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 Pain complaints 
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Pain complaints
Yes, I share your concern about making so many med changes at once when it's not clear what's doing what. You can only do the best you can.


Mon Nov 29, 2010 7:54 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Pain complaints
You know, this doctor is very good but she's a family practice doc, not a neurologist, and I don't think she is versed in LBD. The pharmacist at my mother's old pharmacy is top notch but now the doctor has to work with the pharmacist who serves the NH. I just don't know how well they are figuring out this stuff. I was really hoping they would try a pain reliever other than Vicodin, but maybe they didn't want to change that in addition to everything else. I am going keep an eye on things and see if my mother continues to cry from pain every morning.

Julianne


Mon Nov 29, 2010 8:45 pm
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Joined: Sat Sep 11, 2010 6:25 am
Posts: 9
Post Re: Pain complaints
Julianne - I know how consuming these kinds of concerns can be. it may or may not be a coincidence. I know with my mother all medication changes had to be made very, very slowly. Family members are truly the ones who recognize how medication is impacting a loved one. I'd keep the health professionals posted on the changes you see. Unfortunately this disease changes by day so it is extremely difficult to manage medication. We found as Mom's disease progressed she was on less and less medication. It is the not knowing that is hard - is it the meds or the Lewy Bodies? You are a good advocate for your loved one - caring and concerned that they are being managed well. It is a daily struggle.


Tue Nov 30, 2010 7:46 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Pain complaints - what about Ibuprofen?
Is there a danger in giving one or two Advil Liqui-Gels to calm his Lewy pain? Is there something else 'over the counter' that works better than Ibuprofen? There is no indication that Dale is prone to heart attack or stroke. Those are the main warnings on the bottle.

His complaints about pain are more frequent now.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Dec 13, 2010 11:25 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Pain complaints
Leone, I don't know, but maybe you should just check in with his doctor. It seems like Lewy affects everything, and then there are drug interactions to think about. Nothing is simple anymore, is it? It is really hard to hear a LO complain of pain, though. I am so sorry Dale is in pain.

I had two long phone conversations with my mother today about pain, with her crying and crying. Within the last week, she has started complaining of pain in her neck, in addition to the pain in her back, hips and knees. The doctor ordered PT for her to assess the pain and the therapist has been going over three or four times per week to do exercises with her. Now she bitterly complains and cries about hurting during and after the PT. And the therapist told me he notices she is leaning forward a lot while walking and when sitting in her recliner, apparently the Lewy lean, and he feels this is the source of her back and neck pain. I don't know how much can be done for that.

Some days I feel I am been ground into dust by her disease. I keep my sister (across the country) updated on the progression of the disease and now that things are significantly worse, it is really affecting my sister. So now I am also spending significant time supporting her, actually reminding her that we can't fix this and have to be prepared, because I don't think she is facing it yet. I want to help her but it does drain me even more.

Of course, Lewy is wicked and relentless. It is nearly a year since my mother's LBD diagnosis (preceded by several years of nonspecific dementia diagnosis, preceded by several years of symptoms we did not recognize as the onset) and it feels like eternity. I am so tired.

Julianne


Tue Dec 14, 2010 1:53 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Pain complaints
Frank's Dr said he could have Tylenol, extra strength, (NOT Tylenol PM).

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Tue Dec 14, 2010 7:54 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: Pain complaints
Julianne - sending you a big hug today. I know just how it feels, so does everyone else here. It seems like it will never end. Hang in there and get some support for YOU. Do you have a local support group to go to?
Can you take some time out to do something nice for yourself, like get a massage, go skiing, whatever would help you out? Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Dec 14, 2010 4:02 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Pain complaints
Thank you, Lynn! It is a huge help just to have this forum for venting to people who really understand. We are in a very rural area and there are no support groups.

