• 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. M

    Looking for doctors in Los Angeles just for paperwork and rx, not treatment or experiments

    yup, just what i thought............this is why the interenet detroyed the patient community. no helpful info and local doctors or just people to connect with in real life anymore.
  2. M

    Looking for doctors in Los Angeles just for paperwork and rx, not treatment or experiments

    I know this is utterly pointless. I have asked for this on facebook groups and on here and other places since the internet ruined the cfs/me community and no one ever has any suggestions. BUT......i am looking just for docs who believe in the illness, get how disabling it is and take patients...
  3. M

    Doctor visit blues…don’t know what to do

    Look, there is no treatment for this illness. Now, your son might have other stuff going on, let's hope so as many with odd illnesses do find things to help. I've been in this game for over 30 years. Was very active in the patient community back in the day when there was good info out...
  4. M

    For those of you who are moderate

    no, it's ananerobic exercise that is super hard on us. Example: weight lifting is much harder. Now, all exercise and activity is tricky but i do find that some areobic exercise does help me to be at a higher function level. Fast moving is better than slow moving for me, always has been...
  5. M

    Need help with Mattress saga

    yes, absolutely! I have never found one as comfy as my old one, they don't make them like they used to. I tried natural ones and I am allergic to all of them. got a fancy one and the chemicals made me super sick, sounds like maybe that is the case for you too. I ended up with a regular...
  6. M

    Social Anxiety being related to CFS

    Interesting topic! i've known lots of people with social anxiety and with cfs/me as well as fibro and many other illnesses in my 30 years of the cfs/me nightmare. Don't see the connection, my self. But, i will say that of course a neuro immune illness would amp up any brain related or...
  7. M

    Would You Treat Low Cortisol or Thyroid First??

    Go to a doctor, to get adice about thyroid issues. You sound uber healthy and fit, working full time and working out three days a week. Perhaps you are just a bit depressed or in peri menopause or not happy with something in your life. It's normal to slow down in middle age and it's also...
  8. M

    Low Libido - Female - ideas?

    Truama and stress can certainly cause it, or a really bad boyfriend/girlfirned or a relationship that just isn't working. just some ideas. Being sick never caused any change for me in that area but we are all so different.
  9. M

    Annual blood tests?

    yes, you are right! I have had a few dangerous things found in the last few years that i just figured with me getting sicker. and just found some stuff on a ultra sound which is annoying. i almost didn't go because it was almost impossible to get an apointment with their new system, the...
  10. M

    Women are relying more on 'Dr Google' than their GP .... I'm, like, totally stunned !!!!

    I didn't read the article. But, yeah, it's been pretty well established for a few decades at least that women get the short end of the stick in health care, the court system, work pay, safety walking down the street, equal rights, division of labor and care in romantic relationships and on and...
  11. M

    Light Therapy (Sun)

    Decades ago, mabye at my worst levels, i didn't seem to tolerate much sun. And i live in so cal. But, after those super bad years, getting sunshine on my skin everyday for a good 20 mins or more or just being outside in safe nature was part of it too (as that is my heaven) seems to help a...
  12. M

    What ME/CFS based YouTube channels would you recommend?

    ME/CFS Alert: I haven't watched in some time but well known journalist started this charity where he interviews loads of doctors, researchers, patients and others. I've never seen anything out there, controvercial, damaging or crazy and that is saying alot in the me/cfs community. lol...
  13. M

    Much worse following bone marrow biopsy

    oh, i'm so glad. so glad you don't feel afraid and a wee bit hopeful. just not feeling so scared is huge. i've been thinking about you and worried. i don't know if you remember, but i know you in real life. we were in the same support group and you hired me a few times to drive you...
  14. M

    Founder of online 'ME/CFS brain retraining' program says his aim is to make a million bucks

    to be fair, when people are desperate to get better or heal or not be disabled, they will do or try just about anything. you shouldn't judge them. those who take advantage of vulnerable people are the ones to judge and put down, not people who are in horrible situations and suffering...
  15. M

    Much worse following bone marrow biopsy

    Aw, Andrew. How are you? I'm worried you're not doing well. I know you have been really sick as just your baseline, so when you are sicker, it's ALOT.
  16. M

