Pain management

[marsha24]

I have read alot of the posts that people are having the same problem as me with getting meds to manage pain. When I had the hydro/cysto and d&c in Sept. I had already been in alot of pain for many months. I started the usual regimen after confirmation of IC-Elavil, Atarax, Elmiron, Pyridium Plus when needed, hydrocodone 7.5/500 every 4-6 hours when needed(40 per month that I never asked to be refilled early), as well as 6 weeks of instillations. Well, that worked good except that I was having my period 2 or more times a month and having extreme flares with it. It got to where I felt really good the other days of the month. My gyno decided to do a lap/hysterectomy, much to my relief. I thought "Great, then things will get better". I had percocet from him the last two weeks since surgery until yesterday. I knew my bladder was what was causing the most pain now(more pain with this flare than ever). So he decided I needed to see the uro for pain meds. Gave me hydrocodone 5/500(what a joke) every 6 hours, 10 pills to last until I could get in with the uro!I was in so much pain last nite I had to take 2 every 4-5 hours just to get a couple hours sleep. Went to the uro today to have my urine cultured. My uro was at his other office so he told the nurse to call in my pain meds. Normally the script has been hydrocodone 7.5/500 1-2 every 4-6 hours as needed 40 pills for the month. Well, imagine my surprise when I got to the store(in major pain by now) and he prescribed 10 pills, same strength every 6 hours. I am still hurting, have done warm bath, heating pad, etc as usual and still have had very little relief. I have just had major surgery, am a single parent to an extremely ADHD 4 yr old and am in more pain than I have been in a long time. Now what do I do.I finally took 2 of the pills a little while ago and am hoping it will finally help. Even my mom said that was ridiculous after all the pain I have had since surgery. The first 5 days I had to take 2 percocet every 4 hours just to be able to eat or walk to the bathroom. My gyno wants the uro to prescribe the pain meds and the uro gave me enough for 2 and 1/2 days. The nurse said the culture probably won't be back till Friday either.
I even made the appointment and paid to see them and it seems like he just didn't understand. I guess the fact he wasn't even there when I thought he would see me also upset me too. I am more than willing to get the instillations again ( they really helped after the first 2), sign a pain contract, or even go to a pain clinic if needed. I have had experience without much pain now and can see what it is like to have a pretty normal day and I want that back! Any suggestions would be helpful and sorry this ended up being so long.

[Julie Smith]

Marsha,

I feel for all you've been through and yet you're hanging in there. I've been suffering with ic for a year, not able to work or do any of my normal activities, etc. My uro had bee prescribing elmiron, vistaril, valium and maxidone. In November he told me to see a pain dr. because he wouldn't write me any more scripts for valium or maxidone. There was a lapse of 2 weeks before I could get appt. w/pain dr. and I was out of valium. M uro refused to call in the valium. I couldn't believe he left me hanging, it was just horrible. My family dr. did, thank God, because after going without for 7-10 days I was in total agony, flare etc.

Anyway, I saw the pain dr. and was very pleasantly surprised. He treats a lot of ic patients so he is very familiar with our disease. He has consolidated some of my meds. and given me new pain meds. and I;ll return in 2 wks. If these don't work he told me about MANY other treatments, medications that could help. Anotherwards, don't be discouraged if these meds. didn't help. I was amazed there were so many treatments. I can't tell you how relieved I am.

I hope this helps you. It sounds like you need a pain dr. desperately and like NOW. I hate that you're suffering needlessly and these dr's. aren't listening to you. Perhaps you need to get really really firm in explaining this to your dr., and insist on speaking with only dr. and even seeing every day if necessary to get meds. until you can get to pain dr.

My prayers go out to you, warm hugs too.

[ICNDonna]

The nurse may have just given you enough to get you through until the culture results. If you have an infection, the treatment would be different than for an IC flare. If you don't hear back by the time you are down to a full day's supply of pain meds, I would call the uro back and request more.

Sending healing thoughts,
Donna

[marsha24]

Thanks Donna and Julie. I am sitting here, and walking the floors almost in tears. I have just changed the stick-on heating pad and hope that will also help. I just get so frustrated when I am doing all they ask and still feel like I have to beg for meds. Thanks so much for the support!

