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fligirl58 Posted November 2014

Doctors and heavy duty narcotics.

My mom is in chronic severe pain. Her pain management doctor is just an a**ho** as far as I am concerned. She has been seeing him for at least 9 months and he just throws his hands up in the air and says I just do not know what I can do to help her. He will NEVER return my calls re: her pain. Anyway I told my sis that she is going to have to handle this from now on, he just blows me off. So We had a conference call with another pain management doctor and he made a suggestion that her primary pain dr consented to. So we were all happy that this will make a big difference in moms life. So She was already on 60 mg of oxycodone and still in pain. He added oxycontin. His instructions were not clear and the pharmacist did not know what was going on and I called him yesterday and begged her to call me back and he did not. She is supposed to take a 20 mg oxycontin every twelve hours with a 10 mg of oxycodone for breakthrough pain. Well there is no breakthrough pain. The meds do not work. and the prescription says oxycontin every 8 hours. I finally called the medicare nurse hotline and she gave me new instructions that are very clear and hopefully will do the trick. My problem is that I don't know what I am doing with this kind of meds for an 85 year old woman who has been known to hallucinate on morphine which is why she cannot take it. I am afraid I am going to give her to much and something will happen. Well I just now an trying the new directions and will see if this works. The nurse was outstanding and so compassionate and nice. Do any of you have this type of problem with getting proper instructions from a specialist? I have been so upset about this and seeing mom in even more pain since it changed is killing me. I value any advice that I can get. Thanks

fligirl58 Nov 2014
Jeannette, Tex, equillot, ff, chicago, Pam and all thanks for the information. Just to answer a couple of your questions. She was taking 6 10mg oxycodone , three and then three 5 hours later with a prednisone 1 per day. Now she is on 20mg oxycontin every four hours and then 2 oxycodne every 4 hours except for in the middle of the night. She is going to see a rheumatologist on the 20th. We originally stopped the prednisone but added it back in yesterday. She went back in to lay down because the pain is so unbearable. The pain dr will not call back. The visiting nurse is going to be here shortly and I am going to see if she can get some more information. Seeing mom like this breaks my heart. I have suffer from pain as well but I take ibuprophen and soma. I would love to get some weed but somehow I think it would just be for me, to get high. lol. she would never take that. Will keep you posted on how we get this under control.

fligirl58 Nov 2014
I am not sure about pot for pain and not sure if it works but with mom Alz it would make her loopier. I think you get high and forget about your pain. Lol this is not working at all and we added the prednisone back in. Mom used to be worried about addiction but not ant more. All I know is that I could not take the pain

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eguillot Nov 2014
fligirl58 - my Mom also suffers from chronic pain. She has had 2 back surgeries that resulted in 4 levels of fusions (which are now "failed", she's had spinal cord stimulator implanted, and, like your mother, she currently takes oxycontin 2x/day with oxycodone for breakthrough pain - but she can take that up to 4x/day. She goes in for epidural shots, adhesiolosis (sp?) and is now looking at a pain pump. She is NEVER without pain. She's tried everything, including the laughable suggestions of acupuncture and massage. She said the acupuncture didn't help and the massage hurt. Mom is very concerned about the amount of narcotics she takes. We have a lot of addiction in our family, so she is well aware of the dangers. She writes down in a notebook the time of each pill, and will not take another one before it is due no matter how much she is hurting. I appreciate that she remains aware of this, however, at her age, I am more concerned about her comfort than I am about her becoming an addict. I know she's never going to get "off" these drugs, so does it really matter if she's physically addicted to them? Her pain is not going to go away - it will remain with her, and get worse, for the remainder of her life. We will soon be moving to Washington State. Mom would never consider smoking marijuana, but I'm hoping I can convince her to try the edibles. To her, that might be ok. She was never a smoker of anything, and I don't think she could do that, but the edibles might work. I have fibromyalgia and will give them a try as well. Again, no smoking. Ex-smoker here - not going down that rabbit hole :)

fligirl58 Nov 2014
This is so crazy. I am following the nurses instructions but mom is still in pain. When she was on prednisone she actually felt a bit better. So my sis called the pharmacist and said it was ok to give her the one prednisone. So we will see what happens with that. I am just so stressed about all this medicine.I have to set my alarm at 1 am and if she is sleeping its ok not to give her one. Then 5 am when I start the meds for the day. I just hope something works for her

timbuktu Nov 2014
I meant to say she WASN"T kidding about the pain.It's the one thing she is very truthful about.

