• 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.

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  1. J

    What do you sit on? My butt is so painful!

    I actually sit in a bed to keep my legs up, otherwise my blood drains to my feet and legs.
  2. J

    What do you sit on? My butt is so painful!

    I sit in a bed because I need my legs up. You're right that sitting up straight helps, and I have a pile of pillows behind me. Unfortunately my back is so sensitive it hurts to have anything pressing against it. Plus, now my shoulder blades dig through my flesh, no thanks to a brand new...
  3. J

    What do you sit on? My butt is so painful!

    I've been sedentary for so long that my muscles have atrophied to the point where I'm always sitting, standing or lying on my bones. They dig so painfully into my flesh that I can't stay in one position for long. I've tried an eggcrate foam cushion and a gel honeycomb type cushion so far...
  4. J

    Low-dose naltrexone (LDN) - how's it working for you?

    I don't know the filler. My compound pharmacist made it. I take calcium supplements every day so I'm not sure that would affect me. Who would think such a low dose would affect me so badly but I've been sick for 30 years and am incredibly sensitive to so many things. I also had withdrawal...
  5. J

    Low-dose naltrexone (LDN) - how's it working for you?

    I tried LDN for 2 1/2 weeks at 0.5 mgs. It made me a lot worse: heart pain, headaches, migraines, worse stamina and less strength. It also made my IBS worse and didn't touch my pain or my tachycardia. It's taking me months to get back to my old baseline, which sucked to begin with, and I'm...
  6. J

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

    I got my CT scan and have the discs with images on it. Is there a way I can save the images on my computer in a file and email it to the neurosurgeon so I don't have to mail it? Thanks!!
  7. J

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

    I'm getting a CT scan next week and am wondering exactly what kind of blank CDs I need to bring with me to copy my results? The kind for burning photos? CD-R? Thanks!
  8. J

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

    Thanks! I talked the dr's nurse and hopefully we've got it sorted out now. We'll see.
  9. J

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

    My dr submitted a prior auth request for a 3D CT scan with rotation, and used the ICD 10 code for chronic fatigue. Of course, it was rejected by my insurance. (I could have told him they would if I'd known that was the code he used.) Anyway, he's willing to resubmit, and wants to know which...
  10. J

    My ME is in remission

    Thanks for the clarification. It's been one frustration after another.
  11. J

    My ME is in remission

    Thanks for your reply, @Gingergrrl . I should have mentioned that I can't have an MRI because I have non-MRI compatible cardiac pacemaker. :( @jeff_w was diagnosed via CT scan, so it is possible, but not ideal.
  12. J

    My ME is in remission

    @JenB , this is fantastic, overwhelming news! I'm really happy for you. It's exciting and frustrating at the same time for me. I'm trying to get my Dr. to get me a CT scan but the radiologist told him it's not possible to diagnose CCI or chiari malformations with a CT. That's not correct, of...
  13. J

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

    I guess 10 days of pain would be worth getting rid of all the other symptoms. How ever do you sleep in that thing? :wide-eyed:
  14. J

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

    That vest looks painful. Do the screws go into your skin on your head?
  15. J

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

    Gosh, you're quick! Thank you so much. I have a new doctor who is very open to learning new things about ME/CFS and will do what he can to help. We were about to start a course of antivirals off-label, but I'd sure like to rule these things out first. I hope there's a hospital that does that...
  16. J

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

    Thank you for your quick reply! Just to clarify, a neurosurgeon is the one who would order the CT scan right, not my primary care doc? Wow, I just looked up Tethered Spinal Cord and one of the symptoms is discoloration of the lower back. I have red striations on my lower back, right above...
  17. J

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

    I'm very interested in getting tested for Chiari Malformation but I have a cardiac pacemaker, so an MRI isn't possible. I guess a CT scan or x-ray would be what they would use to diagnose me? I wonder if a neurosurgeon would do a trial with a halo vest first? I've been very sick with ME/CFS...
  18. J

    Need recommendations for very soft sheets that breathe

    I currently have two sets of soft cotton sheets. Well,I had two sets until one of the fitted sheets wore so thin it tore. Now I'm desperate to find a replacement but it's so hard because I can rarely get out of the house. My mom has tried to get me sheets before but her idea of soft usually...
  19. J

    CFSAC Meeting Scheduled for January 13, 2015

    Thanks, Niel.
  20. J

    CFSAC Meeting Scheduled for January 13, 2015

    They can't hear us, right?
  21. J

    "Secret home remedy" to angular cheilitis??

    Thanks, ness. I think it's a con, too! The lady claimed to have done all kinds of research and found a remedy using "two ingredients commonly found in your kitchen or bathroom." That just irritated me.
  22. J

    "Secret home remedy" to angular cheilitis??

    OK, here goes: dry mouth I'm thirsty a lot, and get dehydrated quickly lack of muscle recovery after exercise extremely sore neck muscles reversing normal curvature of neck (?? I walk sort of slumped over and neck muscles are tight and get sore like I have meningitis) exercise deblitates...
  23. J

    "Secret home remedy" to angular cheilitis??

    Has anyone paid out the bucks to discover what this magic cure is that is touted a few different internet sites? I have cracking of the corners of my mouth and itchy inflammation around my lips. I've tried over the counter 1% clotrimazole cream but so far no luck. Now I have a dental cleaning...
  24. J

    Nervous about B6 toxicity and too much Potassium

    Thanks so much for your time, Freddd. You've been very kind and have set my mind at ease now that I have a better understanding. :) Jessica
  25. J

    Nervous about B6 toxicity and too much Potassium

    A 3.8 is a level at which I and many others would be having all sorts of trouble. I get into trouble at 4.2 and below. At 3.8 you would be best off starting the potassium before you have symptoms as a precaution. That's interesting because as I was reading the list of hypokalemia symptoms...
  26. J

    Nervous about B6 toxicity and too much Potassium

    Ok, thanks Freddd, for clearing all that up. I don't have kidney damage, thankfully. I had my CBC and potassium (etc) tested Friday, before starting up, so I'll call the dr tomorrow and see what it was. Last April, my Potassium was 3.8 meq/L. I think the 2.15 mg of adb12 was a typo! Like I...
  27. J

    Nervous about B6 toxicity and too much Potassium

    Thanks, Sally. I plan to get my potassium tested again this week to see what's going on after a few days. I need to get more blood work done on my borderline thyroid panel anyway. How can you tell if your sensitive to B6? What are the signs and symptoms? Thanks!
  28. J

    Nervous about B6 toxicity and too much Potassium

    I had an appt with my naturopath dr today and we discussed the methylation protocol a little. She was concerned about toxicity from too much B6 and thought that 300 mg of Potassium seemed like a lot. Now I'm nervous because I really don't know what I'm doing other than following Freddd's...
  29. J

    Help! B12 and acid indigestion!

    Hi Freddd, Please bear with me as I have more questions. :) If I'm going to cut out all Folic Acid and Folate other than Metafolin, then I need a new multi-vitamin. What do you think of this one: New Chapter Every Woman's Mineral Complex I hesitate to take PE Nutrient 950 simply because...
  30. J

    Help! B12 and acid indigestion!

    Hi Freddd, Thanks for your reply. I've been thinking a bit and what is strange to me is that I'm not sure it's so much stomach acid as it is gas which starts in the stomach and goes through the intestines. I'm very prone to intestinal gas and even the slightest change of diet or supplements...