I am desperately trying to find some help on what to do with my 81 year old mother who has been on fentanyl duragesic patches for 8 years for what appears to be psychosomatic pain. 2 weeks ago she was so sick she had to go to the hospital and her doctor (not a pain management specialist) said she needed to get off the narcotics, so he took her from a 75 mg to a 50 to a 25 and then nothing in a week. Discontinued the Oxicontin she also took, and kept her sedated with ativan. Sent her home with lyrica, librix, and cymbalta. She felt great for a few days, then started hurting, very anxious, and became delusional and hallucinated. We took her to hospital where they were about to check her into psych ward when she snapped out of it suddenly, was perfectly OK and demanded to go home. She blamed the Librix and refuses to take it again.Next day she found a 75 patch at home (we thought we had removed them all) and put it on. Everything was rosy until it wore off after 3 days and now she is hysterical. Went to the ER and they gave her tramadol, but she says it makes her stomach hurt more and refuses to take it. She is begging me to find her a doctor who will give her more patches. She is furious that we threw away all her patches while she was in the hospital.
I dont' know what to do. Her stomach started hurting when my dad died 8 years ago. We have been to many many doctors, including 2 weeks at the Mayo Clinic and they can find NOTHING wrong with her. She lives alone, refuses to move to where I live (an hour away) and is very depressed. We have noticed that she can say her pain is 10 on a scale of 10 but if she has someone paying attention to her it miraculously disappears.
I think she just wants to be drugged to forget her problems and her anxiety causes the pain. We were referred to a Pain Management Clinic in 1999 and they started her on the fentanyl, after oxicontin and oxicodone became ineffective. She has taken Lortab or Tylox for "breakthrough" pain, usually the max she can take in a day. She has very few good days, she's almost always in pain or feels "sick". The PM doc we were going to left town and the others we have consulted say narcotics are not appropriate for undiagnosed pain or pain that is psychological and refuse to prescribe it for her. Her GP was refilling her rx until she found another pain doc but now he can see she won't be able to find one who will give her narcotics and she won't go to anyone who refuses.
She put on her last 75 patch 6 days ago and has been hysterical and crying for 3 days. I have home health aides and RN's hired to be with her 24/7 and she has told them all to leave. She went to the dr 3 days ago and to the ER yesterday and they just tell her there is nothing they can do because there is nothing wrong with her. She wont' even talk about seeing a psychiatrist, she just wants to have her pain gone.
Any suggestions? Should she just go back to the fentanyl if we can find a doc. She's 81 years old, who cares if she's addicted, but I'm afraid it is so hard on her and she has pain anyway.
I agree with Happy's post. Right now I am detoxing from fentanyl. It is the most horrible thing to have to go through. I did have surgery which required me to have it, but I am still sometime psychosomatic, they call it conversion disorder. Anyway dropping that fast will send anyone into a tail spin no matter what they give you. I also know that after the physical stuff the depression is SOOOOOO, SOOOOOO bad that I'd be worried about your mom. It sounds like she wants to be taken care of in her way. She wont admit it probably but being on the meds gives her something to stay comfortable probably in a very uncomfortable state mentally. How long has she been living alone, how long were there people growing up or living in your house. I wouldn't mess with the fentanyl withdrawals right now, the depression that came with it made me very suicidal. I had to adjust to a different narcotic until this passes. I'm 38 not81. I hope I helped, but I do know that this withdrawal is one of the worst with depression.
It is very difficult to know how much of her pain is physical and how much is psycological. When it comes to chronic pain it usually results from an injury or surgery and then after the physical part heals you can still have pain, "legitimate pain". That is the definition of chronic pain where your nervous system as "learned" the pain and even after the injury/surgery has healed your nervous system is still sending pain signals to your brain. The pain is NOT psychosomatic because the pain signals are being sent. However with your mother the pain is very difficult to determine accurately. Since you said it started right after your father died and the doctors can find nothing physically wrong, it may be psychosomatic. Your mother is also exhibiting addictive like symptoms. Trust me NOONE should have to endure being in active addiction because the mental pain from that is VERY BAD . Right now I think you should get your mother into a detox facility. I don't care what her age is, NO ONE should be made to suffer because some doctor says "you shouldn't be on narcotic" and then drop you down and off way too fast. Get her into a detox facility because the withdrawal from the fentanyl patch can be EXTREME and she needs help to get through the withdrawal. Detox centers can be very helpful and give her medications to help her through the withdrawals. There is a very helpful medication called SUBOXONE that helps with the withdrawals and can also be used for the pain. Keep us posted on her progress. But do something now or else the withdrawals and depression could become too much for her to cope with. I know from experience how the suicidal thoughts can become overpowering. Keep us posted
Thanks for the advice. I have already suggested detox in a hospital to my mother and she flatly refuses to go to any hospital, says she is not an addict, she just wants the patches back. I don't know where to get them now, her dr won't prescribe and the pain clinic docs won't either. The problem was--the reason she was taken off them-is she was having so much pain even WITH the patches and Tylox, she was hysterical, not eating, crying. I think going back to the patches would help temporarily but it's only a matter of time before they are not enough.
How does one find a doctor who will take a Medicare patient seeking narcotics for undiagnosed pain?
I think your mum should have it
can you go back to the old pain clinic.
I have been where she is ... sometimes the technology is not good enough to find whats wrong, my thoughts are has she had a test fir pancreatis, has she a stomach ulcer, all these things are hard to find. and as the canty be seen like a broken limb or back you get told its in your head
i too was threatened with a psych committal when they took all my meds away except ketamine and i couldnt stay out of hospital, i wanted to die, they tried those psychotropic drugs on me and i started fitting etc and reacting badly rashes etc.
turns out 3 years almost and now they are being held to account for what they did to me and yes i have pancreatitis wgich is excruciating when they took me off the morphine i couldnt eat cos of pain and i lost 30 kilos .... they thought it was cos i didnt want to... hell i love food but it hates me
but i went through hell
i was so upset and eventually i sa dto the pain psychiatriet you have 2 days to post on the pancreatic board i have been on for 8 years and find out what you need or i am out of here, boy was she enlightened one of the patients here in new zealand rang her eveyrone posted and she realised what a **** she had been and all others.... now the top health man has ruled with me against the hospital. but it didnt take the pain and hurt away.
just because they cant see your mums pain doesnt make it not real... i mean she probably hasnt had the right tests, and well shes 81 let her have it
It really sounds to me like your mom has legitimate chronic pain, and an addictive disorder. In that kind of situation, fentanyl is probably not the best solution. My suggestion it to get her to an addictionologist who can treat for both conditions. As has been suggested, Suboxone (buprenorphine) is great for getting one through withdrawals sometimes literally w/o symptoms, and for chronic pain too. It even comes in patches. All your mom needs to know is that the doc is a pain specialist, which is totally true.
Best of Luck - I know this must be very hard for you to know what is best.
Thanks for your ideas. My mother has had extensive testing including 10 days at the Mayo Clinic. Of course it's possible she has a true medical condition causing the pain that the doctors can't find, but I think it is significant that the pain disappears when she is distracted and has lots of company, or if she takes a strong enough anti anxiety med.
I will look into pancreatitis--although food has NO effect on her pain. Her old pain clinic left town. They just sent out a postcard saying they would be gone in 2 weeks and would fill prescriptions one more time and everyone was on their own after that. I talked to another pain clinic today and they said they don't have anything for abdominal pain and she should go to her primary dr. He of course is giving her things like Lyrica which doesn't help at all.
Distraction is widely publicized as a clinical tool to help with cancer and non-cancer pain control. So please don't think that because distraction seems to help with her pain that it's not real pain.
Also, it's very common for docs to find no present cause for a patient with chronic pain. In fact, it is common that CP can be present well after an injury. There are researching right now how to properly treat acute pain so that it doesn't draw out and become a chronic pain syndrome. Some folks have proof for their pain, but many folks do not. This doesn't mean their pain is any less real, or that it is less deserving of aggressive treatment.
Your Mom is probably really in pain and in need of good treatment. As I wrote earlier, it could be that an addictionologist might be the best pro to treat her pain, even if she doesn't have addictive tendencies. The meds he's allowed to use are more extensive than those without the "addictionologist license" for meds like buprenorphine.
Diane, Is your mom's pain only in her stomach? Is she tender to the touch anywhere? I ask because my mom started having pain after my dad died and in the last year of her life(she died on Easter of this year) she was finally treated for pain and we think she may have had fibromyalgia, though it was never diagnosed as such. I was told that fibro can be triggered by a traumatic event and the death of my dad was most certainly traumatic as he was the love of her life and they had been married for 46 years.
I don't know if this can help you but my mom was also on the patch and the last week of her life they added morphine for breakthrough. I think you should keep searching for a doctor who is willing to work with you. Call around to some adult family homes and ask who the residents use as their doctor. Do not call nursing homes. The people who run adult family homes are usually in business because they want to help and will be willing to listen to your story and give you a recommendation. I say usually because there are people who are just out there for the money and don't give a $&*% about their residents.(we had a horrible experience with one of these!)
Sorry, this is so long. Good luck and know that I feel you pain.~Mush
undiagnosed lung and back pain after pneumonia in '03, tmj, migraines,(two failed surgeries for) Kienbock's disease
I also dont think that just because this doctor has decided her pain is pychosymatic (spelling?) that it is, she could have lots of problems and painful issues that wouldnt show up on an x-ray. shes 81, she says she hurts, I agree with everyone else, trust her, find her a new doctor and get her back on her patches, or at least talk to the doctor about starting her back and tapering her much much more slowly. this seems sadistic to me!
I think it crazy to take an 81 year old person off af pain meds if they are in pain. THEIR 81 whats it going to make her an addict?I'm 52 and that withdrawl nearly killed me. I am on suboxone now I was in withdrawal for 3 months from methadone I couldn't take it any more. The suboxone worked great but now I don't know whats gonna happen when I stop it ANYBODY?
I think my mother's pain is a complex issue that is not well understood by anyone who has seen her including myself. She has had much more extensive testing than X rays and tried every pain reliever under the sun. She is not tender to the touch even in her stomach. she says the pain is unbearable, but a doc can push on the spot and she says it doesn't hurt when he does.
I agree that there is no reason to take an 81 year old off narcotics IF they are helping. But they weren't. She had built up such a tolerance that she was in pain even with the meds. The doc thought maybe the meds were adding to the pain and the only way to find out was to withdraw her off them.
But--here's the update---I got her into a psychiatric/rehab hospital. She went in last night. They told her they would NOT give her narcotics and couldn't magically stop her pain, but she could do detox and learn pain management skills. All they gave her last night was Lunesta for sleep. When I left her there at 6 PM she was crying, agitated, angry, wailing that her pain was too much , that she couldnt' go on. I talked to her therapist and her nurse today and they said she woke up saying she felt great, no pain, and has had no pain today. All she has done is talk to psychiatrists and go to group therapy where she was asked what her main problem was and she said loneliness. She didnt' say pain! I am dumbfounded.
I am so so glad that you got your mother into the rehab facility. This is exactly where she needs to be. I can tell you from experience that a drug (especially narcotics) will never treat or cure emotional or spiritual pain. This sounds like what your mother was trying to do since the pain started right after your dad died. I think that she is starting on the road to recovery and I pray that she continues to find the help that she so desperately needs. I am glad that you came here to these boards and posted your problem or else things could have turned out much differently. Please keep us posted on her progress. I pray that things turn out well for her.