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  • bjwright
    replied
    We hear you!

    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.

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  • Snowden1
    replied
    Hi,
    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.
    Last edited by Snowden1; 04-19-2010, 11:32 AM. Reason: spelling

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  • deniseh
    replied
    Can someone tell me if the pain I experience is IC?

    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.

    Leave a comment:


  • Babs RN
    replied
    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

    Leave a comment:


  • Freckles
    replied
    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

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  • Babs RN
    replied
    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

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  • Freckles
    replied
    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

    Leave a comment:


  • ads
    replied
    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

    Originally posted by Julie Smith
    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...

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  • jgordonfan03
    replied
    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!

    Leave a comment:


  • dminton
    replied
    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.

    Leave a comment:


  • YankeeCandle224
    replied
    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

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  • Ginny
    replied
    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

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  • YankeeCandle224
    replied
    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.

    Leave a comment:


  • dixiefireball
    replied
    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.

    Leave a comment:


  • jgordonfan03
    replied
    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.

    Leave a comment:

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