Guest guest Posted February 27, 2009 Report Share Posted February 27, 2009 a, I agree. While I they did not completely rule out Tylenol, they limited it to no more than 1 gm per day and less if possible. I was treated with other pain meds when possible. From: [mailto: ] On Behalf Of a Gray Sent: Friday, February 27, 2009 9:31 AM To: Subject: Re: Re: Pain medication?? Gwynn-Please talk to your PSC specialist regarding Tylenol. Our doctor(s), even our primary physician, from the very onset of this disease said absolutely no Tylenol. It is one of hardest drugs on the liver. On the very front of his chart (records)in the hospital the very first thing it has in bold caps is NO TYLENOL/TYLENOL PRODUCTS. From: joseph.gwynn <gwynn.joseph (AT) gmail (DOT) com> Subject: Re: Pain medication?? To: Date: Thursday, February 26, 2009, 10:28 PM Dear Cheryl, Thanks so much for the info. I am sorry you are in so much pain. My daughter has not reached that stage yet but is in constant milder pain and has nausea often. She is also on hydrocodone 10mg with the tylonol. She is taking more and more as they lose their affect....like what happened to you. She is now taking 3-4 tabs a day.up from the 1-2 a day she was taking. She has vasculitis and some Docs have said she may have vasculitis in some of her organs,but nothing has ever been verified, most of her vasculitis has been in her legs. Anyway, we are going to try acupuncture, and perhaps some other stuff if possible. We will try and see a pain speciaist??? but maybe the rhuematologist would be a good idea?? Thanks so much for the info, I really appreciate all the info I can get. Regards, Gwynn > > Gwynn, > I don't know what your daughter has tried. I went to a Rheumatologis (because that's where my Hep sent me) and we did all kinds of different trials on some of the anti-depressants that ofteh help people in chronic pain. I could not tolerate any of them. I am on Norco (high dose hydrocodone 10/325) and take 240 a month. I used to take 2 pills every four hours, but it became less and less effective and I began experiencing withdrawal symptoms between doses. I cut the dose down to 1 1/2 pills every four hours, but I usally wake up at night in terrible pain. I am working on reducing it even further because it isn't effective. What is causing your dau's pain. they said mine was fibromyalgia. But I think it is something else because I have some other problems. We don't have a pain treatment center around here, but I'm thinking about finding one in SLC Utah because that's the closest to us and where I will have my transplant. I can't live with this pain (I guess I can, but I don't do it > very well.) Hope that helps a little. Cheryl ID > Pain medication?? > > > I was wondering what type of pain medication people are taking?? My > > daughter has constant pain and often nausea that goes with it, what > > type of pain medication are some of you taking and how well does it > > work?? She feels like her body has gotten used to the pain meds she is > > using and it is not that affective any more. She was thinking if she > > tried something else and alternated between pain meds monthly or so it > > would work better. She is aware that pain meds are not good for you > > but she says she cannot live in constant pain and if she takes the > > pain meds at least she can do some things during the day!!! > > > > Thanks. > > Gwynn > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2009 Report Share Posted February 27, 2009 I take paracetamol,Dihydrocodiene,Amitriptyline and morphine which taken altogether has eased my pain alot I also take Domperidone which has helped with my sickness alot I don't know if thats any help to you or if you have these meds over there as I am in the UK. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2009 Report Share Posted February 27, 2009 I take paracetamol,Dihydrocodiene,Amitriptyline and morphine which taken altogether has eased my pain alot I also take Domperidone which has helped with my sickness alot I don't know if thats any help to you or if you have these meds over there as I am in the UK. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2009 Report Share Posted February 27, 2009 I take paracetamol,Dihydrocodiene,Amitriptyline and morphine which taken altogether has eased my pain alot I also take Domperidone which has helped with my sickness alot I don't know if thats any help to you or if you have these meds over there as I am in the UK. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2009 Report Share Posted February 27, 2009 Gwynn, One of the things that they are looking for in me is a type of vasculitis called Wegener's Granulamotosis. Vasculitis is very painful. I also forgot to mention that I am allergic to many pain meds. Are they still looking into her possible internal vasculitis? I remember when I used to require one pain pill a day. I was still working and needed it early afternoon to get through the work day. There is so much misinformation about chronic pain and pain meds. I honestly don't know where I first heard this piece of dangerous misinformation, but I have a sister who still believes it: " You will never get addicted to pain meds if you are really in pain. " I personally have never known anyone who benefited from pain management centers, but I wouldn't swear them off because of that. Rheumatologists would be the kind of doctor to discover the vasculitis and treatment. Good luck, Cheryl Pain medication?? > > > > > I was wondering what type of pain medication people are taking?? My > > > daughter has constant pain and often nausea that goes with it, what > > > type of pain medication are some of you taking and how well does it > > > work?? She feels like her body has gotten used to the pain meds she is > > > using and it is not that affective any more. She was thinking if she > > > tried something else and alternated between pain meds monthly or so it > > > would work better. She is aware that pain meds are not good for you > > > but she says she cannot live in constant pain and if she takes the > > > pain meds at least she can do some things during the day!!! > > > > > > Thanks. > > > Gwynn > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2009 