Yesterday was another big go-around with my mother. The doctor had ordered PT to evaluate my mother concerning her complaints of back and neck pain. PT concludes she is leaning forward when she uses her walker and sits in her recliner, and that is causing her pain. (I wonder if this is the beginning of the Lewy lean?) So they are doing exercises with her for that and she bitterly complains that it hurts. The doctor went back to the low dose Fentanyl patch with Vicodin TID PRN, and Ativan TID PRN. I don't know what, if anything, will actually solve her complaints.

Last night, I went out to dinner with a couple of good friends with whom I have spent almost no time in the last year, so that was helpful. I do need to find some outlets for myself, you are right. It helped just to talk and laugh with a couple of crazy women for an evening!

And also, a big hug to you, Lynn, on the passing of your dad. I think I was out of town when it happened, and read it later in the forum. I hope you are finding peace in knowing that you did all you could for him. :o)

Julianne


Wed Dec 15, 2010 11:16 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: Pain complaints
Julianne & others - has anyone tried accupuncture for your LOs pain?
Thanks, I have my sad moments, but my dad's quality of life was so miserable, I am mainly relieved that he is no longer suffering pain and the indignities of his condition. Watching someone you love suffer is the worst. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Wed Dec 15, 2010 8:57 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Pain complaints
Lynn,
Yes we tried accupunture and didn't do anything that I could see, the one thing that I think helped most was the massage Therapy !

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Irene Selak


Wed Dec 15, 2010 10:31 pm
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Joined: Wed Aug 11, 2010 2:34 am
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Post Re: Pain complaints
Dad has just been put on the next strength of Norspan patch for his pain. He has been leaning forward when walking for a while now but the sinemet given a week or so ago made a little difference to his posture. I was told this was a parkinsons symptom and hence the sinemet was prescribed. When he was initially put on the lower dose patch for pain he spiralled downwards, incoherent not walking for a few days and it was shocking to see how they are affected by it but he came through the other side and again with this higher dose he spiralled downwards again not being able to put one foot in front of the other not feeding himself and incoherent. That was two days ago ( he also had a fall and looked like he did 2 rounds with Ali). I visited him today and he was walking about and at least recognized me and though was talking delusionally did converse with me. A turnaround if ever I saw one. Shows that you need to just wait it out and see how they come out of the new drugs we try.


Thu Dec 16, 2010 3:46 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Pain complaints
Kelli, you are right. Sometimes these medications can seem to be making them worse before they get better and we know that there are some medications that really DO make them worse. I jumped ship with my husband's Seroquel at first for the same reason but tried it again later with good results. And this is such an up-and-down disease, anyway, it's hard to know whether adverse symptoms are a result of the disease or the medication.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Dec 16, 2010 9:23 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Pain complaints
I'm placing this post under this 'pain' heading because Dale complains a lot about back pain. I've decided to give him one gel tab of Advil in the early morning rather than ask the doctor for something stronger.

Yesterday was such a good experience in the afternoon all the way until bedtime that I wanted it to continue. He is just great this morning. A strong cup of coffee (for blood pressure issues) and the Advil (for pain) seem to be a good combination for him. Maybe we've found the answer .... for now.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sat Dec 18, 2010 10:04 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Pain complaints - back pain
As I posted in another thread, Dale constantly complains about back pain... and I have had an 'inspiration' which I hope will work.

I'm going to make sure all the chairs in which he sits have a way of using the strength he still has in his arms to help him sit down carefully. In other words, all his chairs need strong arms. He has bars on either side of the toilet... but he doesn't always use them effectively. In fact, he has broken a couple of toilet seats. I've asked if he wanted the handicap type toilet seat which is provided to him in hotels - and he doesn't like them. :shock:

He tends to just fall into a sitting position (even on the toilet) and I suspect that is very hard on his back. It may be the reason for the constant pain.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sun Dec 19, 2010 2:31 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Pain complaints
Leone,
Be careful here in the tiolet area, this is exactly how my husband fractured his back by falling back on the seat, he fell so hard he actually cracked the bowl, had to have a new one installed and honestly I believe in my heart of hearts this was the spiraling point for my husband , he died 10 months later !

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Irene Selak


Sun Dec 19, 2010 3:07 pm
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