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Joined: Tue Aug 30, 2011 1:42 pm
Posts: 110
Post Pain
My mother has had ongoing gut pain for several years now. It just doesn't go away. We have sent her to every specialist possible. She has a lot of neurotransmitter related issues - bi-polar, ADHD as a child, seasonal cycles, chronic depression, borderline personality traits, chronic anxiety, Parkinson's, and now dementia. I am trying to get her some relief from this gut pain, but I have no idea what to do. It is worse when she is anxious - typically when she is anxious about her drug times. It used to be that she had this pain during the wear off time of her Stalevo - now it is all of the time. She is in a memory care oriented ALF, and they decided awhile ago that she was over medicated because the doctor had had her on carbadopa levadopa between the stalevo times. The doctor agreed and took her off if the carbadopas. My mother had pain before she was taken off of them, but I think it is even worse now. Does anyone have experience with this pain and any thoughts on how it relates to the medications? Are we looking at a choice between being overly "doped up" and having pain? I find the inability to make the pain manageable for her the most challenging aspect of this disease that we have yet faced. Any thoughts or advice is welcome.


Thu Oct 11, 2012 1:38 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Pain
Liz, yes, we went through a similar situation and additional carbidopa/levodopa seemed to alleviate the pain he was having in his left hip and thigh. After three neurology consults, , X-rays, MRIs and orthopedic exam, it was determined that muscle stiffness [or related nerve conduction] was the culprit. Of course, increasing the carbi/levo ushered in new issues but at least the pain was gone.

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 Oct 11, 2012 2:12 pm

Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Pain

My mother had similar issues with pain, though her medical issues are not as complex as your mother's and she has never taken carbadopa levadopa or stalevo. About a year ago, she complained bitterly of pain despite wearing a pain patch continually and using vicodin PRN for break-through pain. We had everything checked out every which way and there was never an objective cause determined.

My niece, who is a nurse practitioner in oncology and works a lot with pain issues, suggested it might be what she called "psychic pain," which she explained is pain that is not experienced as we think of it, because of a physical cause, but happens because of a person's emotional response to his/her situation. I'm sorry I cannot explain it any better than that, but it's not my area of expertise.

Anyway, we just muddled through it the best we could with the pain meds, and the NH staff was very good about making sure she had vicodin as needed. In time, my mother's antidepressants were changed because the old ones weren't really doing their job, plus she was having a lot of anxiety. Interestingly, after those meds were changed, she stopped complaining of pain. At the same time, her dementia progressed significantly. I don't know if the cessation of her pain complaints was due to the antidepressants doing their job or her reduced awareness in general when the dementia progressed, but today it is a non-issue.

Sorry to post such a long message .

Good luck,


Thu Oct 11, 2012 3:08 pm

Joined: Tue Aug 30, 2011 1:42 pm
Posts: 110
Post Re: Pain
Ladies -

Thank you both for your replies. That is interesting to hear. I know there is a relationship to her disease, but I have no clue as to what it is for sure. She had a psychotic break a year and a half ago and the doctors took her off of a lot of stuff. At that point, I believe that they changed her anti-depressant, took her entirely off of the benzos (which she was abusing), and took her off of the sleep meds (but added seroquil in). I think it was also around that time that we understood that we were dealing with dementia. I am wondering if we could convince someone to put her on vicadine. I am not at all sure it isn't kinder to let her be drugged at this point and stop trying to save her quality of life. Being in constant pain and fear because you are convinced that you are always in a state of crisis is no way to live. She called me 8 times today always certain that she was going to die. Unfortunately it is like this most days.

Thanks again, Liz

Thu Oct 11, 2012 9:16 pm

Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Pain
Hi Liz, I know exactly how you feel. Dad has a morphine patch and on paracetamol PRN also, but there are days he is in agony. We have begged for stronger meds for pain, but his doctor refuses on the grounds that anything stronger might kill him!!!!!!! He is 87, immobile, totally depedent and has aboslutely no quality of life. I cannot understand why they won't give him stronger pain meds, but I think the doctor is afraid that if they kill Dad that we would sue him. I have told him that I would sign anything to relieve him of that worry, to no avail. There is nothing worse on this earth than to sit beside him whilst he moans in agony, and that I cannot help him in any way. Sometimes I have snuck in some of my own pain meds and given them to him, as it is cruel to just stand idly by. I also am of the opinion that Dad would be much better 'doped up' than suffering as he does. Fortunately, he is not in pain every day as he used to be - why I don't know - or maybe he is trying to hide it from me as he knows how upsetting it is. I have no answer for you, but I do know how you feel. God bless and take care,
Ger x

cared for Dad who passed away on January 28th 2013 R.I.P.

Fri Oct 12, 2012 4:35 am
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