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    • CommentAuthorLindylou
    • CommentTimeSep 1st 2017
     
    Question to you all, because Google is not helping me. My choice for my partner's pain seems to be: tylenol, ibuprofen or morphine. Doctor is worried that at present I am giving my partner a little bit over the max suggested dosage of tylenol for some pretty severe joint pain. Doctor's alternatives are ibuprofen with food, or morphine with all sorts of bowel precautions. She is taking minimal food - so strike out ibuprofen. She has a life time history of constipation as well as a history of severe nausea from morphine when she took it following surgeries long ago. My question is: does too much tylenol and potential liver damage make any difference at this stage of affairs? And Google is not helping me. I understand life is hard, but why does it have to be so complicated as well? When I am under stress I splash cold water on my face, breath in and out slowly, move my body gently to dance music. My approaches are not working, and I am panicking.
    • CommentAuthormyrtle*
    • CommentTimeSep 1st 2017
     
    I vote for Tylenol. I don't know long it would take to cause liver damage but my guess is that it would take longer than your partner has left. And as you say, would liver damage make any difference at this stage. (Wonder why the doctor has not clarified this? It seems like he/she is just complicating things.) I hope one of the nurses on this site can help you answer this question.

    Like your partner, I get severe nausea from certain narcotics (in my case, oxycodone) and have chosen to take only Tylenol after surgery, so I can appreciate your hesitation to give her morphine.

    I'm very concerned that you have to make these decisions alone. It sounds like you are exhausted. I wish I could help.
    • CommentAuthorlongyears
    • CommentTimeSep 1st 2017
     
    Too much Tylenol is definitely a bad thing, but there is a well-know (but not well-publicized) remedy. Milk thistle. It's available as tincture, in those little bottles with eyedroppers.

    Can be added to water or other liquid, for drinking purposes. But you might want to consider this -- it can also be added to any hand cream or oil, and just rubbed gently on arms, legs, anything that will tolerate a little rubbing.

    About pain, if it is in any way localized. Specific joint(s), for example.

    Recently I discovered that lidocaine -- the topical anesthetic which is injected to numb the gums etc. at a dentist visit -- is available again. Over the counter.

    It's a true anesthetic; I scalded my hand and after soaking in cold water for a bit, dried the hand and applied my own remedy. That would have worked for a lesser burn, but didn't work for the really bad scald. But the lidocaine did work. Although be warned, initially it may hurt all by itself -- there may be an alcohol base, or something. Same story with a fire-ant bite a few weeks later.

    The brand name (ick) is Icy Hot. It's a moderately thick liquid, nearly a gel. Look for the word lidocaine on the label.

    I can imagine it would be a bad idea to apply a lot of it, over and over. But a lot of Tylenol is a really bad idea too. And if it were me, I would prefer something which actually anesthetizes the area, as opposed to "raises the level of tolerance for pain." (Tylenol never worked for me, anyway.)

    Best of luck to you, everyone here is rooting for you.
    • CommentAuthormyrtle*
    • CommentTimeSep 1st 2017
     
    Longyears' excellent suggestion reminded me that there is a topical form of ibuprofen & other nsaids. A visiting nurse with a lot of hospice experience got a scrip for something like that for my mother.
  1.  
    If the Tylenol can genuinely relieve the pain, I would just go with it. Who cares at this point about liver damage. Normally I would say to try the morphine, but obviously if she cannot tolerate it, that's a no-go. If she's hardly eating anything, the constipation isn't going to be much of an issue. I'm wondering if the time will come when she'll need something stronger than the Tylenol. Maybe you should get a prescription written for something, so you can use it if you need it. Of course, in this climate with everybody worried about the opioid epidemic, it may be hard to get the MD to write anything. (I had the dickens of a time getting morphine for Larry--what, did they think I was going to take it out front and sell it like at a lemonade stand? Or pretend to give it to him, and then take it myself? Sheesh.)
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      CommentAuthorCharlotte
    • CommentTimeSep 1st 2017
     
    Tylenol is for pain - it does not help inflammation. But sounds like pain control, keeping her comfortable is your major concern. I agree that at this point I would worry less about liver damage and go for keeping her comfortable (what i found it could take up to 20 years but most damage is overdose like in suicide or drinking alcohol with it). Maybe get some liquid ibuprofen and add a little along with the tyenol for added pain - they are safe to take together. I don't think the patch is available yet.

