• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. sickntired771

    Questions about heart rate monitoring

    Thanks that is really helpful and informative. I guess there is no current way to outsmart ME/CFS :(
  2. sickntired771

    Questions about heart rate monitoring

    1. I am generally not exceeding my AT even though I followed the mathematical formula. Does it mean I possibly have a lower AT? 2. Is being close to the AT a problem or anything below is truly safe? Sometimes I feel very exhausted but my numbers aren't in the range but feel like I am overdoing...
  3. sickntired771

    Just got a Fitbit Charge HR - what do I need to know?

    Are you guys concerned at all about trying so hard not to go above the AT? I mean, yes it might preserve our energy but long term is this lack of exercising the heart potentially dangerous in terms of heart disease? I don't know, I know I can't exercise without feeling crappy but I also feel my...
  4. sickntired771

    Just got a Fitbit Charge HR - what do I need to know?

    What do you guys think it is about exceeding a certain heart rate that makes us worse yet healthy people should want to exceed their heart rate to be healthy and keep fit. So bizarre. Also, I don't understand why I am "fat burning" and in exercise zones when I mainly lay around all day. It's...
  5. sickntired771

    Just got a Fitbit Charge HR - what do I need to know?

    Do you find the Fitbit to be higher or lower than your actual HR reading? So far I find it to be lower which I guess is less alarming when I look at the graph. The only thing that is annoying is that I am trying to stay below the heart rate exercise levels yet this thing wants me to kick it...
  6. sickntired771

    Just got a Fitbit Charge HR - what do I need to know?

    In my very preliminary read it seems to be accurate when I am not moving so either resting or standing and not moving. If I am moving it seems it can be off by 15 points which is not good. Just walking my pulse oximeter showed 120 but fitbit showed 95. I am mostly just seeing the average versus...
  7. sickntired771

    Just got a Fitbit Charge HR - what do I need to know?

    I just got a fitbit charge HR and was wondering what I need to know/any settings I should change to make it effective for ME/CFS? Should the heart rate be on continuously or on auto? Can I have it buzz or alert me if I go above my threshold? How do you best track it or use it to know what...
  8. sickntired771

    #MEAction: Keep PACE out of WebMD and HealthDay

    I sent the emails asking them to be removed. I am saying we just get so little publicity for this illness that it is a shame but this isn't the kind of publicity we want anyways.
  9. sickntired771

    #MEAction: Keep PACE out of WebMD and HealthDay

    Done. On one hand I am happy to see an article on CFS on a mainsteam site but I don't like them using BS. Emails sent.
  10. sickntired771

    What should I expect at the disability doctor appointment?

    Thank you Kina this is really helpful to mentally prepare for this. It's crazy because I am honest and really suffering but I am going in there feeling like I am "guilty" because my condition is invisible and I don't think people have any idea of what hell i go through. Is a family member...
  11. sickntired771

    What should I expect at the disability doctor appointment?

    Thanks guys, do you think it would be inappropriate or even "rude" to bring letters from my actual doctors stating my disability to this doctor? I don't want the doctor who knows nothing about me to think I am trying to cloud their judgement or force their decision but I think it would be...
  12. sickntired771

    Do I have Lyme? Do 90% of people with fibro really have Lyme?

    I think that in some people there may be a chronic infection of lyme but for the vast majority of the post-lyme syndrome people I assume it is just another version of fibromyalgia or ME/CFS, just like post-Ebola syndrome is. If you can't find any active problem but you have this collection of...
  13. sickntired771

    What should I expect at the disability doctor appointment?

    I am so anxious about my upcoming appointment with the disability examiner. Will they even understand CFS or listen to my concerns at all. I have no idea how long it will be or what to expect. I feel so nervous. What should I do to prepare?
  14. sickntired771

    Namenda as needed?

    Anyone had success with Namenda? Can I take it as needed for energy like a stimulant or is it an every day thing only?
  15. sickntired771

    TEVA clonazepam--changed formula?

    I just checked and it does have aspartame as the first ingredient :(
  16. sickntired771

    Stimulants that dont effect serotonin?

    It seems like all the stimulants ritalin, adderal, concerta can affect serotonin. I take an antidepressant and don't want to risk serotonin syndrome. Is there any stimulant that won't have any impact or put me at risk for serotonin syndrome?
  17. sickntired771

    TEVA clonazepam--changed formula?

    I take 2 of the .25mg oral dissolving tablet by TEVA and I love it. It tastes sweet like a candy and works really fast because it dissolves in my mouth.
  18. sickntired771

    Kirkman biofilm defense

    I am also interested in learning if this can work against chronic lyme or any other infection.
  19. sickntired771

    CFS a glycolosis problem?

    The difference between this time and the last is that this nutritonist is OK with rice and thats a good carb to replace for wheat. To do it without some carb would be hard but because he is ok with rice i am willing to try.
  20. sickntired771

    How to respond to my doctor...

    Guvaika this thread has a few listed doctors who treat CFS patients in Syracuse. http://forums.prohealth.com/forums/index.php?threads/drs-in-syracuse-ny-area.113943/
  21. sickntired771

    CFS a glycolosis problem?

    My nutritonist said CFS is likely a glycolosis problem and my body is not converting glucose into proper energy long term. He said maybe I get a quick fix from carbs but it doesn't last. He wants me to get my energy from body fat and to use ketones. I am interested in the strategy but have...
  22. sickntired771

    How to respond to my doctor...

    It may be worth calling ahead of time to see what their protocol or thoughts are on ME/CFS to see if you are a good fit for their office. If not, why not try posting your location here and finding out whom others say is a knowledgeable doctor in your area.
  23. sickntired771

    ME/CFS and the Health Information Exchange (HIE)

    I am never signing this release again, I think in my case it can only be used against me. I am knowledgeable and up to date and I am my own #1 doctor so I don't need my doctors collaborating. If I need them to, Ill assign permission but I don't need to give them access to doctors who don't...
  24. sickntired771

    ME/CFS and the Health Information Exchange (HIE)

    In the U.S. many states have what is called the Health Information Exchange whereby doctors share records with one another across multiple platforms. Patients either consent to opt-in or must opt-out. Is it wise to ever opt in for this? My feeling is that many medical professionals don't...
  25. sickntired771

    Methylfolate vs Folic Acid: Myths vs. Facts

    Whats weird is my genetics report shows I have a double mutation for MTHFR yet for some reason I take methylfolate and don't feel different but feel better when I have a lot of folic acid? What's up with that?
  26. sickntired771

    23&Me to release *some* health data again

    Which websites did you use to find that analysis? I put my raw data in genetic genie and something else.
  27. sickntired771

    23&Me to release *some* health data again

    I think Canadians have full access to the analysis provided since you aren't subject to the FDA regulations of the U.S.
  28. sickntired771

    23&Me to release *some* health data again

    23&Me is now releasing some health data, FDA approved. Those of us who already are members will begin getting access sometime in early 2016. Do you think any of the new info they will release will be helpful for ME/CFS...
  29. sickntired771

    Which tests are good for a disability claim?

    U.S. for SSDI. Thanks guys.
  30. sickntired771

    Which tests are good for a disability claim?

    My brain MRI came back normal according to my neurologist. Is there a specialist for ME/CFS who would see abnormalities that a regular neurologist wouldn't know to look for?