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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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  1. overtheedge

    Phenibut - Is it corrosive like GHB?

    https://psychonautwiki.org/wiki/Gabapentinoids
  2. overtheedge

    How to Lay Down and Watch TV sans Neck Pain?

    put laptop on one side or other in bed and lie on side to watch just be careful if you have an older harddrive, one with a disk, they can be harmed by being quickly rotated, go slow. also dont let laptop fall over onto ground
  3. overtheedge

    Brainstem volume changes in myalgic encephalomyelitis/chronic fatigue syndrome and long COVID patients (Thapaliya et al, 2023)

    According to the book Behave: The biology of humans at our best and worst Lawmakers in Washington DC started taking PTSD much more seriously as a disease after it was found that veterans with ptsd had their hippocampus shrunken by the condition as well as changes in the size of the amygdala
  4. overtheedge

    ME/CFS Outreach to ARPA-H

    I hope one of the mecfs advocacy organizations is working on ARPA-H Seems like non-mecfs activism organizations I've signed up for send me emails every month or two asking me to send emails, often prewritten ones, to influence people from the government or some other type of organization but...
  5. overtheedge

    Is your worst fatigue in the morning too?

    I'm best in morn, slowly worse over day
  6. overtheedge

    Main Headline on CNBC: Long Covid $3.7 Trillion Impact

    Seems crazy so many patients and researchers around here celebrating Long Covid getting 1.15 billion from the government when that's far less than one tenth of one percent of what this disease will cost if it goes untreated. I get that it's more than CFS ever got and it's having some benefits...
  7. overtheedge

    What has helped you with sleep/insomnia - post links

    Dayvigo(limborexant) is the main thing i use for sleep anymore. Get them from the telehealth doctor I see at the sleep center i did my sleep study at Since they are a newish sleep drug they cost a lot, with insurance its 30 bucks fr 20 of em but i use mortar n pestle to break em into pieces then...
  8. overtheedge

    HR surges after meals - blood sugar or MCAS?

    if i eat meals w sodium over 20%, several grams of saturated fat, high fat or high calorie my hr goes high fr several hours, it could be something like that in the food
  9. overtheedge

    NAC (N-acetyl cysteine) dramatically improves my symptoms of thirst, dehydration and frequent urination

    I get excessively thirsty and experience frequent urination if i dont eat enough meat. no matter how much other food i eat these symptoms wont stop unless sufficient quantities of meat are eaten. back when my health was better than it is now it used to only happen when i would really overdo...
  10. overtheedge

    Is thirst a thing for us?

    I get excessively thirsty and experience frequent urination if i dont eat enough meat. no matter how much other food i eat these symptoms wont stop unless sufficient quantities of meat are eaten. back when my health was better than it is now it used to only happen when i would really overdo...
  11. overtheedge

    Low Dose Naltrexone is the treatment I hear the most positive stuff about among PWMEs. Need some questions answered by those who have used it

    So I went ahead and bought some through the source you guys above recommended, agelessrx.com and it should be here in a few days if anyone else goes with them just know most of their emails are being sent to the promotions section of my email which i almost never check, if i hadn't been looking...
  12. overtheedge

    Is there any major research/treatment/funding update to be hopeful about?

    This site https://www.healthrising.org/ posts promising new stuff all the time, I check it every few days, haven't noticed any massive funding improvements but there are developments to be hopeful for such as this https://www.healthrising.org/blog/2022/05/06/nath-intramural-study-exercise/ which...
  13. overtheedge

    Low Dose Naltrexone is the treatment I hear the most positive stuff about among PWMEs. Need some questions answered by those who have used it

    i'd like to try some LDN but don't know where i should go for it My health is in a rather bad state lately so traveling to a doctor would be difficult. Has anyone here worked with an online doctor who can get them LDN anywhere in the USA? Also I'm reading about LDN in general online but if...
  14. overtheedge

    Does anybody know a "helpful" online dr that can prescribe basically antything?