[khouse]

Marsha,
I am in the same boat as you and don't really have an answer but will be praying for you and hoping you find relief soon! \
Love,
Kim

[marsha24]

Update:
Well guys, I was getting down to my last 2 pain meds today, called the nurse, left a message that 1)I had 2 left 2)They were not helping much 3)what did the culture show 4)needed more meds.
After 4 hours (about 4pm) she calls back and says my dr. is not in office until tomorrow and nothing can be done. I asked could one of the other docs see me or call me in something...again no...take aleve. What a joke!
I was so upset. I called at 5 to get the answering service to get the doc on call to call me because it had been an hour since last pain med and the pain was getting worse. Well guess who was on call...yes, my doctor. He said the nurse didn't tell him the extent of my pain and had also said I had enough meds to last THRU tomorrow. I explained what I had told her and her replies, answered his questions. He then called me in some stronger meds immediately and said he wanted to see me tomorrow no matter how full the schedule was! He is going to start me back on the instills and see what else he can do then.
Well from now on, I will NOT deal with that nurse again! So, there is hope.

[alana rose]

Marsha-
I hope that you appointment goes well. I will be thinking of you. My uro is impossible when it comes to pain meds. When I tell him that I ended up at ER when I had a flare-he cringes. I have posted before in other topics that my gp has put me on fentynl transdermal patches. I have had pain since last March-with numerous flares during that time. The patches are working well-I had my first pain free day, first time in one year. Good luck-perhaps look into a 'patch'.
alana

[marsha24]

Alana,
Thanks..I had done some research of pain management strategies when I couldn't sleep these last nights and had intended to ask about the patch and some other things tomorrow too. My uncle is paraplegic and has nerve damage that he controls pain from with the patch with much success, so I am definitely going to ask. Even if it is to use just until they can get my bladder back under control again.
Again, thanks for the advice.

[alana rose]

Marsha-
You are so welcome for the advice. I have started on the 25mcg fentynl patch that I change every 72 hours. I have had some break through pain usually the last day that I am wearing it-I have taken 1/2 an empracet for the pain. This is the first week of wearing the patch-I'm going to my gp tomorrow so she can assess the patch and if I need to increase the dosage. I don't how long I will be on it. I do have questions to ask her-how long she would like me to try it. Do I just use it when I have flares-which is constant lately. Let me know if you do get the patch as well. I am so happy that I can help you. This website is a god send to me.
alana

[Teri]

I'm go glad for you Marsha.....took me 7 very very long years to find a dr with the guts to treat my pain.
I've already made up my mind that if anything were to happen and I was left without pain management again I will call Hospice and get recommendations of dr's that they use.
NO ONE SHOULD HAVE TO SUFFER LIKE THAT.....

sending warm fuzzy hugs~

[marsha24]

Terri and Alana,
Thanks for the support. Yes these boards have saved my sanity thru these last months. I am a single parent of a 12 yr old girl roaring into puberty with all the mood changes and a severly ADHD 4 yr old son that I and my PCP are trying to get meds regulated for. So I get very stressed and upset. Now I know I will definitely ask for the patch for the flares.
Terri, I too will not go thru 2 and 1/2 days like I have this week. I am normally a very outspoken person and very proactive, but with sleep deprivation and pain, it was hard to be forceful about getting my message thru. But it won't happen again. If I cannot talk to or see my dr., I will insist on talking to 1 of the 2 other nurses who are so good in that office.

[rachelm]

Marsha,
I'm so glad you got to talk to your dr. I had an appt. with my pain dr. today and I explained how difficult it has been to get his nurse to call me back. I wait for 3 days and then just keep calling until I finally get her. I told him that I don't want to bother them and I only call when I really need to update them on how the meds are not working as well. He was sooo nice. He told me to call the after hours number even if it wasn't an emergency so that he would get the message directly. He said he would call or have someone else call and discuss what changes needed to be made. I had to make sure that I had some communication in place because I'm getting the trial interstim Tu. and I want to make sure he's available if I need him.

I'm glad that your uro is having you go back in tomorrow. Are you doing Heparin/Marcaine instills or something else?

I would definitely reccomend finding a pain specialist. Mine has been very helpful in managing my pain. I hope you get to feeling better!

Rachel

[marsha24]

Rachel,
Thanks..I had also planned to ask for a referral to a pain specialist because I do work and have back, leg, and bladder pain daily from standing on concrete floors. We had shutdown for 2 weeks at Christmas and I got to feeling much better during that break. Well the first 2 weeks back, I steadily hurt worse each day. I am trying to find a job as an Admin Asst again so I won't have to do 10 hrs a day 4 days a week on my feet. My admin job was eliminated due to slow work so I am doing quality inspections for my company. And I am trying so hard not to let this disease disable me at this point, but it is really getting hard not to give in to the pain.
I'm not sure what was in the instills I did initially, but I plan to ask tomorrow what is in these. The cost of 35.00 copay for them for 7 weeks is going to kill me since I still have 4 weeks to go before returning to work after this surgery. My doc had suggested I learn to do them at home if I had to get them again, so I hope he will let me do that this time. I am a little nervous about that, but as a single parent it will be necessary this time. I already have 10 meds per month that takes about a 1/4 of my income monthly even tho I only pay a co-pay.
Thanks again.

