Roxy:'

I used to go on the Interstitial Cystitis websites (all those years ago), I use to read everything I could get my hands on.

I also always thought I had numerous bladder infections because the symtoms are so similar. I remember once, going to the emergency room, demanding that they give me a urine test, telling the doctor "I must have some really bad infection, because the pressure down there is driving me nuts". He took a urine sample, came back and said 'no, you don't have an infection". I thought he was nuts. I said 'what on earth do you mean, of course I have an infection,". and he explained. "everybody has bacteria in their urine, you do not have enough to make it an infection.

So the next week, I went to another urologist who did the trans vaginal thing, I mean, I must have had every test in the world for this bladder thing I had. I only got relief when I went to bed. As soon as I got up, Bam, there it was again. Nearly drove me out of my mind!!! They gave me tylenol with codeine but it did nothing because I didn't have pain, I had the pressure (which to me, is just as annoying as the pain).

I would always think it was an infection because, after all, I'm a diabetic, and diabetics get bladder infections, right??? well, not this tootsie.

Oh yeah, once in a great while (I think two times), I actually had a bladder infection. The second time, I didn't even know I had a bladder infection. I had no symptoms whatsoever. This was around 3 years ago, and during a regular physical, they took some urine, and the doctor said "oh, you have a bladder infection, here is some Cipro and he gave me the pills. I would have never known it. Now this was years after the pressure down there went away. I also used to have muscle spasms in my chest. For years. They went away too.

So now, I can only believe, that these were bladder spasms. I distinctly remember the night it went away. That day, I went to my doctor and said "please, you must give me something, I'm going crazy with the pressure down there". He prescribed muscle relaxer. I got the prescription filled.

I took the bottle home, (I was going to take it before bedtime). Guess what happened??? I went in the hot shower and let the hot water just run over my body. The pressure went away and never came back.

Boy, what stress does to my body, my god!!!

Anyway, I 'm happy that at least you got some meds and they help you.

mel

P.S. Tell me again, why your doc says "it looks like IC". How do they tell the difference between IC and bladder spasms??? I would love to know!!!

Muscles can also fail to function (as a result of nerve malfunction) while not visibly atrophying. So many ways nerve damage can affect muscles and other systems.

Roxie, you say "last time." Does that mean that you had B12 tested before, and if so what was the result and have you taken B12 since then?

rose

HI Mel!
Good to hear from you!
I think the bladder spams is just part of the symptoms of IC......I had bad spasms for years.....it was awful. Then my husband (my present husband, Mike) saw a book about trigger point therapy, by Bonnie Prudden. I have several trigger points we went thru a ritual every night using a heat vibrator, Ice packs and then Biofreeze. After doing this for a cpl months......every night......my spasms finally subsided! I was thrilled. Now if I start having even a twinge we start over for a week. I have a great husband!
I'm SO glad your spasms ended like they did. Spasms are SO painful!
I don't get uti's much......but used to always feel like I did! I've had more uti tests than you can shake a stick at! The Elmiron and Freeze dried Aloevera have really helped my IC.
I've had IC since I was 19 yrs. old. I first had symptoms after I gave birth to my son. I had a stressful marriage.....too young and imature! Live and learn! so I know what stress does to a body! lol
I'm taking Lyrica but I'm in real pain today....and tonight. I'm going to see my dr. on Monday and see what he can do to help with this pain. I'm tired of it! Take care! Roxie

HI Rose, Since I've had Gastric Bypass surgery I have to have all my levels checked every 6 months. The B-12 levels have always been with-in range that the lab sets. So I've never worried about my B-12. My Carnitine level was low last month when it was checked by my Rheumatologist so I started Carnitine supplements and Vit. D. Roxie

Roxie:

Listen to Rose. She knows what she's talking about re the B-12. Look at her website. It's all there.

And thank god, you're getting help with the IC. I will never forget those bladder spasms. UGH!!!

Mel

Hi there
 

And welcome back,i had ic since i was 19,they spasms are awful. Ha then
after many Drs. I got the same book it did help. But Rose is right on the
nose and here they go again. Boy my feet ,toes hands and shoulder oh
don't those wrists hurt. I couldn't take your med brroke me out with
hives. Do you get along with your Dr. call and tell him--her your hurting.
:hug: :hug: :hug: Good luck to you, Sue It's raining here in Columbia Mo
that usually doesn't help.

HI Shiney Sue!
I can relate...my hands, wrists, fingers, legs, hips.......you name it......hurt today! It's awful! I just took my night time dose of Lyrica and hope it, with my Elavil helps keep me asleep tonight.....other wise it's going to be a very long night!
I've been in Mo. My ex husband and his family lived in Springfield, Mo. for quite a few years when his dad was going to the BBC there. I've been to Springfield and Kansas City, Mo. a cpl times...it was summer and man was it ever hot there! LOL I lived in Nebraska back then. Now I live in Houston, TX and know all about hot weather! LOL have a good evening! Roxie

Hi Roxie, I found a lot of relief with Tramadol slow release, i think the normal limit is 200 mg x 2 per day [ every 12 hours ].
Also at one time i was 6 Celebrex a day, it was 2 tabs after each meal, that also helped too, might not be Celebrex but one of the others anti inflamatory may help.

HI Brian! Thanks for the thumbs up about Tramadol. I'm going to talk to my dr. tomorrow becaues I can't take this pain in my arms and legs any longer! Where is your pain?? Mine is shoulders, arms, hands, legs and some times feet. I'm really tired of this pain.....it wears me down. Roxie

Roxie,

Have you stopped taking B12 at least a few days before test samples were drawn?

rose