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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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  1. maddietod

    Inner Work And Symptom Exacerbation

    In my experience, it's all non-linear. CFS, healing, spiritual growth, emotional healing, PEM. This isn't to say that everything is non-linear. I haven't watched TV for decades because it's always exhausting. But grief, for example, has so many roots and offshoots that one experience can be...
  2. maddietod

    For those of you who are moderate

    I like walking because it gets me into some fresh air. But I call it ambling, never increasing my heart rate. I want to re-condition my leg muscles, and I'm not in a hurry. So I walk partway down the block and back, and some weeks later I notice that I'm walking to the end of the block and...
  3. maddietod

    Nicotine?

    Yes, that's what I did. I folded a 7mg patch in half, and then covered half of that with the thick plastic the patch is on. And then I stuck it on with surgical tape. This worked well, to get a 1.75mg dose.
  4. maddietod

    Help, trialling gabapentin

    I don't think I have restless legs any more. My only in-lab sleep study is over 10 years old. The gabapentin has just about fixed all of my muscle pain, but sleep is getting steadily worse since I started it a week ago. So I don't think pain or RLS is what's waking me up. That's useful...
  5. maddietod

    Help, trialling gabapentin

    My new sleep doctor has me trialling gabapentin. His hope is that it will stop RLS and that will improve sleep. The RLS showed up in an old sleep study, but I haven't noticed it since I started taking magnesium. My doctor hopes to get me up to 300mg/night, so that's his idea of a normal dose...
  6. maddietod

    Comment by 'maddietod' in 'My Transdermal Experiment'

    Voxx life doesn't sell pain patches any more 😕. Kailo looks interesting, but the reviews are a bit contradictory. I'll see how far I can get with my heating pad and passive stretching. I've used binaural beat music (hemi-sync) for decades, but never for pain relief. Thank you for a whole new...
  7. maddietod

    Comment by 'maddietod' in 'My Transdermal Experiment'

    @sunshine44 Have you used the Kailo? @lenora What specially made pain creams have worked for you? I'm working on releasing a frozen shoulder and a knot in my back. I know this isn't the topic of this thread, and also thank you for all of the information, especially about b vitamins and...
  8. maddietod

    "Coat hanger" neck/shoulders pain

    You could also try increasing your magnesium and potassium. These are helping with what presents as a frozen shoulder and this huge knot in my upper back. I also use a heating pad and then a theraband to passively stretch my arm. This is enough to keep the pain from waking me up at night.
  9. maddietod

    Doctor visit blues…don’t know what to do

    This struck me. I don't know if this will help how you think about this, but over time we learn the gradations of not having any energy. Your son is probably not good at this yet. Compared to his old life, he can't do anything, and that is hugely right up in his face all of the time. It will...
  10. maddietod

    Poll about duration of low potassium (or other deficiencies) after b12/folate

    How do you get your mineral levels checked? I recently asked my GP to test, and she changed the subject (and my brain didn't catch up in time to ask again).
  11. maddietod

    Doctor visit blues…don’t know what to do

    I've been thinking about this. GPs have been forced into a corporate/efficient model. I've tried 3 in the past 5 years, and all have kept the focus on what standard bloodwork uncovers. Cholesterol etc. They will give referrals, but the only people in their networks are what you would expect...
  12. maddietod

    Doctor visit blues…don’t know what to do

    Did you get through to Dr. Rowe?
  13. maddietod

    Doctor visit blues…don’t know what to do

    Go to the link to his clinic, above, scroll down to Patient Resources, and it's there. https://www.hopkinsmedicine.org/johns-hopkins-childrens-center/what-we-treat/specialties/adolescent-medicine/chronic-fatigue-syndrome/patient-resources in case embedded links don't make sense to you.
  14. maddietod

    Doctor visit blues…don’t know what to do

    I just looked at Peter Rowe's link to eating low histamine (low-inflammatory). Through trial and error I'm already not eating or restricting almost everything on that list. I'll see what happens when I stop eating cashew yogurt and chocolate every day.
  15. maddietod

