I am constantely so tired and have low blood pressure that I am sleepy all day and yawning, sleeping creates no rest and I have the urge to close my eyes and sleep all the time!
Only thing that helped:
Methylphenitad (had to stop it due to side effect "tremor")
Modafinil (is really good so far, but very expensive )
Need to find a way to be pain free and awake and alert at the same time!
Age: 41 Onset Age: 14, 22 got really bad Symptoms: pain and discomfort perineum, a little bit while sitting in the right half of the scrotum. Sometimes dual stream while urinating. While ejaculating, not all shoots outside, some stays and flows outside with time (Without medication very painful). Diagnosis: have seen several urologists in my life, have done any possible and pain creating diagnosis could not help me ever. Life was hopeful after googling the Stanford/Wise-Anderson Protocol in early 2008, then every ache started making sense./ Hemorrhoids: they stress my prostate when I have a Hemorrhoid flare! Helped By: Physical therapy, keeping myself warm, hatha yoga, stretching, walking, relaxation, distraction, Tadalafil 5 mg Worsened By: Constipation, Fear or OCD "flare up", sitting and not doing any kind of "motion", too much tension in media or life, caffeine and acidy food Prior Treatments: Antibiotics, Tamsulosin, Lyrica, Gabapentin, Tylenol
I found modafinal increased my pain as much as gave me energy.
I use a cocktail of supplements when I want a boost:
d-ribose
b12
magnesium
NADh
CoQ10
Acetyl-l-carnitine
Sometimes it helps, sometimes not.
D-ribose can upset the stomach for some, but you can take quite a bit it if doesn't. It's a more bio available form of sugar.
With CFS, we have to watch out for having energy and overextending. Inability to recover from exercise is a hallmark of this crummy disease. Getting the energy to overextend seems like the real problem
I am not a doctor too!
Age 64, sudden onset 5/06 during bout of flu, colitis, lung and liver problems. Pain in penis, then moved to rectum. No urinary symptoms. Use Lyrica, Elavil, paxil, Xanax, morphine, vicodin, relaxation, pads for sitting, 100+ PT sessions. Sensitive to gluten, milk protein, soy. I have CFS, anxiety, GERD, Barrett's, colitis, kidney stones, one of which referred pain to penis.
You really have had more pain with modafinil? Ok, that may be the case with me also (don't know it for sure), since it creates muscle tension, but without it I would die, since I would live my life just in bed!
Now 10-20mg is working fine to stay alert!
Age: 41 Onset Age: 14, 22 got really bad Symptoms: pain and discomfort perineum, a little bit while sitting in the right half of the scrotum. Sometimes dual stream while urinating. While ejaculating, not all shoots outside, some stays and flows outside with time (Without medication very painful). Diagnosis: have seen several urologists in my life, have done any possible and pain creating diagnosis could not help me ever. Life was hopeful after googling the Stanford/Wise-Anderson Protocol in early 2008, then every ache started making sense./ Hemorrhoids: they stress my prostate when I have a Hemorrhoid flare! Helped By: Physical therapy, keeping myself warm, hatha yoga, stretching, walking, relaxation, distraction, Tadalafil 5 mg Worsened By: Constipation, Fear or OCD "flare up", sitting and not doing any kind of "motion", too much tension in media or life, caffeine and acidy food Prior Treatments: Antibiotics, Tamsulosin, Lyrica, Gabapentin, Tylenol
I've mostly recovered from my CFS, but I use caffeine for a boost and to stay alert (as do many people). It does not cause symptoms for me, but if you have active UCPPS, be careful.
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