SEVERE PAIN- Drug addiction

[sisterofic]

Dear list: I am emailing on behalf of my sister who has IC, IBS, Kidney disease and other illnesses.

She has had all of these diseases for many years. I am very worried about her. She takes the Fentanyl 50 patch and changes it every 72 hours for her intense pain and is addicted to it. She says if she even forgets to change the patch for 1 hour she starts going into withdrawal even with a current patch on. I understand her pain is real and she needs a pain medication but according to her Fentanyl 75 is now the highest dose they can give people because of the FDA and now if her body gets used to that level all she can do is scream in pain. If she goes to the ER all they want to do is pull the medicines.

Is there any real relief from the severe pain with IC? She told me she took one drug 3 years ago to help things and it made her liver start to shut down. I know she already also had Elavil. I also read some things on your web site and I know she already does the microwave packs, special diet and many other things. Her kidneys now shutting down and she will have to go on dialisis soon. She said she traded the pain for the devil by using the Fentanyl patch. Is that true? Have any of you been on Fentanyl and then come off again with any other successful pain relief?

I am very sad for my sister and I want to know can anyone help her tremendous suffering as she stays curled up in a ball crying from her pain even on Fentanyl?:confused:

[vm]

First off I want to say - what a great sister you are!!!! So kind of you to do this type of research for your sister.

It doesn't sound like she is addicted ----- but that she is dependent on the medication. Addiction happens when we take a drug for the high and misuse the drug. Dependence occurs when we have been using a medication for some time and our body has become dependent on it. Two different things.

That said, I know very little about pain medications. I have not had to use them for my IC. You might get a tad more feedback if you post your message on this section of the ICN message boards:

http://www.ic-network.com/forum/forumdisplay.php?s=&forumid=40

It is geared specifically to "pain management". You are fine posting it here --- but I think you might get more valuable information if you also put this post on that board. :)

Good luck and I hope some others have some good ideas for you.

[ICNDonna]

I agree that you are a wonderful sister. And welcome to the IC Network.

What if your sister had diabetes --- would you worry about her taking insulin? I'm sure you wouldn't --- because the insulin would be what she needs to help her live normally. What she does have is pain --- and just as a diabetic patient needs insulin, a pain patient sometimes needs to use pain medications just to help live each day.

If your sister is taking pain medications under the guidance of her physician and not taking more than ordered, she is doing exactly what she needs to do right now. When she no longer needs pain control, her doctor will work with her to wean her away from them. Until that happens, the nicest thing you can do for her is to encourage her to continue working with her pain specialist.

Sending encouraging hugs,
Donna

[blue]

I agree, if she is not abusing the pain medication, she is only doing what she needs to do to get through.

Your a good sister.

[sisterofic]

OK Ladies: I understand that she needs the pain medication but the reason I emailed was because her body is dependent on to the pain medication and requires more of it. Fentenol is the highest narcodic available and my sister is scared because they will only allow her one level above where she is. However, the diseases she has do not have an end in sight which means even though she is taking the current medicines (which I know she needs), her body will no longer respond to the pain medicine and she will be in ALOT OF PAIN with no answers or other options to stop it.

The question I was asking is there anyone out there that had another alternative treatment that helped them back off thier pain medicine- because when that day comes and she no longer has any pain medicine stronger than fentenal (according to her they do not make it) and it no longer works, she will need some answers.

I have also been around the block a few times with my own son's illness to realize that not all doctors have all the best answers all of the time.

My sister is so out of it that she needs a patient advocate. Since her husband is not committed, my parents are not capable I will help her whenever I can.

I just can't stand the thought of my sister screaming in pain with no answers.

[Dixiefireball]

I'm sorry I don't know your answers Wish I could help you. I know Doctor don't always have the answer but how about another doctor checking her out?? I'm sure she has been checked by other doctor before but it wouldnt hurt for another one to check her would it?
I don't know if this will help or not but check this website out www.ic-network.com/handbook there is alot of information there but i don't know where to tell you to go from there.
sending you both hugs and many many prayers
Rhonda

[blue]

I hope you find the answers you need. I believe you said she was already on the IC diet. Try heat, and Katrina has put together a list of things that we all try. I believe she is calling it a pain kit. Go through the posts, I'm sure it has some helpful info. I'll look for the post to send you.

[blue]

http://www.ic-network.com/forum/showthread.php?threadid=7562

Here is the link to Katrina's info. I would suggest printing the information out, and trying some of the suggested methods.

I know your sister can use all the help that she can get.

Good luck, I hope this helps.

[Teri]

I'm sorry that I don't have any words to tell you how to handle this. I think alot of ICers worry who are on strong narcotics...."what will happen when it stops working". I think that is a natural fear for people who are trapped in a chronic pain condition.
I use b & o suppositories plus 4 mg's of dilaudid. These are very strong medications. I have chronic pancreatitis and when I am hospitalized for it they have to give me demerol because I have such a high tolerance with the dilaudid (which is always the hospital's first choice)
These are very real concerns that you have, I'm so sorry that there are no simple solutions. My sister recently died of melenoma and after watching what she had to go thru finding the right dosages of medications to keep her comfortable, I have cut WAY back on my pain meds......she had never taken a narcotic in her life and I am scared to death that if something should happen to me, there wouldn't be strong enough meds to help me:(

sending many many prayers to you and your sister~

[PikkuMyy]

I would suggest either a TENS unit or acupuncture if she hasn't tried them already. A TENS unit helps to disrupt the signals from the bladder to the brain and could lessen her pain. Acupuncture, when done in the same place (at the base of the spine) also does that but also provides pain relief. When I went, my symptoms were in almost total remission, and I used to get the same effects during acupuncture that I'd get from taking something strong, like Morphine.

