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Re: Interstitial Cystitis **triggers** llrrrpp

Posted by fairywings on June 25, 2006, at 11:34:38

In reply to Re: Interstitial Cystitis fairywings, posted by llrrrpp on June 25, 2006, at 9:59:29

Sorry if this is choppy, endless, or disconnected. I was up most of the night.

Yeah, the treatments are probably more for the health boards, but the psychological damage is definitely for the psych boards. If I hadn't gotten the IC under control, I know I wouldn't be here now. IC is the worst thing I've ever lived with. The feelings NEVER went away, not for one minute. I didn't sleep, I was emotionally and physically exhausted, and beside myself with despair. I'm amazed my husband stayed with me through it. I wasn't able to ride in a car more than 5-10 minutes - and even that was miserable, sex was unbearable, I couldn't walk more than 20 - 30 yards - even though I looked perfectly healthy and otherwise was, I didn't want to go anywhere but couldn't sit still.

What I've found that helps me most when it flares up now is drinking 1 tsp. baking soda, in 4 oz of water. How often I drink it depends on how bad it is at the time. It's been a lifesaver. Pyridium - which you can buy over the counter works well for the spasms.

What I've realized is there's a link between IC, chronic myofascial pain syndrome, and PGA or PSAS. I known for a long time that there's a link between IC and PSAS, but didn't realize there was a link between IC and myofacial pain till last night. The IC has kind of evolved into the CMPS and PGA for me, which seems kind of odd, but the CMPS doesn't surprise me at all, since there's a muscle tension thing going with all of it. IC is also linked to IB, migraines, fibryomylgia.......

PSAS, or PGA, is as new now as IC was when I first had problems with it. There's just very little helpful information out there, but mark my words, in 5 years there will be a lot of information, and all the links will all have been established.

I don't envy you the chronic UTI's. Really s*cks, but good you've got a doc who recognizes the need for prophylactic antibiotics. Massive doses of Vit. C, even small doses, would cause IC to flare up in me.




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