    If she is getting constipated and what you are trying does't work, try some magnesium citrate or 'Smooth Move Tea'. The tea works gently - better than a laxative. You wouldn't want to give her a whole cup until your find out how it works, but 1/4 to 1/2 might be just enough.
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      CommentAuthormary75*
    • CommentTimeSep 1st 2017 edited
     
    You've had some good suggestions. Here are mine.
    Use Tylenol, but try not to exceed 4 grams daily.
    I get the best results by taking two 650 mgms.(extended-release) tablets at 8:00 a.m. and another two 650 (extended release) tablets at bedtime.
    If necessary, I'll take an additional 500 mgms. in early afternoon and another 500 mgs. at suppertime.
    Therefore, my maximum daily total is 3600 mgms., which is under the 4000 mgs. (4 grams).
    Keeping a steady, low dose of Tylenol always available in blood stream seems to stop pain from getting out of control.
    I use Voltaran anti-inflammatory ointment (available over-the-counter) on sore joint(s) if necessary. Avoid getting ointment in eyes.
    One daily enteric-coated aspirin has a very small anti-inflammatory effect and won't upset the stomach.
    Use physical aids: pillows for props, heating pad (low and supervised), lambskin pads.
    Morphine is best saved for the final few days of possible agitation and difficulty swallowing.
    I agree with other posters about liver damage being the least of your worries.
    Do you have hospice on board?
    • CommentAuthorbhv
    • CommentTimeSep 2nd 2017
     
    You might try ibuprofen anyway because joint pain is generally inflamation. My doctor has me taking 600 mg twice per day for an injured tendon. My friend who was a hospice nurse takes 800 mg twice per day for joint and back pain. I have never been told to take it with food. I don't eat breakfast and take ibuprofen in the morning with no problem. My nurse friend also said the prescription strength works much better than OTC. Tylenol does nothing for my pain and makes me immediately nauseous. Or Aleve? It is for inflammation but is not the same as ibuprofen.

    You might try one 200 mg ibuprofen yourself. That has been my magic elixer for years.when I feel so anxious I am about to jump out of my skin. One works just fine for me. Of course, it might be a placebo effect in that instance.
    • CommentAuthorLindylou
    • CommentTimeSep 2nd 2017
     
    Hey guys, you are the greatest. You've given me so much information and have, as well, helped me put things into perspective.

    So here's the thing. Looking at the tylenol dosages I had been giving my partner I have followed the instructions written by the doctor, not the instructions on the liquid tylenol bottle from the pharmacist, having been assured by nurses at the PACE program that this was the correct thing to do. It looked to be a particularly low dose, but my partner is a wee little thing at this point. I've been giving this small dose to her since January PRN. But recently, within the last two weeks, it had not been working and so about a week ago I just went ahead and doubled the dose. It helped. Which, when I said what I was doing, caused the freak-out at our most recent team meeting. They didn't freak out, I did, after I left the meeting. But they gave me the scripts for ibuprofen and for morphine, as well as prescriptions for bowel meds, before I left the meeting. Choice of what to do obviously being left up to me. All this PRN and "as needed" stuff.

    My first response was to block the whole issue from my mind for 24 hours and take a virtual trip to the cottage on the lake. Short term solution only. And the next day I wrote to you, my on-line very supportive support group. Then, after my 4 PM health aide arrived yesterday I took myself to the pharmacy with both the bottle of liquid tylenol and the med list given to me by the PACE doctor. What I discovered was this: the concentration of tylenol written on the script is different than the way tylenol is actually packaged. Their concentration is different. So, the dosage given to me by the pharmacy is actually the correct dosage. And until a week ago I had been only giving her one-third of the prescribed dosage, which meant I was still under the prescribed dosage when I decided to double it. Does any of this make any sense?

    Soooooo. Since I had the script I ordered the morphine so when/if I need it it will be here on the shelf. I hope I don't need it. I'm going to just give her tylenol at present as long as it works, maybe adding a little ibuprofen if seems appropriate. And I'll look into some creams/lotions that help with joint pain. And look into some of the other suggestions as well when I feel they may be warranted. Thank you, thank you, all. I know so much more now.

    And P.S. On Tuesday I will talk with the M.D. about the confusion she foisted on the both of us. Wouldn't you think her computer would have beeped or something if she wrote the script with the wrong concentration?
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      CommentAuthorCharlotte
    • CommentTimeSep 2nd 2017
     
    Contrary to bhv, I found taking 4 200mg of ibuprofen worked better than the RX 800. After my surgeries, I would take 400 every two-3 hours vs 800 every 4-6. Using that methods the amount in the blood stays constant vs going down before next dosage. Ibuprofen for most people only causes stomach problems over long term - it can cause stomach ulcers just like aspirin can which is why they recommend with food.

    I am glad you better understand the way it is written. Even better if it works better. Remember - doctors are called practicing medicine for a reason!