Report Share Posted February 27, 2009 Gwynn, One of the things that they are looking for in me is a type of vasculitis called Wegener's Granulamotosis. Vasculitis is very painful. I also forgot to mention that I am allergic to many pain meds. Are they still looking into her possible internal vasculitis? I remember when I used to require one pain pill a day. I was still working and needed it early afternoon to get through the work day. There is so much misinformation about chronic pain and pain meds. I honestly don't know where I first heard this piece of dangerous misinformation, but I have a sister who still believes it: " You will never get addicted to pain meds if you are really in pain. " I personally have never known anyone who benefited from pain management centers, but I wouldn't swear them off because of that. Rheumatologists would be the kind of doctor to discover the vasculitis and treatment. Good luck, Cheryl Pain medication?? > > > > > I was wondering what type of pain medication people are taking?? My > > > daughter has constant pain and often nausea that goes with it, what > > > type of pain medication are some of you taking and how well does it > > > work?? She feels like her body has gotten used to the pain meds she is > > > using and it is not that affective any more. She was thinking if she > > > tried something else and alternated between pain meds monthly or so it > > > would work better. She is aware that pain meds are not good for you > > > but she says she cannot live in constant pain and if she takes the > > > pain meds at least she can do some things during the day!!! > > > > > > Thanks. > > > Gwynn > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2009 Report Share Posted February 27, 2009 Gwynn, One of the things that they are looking for in me is a type of vasculitis called Wegener's Granulamotosis. Vasculitis is very painful. I also forgot to mention that I am allergic to many pain meds. Are they still looking into her possible internal vasculitis? I remember when I used to require one pain pill a day. I was still working and needed it early afternoon to get through the work day. There is so much misinformation about chronic pain and pain meds. I honestly don't know where I first heard this piece of dangerous misinformation, but I have a sister who still believes it: " You will never get addicted to pain meds if you are really in pain. " I personally have never known anyone who benefited from pain management centers, but I wouldn't swear them off because of that. Rheumatologists would be the kind of doctor to discover the vasculitis and treatment. Good luck, Cheryl Pain medication?? > > > > > I was wondering what type of pain medication people are taking?? My > > > daughter has constant pain and often nausea that goes with it, what > > > type of pain medication are some of you taking and how well does it > > > work?? She feels like her body has gotten used to the pain meds she is > > > using and it is not that affective any more. She was thinking if she > > > tried something else and alternated between pain meds monthly or so it > > > would work better. She is aware that pain meds are not good for you > > > but she says she cannot live in constant pain and if she takes the > > > pain meds at least she can do some things during the day!!! > > > > > > Thanks. > > > Gwynn > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2009 Report Share Posted February 27, 2009 My docs have me on hydrocodone for pain – Tylenol + codeine. According to them, Tylenol doesn’t do any damage under the correct doses – people who take more than the approved dose, though, can go south in a hurry. Nita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2009 Report Share Posted February 27, 2009 My docs have me on hydrocodone for pain – Tylenol + codeine. According to them, Tylenol doesn’t do any damage under the correct doses – people who take more than the approved dose, though, can go south in a hurry. Nita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2009 Report Share Posted February 27, 2009 My docs have me on hydrocodone for pain – Tylenol + codeine. According to them, Tylenol doesn’t do any damage under the correct doses – people who take more than the approved dose, though, can go south in a hurry. Nita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2009 Report Share Posted February 27, 2009 Hi, all! I take Dilaudid (6mg) when pain is really bad. I also have a prescription for Tramadol but I find that it doesn't make any impact at all for me. My hepatologist has also told me that if I need to, I can take two extra strength Tylenol (in fact, I've been given it in the hospital on top of the morphine before). Last, the doctors have also given me some muscle relaxers (Trazadone) to help me to ache a bit less and be able to sleep at night. Sandi in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2009 Report Share Posted February 28, 2009 Dilaudid is a wonderful thing. When I dislocated my hip (4 times) it is the only thing that would really touch the pain. Made me talk funny and dream weird dreams. But I could stand the pain. ============= Hi, all! I take Dilaudid (6mg) when pain is really bad. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2009 Report Share Posted February 28, 2009 Dilaudid is a wonderful thing. When I dislocated my hip (4 times) it is the only thing that would really touch the pain. Made me talk funny and dream weird dreams. But I could stand the pain. ============= Hi, all! I take Dilaudid (6mg) when pain is really bad. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2009 Report Share Posted February 28, 2009 Hi >I am also referred to acupuncture,?and i am going to try it?anyway, although i am not putting much hope on that one, too,?to help with that kind of pain. > ? > > I've had acupuncture for flare-ups of chronic lower back pain. While I admit the first time it felt somewhat weird, I've had it done multiple times and would highly recommend it. The nice thing is that unlike some pain killers which simply put you to sleep, the acupuncture allows you to function. Quote Link to comment Share on other sites More sharing options...
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