Even if they don't "work", they might help lessen the amount of pain medication she needs to take. They worked so well for me.

[Pisces228]

My husband was on the patch at a strength of 100 (not sure of the measuring unit) and it was AWFUL. Some of you may have read his complete story on the subject under his post on the Pain Management board. His handle was "Pain_Man" but he recently changed it to "Andrew J" because of some misunderstandings with the board operators.

Anyway, he was on the Fentanyl 100 patch and had severe side effects for six months until we realized WHAT exactly was causing the changes in him (severe depression, anger, aggression, edema, insomnia, and more!). My point is, once we realized what was causing the trouble and switched him back to Oxycontin 80 mg ALL of the side effects disappeared AND the Oxycontin was still able to give him enough pain control to so that he could function. He's in a flare right now, but since his attitude is doing so well, he is able to mentally and emotionally handle the pain much better than he would have while on the patch.

Your sister is "physically dependent" on the patch, not "addicted" which is wholly different. I know that Oxycontin comes in a 160mg strength, which is twice as much as my husband takes now. If he's taking 80 mg for SEVERE pain, and it's helping him, then you might suggest to your sister that she talk to her doctor about switching to a high strength of Oxycontin.

Also, please consider that the patch may be altering her perception of "reality" just as it was affecting my husband.

I'm just offering suggestions. I believe there are ALWAYS answers if you dig deep enough.

As a fellow supporter of an IC patient, I know how frustrating it can be to watch the person you love suffer and feel like there's nothing you can do about it. But that's just not true. I was the one who researched and discovered that it was the patch that was affecting my husband. He was too out of it to know anything at the time. Remember that you play a valuable role in your sister's life.

Keep the faith!

[Member has resigned]

Hi,

I am new, but I do know something about the drug you are referring to. First of all It is a wonderful drug for severe pain management. It is available in Patch and for more severe pain levels in IV form which can be boliced as needed. If she is not already doing so she should get in touch with a pain clinic. Many cancer hospitals have wonderful pain management facilities that are open to people without cancer but are more experienced in severe pain management with trying to maintain a quality of life. I dont know where your from but many major cities have such hospitals.

Good luck

[Amanda]

I thought this may be something you'd be interested in.

Amanda

Addiction v. Dependence

Q: What is the difference between being addicted and being dependent?

A: Fear of addiction has prevented many physicians from prescribing needed pain relief and many patients from controlling their pain and reclaiming their lives.

Pain doctors have known for years that taking opioids over long periods of time for medical reasons does not have to lead to addiction. More than a decade ago, neurologist Russell Portenoy, who was most recently President of the American Pain Society, reviewed studies of almost 25,000 cancer patients. Most of those patients had been on opioid therapy for many years. Of the whole group, very few showed any signs of drug abuse, drug craving, or drug-seeking behavior.

Every one of these cancer patients was dependent on their medication. However, their physical needs were worlds away from addiction. Addiction is a biological and psychological condition that compels a person to satisfy their need for a particular stimulus and to keep satisfying it, no matter what.

It is a compulsive behavior that demands more and more drugs, regardless of the consequences that lead to dysfunction. A person who is addicted to opioids has a disease that undermines optimal function and drives one to compulsively use a drug, despite the negative consequences.

The pain patient who is effectively treated with opioids finds life restored-even if he is dependent on them. With the pain muted by stable and steady controlled use of long-acting opioids, a patient can reclaim his life, go back to work, return to family life, and pursue favorite pastimes. Dependence is a physical state that occurs when the lack of a drug causes the body to have a reaction. Physical dependence is solely a physical state indicating that the body has grown so adapted to having the drug present that sudden removal of it will lead to negative consequences such as a withdrawal reaction. This can occur with almost any kind of drug.

A good example of dependence is a heavy coffee drinker's use of caffeine. If you are used to drinking several cups of coffee each day, you soon learn about physical dependence when you miss a day or two. This does not mean you are addicted to the caffeine; it only means your body is surprised not to see what it has come to expect.

In the case of opioids, a certain amount taken every day fills the glass, and no more may be needed or desired. If the medication is removed, the consequences are physical (sweating, running nose, diarrhea, racing heart, or nausea), not psychological.

As any diabetic will testify about insulin, or any heart patient will testify about blood pressure medication, dependence is not necessarily indicative of addiction or drug abuse. In fact, regular use of these medications may be essential for good health.

The difference between a patient with opioid addiction and a patient who is dependent on opioids for chronic pain is simple. The opioid-dependent patient with chronic pain has improved function with his use of the drugs and the patient with opioid addiction does not.

Copyright © 2004 Discovery Communications Inc.

[amanda18]

I've been through the physical therapy, the e-stim treatments, hydro-distension, you name it... the only time i had medication for my pain was after the distension because it involved surgery. My MD and urologist both have told me i cant have any pain meds because i will become an addict since IC pain is so continual. So how is everyone else accessing the medication? I laid and cried in my doctor's office during a flare and they looked at me and said there is nothing they could do. Help if you know info. on how to get this from the MD in the USA, specifically Michigan. Thanx guys!

[ICNDonna]

Amanda18: If your current doctor is unwilling to treat your pain, it may be time to seek a second opinion from a different doctor.

Sending warm hugs,
Donna

[XoChelsey03Xo]

I really don't know what to say. I'm so happy your helping your sister in her time of need. I will be praying for your siser and you. Chelsey