Who has everyday pain?

[MakinIT]

Hmm...odd rxn...I took Atarax for a loong time but I stopped b/c I was trying to cut down on exhausting meds...Atarax is like an anti histimine, I believe. You are generally scribed it if you have mast cells in your biopsy (the type of IC that shows you have auto immune, so you have a high level of luekocytes? that are IgM type...I think...those are the ones that cause an allergic reaction and make your bladder crazy if you have that type.) Vicodine is a fine drug for pain. It may be all you need and that's good. Stay with that and use it when you need. Percocet is a stronger version...has more morphine. So Docs prescribe that for many of us and that is what is used either for pain relief or for break through pain. (like, I take MS contin Extended Relief...means I take 150 mgs every 12 hours to keep a constant dose in my body.) But sometimes the MS contin isn't cuttin it and for some reason my pelvis is just going bananas so I have to take something for breakthrough. (I take Oxycodone). Yes, I have a rather high medication (narcotic) load but it has taken 4 years to get to this point and I fight every increase. I haven't had an increase in long time....(well, I did in November but prior to that it was 2 years).

Look up the meds, it is interesting and you go into the doctors office with your eyes open a little more. : ) I hope you don't need anything stronger than you take. Look up atarax and see what alternates you can take, because that is an important drug if you don't have other meds or vitamins/supplements to help you keep it that bladder calm.

Tracey

[SandyRN]

MakinIt, percocet is oxycodone with tylenol...not morphine. I'm thinking you knew this and just typed it wrong, but wanted to make sure other's knew the difference.

Sandy

[MakinIT]

Yeah...I did...thanks for pointing it out. Brainfart.

Hey...I see you take prednisone on a regular basis,,any issues for you on that? I become a raging maniac (and fat to boot....think Incredible hulk with the wieght minus the muscles and double the rotton and unpredictable mood) I've tried to put a new antidepressant into my regimine but I started gaining weight immediately, despite my daily workout at the gym. I can't gain weight b/c I have type ii diabetes and if my weight stays in the normal range I'm cool.. I don't have to worry about a thing. But, If I get above a certain point its finger pricking time.

I'm ready for the trade in on my body. where's my new 20 old body with perky, uh, bosoms, tight abs and gluts, and a muscular body that could win tae kwon do competition: Now? ugh. Nuthing. L.o.L.

have a good day

[chris0710sct]

I am on 15 mg of morphine up to 4 times a day even that does not make me pain free. I work full time it helps take the edge off

[Moonheart]

Tracey,

Do you have more info on the autoimmune type of IC and all that you were talking about? I was given Atarax and I had my urine tested this week and it was positive for leukocytes. My bladder is a raging beast ALL the time, so does that pretty much show between those things that it is for sure autoimmune? PM me please k? Tnx.

[KPearson]

For me the pain is everyday to I pray for an hour of relief I take lyrica,MS contin & percocets. It will take the edge off thats all. My worst is riding or driving in the car or walking in stores actually ant activity will create more pain. I don't know how the mother's of young children do it your in my thoughts all the time since my granddaughter was born last year I realize the impact of this disease and the sadness. well I guess that should be another post but I had to mention it anyway. But yes pain is part of our lives now and no one understands but other IC patients.

Hugs,
Kim

[JudyS]

Hi Everyone,

It's been a long time since I've been here and posted anything...I got very discouraged with anything related to my IC. I spent the first 5 or 6 years after my diagnosis chasing after any treatment options that were offered to me. I saw IC specialists, pain specialists, alternative practitioners, etc, etc. I even got a spinal cord stimulator implanted (which helped a bit, until the leads shifted out of place and my insurance company wouldn't pay to fix the problem ). I did learn that riding motorcycles helps with my bladder for some unknown reason....the constant vibration numbs the perineal area and blocks the bladder pain temporarily. It was a huge godsend, and I rode all the time, because it was the only activity I could do that didn't worsen my pain. Unfortunately, I have 2 degenerating discs in my lower spine and these days the same vibration that helps my bladder cause my back to flare up. So now I'm existing on massive opiates (80mg Oxycontin-4/day with 4mg Dilaudid for breakthrough pain). I have been on this same dose for more than 5 years and haven't increased, although it has gotten less and less effective at managing my pain. I refuse to increase, though.

We just moved from Sunnyvale, CA to the Minneapolis area and I had to go through the excruciating process of finding a new doctor. I loved my doctor in CA....she trusted me and treated me with compassion always. In my experience, that is very rare. Since I've gotten here to MN, it took me 6 tries to find someone willing to treat me as anything other than a "junkie looking for drugs". After the 5th attempt, I was so depressed about the whole thing I told my husband that I was sick of the whole process. Even with the drugs I'm taking, my pain is usually still about an 8. I decided that I would titrate myself down off the meds completely and just live with the pain; the judgment and difficulty in getting the meds just wasn't worth the little benefit I got from them. My husband wouldn't accept that....he knew that if I did that I would have absolutely NO quality of life whatsoever and he couldn't stand the thought of it. So he dragged me to one last doctor on Friday. I had told him that if this one was the same as the last 5, I was not going to another..... Anyway, I explained exactly how I was feeling to this doctor; that I was sick and tired of the whole thing and just wanted off the meds. He was extremely sympathetic and vowed to help me find some sort of solution to my problem. He sent me home with new scripts for all my meds and a referral to the MAPS pain clinic, where he thinks they can help me find some alternative pain management therapies.

I'm sorry that I've been rambling on and on....the main point of my post is that this disease can really take its toll on one's psyche: between the constant pain, judgment, etc from doctors and even friends, and trying to find something at all to help.....It's been 10 years since I was diagnosed (and 10 years before that experiencing ever worsening pain that doctors couldn't explain). I had a lot of fight in me once.....it gave me the strength to keep searching for an answer to my pain and after I got the answer, to keep searching for a treatment which would give me my life back. For the last few years, however, I've lost a lot of that fight. My urologist told me that there wasn't anything else I could try and that I would just have to resign myself to what was left of my life.