[rachelm]

I totally understand the concern about the cost of copays and drugs. I too am on many drugs and without my insurance there would be no way I could do it. They would be $700 per mo. As it is with co-pays it adds up especially when I go daily for bladder washes (heparin/marcain/bisodium carbonate) at $20 per day. ugh! If your dr. will let you do instills at home that would be great! I have begged mine till i'm blue in the face. She explained to me today that the marcaine can put you into cardiac distress if the body absorbs it too quickly. She had a patient that passed out and went into arithmea after her first bladder wash following the potassium test. I know that she was more seceptable because the potassium made her bladder more irritated so it just absorbed the marcaine quickly. It was also her first time. I've had hundreds of bladder washes and they never make me react this way but they still won't let me do it.

Also, if you have an infection you shouldn't do any type of instillation until you've been on an antibiodic for a few days. My dr. stops them until my Lucicytes come back normal. It can stir up the bacteria I guess. Good Luck with your search for a pain clinic. You will be in my prayers.

Rachel

[alana rose]

Marsha-
Hi! How are you feeling today? Better I hope. I had my appointment with my gp today. She said that she is going to give me a two month holiday from the pain and gave me two-months' worth of fentynl patches. She is so happy that the patches are working. I do have a bit of break through pain, but I just take a 1/4-1/2 of an empracet (it is usually at the end of the day.) I told her how I have all of this energy now. I actually wake up and plan my day! After the two months I am going to go off of the patches and see how I feel. Then take it from there. Definitely try to get into a pain clinic and ask about the patches. I am on a wait list to get into the pain clinic here-it is going to take a year for me to get in. Take care and let us know how you are doing.
alana :)

[threewins]

Hi Marsha, I hope the pain meds are helping, and I hope you have enough this time. I too have had to deal with rude receptionists and or nurses at my doctors offices. It is so frustrating! You don't want to call and bother them because they make you feel worse than you did before you called. I have hung up the phone so many times and cried because of the snotty attitude they have. Now, I try to develop a rapport with one receptionist or nurse and ask for them directly. Last week I finally just told the receptionist that despite "her advice" I didn't feel comfortable and needed the dr to call me. He called me back that night at 7:30 pm and was great. Anyways, it sounds like your doctor has helped you find a way to reach him. I know there are many wonderful people who work in the health industry, but it sure is frustrating to deal with the ones who are not!

[marsha24]

Update:
Well, my appt. with my doc went well. He told me he had no problems with dispensing pain meds as I normally don't need a refill but once per month. Also, started me on the B&O suppositories...don't really think they are helping much. I am still in alot of pain and having to take pain meds every six hours, plus suppositories, and Pyridium Plus.Also, I am supposed to return to work in 2 weeks! I just hope the instill and meds get this flare stopped before then. If not, my doc said we would try some other things and a pain clinic referral if needed.
One bit of good news. I have been trying to find another office job(what I usually do) because the standing, lifting and such are getting to me. I have an interview for an Admin. Asst. job with the state tomorrow!! blink So everyone be thinking and praying I get this.

[Dixiefireball]

marsha, i'm so sorry i know what you are going threw and since we see the same dr. office but not the same dr i know what you are talking about don't talk to the head rn there you will not get nothing done! she seems like she either doesnt care or doesnt understand ic one there is only three there that seems to care. i pm you after i read your pm now after reading this post i know a little more so i'm going to pm you again. i also sent you my new email address.

[YankeeCandle224]

Hi Marsha,

I had similar problems with pain meds and ignorant docs. One doc told me "I'll never give you pain meds so go buy a bullet and bite on it" I could have strangled that *****.

After 3 years of searching, I have a great uro, a great gp doc, and a great pain management doc who gives me 120 10 mg hydrocodone pills a month, plus 90 80mg oxycontin a month.

It took me a long time and a lot of suffering to get to this point, and to be honest, I still suffer at times and STILL run out of the hydrocodone sometimes because I hurt so bad, all over, from fibro/cfs, and my back, and the IC.

