• 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. ahimsa

    Fundraiser for OMF on Sunday, Oct. 5th - 5K Run/Walk in St. Paul, Oregon

    What: 5K Run/Walk to benefit OMF (Open Medicine Foundation) When: Sunday, Oct. 6, 2019 Where: St. Paul Elementary School in St. Paul, Oregon, USA For more details, or to make a donation, go to https://openmedicinefoundation.crowdchange.co/9150
  2. ahimsa

    Study linking CFS/ME to abnormality in blood pressure regulation

    I don't come to this forum very often but I happened to see this thread and thought I could add some helpful info. There's a website called Dysautonomia International that has some helpful descriptions of different types of dysautonomia (POTS is just one kind)...
  3. ahimsa

    NIH still needs patients

    Bump for those who missed this thread earlier
  4. ahimsa

    NIH still needs patients

    Hi @viggster - thanks for answering all those questions! I hope more patients are found who can join the NIH study. Just thought I'd share some links. @Tom Kindlon has tweeted this for those folks on twitter who want to re-tweet and spread the news: And here's the link to the S4me.info...
  5. ahimsa

    Anyone want to be the owner of this group?

    Hi folks, Right now I'm the owner of this small, private group (group name = "Pacific Northwest"). This is a small group (30 members), and there's not much traffic, but it might be a useful resource for someone out there. If anybody wants to become the owner of this group then please let me...
  6. ahimsa

    Embarrassed to use a cane

    @Offset Entity - I'm glad the cane has been helpful for you. I have a folding cane/seat that I use when I need to sit down (due to orthostatic intolerance, dropping blood pressure issues). I also had a bit of an adjustment using it regularly. But I'm so sorry that people are being so intrusive...
  7. ahimsa

    Blood Pressure Going Very High With Almost No Effort

    I'm kind of surprised that 250/100 did not cause the doctor to worry! I hope they are right because I would be a bit concerned. I wish I had something more concrete to add as far as testing or treatment. I'm one of those orthostatic intolerance patients with very low resting blood pressure (I...
  8. ahimsa

    "Unrest" updates

    (line breaks added to make it a bit easier to read) @JenB - Thank you for laying out the goals of this film so clearly that even this brain-fogged patient, someone who knows nothing about public relations or film-making, could understand. My husband and I saw Unrest when it was in Portland...
  9. ahimsa

    Medicare Part D question.

    Glad to hear that, @Misfit Toy For folks who live in other states a list of all State Health Insurance Assistance Programs is here: https://seniorsresourceguide.com/directories/National/SHIP/
  10. ahimsa

    Medicare Part D question.

    What state are you in? For example, in Oregon we have SHIBA, which stands for Senior Health Insurance Benefits Assistance. And in spite of the name :rolleyes: they actually offer help to anyone on Medicare, not just seniors. SHIBA was very helpful to me years ago when I first went on Medicare...
  11. ahimsa

    "Unrest" now on iTunes - review

    Regarding how folks who are not ME patients have reacted to this film, the Rotten Tomatoes website lists several reviews by film critics (e.g., Katie Walsh @ Los Angeles Times, Glenn Kenny @ RogerEbert.com, ...) I'm pretty sure these professional critics are not ME patients. :)...
  12. ahimsa

    "Unrest" updates

    I posted this on twitter yesterday as part of the #TimeForUnrest campaign so I thought I'd share it here:
  13. ahimsa

    Have You Had an EMG Test Done?

    I had an EMG done many years ago. I don't remember which year but it was sometime during those first 1-2 years after I got sick in 1990 so probably 1992. For all I know the test has been modified since then so keep that in mind. In my case EMG testing was done with small probes inserted into...
  14. ahimsa

    "Unrest" updates

    Thanks to @Joh and all the others for posting these updates! Unrest is going to be playing near me - Portland, Oregon - on Wednesday, Oct 4th. I'm planning to see it with my husband. I usually never want to "bother" the folks I know about these kinds of things. I'm not shy, but I do have...
  15. ahimsa

    Suggestions on How to manage organizing pills?

