• 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. Johnskip

    a hip replacement needed ?

    hi guys another update on my hip replacement surgery I 100 percent regret ever getting it done my hip pain is more tolerable but I am having low blood pressure episodes and feel so drained it's horrendous I worked so so so hard to a baseline that I can get through life with now it's gone
  2. Johnskip

    waking up in a crash state at night

    when I wake up with a crash I get terrible anxiety and I'm in a coma like state with all my bodily fluids coming out of me all night everything and also my sex drive is crazy at that time does anyone know why
  3. Johnskip

    a hip replacement needed ?

    I have to give you guys an update I had the surgery on Aug 15 and everything went fine during surgery no problems and no 17 days later my hip is doing pretty good but my cfs seems to have gotten worse I know the fatigue from surgery but this is alot more than that I'm just hoping and praying I'm...
  4. Johnskip

    a hip replacement needed ?

    Well My total hip replacement is 4 days away and I'm really getting cold feet I am totally undecided on going through with the big operation I know my hip will be better that is a no brainer because my hip is terrible but I am still able to walk I am so used to the pain dealing with it for 15...
  5. Johnskip

    Does any male take testosterone replacement therapy?

    just wondering how you do on it and it's effects??
  6. Johnskip

    High dose magnesium CAUSING migraine/headaches

    You might want to drop the citrate
  7. Johnskip

    a hip replacement needed ?

    when did the hypotension emerge how is your range of motion pain level can you run of you had to?
  8. Johnskip

    a hip replacement needed ?

    yes thankyou again it's coming time for me because some days I can barely walk but of course don't want to worsen I can actually have the operation being awake now only getting a spinal does anybody do well on propanol they use that to to get you in a sleepy state?
  9. Johnskip

    a hip replacement needed ?

    thankyou for your honesty I am really afraid of that I don't do well with the anesthesia did you get anesthesia
  10. Johnskip

    a hip replacement needed ?

    just want to get you guys opinion I have cfs no doubt experiencing pem often and having all the 2500 symptoms that come along with it still hard headed still trying to exercise and keep myself in a little shape it's the only way for me but my question is I needed a new hip at 37 years old after...
  11. Johnskip

    Question for former athletes/fitness rats

    I feel the same way basketball player here
  12. Johnskip

    CFS Gone for Now. Will it last.....

    what is equlibrant??
  13. Johnskip

    Can anyone relate to feeling bipolar-ish???

    same here exactly
  14. Johnskip

    frequent urination leading to OI/POTS/NMH?

    I urinate constantly when my body has had enough and I'm up all night like 10 times it's crazy other days I will only urinate once all day
  15. Johnskip

    did anybody notice any tongue thinning on the sides?

    yes sometimes
  16. Johnskip

    did anybody notice any tongue thinning on the sides?

    i I noticed in the very beginning of my onset one side of my tongue got thinner I am positive as it is more veiny than other side it was notice this before I show it to doctors they don't say anything I also have indentations and it never gets any better
  17. Johnskip

    did anybody notice any tongue thinning on the sides?

    when I first crashed hard 2 yrs ago I noticed it
  18. Johnskip

    Advice on taking Ritalin for ME/CFS?

    top neurologist at Penn gave me Ritalin? will it help does it help ?
  19. Johnskip

    Who has autonomic dysfunction?

    me personally I don't need no doctor to tell me I have ans damage I sweat in my head now compared to sweating profusely all over my body I actually feel my body trying to sweat my digestion is screwed up even though I eat the healthiest diet my heartrate used to be 40 resting now it is 60 my...
  20. Johnskip

    How any people have found that any or light exercise has helped improve your illness?

    well said it is truly amazing how people are mislead about this illness
  21. Johnskip

    Who has autonomic dysfunction?

    not sweating properly
  22. Johnskip

    Who has autonomic dysfunction?

    very interesting this all started with pressure and pain at base of skull and neck now when looking up I'm in my most severe pain and it causes pem
  23. Johnskip

    Poll: Do you have pain in the neck/shoulders/spine

    Anybody get pain in neck especially looking up? I noticed when I tilt my head back to look up I have neck pain then I had a crash following
  24. Johnskip

    high ferritin level ??? give blood donation???

    true but can anyone diagnose why it is elevated
  25. Johnskip

    Anyone Else get ill after exposure to sunlight - not just the heat

    I loved to lay out all my life in the sun for hours and hours now if I lay out 15 minutes I feel like death and dehydration and I'm going to faint even with great nutrition and proper hydration
  26. Johnskip

    high ferritin level ??? give blood donation???

    how do you I know if I'm down a pint?
  27. Johnskip

    high ferritin level ??? give blood donation???

    I believe unbound excess iron is a catastrophe and allowing all disease to manifest
  28. Johnskip

    high ferritin level ??? give blood donation???

    I don't believe that for one second
  29. Johnskip

    high ferritin level ??? give blood donation???

    why would it be bad for us to give blood???? I understand risk of other people absolutely but for us?
  30. Johnskip

    high ferritin level ??? give blood donation???

    really why?