• 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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. P

    Stress triggered my ME/CFS & Need treatment for Sensory Overload

    Haven't been on the forum in a really long time but happened to see this topic. This is a low tech thing ... but a big part of my sensory overload is from sound (especially if I'm PEM'ed). My wife keeps foam ear plugs for me in her purse. Cutting down a lot on the "noise pollution" has helped...
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    Is Medicare Part D (RX plan) worth it for PWC?

    Have you looked into one of the Advantage plans with Rx coverage? The montly premium is more but you might save money in the long run. With these plans, the formulary is usually larger and many generics could be covered at $5.00 for the "doughnut hole" period. If you go go Medicare.gov...
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    I'm freaking out! Juat a little anxiety.....

    I'm waiting to hear on some LTD issues and have a lot of anxiety. I think freaking out is normal. Well ... really ... no one can predict the outcome cause no one is familiar with the specifics of your case. I haven't been thru a hearing since i was approved before that stage. Remember...
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    mycoplasma the cause of cfs?

    Wiki has a good summary of mycoplasma: http://en.wikipedia.org/wiki/Mycoplasma_pneumoniae Like a number of other infections, I don't know that it's "the cause". But like HHV-6, C. pneumoniae, Lyme and other things, it's a drain on the immune system and is probably a "bad actor" in ME/CFS...
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    Testing Negative for Lyme - Could It Be A False Negative?

    False negatives can come from several sources. Often only the ELISA test is done and it is well known to miss many cases of Lyme. A suppressed immune system can make it difficult to produce antibodies that will show up on a Western Blot. Lyme is good at hiding from the immune system because...
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    Comment by 'paclabman' in 'Setting the record straight'

    We're stronger together than we are separately. I read your post to Tia. It's a good thing to put this behind us and move on to things that will help us all. I'm so tired tonite I about can't think straight so I don't know how best to put it - but reaching out to Tia is a class act. Well done.
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    Stanford Chronic Fatigue Initiative Website is Online!

    I really like the broad approach they are taking. I'm especially impressed that they've included Dr. Stratton for Cpn. For a little different slant from the usual "viral onset ME/CFS", here is an article written by a patient advocate on the work he was doing at Vanderbilt. And all the...
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    Should i force myself to exercise?

    If you really want to know where you're at go get tested at U of Pacific with the Stevens Protocol. http://web.pacific.edu/College-of-the-Pacific/Departments-and-Programs/Sport-Sciences/Pacific-Fatigue-Laboratory.html If exercise lowers your anaerobic threshold, then you're playing a...
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    Real estate debacle and living with CFS/ME

    Hi Nancy, I'm Rich and we're trying to sell our house. The market here is soft. There is a lot of stress now not knowing how soon the house will sell and how the ERISA part of disability will go. My wife has a lot of emotional attachment to the house and is taking it all personally. Last...
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    Diagnostic Criteria - can we resolve our community's differences?

    Since no one has brought this up, I guess I'll state the obvious. I'd imagine that the various facets of the insurance/ health care industry would love to see the tightest, most restrictive definition possible. If such criteria were ever sanctioned in any way by any "official" org (talking US...
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    Porphyria

    Have you ever been tested for Chlamydophila pneumoniae? Cpn can mess up your heme, interfere with ATP production, and there are your fatigue and PEM type symptoms. I have both chronic Lyme and Cpn infections. I think we've cleaned them up a lot, and I don't expect eliminating the last of the...
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    Pacing with a Heart Rate Monitor

    With the POTS, that has to be very challenging and frustrating. By unfortunate coincidence my niece also has Lyme and developed severe POTS. When she stands up, her BP totally drops and HR can go to 160 - 180. I wish we could go see them, but due to finances and my health, we haven't been...
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    SSD Hearing (or, how I just became officially disabled)

    For me anyways, it was kind of a good news/ bad news thing. It was really a relief to know that SSDI would be there for financial support and that I wouldn't end up essentially being forced back into a working situation that I couldn't handle - and had totally broken me down. But then there is...
  14. P

    work advice

    Looks like the link is broken now. I did a search to see if i could find a similar reference from her - and I didn't fine one. The info was from Dr Eleanor Stein, a Canadian psychiatrist and ME/CFS researcher.
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    Pacific Fatigue Lab disability testing

