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Who has everyday pain?

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  • jen74
    replied
    Hi Karen,
    Thanks for the advice. I am going to look into getting into a pain doctor, but I think I need a referral to see one, and God only knows how I will get a referral as I highly doubt my urogyne will refer me to one. She does not even believe in giving pain meds for IC. I may just have to try and see my pcp and see if she will give me a referral. Thanks for replying and for the advice.
    Jen

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  • Freckles
    replied
    Jen....
    find yourself a good pain clinic. Do not live in pain. It's hard to find a good pain doctor but it's worth the search. I'm so sorry you're hurting. I know beliveve me I know how it is.
    Karen

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  • Freckles
    replied
    Hey yankee,
    I haven't been to the boards in a while and so sorry to hear everyone's pain. I've had the disease as well of about 9 years. I'm 47. I have finally found my favorite medication and I have been on them all. Codeine helped a bit but made me the ***** from hell. I used to tell my doctor it was the medicine and he said that was impossible, funny how my demeanor changed when I quit taking it. I then went to demoral which made me very sick to my stomach all the time and made me lose my last job. I've been out of work a year and still trying to make things work. I don't want to be disabled, but think it's got to happen if I want to keep my house. I graduated from demoral to morphine which I hated even though it did help the pain a lot. I am now on fentynl patches. I have pretty much taken myself off of every other drug such as neurontin, elmiron, and a couple of others due to the fact I can't afford them. If my doctor knew he would throw a fit, but if I can't buy them I can't buy them. I have to keep the one that helps the most and thats the patches. They help the pain but nothing takes it away. I'm fairly sure my days of working are over and that just kills me. That's the most painfull part of this disease for me. I'm a social butterfly who can no longer fly. It's devastating.
    Karen

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  • jen74
    replied
    I have pain all the time. Following the diet does not help me at all, even though I have always been on the bland diet due to my stomach issues. I cant believe how many of you are on pain meds. That is great that your doctors actually prescribe them. I cant get anything for pain from my doctor.
    Jen

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  • nyyankees20251
    replied
    Hello all,

    I have pain all day to. I wake up with and every night as I try to fall asleep I have it. It rules my life. I have been diagnosed with IC for ten years but it has been the last 3 years that things have gotten absolutely rotten. Most days I feel like I am rotting on the inside.

    I take four ultram a day, many times more, even though than there are days I go without. For two weeks out of the month I take 2 oxycodone a day. I also do versicare and prymidium. I used to take aleve, but it caused to very SERIOUS ulcers in my stomach so I can only use tylenol which won't work for me at all.

    I hope we are all at some point pain free from this disease.

    goodluck

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  • MakinIT
    replied
    Ahhhh...that's as clear as....my head in the morning...ha, ha, ha...now I'm curious...I'll have to look it up. I almost entered into goggle Abe Lincoln +groundhog +drug just to see what the heck came up. Some Goggle response are so much more entertaining than others...

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  • Babs RN
    replied
    It is called Rozerem.

    Hugs,
    Barb

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  • MakinIT
    replied
    Originally posted by Tracey83
    I am not sensitive to medicines at all. After I have been taking them for awhile, it is almost like I am not taking anything. Lortab is the only thing that works for the pain, so when I am on anything else especially sleep meds, I have to take breaks so that the effectness comes back. I am on a new sleep med (you know the one with Abe Lincoln and the groundhog?). It is working okay, but I am still only getting about 4-5 hours. I wake up about 5:00 with the worst burning pain.

    Better go for now.

    Bye, Tracey
    Huh? Abe Lincoln?

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  • Claredale
    replied
    I am not sensitive to medicines at all. After I have been taking them for awhile, it is almost like I am not taking anything. Lortab is the only thing that works for the pain, so when I am on anything else especially sleep meds, I have to take breaks so that the effectness comes back. I am on a new sleep med (you know the one with Abe Lincoln and the groundhog?). It is working okay, but I am still only getting about 4-5 hours. I wake up about 5:00 with the worst burning pain.

    Better go for now.

    Bye, Tracey

    Leave a comment:


  • MakinIT
    replied
    Thanks for the quote Tracey83...I was in a hurry last night. bcarroll: my response is much like Tracey83 (I'm a Tracey as well so I have to keep stuff straight for my own sanity) It's wierd. When I wasn't ill with this, I was a very light sleeper (uh, after I had babies of course..prior to, I was a rock) Then, the meds made it impossible to wake up. I would literally dream I was peeing and I couldn't go. It hurt so bad I would sweat through the sheets and roger would have to wake me 2-3 times. (needless to say, we bought a couple more sets of sheets) . That was on MS contin, Valium at night, on antihistimes, sometimes breakthrough meds AND (here's the clincher...Topamax...nice drug for Epilepsy but also for nerve pain...AND makes you sleepy.) He would actually have to direct me into the bathroom. I finally went off the antihistimes and lowered the Topamax dose. I try not to use the other stuff except the morpine derivied stuff. I am so sleepy right now. mid afternoon I get very groggy. My pain has gone back up since going off the antihistimines. But I don't want to go back...