    Terrible and expensive experience with Dr. Kenny De Meirleir

    Can I just say, thank you to people actually responding against alternative medicine propaganda. In the past when I've tried to even mention that endless people have been gaslit by that billion dollar business that is alternative medicine, lost so much money and worse, I have been attacked...
  17. M

    Terrible and expensive experience with Dr. Kenny De Meirleir

    Damm! I wasn't aware of all of that! I only read some but just right off the bat seeing that he was investigated by the FBI and was a lobbiest for Casinos, Alcohol etc, you know that one is shaddy beyond belief. I remember that reading about them, I saw that the couple who founded it was...
  18. M

    BC007 - what are your thoughts?

    But seriously, never heard of such a thing.
  19. M

    BC007 - what are your thoughts?

    the only 007 I've ever heard of is: Bond, James Bond. que music. sorry just had to.
  20. M

    Very bad allergies

    Sounds like you are from the UK. All i know is that the summer I went there, I almost couldn't breathe at all and literally sneezed so hard constantly when i was outside until i found some med that worked with the hard core stuff. It even gave me asthma which I never had before. This was all...
  21. M

    HealthRising: "ME/CFS and the Coronavirus Vaccine: Is There a Better Way?"

    If you have cfs/me, you have auto immune issues. Who told you that it has anything to do with vaccines? If you look at credible sources, you won't find vaccine shots as a cause. Have you ever heard of correlation does mean causation? It might help. Good luck!
  22. M

    Terrible and expensive experience with Dr. Kenny De Meirleir

    So sorry you got taken in by yet another vile human seeing huge $ signs on the head of desperate and vulnerable patients. Yeah, you can't get your money back due to having the blood work done, seeing him and signing papers. It will only make your feel more victimised and angry if you keep up...
  23. M

    Instead of ME/CFS, could some have simple schizophrenia? Its symptoms: anhedonia, blunted emotions, brain fog, apathy, social withdrawal

    "simple schizophrenia" is a completely outdated, historical term that is not used today. You are describing depression symptoms which are not cfs/me symptoms. Schozophrenia is a serious disease that is characterized by hallucinations.
  24. M

    Worsening of teeth health

    Teeth can get bad for any number or reasons. Mine were really great until i got sick, and also having a terrible dentist didn't help. I found a good dentist and had so much repair done that she caused (including a tumor that was growing that could have cracked my jaw open that was caused by a...
  25. M

    Nicotine?

    I've never been a "smoker", I got sick when I was young and I would sometimes have a cig if i was out with friends drinking. I have known people who were smokers and got sick and kept smoking. One guy I'm thinking of does rather well for an ME person though. but, we all know that coorlation...
  26. M

    Being pregnant with ME

    People generally feel better from all immune related diseases when pregnant, this is the bodies natural reaction to do everything it can to keep the mother and baby alive and to term. then the mother does crash and have all her symptoms return and usually worse than before due to the baby...
  27. M

    Hypersensitivity to dental treatment

    Can you get laughing gas? People seem to really love that stuff. With this illness, we tend to need more novacaine and it takes longer to take effect and you could let the dentist know this. You got to go though because your teeth will only get worse which will mean, more dental work or...
  28. M

    Requesting feedback on my planned CBD regimen

    You do need a bit of thc for pain relief. I don't know the amount. it is legal here but there are no regulations sooooo most of the stuff is just who knows what is in it! My doc did loads of research on it and only after that did he start suggesting trying very few drops of cbd oil that...
  29. M

    Has anyone taken buspar or busperone for anxiety?

    This disease affects the nervous system. As one of my favorite docs said to me when i brought up having anxiety: "Oh course, you have anxiety, you have a nervous system disease." Nothing complex about it. Also, when people get terrible chronic illnesses (now, i don't know if your wife has...
  30. M

    Possible Stiff Person Syndrome

    could be Lyme. Maybe see Lyme specialist. There is some guy in DC (I think) who is well known and helped a friend of mine go from being a bed ridden mess to working part time and driving around, works with animals. She still works on her health but man, the difference in her, it's amazing...