timbuktu Nov 2014
Also as far as getting "hooked" on pain meds. I know pain meds get a bad reputation , but for chronic pain this is what they are for. My mother would have NO quality of live without the time release morphine she is on. We see her MD now about every 3 months,he will give me prescriptions for 3 months at a time now but that is only because he has been seeing her for 2 years and feels comfortable with us. He still will urine test her every few visits , can't say I blame him, I am sure he has had patients whose families sell the drugs or are taking the drug themselves.But the morphine has really helped her, she can participate in physical therapy which also helps lessen her pain,she can go to church,go out and get her hair done.She is never 100% pain free but on a pain scale of 1-10 she stays about 2-3.Heck that is what my pain scale is and glad it is just that, I have had 2 back surgeries in the last 11 months and I am only on Motrin,as an old nurse I guess I just get used to feeling that way but my mother's pain was debilitating,she is a narcissist but she was kidding about the pain, I totally believe her, I have seen the MRIs and xrays, she has scoliosis with osteoarthritis, her spine looks like the letter S that has twisted and fallen on it's side. Chronic pain is difficult to deal with from a caregiver point of view because you can't just simply make it go away,it can leave you feeling absolutely helpless.Also the person that is afflicted with it, their personality changes often not for the better, depression can become an issue. You have your hands full. Please let us know how you are doing and what you have been able to find out. I feel really bad about your situation I guess because this particular issue of chronic pain is what my mom is dealing with.

timbuktu Nov 2014
OMG! I feel for you. Chronic pain from osteoarthritis is what my mom deals with. This has been diagnosed by MRIs and xrays. Have you ever had a diagnosis as to what is the underlying cause of your mom's pain, it is coming from somewhere.There is RA pain, or nerve ending pain such as what diabetics have to deal with, then there is skeletal pain, RA is an immunological source.She needs a good workup to pinpoint where this pain is coming from because it sounds like she feels pain all over, but it does have a source.I'm sorry she has problems with morphine, this is what my mom is on and thank god it works. Also be careful if any of the pain meds are of a time release form. DO NOT break these apart as you could give a very large dose in a short amount of time and cause a big problem for your mom.Also if they are in capsule form DO NOT open the capsule and give her a "bit" of the med, you have no way of knowing how much of a dose you are giving. I am sorry you are having such a difficult time with a pain MD. I have been lucky that I have my mom seeing a pain management MD that is associated with a major university hospital. She also has steroid injections in both sacro iliac joints about every 3 months that help.Don't give up. I guess it is easy for me to deal with MDs , I am a retired ICU and OR nurse so to me they are just another person who puts their pants on one leg at a time like anybody else but some of the do get an attitude. I don't know where you live but start looking at the larger hospitals around you and start calling and asking questions, it will take some homework. Again, if she hasn't had them done, she will need an MRI to help with trying to see why and where about her pain.

freqflyer Nov 2014
I say yes to medical cannabis only if it is in oil form. Smoking marijuana causes the heart rate to accelerate and one's blood pressure to go sky high.... not a good combination especially as we get older and run into heart issues.

Chicago1954 Nov 2014
Yes, to medical cannabis. It wouldn't take much to see if it helps.

JeanetteB Nov 2014
What a tuff situation fligirl... You cannot simply take her off those pills, no way... that would be a nightmare for her at her age. One she may never wake up from. She's been on them far too long to even attempt it. Nor can you slap a patch on her and hand her a joint. I think the oxycontin is more of a time released all day pill with smaller amounts of oxies thrown in for breakthrough pain. I'm inclined to think she's not getting the same dosage as she was before? This could be very upsetting to her system. Did you ask if it's the same dosage amount?

You could try suboxone. It works for pain as well as the awful withdrawals from opiates. You've got to be careful with it also. A little goes a long way...

Good grief, advice from the nearest heroin addict?

MILLIONS of people get hooked on prescription medication especially the opiate ones every single year. They are not heroin addicts.

Trying any other approach without slowly weaning her off and or going the suboxone route would be

pamstegma Nov 2014
Good grief I would be looking for advice from the nearest Heroin addict. She is on a LOT of meds and has probably become resistant to them working at all. Why not acupuncture or lidocaine patches? Massage or PT? Cannabis?

freqflyer Nov 2014
fligirl58, what has always concerned me about prescription medicine is that the same dosage is given if one weights 95 lbs or 300 lbs, be them male or female.

My primary doctor understands my concern so any new meds she gives me, it is ok for me to break the pill in half or in quarters to see if I can tolerate the pill. For some strange reason child dosages work better for me.

Prescription pain pills are tricky, I know my sig other has had issues using oxycontin for back pain.... the problem he has is that he will also use other over the counter pain pills while using oxycontin.... the last time he did that I had to call the Paramedics because he fell and was very disoriented.

Sometimes I think if we use too many over the counter pain pills for years on end that our body becomes so use to the pills that the pills don't have the same impact. I never was one to take any pain pills, not even aspirin, I just try to work through the pain, but I understand some pain can be unbearable... after surgeries I was ok with just using Aleve or something similar.

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