What I'm getting at is it takes time, and referrals and word of mouth to get the doctors you want/need. I had been to an orthopedist about possible surgery for my back and he sent me to this pain doc who also does accupuncture and other techniques, for pain. He is a kind, human man, and writes my rx's out in advance so I dont have to make a trip to get them. I get them when I see him every month or month and a half.

Keep pushing, keep asking, call around and ASK if the doctor is treating IC patients and understands the pain involved. Ask to speak to the nurse, ask for patient referrals, meaning some patients are willing to say "hey, he's/she's a great doctor" and keep looking til you get what you need.

I know its a daunting task, and plain out sucks to keep going from doc to doc, I did it and went thru about 50 doctors, and thats not an exageration, before I got to this combo. My gp isnt perfect, he's not good with my thyroid...but I also have a great gastro doc for my crohns by word of mouth, and all you can do is try.

I'm so sorry you are in so much pain. I hope you dont take this as bragging, I want you to know that you arent alone, as I've been in your shoes for years, and only in the last 7 months or so have I been able to control my pain a bit better, and my uro and pain doc talk, I signed a contract with the pain doc, saying I wouldnt get pain meds from any other doctor, and had to go to one pharmacy every month. I follow the rules, and win in the long run.

Take care, I know it is so hard to be in pain, and I'm in tears just remembering how it felt to be helpless and have jerks for doctors. I'm just truly sorry.

Please pm me if you'd ever like to talk........I have some bold advice, and as a RN in my former life I have learned how to read a doctor in the first 5 minutes of an exam.

Take care and hugs to you.....you'll get thru this one way or another.

Oh, I wanted to tell you, I was in so much pain with nobody listening I went to the PSYCH emergency room, and BEGGED them to admit me and to listen to me about my pain as it was literally driving me crazy. I was in 24/7 pain with no sleep......they gave me neurontin, and it did help me somewhat for a while, and for once, someone listened. They figured that I MUST be in pain to have begged to be admitted, TWICE, and needed help..Theres always help somewhere.....they never admitted me, but talked and did help me some by sending my records out to my group of idiot docs at the time.

Love, Sandy

ps, Reminding a doctor of his oath and the first line "First do no harm" is always a good one....you should see the look on their faces. You can call the medical board on ANY doctor who does not treat your pain properly. The problem is people dont report doctors enough, I reported the jerk who told me to buy a bullet.

[Ginny]

When I asked for meds years ago I was told by a Urologist to go home and take a long bath.
Wow, where is this pain specialist Yankee Candle?
Ginny

[YankeeCandle224]

Ginny,

He's here in Charlotte, NC. Quite a drive for you from NJ.

I wanted to say as well that I did find a GP who gave me the oxycontin over 2 years ago, almost 2 1/2 years ago now, but she didnt know that much about fibro and I left her because her staff was pathetically inept.

This new pain mgmt doc didnt start me out on 80 mg, but I've been on that dose a long time after working my way up from 20 mg to 80 in about 5-6 months, and have stayed at 80 for the remainder of the time.

Maybe thats why hes so willing to give me the meds and now that I have documented disability proof and Medicare/SSDI, I dont know, but I know I am glad not to be living in that awful pain I was in before anyone helped me. I was like a dying fish flopping around on the sofa and it was hard on my kids too. I'm greatful.

Hugs, Sandy

[dminton]

Hah! I had to laugh (through my grimace) at Ginny's post: I remember when I first flared with bad, bad IC 5 years ago after an 8 year remission, and the receptionist at the uro's office told me that what the uro told her to tell IC pts. is to "take Advil and get in a hot bath"! Hah! Sorry, just had to commisserate.

[marsha24]

Thanks to everyone's advice. It has really helped. I still am having pain but I had the second of 4 instills Thurs and it is starting to help some. Good news is that my interview went extremely well Wed. and I have a second one on Monday!! :) I hope this means I have a new job soon that won't be as hard on me and my IC!

[ads]

Julie,

I am in the Florida area and looking for a pain management doctor. I noticed you have foudn a good one. I tried to private e-mail you, but your box is full. If you happen to see this, could you possibly send me a private e-mail with more information about this doc? I really need to find a good one for my husband ASAP. Thanks

Andrea

Marsha,

...Anyway, I saw the pain dr. and was very pleasantly surprised. He treats a lot of ic patients so he is very familiar with our disease. He has consolidated some of my meds. and given me new pain meds. and I;ll return in 2 wks. If these don't work he told me about MANY other treatments, medications that could help. Anotherwards, don't be discouraged if these meds. didn't help. I was amazed there were so many treatments. I can't tell you how relieved I am...

