• 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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Search results

  1. K

    Jaw Pain

    Hi there, lately I have been having severe headaches with jaw pain. Every time I talk or try to eat, it kills. Does anyone else have this? Have you found a way to get some relief? Thanks!
  2. K

    Pulsating inflammatory pain in back area

    I have this reaction too, even though I hardly exercise. I use a sport type cream called fisiocream, which uses natural ingredients to relieve muscle aches and pains. May sting a little to begin with but that wears off.
  3. K

    Calling all Aussies! Anyone tried Dr Richard Schloeffel?

    He is amazing but getting in is extremely difficult as he has technically officially closed his books and the receptionists are a bit harsh when you ring to enquire. However, if you are extremely persistent may just be able to get in with a little bit of luck! If anyone would like more...
  4. K

    Caffeine effect?

    I use to drink 4 coffees a day, then all of a sudden I became really sensitive to it and can't even have a sip!
  5. K

    Cannot handle long drives

    I get fatigued just by being in a car for 20 mins or longer, I haven't driven for awhile now
  6. K

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

    However, I am open to suggestions and drs can be wrong. Maybe I have been mistreated and maybe I haven't. I will take your suggestion and look into it further.
  7. K

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

    For me I did have underlying CFS/ME. I was checked for tethered cord both pre-op and post-op when my symptoms re-emerged. I also didn't have craniocervical instability I was thoroughly checked pre-op. My surgeon and neurologist checked for all those things. When I had a sudden onset of symptoms...
  8. K

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

    I was diagnosed mid 2010 with a chiari Malformation at age 15. It was detected on a normal MRI that the dr requested. The earlier CT scan did not show it. I was then referred to a neurologist and neurosurgen who worked as a team. They both didn't think my symptoms were coming from the Chiari but...
  9. K

    Amitryptiline / elavil

    I am on amitriptyline, the brand version in Australia is endep. My dr started me on 10mg for a couple weeks until I adjusted to the medication and then I went onto 25mg and stayed there. It has helped my facial pain significantly, allowed me to sleep better at night and helped a little with...
  10. K

    Who should I see

    What country are you in?
  11. K

    Good day bad day .. a puzzle. Help

    I was put on several anti-depressants some were for their side effect of reliving headaches and sometimes for mood. ALL of them made me WORSE. Some made me more angry, some turned me into a complete zombie. I couldn't tolerate them. But due to my severe headaches and facial pain they were...
  12. K

    Custom made ear plugs

    You can get them made at Costco or Australian Hearing in Australia. Not sure about the US, but the link that someone else posted has custom ones and that is an American site.
  13. K

    Custom made ear plugs

    You can go to the Earplug Superstore and get a sampler pack to try out many different varieties and see what works best for you. https://www.earplugstore.com/ They're a reliable company - I've used them for several years. Thank you for that! I will have a look at it :)
  14. K

    Custom made ear plugs

    They never stay in my ears either!! I can get custom made solid hearsavers for about $100 aud or custom musician's hearsavers (these have different types of filters) for $140 aud. I am not going to use them for sleeping. They are for those odd occasions that I venture out of the house or have a...
  15. K

    Custom made ear plugs

    Hi there, I am quite sensitive to noise, it is also a trigger for me. So I was thinking of investing in some custom made ear plugs, has anyone else tried this? Any reccommendations? Are they more effective than cheap ear plugs? Thanks :)
  16. K

    For all the ladies...

    My periods were regular and basically pain free from ages of 14-18. The first time they became irregular I had a golf ball sized cyst on my ovary which had to be surgically removed. My periods went back to being regular for a year or so. Then bam! I was experiencing severe pain during my...
  17. K

    Ambition and ME/CFS

    I've always been ambitious and still am. I have pushed through to achieve my goals until this year as my CFS and fibromyalgia became significantly worse. I still have goals but I break them up into very small bits, it'll take a very long time till I achieve what I want but that doesn't matter as...