But after talking with this doctor on Friday, I feel a renewal in me desire to fight. It's amazing how much a compassionate caregiver can do. I just don't want to give up.....no matter how many dead ends I end up on.

[hottytoddy93]

hi Judy,

i was so moved by your post. i have been there, on the "chase" and trying everything i could. i know exactly what you talking about. i have been fortunate to overcome a lot of the pain after a year and that Elmiron is working well for me. but i know that one day it may not work, or i may have to find a different medication or treatment. i fear going back to that hell on earth. i still suffer with the severe depressions and usual dsythymia (constant underlying depression) that IC kicked in full force. the mental pain is just as crippling, as you know. don't you hate having to take narcotics? i sure hated it. and then for drs to act like you want them to abuse them! OMG the only "abuse" of narcotics i may be accused of is throwing them across the room! i feel like saying to those kinds of drs "sure, i bet we all just LOVE that constipation, constant lethargy, and slight amnesia!" i know what you mean about taking the least amount of pain meds possible just to get by (maybe with a 4-5 pain level at best, usually around 7-9).

i thought your post was very positive even with all you are going through. you hang in there. also, my physiotherapist helped me immensely! do you have one? i had bad PFD and she taught me methods to decrease spasms and ease the tightening. she had lots of IC patients. it really sucks feeling like you are just here on earth, not living, just existing in indescribable pain all day everyday. the IC cripples us physically and emotionally. then the stupid pain meds numb our minds, but we have to take them even to tolerate just lying in bed. i hate not recalling conversations with my child and husband. it is just no way to live.

when you don't feel like going on to the next dr or treatment, you make yourself go because it just may be the one that works! refuse to let this disease beat you. my belief is that we are the ones God chose to tell others about IC and to help find a cure. we matter so we can't give up. we are here to help others. so keep posting, emailing everyone you know, and talking to drs and everyone about IC. that is the way to the cure. i believe i will be here for that day. i really do.

Lauren

[gtg728]

Judy, Your thread was just what I needed to read tonite. I have been diagnosed since 2001. I too used to have alot of fight and now the pain is changing and increasing so that I am definately loosing my punch. I keep telling myself that the meds need to stop and when I try the pain escalates,this disease is a strange one. It truly impacts every aspect of your life.

[VCNJ84]

I've just gone through pages of your stories crying my eyes out!!

I wish I could hug each and every person in this thread.

I have been dealing with non-stop pain for 2 months straight and I feel like my life is being ruined.

It's so consuming...I am still undiagnosed with exactly what I have....so I have the added stress of not even knowing if I am treating it correctly.

It's only been a few months and I can barely cope. It's ruining my social life, work potential etc. I don't know how you ladies have lived like this for years...the fact that you continue on and try to over come is inspirational.

I think ANY chronic pain is horrible...but I think vaginal and pelvic related pain has an added stigma. It's embarrassing to talk about and it's hard to find sympathy or compassion from non-suffers b/c you look healthy in your face since you don't have a cold or anything. If you break a bone or have certain other illnesses people seem to get that you can't go on like normal...but I feel like I have to suffer from day to day pretending my womanly region doesn't hurt.

This forum is a great place to find people who understand what it's like to suffer in silence.

[Mrsrea]

just real quick since I am new to this board. I havent posted my story yet because its crazy long. I have been in constany unbearable pain for 7 years now! I just got diagnosed last week. I had surgery this week but im still so confused with all this information. I take about 6-7 10mg of lortab a day to just get by and Im still in pain! Im just in the beginning of this process and really its so much information to take in!

[kerr4274]

I understand what each of you are going through. I was diagnoised in September with IC. I did good for awhile with the pain but for the past 3 weeks I have been in constant pain. It is effecting my job performance, my family life everything! Last weekend I had to go to Valdosta Ga to see my daughter I was able to sleep the whole way there...3 hours. I had to drive home and thought I was going to pass out due to pain. I take tylenol like candy right now during the day and my loratabs at night just so I can get some relief from the pain. Will it ever end? I have been getting depressed lately and I do not like that ..I had sever depression several years and do not want to fall back into it but I see it comming.

Are there any pain medications that knock us out that can be taken duering the day? I take ultra C but the pharmancy said it was discontinued so they are trying to find something my insurance will cover. I work full time and go to college along with having 2 teen age children in my home...I want to be able to do fun stuff with the kids but when I am on my feet too long I hurt worse.

[Briza]

who has daily pain?

I have not read all of the posts in this thread but original topic was "who has everyday pain?"
I did first 18 months but with time, diet, appopriate drs, adequate treatment I eventully reached a point where pain rarely occurs daily, and none of the other IC related symptoms are present....with or without treatment,

[BT2008]

Are there any pain medications that knock us out that can be taken duering the day? I take ultra C but the pharmancy said it was discontinued so they are trying to find something my insurance will cover. I work full time and go to college along with having 2 teen age children in my home...I want to be able to do fun stuff with the kids but when I am on my feet too long I hurt worse.

Hey Kerr4274,

May I suggest that you open a new thread with your question (you can just copy and paste this post in a new one) so it will not get lost in this ongoing old thread? That way we can all chime in for you specifically...

~Beth

[BT2008]

Daily Pain...

So far, I have not had a totally pain-free day in over nine months. But, with my regular instills twice a week, my current pain med treatment being titrated every month as we seek to find the right strength and dosage, and following a very strict IC diet, I have a lot of hope that I will have a lot of pain-free days--sooner rather than later!!


~Beth