• 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. M

    Tracking CCI / AAI MRI & Treatment outcomes

    I did see that, thank you for sharing all that. I didn’t have a clear idea from that how your ME was tho, since you mostly focused on symptoms you have that you think are related to tethered cord. I was wondering how your specifically ME symptoms are (fatigue, PEM, cognitive symptoms and OI)...
  2. M

    Tracking CCI / AAI MRI & Treatment outcomes

    Hi Julia, would you consider updating the FB group with your progress too? I think it’s important to hear more detail from people who have had surgery.
  3. M

    Tracking CCI / AAI MRI & Treatment outcomes

    I have noticed that many patients symptoms change repeatedly over the initial 12 months after first surgery, or with additional surgeries.. so perhaps it’s a little early to say this. (I don’t know how often people are returning to update the form.)
  4. M

    Tracking CCI / AAI MRI & Treatment outcomes

    I’m so sorry to hear it Mattie. In my own experience of placebo, of which I’ve had many, even just changing where I lived, changing my routine, caused me to try to increase my activity levels and try new things and believe for a while that I could do more— but eventually realize I was just doing...
  5. M

    Does getting lots of daily sunshine make a difference in your ME?

    no.. being outdoors w bright light and background noise gives me PEM. I live in a hot country and have to limit going outside to 20 mins or so. Even if quiet, it is just tiring.
  6. M

    Xanax or Other Benzo Withdrawal SUCCESS Stories, Please.

    I haven't actually, but you just reminded me that it was on my list of things to try. I’ll give that a shot.. thanks!
  7. M

    Xanax or Other Benzo Withdrawal SUCCESS Stories, Please.

    I was able to give up ativan last year for 5 months. I had decreased dose from 1mg a day at bedtime to 1/4 mg over a year. I stopped at 1/4mg and it was fine, no taper from there and no withdrawal symptoms during those 5 months, also no improvement in ME symptoms so I don’t feel like ativan is...
  8. M

    NIH INTRAMURAL STUDY

    Hmmn.. I connected with her about 18 months ago and they were accepting international. Not sure about now.
  9. M

    NIH INTRAMURAL STUDY

    https://solvecfs.org/hope-for-the-future-a-patient-study-participant-perspective-on-the-nih-intramural-post-infectious-me-cfs-study-part-2/
  10. M

    NIH INTRAMURAL STUDY

    The study is open to international patients too, actually. This thread has a lot of info. International patients welcome in the NIH intramural ME/CFS study. Call/email Angelique Gavin: angelique.gavin@nih.gov and (301) 402-0880 “Volunteers will have travel paid by NIH and also receive a...
  11. M

    A Town for People with Chronic-Fatigue Syndrome | The New Yorker

    I know.. It read like it was written 20 years ago. Was so surprised that it was actually the account of a millennial. And, god, I’m sick of the all-in-your-head narrative! The more it’s discussed, the longer it’s perpetuated. I wish anyone writing about ME would just drop it. And If the New...
  12. M

    IV Iron infusion Experience

    Here is a good study on iron deficiency. It’s amazing to me how iron and ferritin levels are not mentioned to us. Chronically ill people may need ferritin or close to 100 or more. I was always told mine was normal. Also, it may be necessary to have hemoglobin higher than what is considered...
  13. M

    IV Iron infusion Experience

    I’ll let you know if mine work any better. I’m trying to take them in a v deliberate way that I hope they will be absorbed best. There is literature showing that to take alternate days, and in a single dose is best. (and empty stomach, no caffeine, Vit C)...
  14. M

    IV Iron infusion Experience

    I have not, but am currently trying to increase my ferritin from 22 with iron supplements. I decided to do this for 3 months or so bc have also heard of people having dangerously low phosphorus from Injectofer brand, or low blood pressure, or anaphylaxis. I am taking Active Iron brand...
  15. M

    Tracking CCI / AAI MRI & Treatment outcomes

    Her mother reported again recently and said that she is 50 to 60% improved. She has EDS and ME. Generally, it is easier to follow these stories if you are on Facebook in the diff groups for ME and CCI.
  16. M

    Tracking CCI / AAI MRI & Treatment outcomes

    Oh well that is good to know. It was just something I had noticed from talking to some EDS patients. Yes.. research needed. It is getting confusing and hard to know what to think.. I think this could be a situation where every individual is different and there won’t be clear answers..
  17. M

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    Hi @mattie... welll.. Eugh I am bummed out for you, and this is something of a reality check for all of us starry eyed with hope about surgery getting us to 100%. I know that of course you wanted more improvement. I’m glad for the gains you have so far, but I do hope they keep improving this...
  18. M

    Tracking CCI / AAI MRI & Treatment outcomes

    @tornerose It’s hard to discuss someone else’s story, since people may give a more positive slant one week and not the next. Good to know on ICC. I have noticed that sometimes when people get an EDS diagnosis of some sort, they might abandon their ME diagnosis, feeling it was wrong.
  19. M

    HBOT for ME/CFS/CFIDS

    They are designed to get you 60 mins of oxygen treatment at 2.4ata depth. Ten mins to dive w no mask, ten min break from pure oxygen at bottom, but while still at depth breathing the chamber air, and then ten mins back to surface w no mask.
  20. M

    Tracking CCI / AAI MRI & Treatment outcomes

    I am already in touch with her. She told me that she doesn’t necessarily identify as an ME patient but as hEDS/ severe POTS. but she did have PEM (she said worse after every activity). So she sounds like an ME patient. She says that since surgery she is less tired, less brain fog, can tolerate...
  21. M

    Tracking CCI / AAI MRI & Treatment outcomes

    Is it possible for them to come to the forums and tell their story? Would be wonderful to have more direct accounts..
  22. M

    Craniocervical Instability (CCI) Diagnosis: Supine MRI vs Upright MRI

    2 years ago for me I was more severe and bedridden for an 18 month period, after having not been careful enough for my first two years!. I am pretty careful now. I only go out w my caregiver for short periods to quiet places. But I can manage travel too when I must, with noise cancelling...
  23. M

    Craniocervical Instability (CCI) Diagnosis: Supine MRI vs Upright MRI

    @bread. I am moderate / severe.. housebound, spend all day in bed. But can leave house for appointments and occasionally go for lunch. Am always in a zombie state so if I do anything it’s just ignoring symptoms as best I can. I have couple months long periods where I don’t leave house.
  24. M

    Craniocervical Instability (CCI) Diagnosis: Supine MRI vs Upright MRI

    I don’t know that there is a bias, @bread. The report on this girl was never terribly clear bc not directly from her. There is another ME patient in our FB group who says the surgery saved her life, but only reports a few actual improvements so far at a few months. So people can feel like it was...
  25. M

    Craniocervical Instability (CCI) Diagnosis: Supine MRI vs Upright MRI

    Jeff, recently, the mother of the unnamed girl said that she is only 50 to 60% better,, so not fully recovered. She attributes the symptoms to both EDS and ME. Eds is an irreversible condition of course. I know the girls name and thought of inviting her on here but don’t want to pressure her.
  26. M

    Tracking CCI / AAI MRI & Treatment outcomes

    There is a young woman from the Netherlands who had C0 to T1 surgery with Gilete and is driving again using panoramic mirrors, according to her mother who has posted about it online. Some people also report they use swivel seats to turn whole torso. So, perhaps it will be possible for some...
  27. M

    Tracking CCI / AAI MRI & Treatment outcomes

    Ok thank you for letting me know. Oddly you still sound like me for many of those diagnoses, except for the kyphosis of cervical spine. I have been recommended C0 to T1 too by Gilete. Am very excited for you! Please do keep us up to speed on recovery.
  28. M

    Tracking CCI / AAI MRI & Treatment outcomes

    Oh my god. Amazing. How many levels of fusion did you do? I’m not sure if you are the same Julia from Germany that is in a Facebook group that I am also in for ME peeps w CCI, but if you are, our imaging is almost identical.. Did you have scoliosis or further spine issues?
  29. M

    Tracking CCI / AAI MRI & Treatment outcomes

    Oh my goodness.. will you keep updating us on your progress?? Like you mean you feel fully well? How is your brain fog? Did you have any vision issues, light or sound sensitivity that is also gone or improved?
  30. M

    How many years before you had to quit work?

    I think you should have an iption for immediately, weeks and months. It was 3 months for me to stop working completely, but I couldn’t work full time immediately.