I'm worried beyond belief

**jimmiesgirl** · 03-22-2006, 04:01 PM

I am running out of options~ I have run out of rx's to try non are helping and now the DMSO instills have been a nightmare, the pain is becoming debilitating any suggestions!

***kadi*** · 03-22-2006, 04:40 PM

What have you tried?

**tigger_gal** · 03-23-2006, 03:43 AM

what about flexeril, and ditch the Skelaxin. all Skelaxin is, is a glorified motrin, that which in turns bothers alot of icers.. I take 20 to 30 mg of flexeril a day.. alos ask about taking ambien at night to help you sleep. is your pain urgency pain? if it is you may consider surgical options.. when I got my interstim, it helped the urgencey pain. but not the bladder pain..

***ICNDonna*** · 03-23-2006, 03:49 AM

You might consider asking your doctor for smooth muscle antispasmodics, such as hyoscyamine or urispas. How long have you been taking elmiron?

Another thought --- if you are on a municipal water supply with clorinated water, you might give bottled spring water a try.

Donna

**jimmiesgirl** · 03-23-2006, 04:38 AM

Originally Posted by kadi

What have you tried?

Please see the list under my signature thanx

**jimmiesgirl** · 03-23-2006, 04:39 AM

Originally Posted by tigger_gal

what about flexeril, and ditch the Skelaxin. all Skelaxin is, is a glorified motrin, that which in turns bothers alot of icers.. I take 20 to 30 mg of flexeril a day.. alos ask about taking ambien at night to help you sleep. is your pain urgency pain? if it is you may consider surgical options.. when I got my interstim, it helped the urgencey pain. but not the bladder pain..

Actually I have both bladder pain and pressure but the urgency pain is the biggest complaint besides the excessive swelling of my belly!

**jimmiesgirl** · 03-23-2006, 04:40 AM

Originally Posted by ICNDonna

You might consider asking your doctor for smooth muscle antispasmodics, such as hyoscyamine or urispas. How long have you been taking elmiron?

Another thought --- if you are on a municipal water supply with clorinated water, you might give bottled <a style='text-decoration: none; border-bottom: 3px double;' href="http://www.serverlogic3.com/lm/rtl3.asp?si=22&k=spring%20water" onmouseover="window.status='spring water'; return true;" onmouseout="window.status=''; return true;">spring water</a> a try.

Donna

Been on the Elmiron since late December or early January, yes I only drink bottled water! !~thanx~

**BellaTutu** · 03-23-2006, 04:47 AM

are you currently on every med below your signature or are those meds you've tried and didnt work?

Sometimes some of us try everything out there and nothing works - its not fun, but its a reality that we must face and accept sometimes, sorry to say

The swelling can be caused by IC -I call it my "ic belly" - it comes and goes and there is nothing really you can do for it - IMO - it will just go away on its own.

Wish there was more I could offer....I do hope you feel better soon.

**jimmiesgirl** · 03-23-2006, 05:30 AM

I am currently on all meds not just for IC but other medical reasons as you can see I'm a walking medical nightmare!!!! LOL The Elmiron was working but was making my Gerd and Colitis worse and hair was starting to fall out

I am just in constant pain and that pressure never goes away!

**Dixiefireball** · 03-23-2006, 05:54 AM

which dmso installments are you using? the one that has that garlic smell to it? or is it the rescue treatments with heparin? some people get them confused. Its very important to know for sure.

I wanted to ask you have you tried a nerve pill a.k.a like a low dose of klonopin i started off on 0.5 mg so that it didn't make me as sleepy. at one time i was up to three a day then i went down to only one at night-time. they help relax my bladder. (can't take a lot of the anti spasm medicine because of dyes.) make me sleep at least four to six hours at night which is a blessing for any icer.) keeps my pain medicine in my system for a longer amount of time also.
Just a thought if you haven't tried something like this to ask your Dr. about it. I see you have a lot of medicines that already make you sleepy, but you may be able to replace a few of them for one. Wouldn't that be a nice trade in for your health, pocketbook, plus get some relief. IF it will work. Never hurts to ask......
hope this helps you a bit. I'm so very sorry your suffering so!

