• 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. panckage

    Study: How Baking Soda helps with mast cell activation, autoimmune and allergies and inflammation

    I'm not sure how unusual this is, but whenever I have tried baking soda it just gives me acid reflux. I mean I have it anyways, but it is basically 100% treated EXCEPT for the periods I've trialed BS and its not just on the days I've taken BS. I thought it was just a coincidence, but this has...
  2. panckage

    Hyperacusys

    hyperacusys has been bad for me when construction has been occurring. When the construction finished it got much better. This has happened twice now
  3. panckage

    ME/CFS Comic Series

    Well a sunlamp will brighten your day :rofl:
  4. panckage

    Alternative Non-Surgical Possibilities for Addressing CCI/AAI or Other Serious Neck Issues

    Unless you are willing to stick a vibrator down your throat :rofl: there is a more powerful and simpler way.... Basically humming. Just get a tuner for your phone (Eg. Noteworthy tuner - the open source one) and hum until it shows 120hz frequency. This will deliver way more energy than an...
  5. panckage

    Should I keep HR low or push it high while exercising with POTS?

    Yes, it takes a while for things to fade back in but I have never fainted. Holding onto something during this period helps but is not necessary
  6. panckage

    Should I keep HR low or push it high while exercising with POTS?

    Personally I haven't found heart rate to mean much. Perceived exertion gives me a much better idea. I can go 20-30min on an exercise bike with minimal resistance. Also I noticed that "going slowly" with POTS just made me weaker and worse mobility. I find it is better to stand up fast, for...
  7. panckage

    Trigeminal neuralgia/occipital neuralgia. How did developing extreme pain develop your cfs?

    I developed migraines and (tmj or TN/ON) headaches after a dental treatment that ruined my bite. I will refrain from commenting about the care I received.... But! I wonder if it could be a similar cause for you. That is, a structural change occurring. Probably not dental in your case but if...
  8. panckage

    This is working for me

    @Darran321 how long do you stay in the cold shower/baths? Also is it a low flow shower head?
  9. panckage

    Cardiopulmonary responses to exercise in an individual with ME/CFS during long-term treatment with intravenous saline: A case study (Davenport 2020)

    I take cold showers which helps POTS symptoms, which i assume works in a similar way . The cold water closes up arteries close to the skin, IOW the arterial volume decreases while the blood volume remains constant. This should have the same effect as increasing blood volume while keeping...
  10. panckage

    Anybody go from steady pem relationship to more up and down?

    I think I have the same thing. I think of it like the surface of the ocean. If it's flat there are no ups and downs. When there are big waves then I have big ups and downs. My ideal functioning seems to be somewhere in the middle. Generating a small amount of PEM helps me rest better in my...
  11. panckage

    Scientists pioneer new method of measuring electricity in cells

    Interesting, so how is this different than the nanoneedle Ron Davis is using to measure voltage?
  12. panckage

    Bruxism and Odd Tension in my Body

    For me bruxism and headaches was due to wearing a mask. I am tall and need to bend a lot to look down. Wearing a mask means I need to bend my neck even more to look down which makes my jaw move out of place. It felt like my jaw was past the point of muscular failure each day. It just got worse...
  13. panckage

    Thermoregulation and body temperature

    Shivering is caused by muscle contractions. Muscle contractions make heat. So if one wants to warm up do some real muscle contractions (eg. Exercise! Not us of course :p) and warm up much quicker. At least that is how I understand it. I am really suspicious that shivering is a reaction that...
  14. panckage

    Thermoregulation and body temperature

    I have temperature regulation issues in general. In the summer I am way too hot. I am sometimes too cold (especially hands and feet when crashing). Often I am both at the same time (core + head feel way too hot and extremities feel too cold o_O). Its very rare that I shiver. Really shivering...
  15. panckage

    Meal replacement?

    That's too bad but if you can handle dairy, milk is practically as good as any meal replacement shake.
  16. panckage

    Finally Found a Treatment...Can Anyone Please Explain This?