    Doctor visit blues…don’t know what to do

    I called his office years ago, to ask if they could recommend anybody for adults, and he answered the phone. He's a very warm and kind man.
  16. maddietod

    Doctor visit blues…don’t know what to do

    I'm very worried by any doctor who doesn't look over the health records of a new CFS patient, and prescribes heavy-hitting medication. A home sleep study is really easy to do, but when I had mine last year I never saw a sleep doctor. The test said 'mild sleep apnea' and a company shipped me...
  17. maddietod

    Doctor visit blues…don’t know what to do

    To see it in the most positive light, nobody had any idea what was going on with CFS, but at least they named it for me and believed what I told them. And still, nobody knows what to do for most of us. Other people on this site know where to find lists of things to test for. Dr. Weiss would...
  18. maddietod

    Doctor visit blues…don’t know what to do

    I saw Dr Teitelbaum when he and I both lived in Annapolis in the 90s. He was kind and attentive but not helpful. Years later I tried Dr. Weiss, who was also kind and attentive but not helpful. He decided I needed estrogen, based on nothing, and that was a terrible idea. I came away feeling...
  19. maddietod

    Single test for over 50 genetic diseases will cut diagnosis from decades to days

    Here's something from last November about this research. It sounds like they have funding for studies over the next 3 and 4 years for specific research areas (like Parkinson's). It doesn't mention further work on a single broader test.
  20. maddietod

    FUNCAP55 Assessing Functional Capacity in ME/CFS

    This is so much better than every other test I've tried. I like that I could skip questions that aren't relevant. This probably skews results, but I like not being forced.
  21. maddietod

    Coffee, cocoa, tea, & mold

    I tried mycotoxin free coffee, and there was no change. The odd thing is that tea is much more problematic than coffee, but my reaction is the same as it is to mold - I go brain dead.
  22. maddietod

    Not Brushing teeth and other self care

    What does this mean?
  23. maddietod

    Anyone Else Find Meditation Greatly Helps Their Condition?

    Yes. Meditation stimulates the parasympathetic nervous system, and has been a part of my strategy to keep all types of stress very very low. It's also a pretty amazing brain-training system, and this process of watching my thoughts has taught me how much of my reality I make up - which parts...
  24. maddietod

    Bad bloatedness and nausea

    Is this a new symptom or is it part of the reason you tried the FMT? If it's chronic, have you explored food allergies and sensitivities, and your gut microbiome? I've spent a lot of time down those rabbit holes, and have gotten a lot of relief. Sadly, it's all so individual....
  25. maddietod

    CLOSED THREAD Firing a home help.. IDEAS please

    One piece of this is that her personality is exhausting for you. Or if that's not exactly true, you could tweak the discussion so it's true enough. It's just a mis-match. Neither of you is doing anything wrong, and also you're going to look for an energy that's easier for you to have in your...
  26. maddietod

    Not Brushing teeth and other self care

    I'm really glad you're here. You're navigating very difficult territory, and you sound amazingly graceful about it, and accepting, and curious. I loved the idea somewhere above of your son finding same-age people living with this, to communicate with. As you say, acceptance first, then...
  27. maddietod

    Not Brushing teeth and other self care

    Oh, sorry, my point wasn't that you should copy my plan. It was more an illustration about how careful I am about where I use my energy, even as a moderate. But also, you mention that your son does take baths sometimes, which from my POV is an enormous energy drain. Lots of use of arms and...
  28. maddietod

    Not Brushing teeth and other self care

    This is very interesting. How well do the sleep and 'body battery' monitors work for you? I'm very curious about how they would determine how much energy I start with.
  29. maddietod

    Not Brushing teeth and other self care

    I'm moderate, not quite housebound, but I gave up showers over a year ago. When I pee in the morning I brush my teeth into the sink that's right there, while the water gets hot. I have a washcloth hanging off the sink (to dry overnight) and I wipe down my face, armpits, and feet. I flush the...
  30. maddietod

    My CFS experience ending with BARD and ChatGPT AI

    Brilliant! I'm in awe. I wish my brain worked this way.