    I've been wondering how you were doing and hope that the PEM is really improving.
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    Pacific Fatigue Lab disability testing

    I thought the people at the lab were very supportive and helpful. Sounds like you had the same experience. I also expected the worst ever PEM. It was bad enough, and the noise sensitivity persisted, but not the worst PEM I've ever had. Maybe because of all the rest, and I followed their...
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    work advice

    I came across this some time ago and I think it makes a lot of sense about returning to work. http://fm-cfs.ca/QAStein.html About half way down, there is the question: "Could you offer some guidelines as to when someone with CFS should consider returning to part or full-time work?"...
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    Symptoms After Exercise Poll (PEM)

    Just another observation, but the meds people are on will also influence which PEM symptoms they now think are the worst. When I went down to Stockton for the Stevens tests, they had me stop my pain med and nuvigil. I was not a happy person. Some time back, my Dr thought it was important...
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    Symptoms After Exercise Poll (PEM)

    "general awfulness" is a really good description
  20. P

    Symptoms After Exercise Poll (PEM)

    For me, I'd define fatigue as how you'd feel if someone hooked up an energy pump to you and sucked it all out - you'd end up feeling drained. I used to actually feel like I had flu but without the muscle aches or chills. Now it's more malaise - just not feeling well. Don't know if that...
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    Insomnia

    Which version of insomnia do you have? Can't get to sleep, can't stay asleep, or going in and out of sleep? I never had much trouble getting to sleep. I would sleep 4 - 5 hrs a night and wake up - and couldn't go back to sleep. That went on for a couple of years. I would sometimes take a...
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    Art as therapy :)

    This is great therapy. A chance to learn something new and be creative. We all start out basic and build from there. Plus ... the part of my brain that works with images is in better shape that the part that used to do hard core engineering calcs. I'm not working so this is great. My...
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    Which doctor, preferably in the West?

    I think my Dr. would be a good place to start. Sound's like you need someone who is willing to look at the "big picture". I go to Dr. Marti in Bellevue, Wa. Her primary interest is in ME/CFS and Fibro. She is also experienced with hormone balancing and has learned to look for various...
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    Art as therapy :)

    Digital art is one of the good things that has come from my current condition. I'll have to post more later when I have time. A couple of questions - are the pictures embedded in your post? How did you do it? What is format .jpg? and file size you used - don't want to bog down forum with...
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    Myoclonic jerks!

    Are you on an antidepressant or antiseizure med that's used as a second line antidepressant (I take Lamictal, for example)? Combining tramadol with an antidepressant can cause Serotonin Syndrome which can have serious effects due to too much serotonin.
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    Which doctor, preferably in the West?

    Is Seattle area a possibility for your search?
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    a good servant but harsh master - HRMs

    I thought it would be interesting to see what people have learned from their heart rate monitors (HRMs). There's probably a lot of variablility in the target heart rate people have and that will show up on what they can do. From Pac Fatigue Lab, my HR @ anaerobic threshold is 115. It seemed...
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    Showers are very bad for me

    Let me just throw this out and see if it helps anyone. There are a lot of possibilities here with POTS, OI, and gut issues that I have no experience with. But I recently started wearing a heart rate monitor. This following testing at Pacific Fatigue Lab. One of the things I've learned is...
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    When do you know you are ready to go back to work (full-time)?

    It looks like you're in good physical condition. But I haven't seen it addressed so .... what about the mental and emotional demands/ stress of working? Are you going to do a job that is primarily physical? I worked in engineering for years and there are continual mental/ emtional demands...
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    Pacific Fatigue Lab disability testing

    Nope. It's the aerobic system that is broken. My VO2 at anaerobic threshold was low to begin with and decreased 23% after the second test. There's no way I can improve by using the aerobic system. Reaching AT one day lowers it for the next and causes the PEM symptoms. An easy example (NOT...