
Interstitial Cystitis (IC) Support Group
Interstitial Cystitis (IC) is a urinary bladder disease of unknown cause characterised by pelvic and intense bladder pain, urinary frequency (as often as every 10 minutes), and pain with urination. It is not unusual for patients to experience nocturia and pain with sexual intercourse. IC is also known as painful bladder syndrome (PBS), particularly outside of the USA.

deleted_user
anyone have any suggestions on how to get more energy?

deleted_user
Girl I don' t know I thought I was just being lazy and not wanting to do anything. But I am guessin it just happens. I don't want to do anything anymore but sleep. It is strange how can people that are young like us be so tired. I don't like when people come over anymore or my bf wants to go places past 9pm. B/c I want to go to sleep. I am guessing maybe the lack of caffeine and sugar is my problem.

deleted_user
I agree. I am always tired too. I try and take a cat nap in the evening, so I have a little energy when my husband gets home from work. Without the nap, it is almost impossible for me to function. I find I do my best when I allow my self to lay down for a little while. Yes, I do feel lazy at times, but chronic fatigue is a part of this horrible disease. We have to learn to live with it, and work around it. Good luck!

deleted_user
PLEASE anyone with a real answer to this-help. I can not do the sugar, or caffeine. Is there an herbal supplement? I know to avoid Guarana, MA hung, anything with ephedra, etc. And Ginseng is just not strong enough! Help! Really! I have too much work to do!

deleted_user
Are you sleeping at night. Ive had BAD insomnia like going to bed at 10PM & falling asleep between 4-5 am even w/ sleep meds. Just wondered if trying some OTC sleep meds might help?

deleted_user
I am trying to figure out how to get more energy, too. I started taking a lower dose of amitriptyline a few days ago, and have seen some improvement. It is an anti-depressant, but is also used to work on the "nerve endings" so things don't hurt as much. It is sometimes prescribed for chronic pain. I take it at night before going to bed and it makes me sleepy. Even if I have to get up at night with the IC, I am going back to sleep quicker with this medication. My best night since being diagnosed with IC (three months ago) was last night. My husband bought a heated mattress pad for our bed (with dual controls so I could only have heat on my side of the bed). The heat helped and made me feel and sleep much, much better last night. I am not sure it would work for everyone, but this is currently helping me. I still have some fatigue but overall things have been much better since trying these two things.

deleted_user
Where did you find the heated matress pad? that sounds like a great idea! I am such a heating pad addict right now that the idea of having a HUGE one sounds perfect! What a great idea.

deleted_user
My husband bought the mattress pad at comforthouse.com. They were having a 1/2 price sale over Memorial Day Weekend. Other websites may have it for sale, too. It is made by Chattam & Wells. The pad was on the expensive side for a mattress pad, but it works well for me and I am glad he spent the money. (It is hard to say if it will work as well for others, but for me it has been a good thing to help me relax and get to sleep.) Sometimes I lie on my stomach so the heat will get to my bladder. Other times it feels good - especially on my lower back area. I like having such a large heated area. It has 2 controls, so I can heat my side of the bed and adjust the heat to my needs. My husband could also heat his side if he chose to do so. They call it "The World's Safest Warming Pad!" It warms the bed with low voltage (only 14-18 volts) in comparison with other electric pads or blankets that are 120 volts. It doesn't feel hot to the touch, but warms you when you are actually lying on it. I am already addicted to this pad! It is flat, so you can't hold it like a regular heating pad. You could still bring a heating pad to bed, though, if you wanted to use both.

deleted_user
I too sleep with a heating pad wrapped around my stomache and back. It helps, but not much. My doc has increase the strength in my ampitryptaline and I can NEVER get to sleep. I halucinate b/c my meds are so strong... I have to literally lay in bed and force myself to keep my eyes shut til I fall asleep hours later... then my hubby will come to bed... As for the energy... I've not figured it out either. I had to quit my job so I'm at home all day and I still feel bad for making my husband, who has worked all day, make dinner for us...
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