattern yet, but I am definitely going to be...
  23. iwantsimple

    Are chilblains common?

    Wow! I don't want that!
  24. iwantsimple

    Are chilblains common?

    What are "chilblains"?
  25. iwantsimple

    Rush of warmth in chest?

    My last weird symptom resonated with so many people, I thought I'd give this one a try, also. :winking: When I'm reclining and I sit up, quite often I will get this very warm feeling in my chest, almost a burning sensation but not painful, that lasts for up to a minute. It is distinct enough...
  26. iwantsimple

    Bumps on fingers...

    Wow! This is unbelievable! I searched the internet for days and couldn't find anything about them, but what you all have described is exactly what I experience! The picture is similar to mine, but like others, I only get them on the SIDES of my fingers, mostly near the joints. They get worse...
  27. iwantsimple

    Bumps on fingers...

    Does anyone else get little bumps on your fingers, near the joints, that itch and hurt (at different times). They come and go and often remind me of cold sores, but without the weeping blisters. The bumps just are hard and sometimes come in small clusters. My doctor called them "stress...
  28. iwantsimple

    Have you had Gastric Bypass Surgery? Need meds help...

    Feel free to ask anything. I'm an open book. I know that my doctor bypassed about 75 cm of bowel. I had a proximal bypass, which is the "shortest" of the bypasses. My stomach was made into a little pouch about the size of an egg. I will read that publication, though. Thanks!
  29. iwantsimple

    Have you had Gastric Bypass Surgery? Need meds help...

    Well, I had RNY 4 years ago, but I only came down with ME/CFIDS 1 year ago, so I can't really answer your question. I'm sorry. I have not noticed any difference in symptoms when I eat less. There are days when I don't eat much at all, or I only drink protein drinks, and I don't notice a...