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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 6 of 6. This is the beginning of the thread.
Posted by fairywings on June 25, 2006, at 8:26:18
Anyone else out there with IC? I've had it 18 years +, and have made some interesting associations over the years. I also have thing that have helped if anyone has it and is feeling overwhelmed.
fw
Posted by llrrrpp on June 25, 2006, at 9:59:29
In reply to Interstitial Cystitis, posted by fairywings on June 25, 2006, at 8:26:18
No, FW, don't have IC, but I recurrent UTI. Most unpleasant. Excruciating. What is your thing that helps? Is is psychological?
I take D-mannose and massive doses of Vitamin C and have a preventative antibiotic... But this is for the health board, not the psych. board.
I'm so curious- what are your associations and such?
thanks,
-ll
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.
fw
Posted by llrrrpp on June 25, 2006, at 11:54:08
In reply to Re: Interstitial Cystitis **triggers** » llrrrpp, posted by fairywings on June 25, 2006, at 11:34:38
Wow FW,
That sounds like a lot of sufferring. I'm so sorry that you have to deal with this. I'm glad you've found something to give you some relief (baking soda). I don't know what PGA and PSAS stand for, or IB. I have mushy brain right now, otherwise I'd google it myself.Have you done any mind-body awareness stuff, or CBT to help you cope with chronic pain?
I have been learning one particular technique for dealing with chonic pain from tendinitis, that has helped my tendinitis to heal (FINALLY) and also helped my health in general. When I'm only moderately depressed, I find that this particular exercise in mindfullness and conscious choice really helps me find areas of maladaptive muscle tension, identify them, and gives me a strategy to change my habit of holding tension. For example, I found that my tendinitis wasn't affecting just my arm, but that my whole posture had rearranged itself in a way that was hindering my range of motion, and in fact preventing me from healing. I wonder if a similar adjustment in posture may explain part of the connection between IC and CMPS?
If you would like more information on this technique, please B-mail me. I do not want to post about it publicly, because it might identify me.
Thanks,
-ll
Posted by B2chica on June 26, 2006, at 10:00:15
In reply to Re: Interstitial Cystitis **triggers** » llrrrpp, posted by fairywings on June 25, 2006, at 11:34:38
hi fw, so sorry you have to deal with this. it must be terrible. lots of hugs to you.
i don't have anything to help to say but i wanted you to know i thought of you the otherr night...(can't remember when) but there was a 20/20 or primtime special on about PSAS. that's the first time i've heard anyone talk about it publicly (as if it's an actual problem...funny how women's issues take forever to get to this point). i couldn't believe my ears when the one lady said she went to her doctor (an OB EVEN) and she told him about her problem and his comment was she was every guys dream!!! can you believe that?!! how HORRIBLE!
well, i hope that special opened some eyes and maybe increase research on this issue.best wishes to you FW.
-cares
b2c.
Posted by fairywings on June 26, 2006, at 15:50:07
In reply to Re: Interstitial Cystitis **triggers**, posted by B2chica on June 26, 2006, at 10:00:15
Hi B2,
Thanks for your thoughts.
Yeah, that woman is one of very few who've ever come out publicly. I think there are only about 400 known cases worldwide.
My T, pdoc, and gp have all been great, but my OB made a big joke out of it till I broke down in tears. She wanted to know if it was a turn on for my husband, among other things! I guess she thought I was kidding.
I'd never go public, but I bet in 5 years it will be a lot more well known.
fw
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