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

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Search results

  1. J

    Dreaming?

    Have you had significant changes in dreaming at night? I know our REM and sleep patterns are messed up. Before I got sick I had very vivid dreams that actually made sense. When I first got sick my dreams completely went away for months. A few months later i stated having very vague...
  2. J

    Who should I see

    In order for you to be sure you need to have everything ruled out. Wouldn’t you want to find something you could fix? You said noting about fatigue either.
  3. J

    There will never be a cure for CFS...

    CFS seems to be a bunch of different illnesses. Too many symptoms and differences to boil it down to one thing like you can with the flu or HIV. CFS has many categories and causes I fear. Everyone has virtually different symptoms and reasons for their causes. Hope I’m wrong.
  4. J

    Diagnosed hypothyroid now

    Thanks. We started Levothyroxine at 50mcg. Boy those pills are small. Doesn’t seem like having all of my symptoms is gonna be fixed by hypothyroidism treatment. . I don’t know how bad hypothyroidism can get. I’m either hypothyroid or CFS I believe though. Pretty sure I’d rather be...
  5. J

    Diagnosed hypothyroid now

    Probably should have been long ago. Always had lower than range T4 and barely in range t3. I now have severe symptoms. Don’t know if they can finally catch up with you as time goes on. I got wiped out in 2 months. Don’t know if hypothyroidism can come on that way. I’ve also been...
  6. J

    Low thyroid?

    I was gonna push for a trail of T4 because I’m borderline hypothyroid. I don’t know how much it would help if any. I’m just looking for something different than CFS. My thyroid numbers have always been borderline hypothyroid even when I felt good so I’m thinking i didn’t get sick all of...
  7. J

    Low thyroid?

    So you think thyroid and adrenal dysfunction can be a reason for havin CFS? My thyroid numbers are borderline hypothyroid and my cortisol levels are not low. I’m just wondering if some of us are hypothyroid. It just seems CFS is much worse from what it looks like.
  8. J

    Low thyroid?

    Wonder what the level of fatigue is with people that are diagnosed hypothyroid and how it relates to CFS. For some resson I think the severity of fatigue and weakness is much worse in CFS.
  9. J

    Low thyroid?

    Seems a lot of us are low thyroid. Normal TSH but real low or barely in range T3 and T4. Anyone think a trial of T4 could help? People on Peaktestosterone.com have talked about people misdiagnosed with CFS and actually were greatly improved from a trial of thyroid. I don’t know if...
  10. J

    Thyroid Megathread

    How do you know if you are having adrenal issues? Cortisol tests? I had a slightly elevated morning cortisol test at the beginning of trying to find out why I as sick. Did the ACTH test. Came back normal. 24 hour urine came back at top of range. 11pm saliva tests came back...
  11. J

    Do people recover?

    I just googled that for something to do and look for some optimism. Having CFS and losing your job and everything else going to Hell it seems isn’t helping the optimism. Apparently people do according to google posts. They recover at different levels from totally to very little. Some...
  12. J

    Disability/Wisconsin

    Thenk you guys. I did talk to a couple disability agents today. One sounded like it wouldn’t be that bad and the other made it sound like if you even have a little money that it’s hard and long. The one agency already sent papers for me to complete and get started. They gave me some...
  13. J

    Disability/Wisconsin

    Thank you so much. Have you had to battle? I just heard how ridiculous it is to apply and win and I don’t have the time or energy to fight anymore. Who knows if it will even work anyway. Heard you need to be pretty much broke to apply anyway. How are you supposed to survive if you...
  14. J

    Disability/Wisconsin

    I’ve just been diagnosed yesterday with CFS. I cannot work anymore. Did it as long as I could. I’m 51 and I would say have a moderate case. I’m applying for disability as of today. Talked to one law firm(Tabak Law Offices). They are paid upon winning the case. Up to $6000 which...
  15. J

    Just got diagnosed.

    Ok. What’s your success? Thanks
  16. J

    Just got diagnosed.

    Well my insurance isn’t going to cover Valtrex. It’ll be $731 for 90 pills. Would I be better off not even doing this with inactive EBV anyway?
  17. J

    Just got diagnosed.

    Interesting. Interesting. I’m really not ecpecting this to work but I’ll try it. I’ve read that it works if you have an active EBV virus going on. I have EBV as does 90% of population does but mine is not active. Another thing to study up on before I get my hopes up.
  18. J

    Just got diagnosed.

    Been a long haul but a year and a half into this fun time and ruling everything out I’ve just been diagnosed with CFS. Not sure how I feel. Dr wants me to try valtrex and see what happens. I guess it helps to finally have an official diagnosis psychologically. As you know this...
  19. J

    Blood pressure spikes

    I think it fits in with fatigue, pain, brain fog, weakness, constipation ,anxiety, insomnia, and all the other things that don’t make sense.
  20. J

    Are you totally convinced you have CFS?

    So you have an active Epstein-Barr virus?
  21. J

    Are you totally convinced you have CFS?

    So low lymphocytes are low NK cells?
  22. J

    Are you totally convinced you have CFS?

    Do you have active EBV, Also if you have high reverse T3 isn’t that some sort of hypothyroidism or autoimmune issue?
  23. J

    Blood pressure spikes

    No I don’t take anything. Like Alex said it’s some dysregulation probably that we know nothing about. My BP today is 121/71. Tomorrow it could be 149/91 or something. It just feels like so many times I’ve got this unhealthy wired feeling. Feels like my anxiety gets cranked...
  24. J

    Blood pressure spikes

    When I was healthy my BP was always like 125/68. Since I’ve been sick I can have BP spikes of like 155/90 sometimes. It feels like because of anxiety from being sick and tired. Anyone have any idea about this? Is it because of anxiety? So many times I’m tired but wired as they say...
  25. J

    Are you totally convinced you have CFS?

    Yeah if your TSH is normal and t3 is low it could be a pituitary issue. What’s your T4, My TSH is normal and under range T4 with lower T3. Always been that way even when healthy. I was tested for Cushings actually at first because of high morning cortisol. Could you have Addison’s?
  26. J

    What’s up with this? - [Faulty Cell Receptor in Immune Cells]

    This is new it looks like. It seems like many believe there is a common issue at the cellular level. Any ideas what’s going on here? https://www.sciencealert.com/one-of-the-biggest-myths-about-chronic-fatigue-syndrome-just-got-destroyed
  27. J

    Are you totally convinced you have CFS?

    It looks like natural killer cells are lymphocytes. I noticed that my lymphocytes tests came back below range on two tests. Is there anything to this do you think?
  28. J

    Are you totally convinced you have CFS?

    my trial with T3 and prednisolone lead me to the conclusion I might suffer with hypopituitarism. What did your trial show you? What was the reason for t3? Is it low? Have you had scans or labs for hypopituitarism?
  29. J

    Are you totally convinced you have CFS?

    Yeah, I’ve been tested for all of that on those lists. There’s gotta be more than 8 of 10 things though to rule out though. What genetic disorders can you think of? Well then your symptoms are all from encephalitis then right? How can they ignore that you’re sick and also had...
  30. J

    When they can’t find something.

    17 years and you finally accepted last year? What were your thoughts during that 16 years? Did you keep looking for something that could be a possibility? Also what’s the difference between the American criteria and the Canadian criteria? Why don’t you match up with American criteria...