    Some sellers on alibaba have ittp. Eg. https://m.alibaba.com/product/62256381601/Pharmaceutical-Raw-Material-Myo-Inositol-Trispyrophosphate.html This is it, isn't it?
  17. panckage

    Meal replacement?

    Not a meal replacement but nuts have lots of calories, milk, a carrot, and jerky (can make a months worth in the oven). I also have the issue that I am intolerant to practically everything so I can't use anything premade. Good luck
  18. panckage

    An Update on the Mestinon Clinical Trial

    Look into Huperzine A. It has has similar action to mestinon.
  19. panckage

    This helps me,,, but why -- [Cold showers/baths]

    @andyguitar ive been doing cold immersion off and on for 9 months now. My mobility is so much better when I do them daily and gets awful when I stop them. It also helps with pain and mood. POTS goes away (I guess because it closes up the outer arteries). I can naturally do some exercise after...
  20. panckage

    POLL: Do You Have a Sacral Dimple on Your Lower Back? (Can be Medically Significant, and May be Linked to ME/CFS)

    Wow that's amazing this might be related. I have always referred to that dimple as the buthole over the buthole :rofl: I have been hypothesizing I may have something like CCI from my hip area. Tetheted cord syndrome sounds like a really good lead.
  21. panckage

    BPC-157

    How has it helped you?
  22. panckage

    BPC-157

    How is the treatment going? How are the side effects? I've been on BPC-157 3 days and have been exhausted and in amplified pain but... as usual... my condition is so variable I can't be sure if it's related yet. I have TB-500 too but I think I better find out the side effects before adding it in.
  23. panckage

    Is neural/limbic retraining (DNRS) a treatment for ME/CFS or not?

    @mbunke Ester Crawley's "research" had CFS patients considered cured even though the scores got worse in the study. That is just the tip of the iceberg. No placebo, no blinding, patients choosing their own trial arm. Conflicts of interest that weren't revealed (study member a consultant for an...
  24. panckage

    Extended Release methylphenidate

    @xebex melatonin works well for to help sleeplessness from methylphenidate. There are studies on this. I remember taking methylphenidate pretty late in the day (for bedtime activities) and then melatonin after. I don't remember having any trouble falling asleep
  25. panckage

    Brain symptoms still getting worse - Losing hope

    Did you ever have PEM like symptoms? I can identify with the symptoms you posted as well as the linked post. My cognition is often very poor. No short term memory. A piece of paper is my short term memory but even if I write a few things down I am still confused and often don't remember what I...
  26. panckage

    Extended Release methylphenidate

    I find the IR works better. It helps me go for a bit but I need rest too. No way I can last for as long as ER lasts and it is kind of hard to rest on it
  27. panckage

    "Why Increasing your Aerobic Power Makes You LESS Efficient" - OutsideOnline

    I'm still trying to find out why "swimming" (mostly just water exercise) is so bad for me. I'm doing the Wim hof cold immersion now and generally having the same type of crashing after a short period. I am investigating whether it is actually my body's response to the cold/cool water (and...
  28. panckage

    BPC-157

    I have decided to give it a try too @Chrisjr19 along with TB-500.The only "legit" dosing schedule I could find is from Tailor Made Compounding https://docs.google.com/viewer?url=https%3A%2F%2Fimcwc.com%2Fwp-content%2Fuploads%2F2019%2F08%2FPeptide-Catalog.pdf Other than that I have only found...
  29. panckage

    Incessant back pain from lying in bed all the time. What to do?

    Is the back pain from deconditioning? If so I've found breathing exercises (specifically Wim hof's) has improved my lying posture and consequently back pain
  30. panckage

    Anyone else: Main Symptom mental fatigue?

    I find Lion's mane give a subtle cognitive boost. It gives me food intolerance symptoms for the first couple weeks but that side effect dies down over time Microdosing helps too. My health behaviors always improve the periods I microdose