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  • Claredale
    replied
    Originally posted by bcarroll
    i have asked him and he said that hydrocodone is the only thing he can give that will not cause more problems. He thinks that other meds causes the pain more. I went to another dr. in Memphis, and he put me on muscle relaxers, which of course they haven't worked yet, but i am hopeing it will soon. Do you have a hard time getting up in the morning? is this part of the disease. What is going to happen if i keep getting more tired?
    I didn't realize that you were in the Memphis area. What doctor are you going to? Yes, most muscle relaxers make you groggy in the morning. Do you sleep okay otherwise? I probably get about 4 good hours of sleep, of course this is with the waking up to go potty, but during those 4 hours, I go right back to sleep. I have been on Soma several times and can't really tell that there was a difference, but I think it helped me with my sleep.

    Tracey

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  • MakinIT
    replied
    Wow...I'm sorry but did you say you have a med for continuous pain...that is..you take daily? (like I take MS contin 120mgs 2x daily and the Oxycodone 5 mgs for breakthrough) Or is that your only pain relief? I'm prob rehashing something...sorry...regardless, your doc needs to know your pain is that bad.

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  • bcarroll
    replied
    i have really slowed myself down, i was up to taking around 6-7 7.5 a day

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  • MakinIT
    replied
    I can relate to the showers but man, I just want to get up with my thick blanket and curl on the couch with my coffe (mild of course) and stare blankly at the wall...although I always doze off every morning.
    as far as the ibuprofen stuff, wierdly enough...today my oldest daughter had to go to a rehersal for her musical she's in...(she's a support role in South Pacific) She dances like me...kllutzty...so these are important...well she was grumpy heading out the dooor and turned to yap at me and stepped wrong off the porch. She twisted her ankle pretty well. Needless to say, we had to go by her school, get her excused from practice as she bawled, fearing being kicked out of the program...then I went to Safeway to get stuff to help with her ankle. She has GERD, an Endoscopy showed blisters in her esophogus and I was worried about what to give her. The pharmacist said tylenol does no good for muscle pains. But the Naproxen and Ibuprofren are both hard on people with tummy and organ problems (especially the GERD, ulcer type stuff) but said Naproxen was the best because she only has to take it twice a day. It is also less harsh, although harsh enough to be a concern. (she takes alot of Ibuprofen during her period...I didn't realize how much and we had to put a kebash on it...she is 17 but still young) Her GI specialist said Ibuprofen was the worst of them to take, but she rolls her eyes...I did put her on Naproxen today and she seemed to like it though. (I told her it was a blue Ibu...later I told it was Naproxen)

    Anyway...I'm just saying that because I went off percocet because I worried about the Tylenol in it and the doc took me off, and said he wanted me on a pure break through since it was long term and none of the OTC pain relievers they are cut with are good for you. I now take Oxycodone which, I don't know where it stacks in terms of the pyramid of pain pills for breakthrough...(I take MS Contin for regular pain relief)..

    Ug...I hope my daughter's ankle is better in about a week. Her musical is in 3 weeks.

    Tracey

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  • DaniBelle
    replied
    Why can't the 'experts' (doctors) answer our questions and fix us!!

    Yes, any kind of pain med, muscle relaxer (the stronger, the 'worser') will give you problems upon trying to be 'bright-eyed and bushy-tailed' in the morning. My main problem is that I am a little groggy, but the muscle pain I have from the FM makes me feel lke I've been run over by a truck while sleeping. It takes me a while to get out of bed. As you were saying, I believe the Lortab, Percocet, etc. (although they have a tendency to build up a tolerance in your body - happens quickly with me), do work better for the pain. When I take a Lortab, etc., within 20 minutes, it's like a heat-seeking missile goes right for the pain and knocks it out. My pain dr. doesn't like Lortab, etc. and if he does prescribe them, it's only with a longer acting med such as Avinza, etc.. I will call her next week and ask if I could try to just stay on the Lortab or Percocet. I think, also, if your script has ibuprofen in it instead of tylenol, it's much easier on your organs. I also think it lasts longer. I had dental surgery 2 months ago and the Vicoprofen the endodontist gave me worked better for all my pain (dental, bladder, and body) than the other stronger medication! I think everyone's different and the pain dr. has to find the right combination for each. I wish they would understand that. Right now, my Avinza has worn off (took at 1:00 p.m., it's now almost 8:00 p.m. and the 4 Ibuprofen aren't working....what do I do...I lay here on a heating pad and count the minutes until Monday when the Pain Center opens. Tha'ts no way to live. I'm tired of my husband and children seeing me groan and hunched over. It's not fair that there are not enough competent dr's out there to help us...we don't want this...they wouldn't last 1 day like this without running to the ER!


    P.S. A tip to help with the trouble waking up well in the morning. Go straight to the shower and no matter how painful it is...stand there and let the moist heat help you. It improves me by 50% for a few hours.

    I wish you the best!










    Originally posted by bcarroll
    i have asked him and he said that hydrocodone is the only thing he can give that will not cause more problems. He thinks that other meds causes the pain more. I went to another dr. in Memphis, and he put me on muscle relaxers, which of course they haven't worked yet, but i am hopeing it will soon. Do you have a hard time getting up in the morning? is this part of the disease. What is going to happen if i keep getting more tired?

    Leave a comment:

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