In a flare again...

[ICLori]

Tried not to use pain meds last night but was peeing every fifteen minutes, it was awful. :( I am feeling really down now, wondering if I will ever get better or not on this. Didn't sleep well because I refused to take an Ultram, I was mad. I had some good days and then this.

Will I ever get better for good? Will I be one of the lucky ones who never needs any pain meds again? I hope so. But it's been about 8 weeks now and I feel like I ought to be all the way better, but I'm not. In fact part of me wonders if I was just imagining that I was getting better, because I want so badly to get better. I just don't know.

Anyway, in a flare today (even this morning my bladder feels icky) and feeling really down and depressed.

Blessings, hope everyone else is having a painfree day,

Lori

[sweetangel2080]

aaw, was glad to read last week you finally had some relief. Maybe it is diet related or that cyclosporine is beginning to help but not yet fully?

I am on elmiron and 5 months into it started having some good days but then flare still so feel like back at square 1.

The thing that keeps me going is I did have some good days, am not just imagining it so things ARE getting better....

[IcyAngel23]

Lori-
Sorry to hear you're in a flare. You have to expect flares for now but hopefully soon you won't have any. I know the bad days re the ones that make life seem rotten. Hang in there. You've been through some much before CyA and you need to keep up that strong mentality.
What I found to be just awesome for flares or pain is a hot tub with bath salts in it. I never had a problem with baths or soaps so it works for me. It's at my dad's house though and because of my evil step monster I don't want to live there. So they were gone all week and I had fun with the pool,hot tub,plasma screen TV,DVR,pool trable and a whole huge house to myself. It really melted away my frustration and stress. Take care girly

[ICLori]

Thanks, Sweetangel! I hope you keep getting better and better on the Elmiron! Thanks, Kristin! I'm not very good about being strong when I'm in a flare, LOL. I just get so worried that this isn't going to work right for me. I keep reading about how the majority respond well by the end of three months, and I'm thinking, that's only one month away for me - what if I still need Ultram almost every night, at that point?

I just hope I get much better, very soon...that's what I'm praying to God for...maybe it's too much to ask?

I'm so glad you are getting better, that really makes me happy, and I'm thankful for the tip you gave me - I'm guessing you used Epsom salts for the hot bath? Those are good for achey muscles, maybe it would work for IC too...

Blessings,
Lori

[SharonA]

Lori...You have been eating a lot of exotic stuff lately. Could that be the cause of this flare? Try eating on the Diet List and (you already know this, but I can't help myself :rolleyes: ) drink lots of water to flush that bladder out real good. :D

I so want you to get to where you are feeling good all the time. I hope this is just a hiccup on your way there. :kissing:

[ICLori]

Hi, Sharon, I've wondered that too, but I was eating those exotic foods about a week ago now, and I've noticed that I tend to react pretty quickly (within an hour or so) to foods, and that the flare from any foods usually subsides within 8 hours or less...I've wracked my brains and I cant' think of anything no-no I've eaten in the last couple of days...

I think it might partly be related to my menstrual cycle, and also maybe just...one of those things?

The good news is, I took some leftover Pamelor I had and this time instead of irritating my bladder, it took the pain away - interesting! I had this theory that those few of us who get worse on the tricyclics and other IC meds rather than better, have the most severe, end-stage cases of IC. That our bladders are so bad, we can't even tolerate narcotics.

Anyway, a gauge for me has always been, I know I am getting better when I can tolerate meds that I couldn't tolerate before, or foods I couldn't tolerate before. It's very exciting to me that Pamelor (tricyclic) helped today and didn't hurt. I looked it up to make sure that I could take it with the CyA without bad reactions or anything.

Sooo...if it continues to work for whatever pain I have, I can ask the doc for a prescription renewal for that, and hopefully it will work for whatever pain I do have from here on out. Docs seem much happier prescribing tricyclic antidepressants rather than pain pills like Ultram (at least in my experience) so I sure would be a happy girl if only I could get by with tricyclics instead of pain pills! That made me really hopeful when I reacted well to Pamelor today. It made me think - maybe this CyA stuff IS helping me some after all...

Blessings, and thank you,
Lori

[poetgirl]

Sorry you're not feeling well! :( That's a bummer since you were enjoying some relief in your symptoms lately. Hopefully this is just a minor setback and your flare will go away soon.

:pray: :grouphug:

[Babs RN]

Lori,
Hopefully this is one small flare on the way to loooong periods without them at all. I am glad you didn't have a reaction to the Pamelor especially since you have had so many problems with your bladder being irritable with so many others. I would take it as a good sign in my book. Many warm thoughts to you that this combo is your ticket to prolonged relief.

Hugs,
Barb:smile tee

[vm]

I remember whem Elmiron was first working for me I would feel good for awhile and then would get socked with a flare. It always scared me to death b/c I was so frightened it meant it wasn't working. I found that the longer I was on it the less intense the flares were and the further and further apart they got until they were months apart. I can't remember when my last flare was now. Maybe cyclosporine is the same way????? I hope so. :kissing:

[Trishann]

Hi Lori, If you had more better days then before, more likely this medicine is working for you. Sorry about the flare-up. Hopefully you will not get them as much. Lori, do you think there is a possiblity you are getting off the pain pills to soon. I understand of wanting to get off the medicine but I hope you don't continue to suffer from it. I hope you start feeling better and I don't feel strong on those days either, but I think that feeling is normal.

Don't give up on that medication yet Lori. Hope you stay with it alittle longer to make sure if this medicine is working.

Sending Hugs, Trishann

[ICLori]

Thanks, guys! I've heard others still have flares until a certain time, so maybe that's what it is...I'll stick with it, at least until I reach the six month mark, and if I'm still sure it's helping me by that point, I'll stick with it even more.

Blessings,
Lori

[Bozema]

Hi Lori-

I'm so sorry to hear you're in a flare again. I'm still battling the flare I've had for the past couple of weeks, though I think it might finally be subsiding a bit. Like you, I always worry that this drug is not working when I flare like this. I think it's a natural reaction for us to feel this way. Monday will be the beginning of Week 10 for me and I'm beginning to wonder when it will finally kick in. I know it did last time, but it's sure taking its sweet time this time. It may be because I'm working full time again so I am pushing myself harder now than I was before. It's not helping that we have a bit of a crisis going on at work and I'm putting in some overtime at the moment.

As I said before, last time when it worked, it sneaked up on me with flares that were gradually milder and shorter until they finally disappeared. Since this flare is two weeks old, I don't think I've quite reached that point yet. That said, I'm still at work and making it through the day. So that's maybe the best I can do right now.

Anyway, hang in there and keep your chin up. We still have a way to go.

-Laurie

[ICLori]

Thanks, Laurie. I'm so sorry you are still in a flare. Well, the more time that goes by, the closer (hopefully) we will get to being in remission, that's how I like to think...I think it's been 8 weeks for me now....

Oh, I took a 2nd dose of Pamelor and that second dose gave me bladder irritation a bit, but not as bad as before...so Pamelor still isn't the best med for me I guess. Sigh. Was really hoping to not need Ultram anymore. Maybe someday...just have to be patient.

Blessings,
Lori

[IcyAngel23]

Well i had a small victory last night.I went to a concert and only used the bathroom twice in 3.5 hours. Now that is really awesome for me. Some may do that normally but I just wanted to spread some good news to keep everyone's spirits up. Laurie sorry you're flaring right now. Hugs from chicago
Lori- way to stay positive. Keep up thew good fight.

Take care

Kristin