    Hey op, have you seen this? https://forums.phoenixrising.me/threads/tips-for-finding-reliable-and-trustworthy-prescription-free-online-pharmacies.8113/
  15. overtheedge

    Sign here to support legislation that will make CFS much harder to ignore

    Just checked and the link is still active so if you haven't signed this legislation you still have time you can also sign up to get emailed from Solve M.E. when they have other projects that need the prewritten letters sent/petitions signed/etc...
  16. overtheedge

    Sign here to support legislation that will make CFS much harder to ignore

    Solve M.E. emailed me this today Here's the link, go there to send a prewritten letter in support of the act https://p2a.co/i5SZHd5 you can also sign up to get emailed from Solve M.E. when they have other projects that need the prewritten letters sent/petitions signed/etc...
  17. overtheedge

    Night Pain

    Chiropractor fixed up my spine pain. have them do some xrays and evaluate your spine so they know what you're dealing with but a lot of what my chiro does is bend the spine side to side hard causing many small snapping noises in the spine. he also uses a TENS machine and big ice packs to reduce...
  18. overtheedge

    #MEAction: Sign This Letter To The Surgeon General

    This is the only mecfs forum I'm on so if anyone has accounts on other MECFS online forums like healthrising, the facebook group, etc. and there aren't any posts about this going around on those sites you could probably generate a respectable number of signatures by creating one
  19. overtheedge

    #MEAction: Sign This Letter To The Surgeon General

    Go to this link to sign https://act.meaction.net/page/29113/petition/1?mc_cid=e043942509&mc_eid=1b9c20dedb Please sign community letter to United States Surgeon General- Dr. Vivek Murthy #MEAction is asking you to sign onto a community letter to Dr. Murthy to request that he do at least one of...
  20. overtheedge

    Copper Deficiency or Copper Toxicity? Need some expertise...

    I did have a test for copper a long time ago before i started really looking after my records, it was either urine or blood, whatever came back showed regular copper, i think i had ceruloplasmin tested as well and that came back normal My bad, my copper really was high on the hair test rather...
  21. overtheedge

    Copper Deficiency or Copper Toxicity? Need some expertise...

    I had high copper on hair mineral analysis for years, maybe 7 tests in a row came up extremely high in copper and none low, then i tried staying at our familys other house for a few months, no symptom changes but the copper was normal on hair mineral analysis i sent out before returning to my...
  22. overtheedge

    Five ways to reduce your ME/CFS "wired but tired" hyperaroused brain state

    @Hoosierfans I tried a number of GABA meds a few months back but not for very long as i dont have anxiety and they didn't seem to do anything for my energy levels and I wanted to move on to things that had a chance of improving my overall condition. The GABA meds did make me feel good and...
  23. overtheedge

    Pale Stool and Bile Salts

    @bread. I'm still trying to fix it done a bunch of different sibo treatments and can get the hydrogen down but the methane always stays around 8 r higher which from a lot of what ive read 3-9 reading on methane can be quite symptomatic. Treating with xifaxan plus neomycin improved my overall...
  24. overtheedge

    Five ways to reduce your ME/CFS "wired but tired" hyperaroused brain state

    Thanks for that @Hip Open medicine foundation linked to this a few weeks ago in one of their email updates and i thought it might be of interest to you since it contains a list of possible conditions that can resemble CFS...
  25. overtheedge

    Five ways to reduce your ME/CFS "wired but tired" hyperaroused brain state

    @Hip You mentioned in the first post of this thread that gaba supplements can lead to tolerance and withdrawal, which ones should be watched out for? In the near future I'm planning to test out the following supplements for their ability to induce relaxation, are any of them problematic...
  26. overtheedge

    Grrr...Wake-up Nightly in a Hypervigilant State

    a medical professional told me not long ago that sleep apnea often causes people t wake up with their heart pounding, has something to do with the adrenaline released to wake the person from sleep because oxygen is dangerously low, I have this too, is especially bad when i sleep on my side with...
  27. overtheedge

    Crash after taking ALA

    @Ronagrenade2020 ala made me feel better but messed up my health and, if i remember correctly, made my insomnia worse as well. I think the reason has to do with the powder in the capsules being irritating to the gut lining. seems like any pills i empty into my mouth which then cause burning...
  28. overtheedge

    Rep. Raskin Leads First Ever Legislation for ME/CFS Research Funding

    just got an email from them so maybe this time it worked, time will tell
  29. overtheedge

    Sleep Poll

    lack of sleep makes my symptoms way worse and the worse my symptoms are the harder it is to get good sleep
  30. overtheedge

    Rep. Raskin Leads First Ever Legislation for ME/CFS Research Funding

    Is anyone else not getting notifications from Solve ME/CFS initiative? I've signed up with them several times but never get anything in my email, I've checked spam folders and all the nooks and crannies of my email account too. I'm gonna send them a message but im wondering if this is a...