    I remember when my bil (in his late 80s) was in so much pain because of bone on bone throughout his whole body my sister would only give him one hydrocodone a day for fear he would get addicted. He was dying - who cares!
    • CommentAuthormyrtle*
    • CommentTimeSep 2nd 2017
     
    lindylou, Your last sentence contains a typo. It should read: "Wouldn't you think her BRAIN would have beeped or something if she wrote the script with the wrong concentration?"

    I don't get it with these docs. When I asked my cardiologist what I could use for joint pain instead of ibuprofen, he said I should ask my primary care physician. When I asked the PCP the same question, he said I should ask the cardiologist. When I asked the cardiologist how important it was to take the drug he prescribed with food (since another of my other scrips has to be taken on an empty stomach) he said I should ask a pharmacist.
    • CommentAuthorbhv
    • CommentTimeSep 2nd 2017
     
    Thanks Charlotte. I am going to try your plan with the ibuprofen. Sounds good.
    We were driving the other day and DH pointed at the clouds and said he used to fly there. It was the most coherent sentence in quite some time. Our KC-10 had.color weather radar. They could thread their way through the thunderstorms. And no one was better at it than my DH. Also reventlynhe pointed at some crows.and hawks and said he used to do that.
    • CommentAuthorLindylou
    • CommentTimeSep 2nd 2017
     
    bhv, what a wonderful story. The more I live with this disease the more I feel is that our spouses are not empty shells. What they are and who they are and what they've experienced is just locked up tight and completely inaccessible to them until just the right moment occurs, and it is just a small moment. I'm glad he remembered flying for that small second. :)
    • CommentAuthorbhv
    • CommentTimeSep 3rd 2017
     
    Sorry, Lindylou, this.is the wrong thread. I got lost. But glad you liked it anyway.
    I woke up early this morning with tears in my ears thinking of you and your partner. I want to meet her before she is gone. I want to hear her voice among the family harmonies. Wish I wasn't on the opposite coast. I want to bring you a cup of tea. To place a cool rag on her forhead and sit with her while you take a shower.
    I found myself remembering a renaissance fair in Minnesota. Imagined dancing with you and your partner with flowers in our hair in a grassy field while a lute was playing. Then I figured Wolf and Diane should be there too. Then Mim and Myrtle came by. Charlotte, of course, Mary75, Maryin Pa, kycaregiver came. Then I thought our field should be in Kentucky, far above that emerald green river, so the lute will.echo in the hills. And when the sun goes down there will be a million, zillion fireflies. (No mosquitoes.)
    I sincerely wish there.was tylenol or ibuprofen to tackle this.deep, profound, horrifying, sense of loss. This pain is overwhelming sometimes.
    • CommentAuthorLindylou
    • CommentTimeSep 3rd 2017
     
    Awww, bhv. You bring tears to my eyes. My partner took her meds this morning in bed. The tylenol at the new dosage is working. I am so glad. But the AM care of bathing her and dressing her and getting her up took all the starch out of her. She has slept all morning listening to the Celtic Women sing, not rousing enough to have either food or beverage. I am beside her now - we are just being together. But while I am holding her hand, I am at the same time in Kentucky with my friends from Alzheimer Spouse as we weave flowers together, listening to music outdoors - the best place ever to listen to music.
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      CommentAuthorCharlotte
    • CommentTimeSep 3rd 2017
     
    Since the end seems near, you might want to consider not dressing or getting her up. Just do a bed bath, put clean nightgown on her or whatever is easiest. This way you are not exhausting her so much or having all that extra movement causing more pain. She can sit up in the bed - doesn't need to be in a chair.
    • CommentAuthorLindylou
    • CommentTimeSep 4th 2017
     
    Charlotte, we are almost at the point you describe, her just staying in bed. There are two reasons to begin thinking about this - one, getting out of bed is a bit stressful for her, and two, it is difficult for me. I basically just scoop her up as if she were a three year old, one arm around her trunk and the other under her knees. And using the best body mechanics I can manage I transfer her. But I have to realize I am 72, not 42. I've been continuing to get her up because her hips do get uncomfortable in bed, even with pillows. With a couple of hours in a chair she seems content for a while - then she needs to lay down again.

    Mary75, you asked about hospice. I've thought about it. I could transfer her from PACE to hospice, but we have a tremendous team of aides who are coming in now to help. They are all so gentle and loving to my partner. They all know the routine of caring for her, and are adapting with me to her new needs. I would hate to disrupt this. Nurses and an occupational therapist are coming in from PACE and are helping me arrange things here. I think we are okay. Of course there are hiccups along the way - the pain management issue was one of them - but I really believe that that kind of thing would happen with any choice I made.

    Again, thank you all for your involvement. Just knowing you are there and are caring makes this ordeal more bearable.