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I am a 27 yr old female who was recently diagnosed with PANS. I also have the diagnoses of: M.E./CFS, IC, POTS, complex regional pain syndrome, GAD + treatment resistant depression, excessive daytime sleepiness + non-restorative sleep. The ocd came on suddenly in 2010 when I was around 23 or 24. It's always been magical thinking surrounding the issues with my bladder and sleep - which are both very extreme. I've been in therapy for 5 years and tried MANY medications. I am currently on: klonopin, xanax, zyprexa, bystolic, and zoloft. I have tried MAOI's, anaphranil, and other ssri's and atypical anti-psychotics. I CANNOT stop the thoughts. It is 24/7 and it keeps me from resting and sleeping - both of which I need as badly fatigued as I am. The medications make me even more fatigued and sedated. I wish to be free of this ocd but don't know what to do though I have a good neuro (he is my first neuro ever) and my psych. is more than willing to work with him. I have extreme sensitives to medication along with bizarre paradoxical reactions to them. I am also on valtrex right now for positive coxsackie A and B. Next step will be genetic testing and then hopefully IVIG. I don't know what else to do. My family (excluding my mother and brother) think I am lazy and malingering but all my life I was hard working and overachieving until I became completely bedridden in 2009. I mostly feel like my brain is rotting b/c of how fatigued I am and even though I am so sleepy, I cannot just lie down and fall asleep. OCD becomes its worst when I try to rest or sleep. I merely just wish to connect with other patients and learn as I haven't met any other CFS patients with these problems. It seems foreign to most of my online friends. Thanks, Chris