I couldn't take the dmso either. Matter of fact Jill has a GREAT Thread on how dmso are causing more harms to our bladders then good. (sorry I don't have the link on hand, but its somewhere on the boards.) however the heparin rescue treatments are a lot safer. Yes granted they didn't feel to good at first but after I kept at them for a while i went into remission. I now do them at home been doing them for over two years now.
I also use marcaine instead of the lidocane. marcaine is a lot safter plus the numbing effect last longer.
While doing your treatments what type of cath did they use on you? if they use the latex it could very well but the latex causing you all these problems it sure did me, and I never knew i had a latex allege. matter of fact its only down stairs it effects me this way.
hope some of this info. helps you in some way.
sending you hugs and prayers
Rhonda

**SandyRN** · 03-23-2006, 06:31 AM

Holy cow....you and I could be sisters! I'm so sorry you're having a hard time. Tigger is right, skelaxin isnt much help for us ic'ers, and as far as I'm concerned, its not much help for fibro either. I take Soma during the day, and Zanaflex at night. Without this combo I'm in major body and bladder spasms....and even with it I still have them sometimes.

I see you take prevacid...have you tried Nexium? I went through ALL the acid reflux meds out there including prevacid, prilosec (both OTC and RX), and never felt ok til I took Nexium. The nexium MIGHT allow you to take the Elmiron again because it works to coat the esophagus and stomach, and now they prescribe it preventitively (sp?) for people who take high doses of NSAIDS.

Just a thought.....

I'm not sure what dose of hydroxyzine you're on, but you might ask your doctor to increase that dose. I take 75 mg at night, and while that sounds like a lot, my body has adjusted well to it, and it has helped to relieve some of my IC symptoms....I still have a lot of problems when I'm upset or stressed, which I am right now, but before all this upheaval I was feeling a lot better.

I also do instills of heparin, lidocaine, and sodium bicarb, and they are an absolute Godsend to me. I've never done DMSO and probably never will. I dont need something that hurts before it helps.

If you've got any questions, please pm me....we've got a lot in common....close to the same age, with kids, and similar health problems.

Take care,

Sandy

**jimmiesgirl** · 03-23-2006, 07:35 AM

Originally Posted by Dixiefireball

which dmso installments are you using? the one that has that garlic smell to it? or is it the rescue treatments with heparin? some people get them confused. Its very important to know for sure.

I wanted to ask you have you tried a nerve pill a.k.a like a low dose of klonopin i started off on 0.5 mg so that it didn't make me as sleepy. at one time i was up to three a day then i went down to only one at night-time. they help relax my bladder. (can't take a lot of the anti spasm medicine because of dyes.) make me sleep at least four to six hours at night which is a blessing for any icer.) keeps my pain medicine in my system for a longer amount of time also.
Just a thought if you haven't tried something like this to ask your Dr. about it. I see you have a lot of medicines that already make you sleepy, but you may be able to replace a few of them for one. Wouldn't that be a nice trade in for your health, pocketbook, plus get some relief. IF it will work. Never hurts to ask......
hope this helps you a bit. I'm so very sorry your suffering so!

I couldn't take the dmso either. Matter of fact Jill has a GREAT Thread on how dmso are causing more harms to our bladders then good. (sorry I don't have the link on hand, but its somewhere on the boards.) however the heparin rescue treatments are a lot safer. Yes granted they didn't feel to good at first but after I kept at them for a while i went into remission. I now do them at home been doing them for over two years now.
I also use marcaine instead of the lidocane. marcaine is a lot safter plus the numbing effect last longer.
While doing your treatments what type of cath did they use on you? if they use the latex it could very well but the latex causing you all these problems it sure did me, and I never knew i had a latex allege. matter of fact its only down stairs it effects me this way.
hope some of this info. helps you in some way.
sending you hugs and prayers
Rhonda

Thanx sweetie yes I asked him and the DMSO is the straight up kind that leaves the horrible garlic smell, my hubby stays away for a day or two!!!!!! How long did u do these for before saying enough was enough? I just cannot imagine doing any sort of instill on myself it freaks me out to douche since my hysterectomy! LOL I have no idea what catheter they use it looks so big though, I just hate the whole treatment, I hurt for a whole week after and cannot stand knowing 50% straight solution is going into my bladder! I added you to my yahoo did u see me?

**Dixiefireball** · 03-23-2006, 02:09 PM

Hon it only took two installment of the garlic smelling dmso the pain was unreal! and since the new study came out that those treatment are really doing more harm then good to our already sick bladders I'm glad I didn't do more of them.
Try to find that thread Jill posted on how dmso can do more harm then good to our bladders and take that into the office with you.

I remember now talking to you before about these installments. Please hon if there hurting you this badly enough is enough. Yes granted we all want a quick fix. and all treatments take time to work, but we shouldn't have to suffer twice as bad either. Talk to him about switching you to another installment if not you may have to go to another town over to find treatment. He needs to have more of an open mind to help you.
Sending you hugs and prayers
Rhonda