[Freckles]

Alana what strength patch are you on? I was on demoral and my new pain doctor took me off and put me on morphine which made me very very sick and he changed me to these patches. I'm not getting the pain relief I had before. He gave me ultram for break through pain but it does absolutely nothing. I am on the 25 mgs or whatever it is. I think it's the lowest dose. I started out changing every 3rd day and told him that it wasn't working, so now I change it every other day and it still is not enough. I'm afraid that if I go to a stronger dose it will cause all the side effects but yet on this dose I'm still in bed most of everyday.
Thanks so much. It's so sad what we go through to get help. I've read so many posts that are similar to mine. It's ridiculous. I really think it's time that we all start writing letters to someone. I don't know who, but someone who can do something about the way these doctors are treating us. It's horrible. I asked my uro to prescribe smaller catheters because the ones I'm using hurt me ( 14 fr) and he told me "NO, I COULD PUT ONE TWICE THAT BIG UP YOU". What the hell kind of a response is that. This is a doctor, someone that took an oath to help people. I couldn't believe it. Now, until I can get smaller catheters I can't do my instillations either. It's unbelievable what we have all been through and to be honest I think it's time it stopped. If there were more men with this disease it would be different. Because we are women we are treated like hypochondriacs (sp?). I'm sick of being treated like a nuisance by my Uro. He's an awful little man.
:-(
Karen

[Babs RN]

This is a 2 year old post and some of the people on this thread aren't on here very often at the present time or have different screen names. Are you changing your patches that often with your doc's approval? Fentanyl is so potent(10,000 more than morphine to be exact)and especially in the period of initial usage needs to be monitored closely. I'm not trying to be pushy or confrontational but have seen(I am an ER nurse--well, a school nurse now because of the IC but an ER nurse for nearly 8 years prior)people in respiratory failure because they had no side effects from Fentanyl initially but caught up with them quickly. I hope you are able to find a combo that will help your pain. I too have been walking this road to find pain help.

Hugs,
Barb:hi:

[Freckles]

Hey Babs,
Yes I guess I need to look at the dates of these things. It was late last night and I was in pain and needed to vent so wasn't really paying attention. Yes, my doctor told me to switch every two days instead of three and I also leave the old patch on when I change to the new one. I'm still in pain, but not sick like the morphine made me so I'm happy about that. Being on this fentanyl does scare me to be honest. I do think I will talk to him about it on Monday at my appointment. I would prefer to be on something less lethal. I've heard a lot about oxycontin and how it helps people but isn't that extremely addictive, like a street drug. I know I've heard that name on the news. I'm just in pain and I need help so I can get back to work before I lose my house. I'm divorcing as well so in a couple of months I won't have insurance. What the heck am I going to do then? I try not to think about it because it scares me to death.
Karen

[Babs RN]

Karen,
I know how scary it is, as my hubby left me in May because of my IC. He doesn't approve of pain meds for any reason. Please PM me if you need to talk about anything, ok? Just wanted to let you know you weren't alone.

BIG warm hugs,
Barb:smile tee

[deniseh]

I bladder pain, vulvar pain, urethra pain, burning when urinating, tingling and burning on my buttocks and thighs. Think that spasms have subsided due to elmiron. Diet doesn't seem to help. Does sitting too long cause more pain? I'm going to a new doc next month. Want to be sure that I describe symptoms correctly. Do not have frequency issues. Hydrocone only takes the edge off. Would love to hear symptoms explained.

[Snowden1]

Hi, :welcome:
If you are on Elmiron someone must have thought that you had IC. You do sound like you have the symptoms. We are all so different. My symptoms are different than others. I do not have as much frequeny now as when this all started, just the pain, severe bladder and pelvic, urethral and sometimes vaginal burning. Have you tried baking soda and water when the urethral symptoms start? It is good you are getting in with another Dr. - second opinions are always good.

[bjwright]

What is being done to legitimate pain patients is a crime. Those who have ruined it for those that need it..... there aren't words.

People who are addicted are certainly going through their own H*** and I've known people who are poly users and do believe there is a chemical thing that some of us, fortunately don't have, and some unfortunately do.

I watch over my lady as she hurts and I feel so helpless. She was doing so well and now I'm watching her endure pain despite following every instruction and no she doesn't have an infection. It's the urethral burning, Snowden, so we hear you.

I hate this disease. It hurts so many.:pray: