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I've had bladder problems since I was 8 years old. They just seemed to get worse and worse along with mental health issues (depression, anxiety) and major fatigue and pain issues. I was eventually diagnosed with CFS this year.
The IC has really ruined my sleep and as a result of going so much I've developed a phobia that I won't be able to sleep. It's called "psychophysiological insomnia". This phobia lead to severe unrelenting constant anxiety that has since latched onto other things. I used to think about sleep so obsessively that I wouldn't be able to sleep due to the anxiety. I have not found any help for this.
My biggest issue is that I have to go over and over before I feel "empty". I will go 5 times and there may be very little urine there but I feel so badly that I have to go. I don't have pain, I do have urgency, but at night the battle begins. For my sleep study I went 35 times before I could fall asleep, I can finally fall asleep once I feel empty but not before then.
It's weird that one moment I go and feel worse, the next time I might go and bam* I feel completely empty. Why does it take going over and over to get this empty feeling? Why does going one time versus another make the difference? I can also feel where the urine is in my bladder, or at least a sensation that switched and moved around.
I've tried: many oral meds (all the overactive pills, antihistamines, several of the tricyclic antidepressants including anafranil which helped some but gave me terrible sedation, lithium)……..etc., currently taking elmiron and toviaz and supplements such as prelief and cystoprotek. Tried diet (avoiding all acid), pelvic floor rehabilitation, bladder expansion through liquid 3 x's. I've done interstim with no relief, and I also did bladder installations at the urologist for 6 months then I did it for 6 months myself every other day. No relief with any of this. I saw a highly recommended urologist that didn't have much to add so I quit trying. I've said all this to finally resolve that one thing and one thing only has brought relief and that is antibiotics. I can't remember which ones but during my bladder installations I got 2 infections. I was treated with antibiotics for 2 weeks, at two separate times and my bladder was practically normal. I did not have to go 40 x's to feel empty, in fact I only went once or 2x's and felt completely empty, I slept better ever in my life. Doctors did not want to continue long term treatment and were not able to explain why I felt better. I never asked my urologist about this.
Side not: I am not sure if the CFS diagnosis is accurate and am questioning the diagnosis. I am currently completely disabled by fatigue, sleepiness, pain, and daily chronic migraines. The fatigue is so intense I feel as though I am dying and am scared to sleep, often times having panic attacks because I am sure that I will not wake up. My sleep is not refreshing in any way and in fact I feel as though I have not slept in many many days or even weeks, my brain feels horrific. Fatigue started 4 ½ years ago, diagnosed with IC, 7-8 years ago.
Sorry for the length and the possible wrong place of posting. I am currently taking anti-anxiety medication and an anti-psychotic for sleep.
The IC has really ruined my sleep and as a result of going so much I've developed a phobia that I won't be able to sleep. It's called "psychophysiological insomnia". This phobia lead to severe unrelenting constant anxiety that has since latched onto other things. I used to think about sleep so obsessively that I wouldn't be able to sleep due to the anxiety. I have not found any help for this.
My biggest issue is that I have to go over and over before I feel "empty". I will go 5 times and there may be very little urine there but I feel so badly that I have to go. I don't have pain, I do have urgency, but at night the battle begins. For my sleep study I went 35 times before I could fall asleep, I can finally fall asleep once I feel empty but not before then.
It's weird that one moment I go and feel worse, the next time I might go and bam* I feel completely empty. Why does it take going over and over to get this empty feeling? Why does going one time versus another make the difference? I can also feel where the urine is in my bladder, or at least a sensation that switched and moved around.
I've tried: many oral meds (all the overactive pills, antihistamines, several of the tricyclic antidepressants including anafranil which helped some but gave me terrible sedation, lithium)……..etc., currently taking elmiron and toviaz and supplements such as prelief and cystoprotek. Tried diet (avoiding all acid), pelvic floor rehabilitation, bladder expansion through liquid 3 x's. I've done interstim with no relief, and I also did bladder installations at the urologist for 6 months then I did it for 6 months myself every other day. No relief with any of this. I saw a highly recommended urologist that didn't have much to add so I quit trying. I've said all this to finally resolve that one thing and one thing only has brought relief and that is antibiotics. I can't remember which ones but during my bladder installations I got 2 infections. I was treated with antibiotics for 2 weeks, at two separate times and my bladder was practically normal. I did not have to go 40 x's to feel empty, in fact I only went once or 2x's and felt completely empty, I slept better ever in my life. Doctors did not want to continue long term treatment and were not able to explain why I felt better. I never asked my urologist about this.
Side not: I am not sure if the CFS diagnosis is accurate and am questioning the diagnosis. I am currently completely disabled by fatigue, sleepiness, pain, and daily chronic migraines. The fatigue is so intense I feel as though I am dying and am scared to sleep, often times having panic attacks because I am sure that I will not wake up. My sleep is not refreshing in any way and in fact I feel as though I have not slept in many many days or even weeks, my brain feels horrific. Fatigue started 4 ½ years ago, diagnosed with IC, 7-8 years ago.
Sorry for the length and the possible wrong place of posting. I am currently taking anti-anxiety medication and an anti-psychotic for sleep.
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