• 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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Search results

  1. L

    Getting tested for CMV, EBV & HHV6

    Hi everyone. I've had M.E since I was 6. I'm 23 now. I'm thinking of getting these tests done soon as I have recurring infections every other week. Apart from this list do you think it's worth getting tested for Coxsackie (and if so which tests?) Here are the tests I'm getting done which are...
  2. L

    Rheumatologist, treatment, the journey so far

    Finally got the ANA report...
  3. L

    Rheumatologist, treatment, the journey so far

    Here they are. Will post ANA on Saturday. I feel do frustrated because everything looks normal but I don't feel anything but normal. I'm in so much pain and severely housebound. Would anyone care to look at these? @Jonathan Edwards
  4. L

    Complete blood count and Erythrocyte sedimentation rate

    Hi, guys. I've gone from mild MECFS to severe over the last three years and have had MECFS for sixteen years. I wanted to share my CBC and ESR results as I've heard that ESR results can have some sort of connection with MECFS. I'm confused about my results as they seem normal. I'm also taking...
  5. L

    Rheumatologist, treatment, the journey so far

    I got my results (Except for ANA), that takes more time. Will post them tomorrow. I didn't understand much of what was in the CBC or ESR reports.
  6. L

    Rheumatologist, treatment, the journey so far

    Thank you. That was helpful. I'll inform my doctor.
  7. L

    Rheumatologist, treatment, the journey so far

    Here are the results I have so far. Two tests: Rheumatoid factor and ANA. In a later post (when I feel better) hopefully I'll post the pharmaceuticals and supplements my rheumatologist prescribed.
  8. L

    Rheumatologist, treatment, the journey so far

    Thank you for taking the time to respond. I hope you're having a lovely day. Hats off to my rheumatologist! Yeah, I'm taking mecobalamin Merck, can you provide more information about the homocysteine tests or MMA tests for b12, and how they might be incorrect? I'll raise the issue with my...
  9. L

    Rheumatologist, treatment, the journey so far

    Update: Just had some blood tests, they took 4 vials of blood.... Feeling so dizzy....On the topic of the tests my private rheumatologist in Pakistan ( the one who diagnosed me with MECFS ordered) These are these tests she ordered: CBC – Complete blood count ESR HBSAG – Hepatitis B Surface...
  10. L

    What does your Fitbit data look like?

    We have an mecfs heart pacing group on FB. I noticed many people there opt for polar or Garmin instead of Fitbit. In terms of price though: which one is more affordable?
  11. L

    What does your Fitbit data look like?

    Wow! Talk about timing. I was just thinking of whether to buy a Fitbit or a polar a360?
  12. L

    Dr Enlander vs Dr Frid

    Oh, what exactly does it entail?
  13. L

    CFS recovery and blood pressure?

    What supplements do you take and why? If you don't mind me asking, if you've already answered this before in another thread - simply link me!
  14. L

    The Amazing Trazodone

    I reacted so badly to tradozone. I'll never forget it.
  15. L

    Low blood pressure? Buffered salt tablets?

    My blood pressure has been constantly low since I got CFS, has anyone found anything that helps? I've been looking into buffered salt tablets, have they helped you and if not what were your reactions? I'd also like to know what else helps your hypotension. I cannot stand up without having half...
  16. L

    Pain relief without salicyliates?

    Do you have a specific brand you stick to? I'd like to try the fish oil for widespread pain.
  17. L

    Gabapentin

    Thanks for sharing! About me, I am very petite and underweight so I think it's ok for me. I weigh 37 kgs.
  18. L

    Gabapentin

    Thanks for the optimism!! Hehehe
  19. L

    Rheumatologist, treatment, the journey so far

    Vielen lieben dank, Joh
  20. L

    Gabapentin

    I overreact to many medicines too unfortunately. Fingers crossed.
  21. L

    Rheumatologist, treatment, the journey so far

    Today I finally saw a rheumatologist in Pakistan and she officially diagnosed me with Chronic fatigue syndrome. It took me a long time to get here, but I'll be documenting my journey in this thread. I finally feel brave and open enough to do this, especially as there are no resources in my...
  22. L

    Gabapentin

    Uh oh, I have widespread chronic pain today, it's literally killing me and I have a business dinner tonight :( I'm so frustrated.
  23. L

    Gabapentin

    My rheumatologist prescribed gabapentin for my CFS pain. Around 100 mg. Has anyone else here taken it and if so has it helped?
  24. L

    Dr Enlander's office

    Thank you! I found a number on that thread that helped! Appreciate it.
  25. L

    Dr Enlander vs Dr Frid

    They cannot prescribe anything or treat me, they'll only collaborate and guide my physician in the right direction.
  26. L

    skype diagnosis?

    Geia sou re kopela :) ta idio edw, I have the same situation here, were you able to get any help?
  27. L

    Dr Enlander's office

    Why doesn't Dr Enlander's office ever pick up the phone or answer emails? I've been tiringly writing and calling in, leaving messages at 212-794-2000
  28. L

    Dr Enlander vs Dr Frid

    Nope, I'm in a country in Asia where CFS is unknown so my best bet is to find a doctor who can work with my local doctor. I cannot travel either due to health reasons plus getting a medical visa based on CFS is hard so these two doctors are my best bet....