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  • tigger_gal
    replied
    yep jake helpes alot, but my depression is from the pain. ggrrr I hate to admit, that I have to take a vicodine and a flexeril in the morning to function with a level 5 pain.
    Is your pain more with urgency or is it all the time. I'f it is urgency pain and frequency, you may consider looking into the interstim. Also did you know there is a new implant for pain? its called the bion. I am guessing your pain is all the time (((hugs))) when I start to flair I will take 2 urised right away, and take them 3 times a day until it goes away.
    sending you hugs and hope your pain goes away soon.

    Leave a comment:


  • Hollyd
    replied
    Hi Eva,

    Thanks for your response. How are you doing since your bladder removal?

    Holly

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  • Texas Baby
    replied
    Holly,
    I am so glad you are seeking support from this board. It has helped me in the past especially when I was at my lowest. I was bedridden from Nov. of last year to Feb. of this year. I ended yo having my bladder out. I know what you mean about the pain. Some days it was almost impossible to function even for the simplest task, such as taking a shower. My heart goes out to you!
    I hope you have a good weekend!
    Blessings & Hugs,
    Eva

    Leave a comment:


  • stac7_8
    replied
    Wow, I have never heard it explained that way. That was so imformative and wonderful. I understood it and that is the best part. You went from A to D and didn't skip B and C. Thank you so much!!!

    Leave a comment:


  • vm
    replied
    GREAT post, Ann!

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  • Hollyd
    replied
    Thanks Ann and Briza:-)

    I've read that treating neuropathic pain is pretty much in its infancy. Combine that w/ little understanding of IC and we're really in a bind aren't we?

    Last night I was reading Moldwin's book where he gives some of the possible explanations for the pain in IC. I hadn't understood that nerves could be damaged by the bladder being compromised in ways that aren't specifically nerve related. That one is still a bit confusing to me but you've explained it a bit further. When I think of nerve pain I think of things like the pinched nerve I had in my neck once. I guess I think of it in more mechanical and direct ways.

    I know the Tramadol (Ultram) I take is not a true opiod but acts on opiod receptors which I believe is pretty much the same thing as far as the brain knows. I get tolerance very quickly w/ this drug, just as you can w/ opiods.

    I guess the first line of drugs for neuropathic pain are the tricyclics. I get severe retention w/ elavil, don't know how I would do with the others. Right now, being on Trazodone for sleep b4 this started and having pain and frequency relief during the night, I've just started giving it a try during the day. I really hope it works. If it doesn't, I guess I'll have to trial nortriptyline next. Not a nice drug. :-(.

    Thanks for taking the time to explain this further.

    Leave a comment:


  • Ann228
    replied
    HollyD,

    I think Briza gave a good explanation of how elmiron works to cover the exposed nerve endings by rebuilding the bladder lining. I work in neurology and this system is the least understood and most complex system of the body. It has multiple functions including alerting us to pain. I work in neurology at a hospital. I find the nervous system so interesting because it is so complex and hard to understand.

    Pain is very complex but it is the nerve endings that start the pain signal back to the brain. The brain then alerts you that something is wrong and tells you it hurts. There are also chemical receptors and reactions involved in pain but it all works back to the nervous system which begins in the brain. There are hundreds of nerves in our bodies that all branch out to hundreds of tiny nerve endings everywhere. The damage may not necessarily be the nerve endings themselves but irritation to some body tissue like bladder lining or muscles. When tissue is damaged/irritated the nerve endings surrounding the area are responsible for alerting your brain something is not right.

    The nervous system is also responsible for telling our bladders when we need to urinate by controlling the bladder muscles. This complex reaction, which is controlled in the brain and sent through the system of nerves, gets all mixed up in IC and we have frequency and urgency with the pain. The muscles get all tense and don't fucntion properly because they are receiving mixed signals.

    Narcotics block pain signals high in the nervous system in the brain. They bind to specific chemical receptors in the brain. In turn the brain tells you that you don't hurt because the signal there is blocked. Other drugs work lower in the nervous system blocking the pain there. Some drugs, like valium, tell your brain to relax the muscles of the body and stop being so tense. That is why muscle relaxants are usful in IC.

    There is a natural defense system that starts when you get something like a cut. It starts a reaction and certain chemicals rush to the site to stop the pain signal and heal the injury. This usually works for things like cuts, bumps, and bruises but is not powerful enough to stop the pain like in IC.

    I am not saying that IC occurs because of nerve damage just trying to explain the complex reactions involved in pain. There are sometimes multiple issues involved in IC and other pelvic pain issues. Our bodies are very individualized in how they work and how they react to certain meds. That is why some women have more difficulty finding relief from IC.

    I hope this helps you and maybe others to understand how pain occurs in our bodies a little better. I also hope that you will find relief soon and get to feeling better.

    Leave a comment:


  • Hollyd
    replied
    Is IC pain all neuropathic pain?

    I'm still trying to understand this. I read that the purpose of elmiron is to create a coating on the bladder wall because of things like glomerulations on the wall, to try to heal it. That doesn't sound like nerve pain.

    How does the nerve pain come into it? How do you know if it is indeed nerve pain? I know a first line of treatment for neuropathic pain and IC is elavil - but I'm unclear on how nerves are involved or what types of pain signal that it is nerve involvement. Considering that we don't all get better on the tricyclics, I guess I, as well as you and the docs and the researchers aren't too sure or there would be drugs that put us into remission, even if they were different drugs for different IC'ers.

    Leave a comment:


  • Hollyd
    replied
    Originally posted by ICNDonna View Post
    How long have you been taking all of those supplements? One thing you might discuss with your doctor is temporarily stopping all of the supplements, then going back on them, beginning with just one for at least several days before adding another. I'm not familiar with all of the ones on your list, but I do know that licorice root can be a problem for some people.

    You might also talk with your doctor about trying elmiron and possibly a smooth muscle antispasmodic.

    I just hope you find some answers soon.

    Sending healing thoughts,
    Donna
    Hi Donna,

    What are the names of the smooth muscle antispasmodics? Valium seems to help somewhat w/ the PFD type pain but not the other. I hope you're not talking about pyridium because you can't get that in Australia grrrrrrr. I think I have to call the govt. office to see if they'll let me import it but Aussie docs might not want to prescribe it for me.

    I let a week pass b4 adding any new thing. I've done it very methodically. This is true for everything but the fish oil and zinc. I have to take zinc or I get deficient and I can't imagine the fish oil being a problem. I even stopped my iron until I found out that bufferred C should be okay. I didn't notice any worsening when I reintroduced it.

    While on everything I had a week of no pain (if I continued to do very little)...so there was improvement for whatever reason so I don't think I'm on any irritants. I think the good week had to do w/ my cycle. though prior to that I haven't had any good days at any time of the month since my hydro/cysto D&C so it's hard to know what caused them, I would sure like to repeat that experience.

    thanks

    Leave a comment:


  • Hollyd
    replied
    Originally posted by tigger_gal View Post
    Hi Holly,
    You can ask about Elmiron, Hydroxizine and an anti spasm med. I have IC, Fibro, myofascial pain, and a few other things. I would get up get the hubby to work and my daughter to school, and then back to bed.. When we got Jake I was pulled right out of my bed, and it was the best thing that happened to me. Not saying that it would work for you, but I wish they could manage your meds so you don't feel like being in bed all the time. I take a muscel relaxer that helps me alot. I also got on wellburtin xl to help with the depression.
    hope you are having a great day.
    Hi Tigger Gal,

    It's not depression that keeps me on the couch, it's pain. having to take an hour ride ea. way to the pain doctor and then another appt. the next day where I did a little walking had me in excruciating pain even the next day and today is not looking like it's going to go very well.

    I'm glad having a child helped w/ your depression.

    Leave a comment:


  • Hollyd
    replied
    To Kathi

    Thanks:-)

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  • Kathi
    replied
    Just sending you gentle hugs. I hope you get some relief very soon. Kathi

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  • Ann228
    replied
    It is good that you are seeking support here. It really does help. I have found a lot of helpful info by reading the boards.
    I agree with Donna's advice about the herbal supplements. I tried some and they definitly made me worse. I would definitly ask about the Elmiron, too. The smooth muscle antispasmodics are another good idea because they work specifically on muscle tissue like the bladder has. They are usually won't make you sedated, either.
    Will the doc up the dose of the extended release Ultram? I take 300mg a day but don't get sedated like with the regular ultram.
    How about a seizure medicine like Neurontin (gabapentin) for the burning pain? The seizure meds work for this type of pain because it results from damage to the nerve endings. They calm down the nerves and help block the pain signal to the brain. There is a new med that works for this pain called Lyrica (pregabalin) that has had good results for some women, too.

    Try writing down some of the suggestions everyone made and talk to your doctor about these options. I am hoping that you will get some relief soon. It can take a while so try not to get too discouraged.

    Leave a comment:


  • ICNDonna
    replied
    How long have you been taking all of those supplements? One thing you might discuss with your doctor is temporarily stopping all of the supplements, then going back on them, beginning with just one for at least several days before adding another. I'm not familiar with all of the ones on your list, but I do know that licorice root can be a problem for some people.

    You might also talk with your doctor about trying elmiron and possibly a smooth muscle antispasmodic.

    I just hope you find some answers soon.

    Sending healing thoughts,
    Donna

    Leave a comment:


  • tigger_gal
    replied
    Hi Holly,
    You can ask about Elmiron, Hydroxizine and an anti spasm med. I have IC, Fibro, myofascial pain, and a few other things. I would get up get the hubby to work and my daughter to school, and then back to bed.. When we got Jake I was pulled right out of my bed, and it was the best thing that happened to me. Not saying that it would work for you, but I wish they could manage your meds so you don't feel like being in bed all the time. I take a muscel relaxer that helps me alot. I also got on wellburtin xl to help with the depression.
    hope you are having a great day.

    Leave a comment:

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