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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. L

    DIY Poor man's Tilt table test (PMTTT) for OI, POTS and NMH

    I am scheduled to see a doc in a few weeks, but how much variation in the test results can one expect? I was feeling better today and have been drinking a lot of water the last few days to see if that would help. It seems the results are better. But the heart rate increases quite it a bit after...
  2. L

    DIY Poor man's Tilt table test (PMTTT) for OI, POTS and NMH

    Thanks very much :) I will get on the phone Monday morning and see what I can find out. I am just trying to figure out what is wrong with me. I just never feel that good anymore :/
  3. L

    DIY Poor man's Tilt table test (PMTTT) for OI, POTS and NMH

    Here are my results. I don't really known anything about POTS, but maybe that is occurring? Resting for 50 Minutes: 111/65, HR:62 1 Min: 113/75, HR=101 2 Min: 123/88, HR=95 3 Min: 117/87, HR=95 10 Min: 110/87, HR=92 15 Min: 114/90, HR=107 20 Min: 102/79, HR=103 25 Min: 127/84, HR=105 30...
  4. L

    Suspected CFS. Thoughts?

    Sounds good. I talked with a sleep doctor and based upon my symptoms, he felt it was highly unlikely that is was obstructive sleep apnea. I have also used a recording pulse oximeter for a few weeks to monitor sleep at night and there was no desaturation events (characteristic of sleep apnea)...
  5. L

    Suspected CFS. Thoughts?

    Thanks, I will start looking through the forum knowledge base and looking into seeing a specialist. A couple quick questions that may help me along: - For now, I was thinking about trying good sleep "hygiene". This is because I don't know if I have CFS or not. Its still just a hypothesis. I...
  6. L

    Suspected CFS. Thoughts?

    No, I did a pretty basic test in Wilson's book, but I will do the more thorough one (hopefully tomorrow). Thanks for the info :) Curious about napping. Do a lot of people with CFS find they NEED to nap? I feel like I NEED to nap or I am useless. However, I wonder if I have just trained my body...
  7. L

    Suspected CFS. Thoughts?

    I am still holding out hope that it is not CFS. I keep telling myself its just low testosterone, but in the back of mind I have thought for a while it something more nefarious. I did do that test about a year ago, but can try it again. It is one of the three tests from Dr. Wilson's book on...
  8. L

    Suspected CFS. Thoughts?

    Thanks for the thoughts. That is interesting. - Exercise tolerance. That doesn't seem to be a great fit since I am pretty tired even when not exercising. And the symptoms are not a good fit really. - Dysautonomia. This is possible, but when I look at the symptoms, its not a great fit either...
  9. L

    Suspected CFS. Thoughts?

    I suspect I may have CFS (and have had it for 20 years, since age 20). I haven't talked to my doctor yet because we suspected it was low testosterone (which I also have, but this is different). Some of the symptoms are: - Post exertion malaise (PEM). This seems to be the big one. I really like...