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    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. Jessie 107

    Healed ME in a year

    Since this program went out, I have had people tell me about the ' miracle ' cure! Asking if I am going to try it. The program has done more harm than good for the M.E. community.
  2. Jessie 107

    Starting LDA while in a crash — good idea?

    I am taking 2mg of Abilify and have been for about 3 years. It doesn't make me crash, I have less crashes now but if I do crash they are much less severe than before Abilify and they don't last as long.
  3. Jessie 107

    Abilify- Stanford Clinic Patients

    I have been on Abilify for 3years and did not experience any depression when starting, or since.
  4. Jessie 107

    Clobazam vs clonazepam

    I take it during the day, I only take it occasionally like when I am in a crash or I have to tolerate any appointment. I take 1 1/2 mg, it helps all of my symptoms including noise sensitivity, I don't have light sensitivity.
  5. Jessie 107

    Clobazam vs clonazepam

    Are you able to try Ativan instead? I am very noise intolerant and Ativan really helps me with it.
  6. Jessie 107

    Comment by 'Jessie 107' in 'Seven Years Later - Out of Bed on My Own Free to Roam (illustrated)'

    @Howard wow, so happy for you, being bedbound myself I can only dream of such freedom. Must feel wonderful to be able to move around on your own. Are you able to sit upright in your new wheelchair, or do you have to have your legs up and be reclined?
  7. Jessie 107

    Abilify tolerance

    @Whit I'm sorry to hear that Abilify has lost its effects for you. Please keep us updated on how you get on with Rexulti, energy allowing ofcourse 😊
  8. Jessie 107

    has anyone needed a colostomy bag?

    @YippeeKi YOW !! I also suffer with impaction 😒 I have been trying to find Magnesium oxide in powder but can only find it in capsules/tablets,I am in the UK. Would it still work in tablet form? Not sure how many to take.
  9. Jessie 107

    Abilify tolerance

    Abilify has been working well for me for nearly two years. Recently I decided to take 2 mg every other day instead of every day but I started having more crashes again. So I am back to taking it every day, just hoping that it isn't losing its effectiveness. We shall see. 🤞
  10. Jessie 107

    TSH 8.6 - should I just go straight onto thyroid meds?

    I was a patient of Dr Myhill, my Tsh was 5 if I remember correctly, she put me on Metavive 1. I take 4 Metavive a day.
  11. Jessie 107

    Abilify tolerance

    @leokitten I am taking 2mg. Are you in the UK?
  12. Jessie 107

    Abilify tolerance

    I'm very pleased to hear that Abilify seems to be working for you again, it's still working for me after almost two years. Though I am in a crash atm due to over exertion, really important to still pace carefully when feeling improved. I crash much less now too. I also don't feel as ill as I...
  13. Jessie 107

    Abilify tolerance

    Fingers crossed it works for you again 🤞
  14. Jessie 107

    Does Abilify help ?

    To be honest, I can't remember, I will say it was a few weeks.
  15. Jessie 107

    Does Abilify help ?

    Yes, increased by 0.25mg per week.
  16. Jessie 107

    Does Abilify help ?

    I forgot to mention that I have also been able to stand up for 10 seconds for the first time with out crashing 😊
  17. Jessie 107

    Does Abilify help ?

    Abilify has helped me in many ways. I have been bedbound for almost 4years now, since starting Abilify I no longer have the ill/ malaise or flu like symptoms. I can have a bath using a bath lift, Rest downstairs every day using a stairlift, Lay outside, Talk more, Use my phone more, Feed...
  18. Jessie 107

    Does Abilify help ?

    Yes it's still working for me, I am severe. I have been on it for about 18months now.
  19. Jessie 107

    Does Abilify help ?

    I am in the UK, my doctor refused to prescribe Abilify. So I ordered it from a online pharmacy.
  20. Jessie 107

    unrelenting flu feeling

    @perrier My flu like symptoms disappeared when I started on Abilify . I take 2mg and have been taking it for about 18months. I am bedbound but I can now do more than I could before including being able to have a bath,rest down stairs every afternoon, and lay down outside in the summer months...
  21. Jessie 107

    Martin aka Paused and H.E.L.P treatment

    @BrightCandle Thankyou for the information, yes I know what you mean about the ups and downs of the illness. I think I will give it a go, I've nothing to lose and I am Severe so maybe I will notice a difference. I am taking Abilify at the moment and I have had some improvement from that.
  22. Jessie 107

    Martin aka Paused and H.E.L.P treatment

    @ Brightcandle Have you noticed any benefit?
  23. Jessie 107

    Martin aka Paused and H.E.L.P treatment

    What anticoagulants are you taking?
  24. Jessie 107

    Comment by 'Jessie 107' in 'The Way of the J-Tube / Underwear Crisis Averted / Orange Sun Turns Red'

    How beautiful must be lovely to be outdoors, very pleased for you 😊💙
  25. Jessie 107

    Comment by 'Jessie 107' in 'Days Passed / Return to the Nursing Home / Covid Recovery'

    Great news @Howard , very glad to hear that you had the best care that you rightly deserve. Sending warm wishes. 😊
  26. Jessie 107

    Comment by 'Jessie 107' in 'Experiencing Covid-19 in a Nursing Home (Day .. Whatever)'

    Glad you are on the mend Howard , must have been a scary time for you.
  27. Jessie 107

    Comment by 'Jessie 107' in 'Experiencing Covid-19 in a Nursing Home (Day .. Whatever)'

    @Howard Hey, Just want to let you know that I am thinking about you right now. I hope that you make a speedy recovery. I have not long found this thread, I am glad to hear that you are setting in ok at the nursing home and that you have a better quality of life now. Must be lovely to be able...
  28. Jessie 107

    Reducing hypersensitivity to stimuli

    This is interesting, I might give it a try, noise sensitivity is one of my worst symptoms.
  29. Jessie 107

    Reducing hypersensitivity to stimuli

  30. Jessie 107

    Aspirin

    @Oliver3 I am going to try Aspirin the next time I crash. Can I ask what dose you take ? And do you just take it for the duration of the crash?