    I use a pill box with compartments that I fill up each morning with all my pills for the day. It's sort of like the one @JaimeS posted but with slightly bigger compartments. I use one of the compartments to hold all my "as needed" pills (over the counter pain killers, migraine meds, etc.)...
  16. ahimsa

    I wish someone had warned me when I first got ME... therapies and treatments

    Yes, that is my understanding, too. But I guess some doctors use these terms differently? I don't claim to be an expert so take my comments with a grain of salt - pun intended! Here's a quote from the Johns Hopkins handout found on the Dysautonomia International website: (PDF file found here -...
  17. ahimsa

    I wish someone had warned me when I first got ME... therapies and treatments

    Re: problems with standing Here's a short video (4 minutes) about POTS (Postural Orthostatic Tachycardia Syndrome): https://www.facebook.com/DysautonomiaInternational/videos/1079102622188616/ Most folks on this thread already know about Orthostatic Intolerance (NMH, POTS, etc) so this is...
  18. ahimsa

    What gives you joy every day?

    I love reading through all the lists of what brings people joy! What brings me joy? So much depends on the day, time, and situation! But here are some thoughts. I enjoy interactions with friends when I am well enough to want company. I'm not 100% housebound so with planning and resting I can...
  19. ahimsa

    What gives you joy every day?

    Oh, what are their names? And I'd love to see photos if you have them. My brother used to have ferrets. He got a male named Rikki (after Rikki-tikki-tavi, yes, I know that was a mongoose not a ferret). And then he got a female and called her Lucy (you know, Ricky and Lucy). What was funny was...
  20. ahimsa

    Thought I'd Share This One...

    @echobravo Thanks for posting that video. I've just watched the first 10 minutes but it seems pretty good so far. I've seen quite a few videos about Orthostatic Intolerance, POTS, NMH, etc. over the years but it's always nice to see a more recent discussion on this subject. Thanks again! PS...
  21. ahimsa

    Unrest screening in Portland, Oregon on Oct. 4th

    I was happy to see that Unrest will be coming to Portland, Oregon. It's going to be on Wednesday, Oct. 4, at 7 PM at the Hollywood Theatre. My husband and I have already bought tickets. I'm pretty excited about it so I thought I'd post a message here for others who live in the Portland area...
  22. ahimsa

    Exercise strategies?

    @alex3619 listed some very important issues above but this comment reminded me of a video (posted below) Yes, I was shocked to hear about the case of a woman with relatively mild version of ME who was trying to train for a marathon. She trained for 6 months, was re-tested, and it turns out...
  23. ahimsa

    Comment by 'ahimsa' in 'Interesting conversation with Mom - Nobody gets it'

    I understand your feelings. Death does not scare me, either. However, don't forget that one possibility of trying a new treatment is that your symptoms might get worse. Death does not scare me but getting a lot worse - having lots more pain or nausea, being unable to get out of bed at all...
  24. ahimsa

    Exercise strategies?

    My primary "exercise strategy" is to avoid it. And then try not to be depressed about it. :( Seriously, my day to day activities are more than enough exertion for me! I'm not severe and in bed all the time (thankfully). But I'm not able to work (not even part time) and I'm just barely able to...
  25. ahimsa

    Looking for information about services in Portland, Oregon

    User @Mij posted this request in the Lifestyle Management forum: If you have any information to share please post a reply on this thread: http://forums.phoenixrising.me/index.php?threads/friend-with-m-e-considering-moving-to-portland.53908/ Thanks!
  26. ahimsa

    POTS and sport drinks, how to use them

    Is there some place online that explains (in a scientific way) more about the "alkalizing effect" ? I tried to search but I have no medical expertise. A lot of what I found looked a bit like pseudo-science but I'm not really the best judge.
  27. ahimsa

    Has anyone had Midodrine make them sedated like a sleeping pill?

    I'm sorry if my post was confusing. That PDF is from Johns Hopkins but I got that link from the Dysautonomia International website. Their home page is here: http://www.dysautonomiainternational.org I have never been to Johns Hopkins nor have I ever met Dr Rowe. I included that link since it is...
  28. ahimsa

    POTS and sport drinks, how to use them

    I bought a bag of it from a local supplement store. But you can also find it online at Amazon and other stores. https://www.amazon.com/NOW-Foods-6925-Dextrose-32-Ounce/dp/B008GQ2JPO
  29. ahimsa

    New thread for new members

    Welcome, @Bander ! I don't have any treatment suggestions but wanted to welcome you to the group :bouquet::heart: I've been sick since 1990 so we've both been sick about the same amount of time. Sadly, I had to stop working in 2000 as my illness got worse. I wish you all the best and hope you...
  30. ahimsa

    Has anyone had Midodrine make them sedated like a sleeping pill?

    Wow, that is a huge change. I think if my blood pressure went up that high while I was reclined then my cardiologist would worry. I see him once per year just to check out my BP and get my midodrine prescription renewed. He measures my BP lying down, sitting and standing. To use a different...