The Fentanyl Dance and Oprah, Girlfriend! Where have you gone?

mersilkee is who I am Living With It married, 2 kids, I have RSD and a fatal brain dementia. I'm in my late 40's. I have two children and one grandchild. I am... Send Message Subscribe: mersilkee

Friday, October 02, 2009
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Today, I am finally back to my usual state of pain partially controlled by pain medication. For years Fentanyl and I have been doing the same dance. When one partner starts to wear out another one smoothly attaches to my back and we waltz to the music of no pain, no gain. It is one ...

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What did the invincible Dr. "OZ" have to say?
Lorie Stransky
Friday, October 02, 2009 at 09:34 PM

I must have missed the episode of the invincible Dr. Oz and Oprah on the pain issue. You will have to fill me in (of course if you wish to). I have never received the same amount of relief with the pain patch. But sometimes I will itch just because I am on narcotics, I wonder if your skin is just starting to become sensitive to it. I know there are some tests that can be done to see what rate medication is being delivered to your system, sometimes people have a metabolic imbalance and you do not get the right amount of medication delivered to your liver adequately. Just a thought. I have a pain specialist who does not listen to me when it comes to help with breakthrough pain help so I am usually looking at the clock waiting for the minutes to tick by before I can get some relief. I feel like a theif and a liar half the time when I am at the Dr.s office, I am automatically put in that pool of people no matter how many clean UI's I deliver. I wish you well, and just keep dancing! Best of luck. Lorie

re: What did the invincible Dr. "OZ" have to say?
mersilkee
Saturday, October 03, 2009 at 10:43 PM

Lorie,

Someone did a Sharepost on the Oprah Show so if you look around in Chronic Pain Connections. I didn't actually see it that day. I read about it and saw part of it on YouTube. Dr. Oz. said that if you are having pain after two weeks and are having to take pain medication then it is time to change doctors and also he said something about addiction that everyone in the pain groups are reacting to negatively. There were many posts. So many, I couldn't read them all.

Thanks for advice about the patch. I feel like I have to stay on it because I can't tolerate any sort of opioid tablet. I have stomach pain, nausea and vomiting. I use Fetanyl pathces plus I take liquid forms of Diluadid and Methadone.

I'm very sorry that you do not have breakthrough meds. I changed doctors after I had been on the Fentanyl pathces for several months and he gave me a liquid opiate for breakthrough pain. I realized after I started taking the breakthrough med. was some of my symptoms that I was having while only on the patch were due to Fentanyl withdrawal. I remember how wonderful it was when we on our honeymoon to Jamaica and I first used the drops. I had been sweating, having chills and enormous pain and suddenly there was relief.

I don't know what is the source of your chronic pain but I have CRPS and I just read an article about a study that said there might be a connection between asthma, migraines and CRPS and also that hormonal changes such as the mentstrual cylce and menopause affect CRPS symptoms. I have all three of those conditions and I already had figured out that my CRPS was worse during my period.

I am so so sorry that your doctor will not give you breakthrough meds. I have read some real horror stories lately of what pain clinics are making people do and what they are not giving them anymore. We moved to the New England area about five years ago and I found a wonderful pain management group in New York City. It was five hours of driving, so we would make a Friday afternoon appointment, go out to a play (in my better days) or go out to eat, stay at a motel and leave Saturday to drive back home.

I was diagnosed with a fatal illness earlier this year and my husband got a job offer in a location where we have a lot of family so we moved here. We are no longer within driving distance of my pain doctor but he does Sycpe (I don't know if I am spelling that right) so we do an appointment that way each month and I physically fly to see him every six months. My husband has been laid off twice here and I am worried about when our unemployment and COBRA benefits end.

I guess that you have already tried asking your doctor for breakthrough meds. It really makes a difference in pain control.

Take care,

M.

re: re: What did the invincible Dr. "OZ" have to say?
Lorie Stransky
Sunday, October 04, 2009 at 11:19 PM

Dear M,

Thanks for the reply. I have Rheumatoid Arthritis (diagnosed since age 14) and Fibromyalgia. I am not sure what CRPS is though? I have learned many things on this site so I never hesitate to ask questions. I think Dr.s are getting pretty leary about pain meds because of all the celebreties dropping like flies so I wonder if the pain clinic Dr.s hesitate to increase medications to their patients. I know pain clinics probably get more leniancy (spelling?), but I think they are cracking down everywhere. I know when I used to get them from my General Practioner, he told me privately that he could lose his license if he wasn't careful. I am trying to go for a short walk a couple times of week, and it has helped my pain in the past so I am hoping I can keep it up, its just hard to get going. I live in Minnesota, so you can imagine how cold it can get....not FUN. Did you read Jeff L.'s post? If you haven't, you should. I feel bad that the person who replied to his post, really chewed him out, he probably deserved some of it but I think they over did it, he probably will never post again. I am prayin' that you will not lose your healthcare and that all is well. Please take care of yourself.

Sincerely.

Lorie

You're supposed to move it.
Spooky
Saturday, October 24, 2009 at 04:13 AM

You are always supposed to place a new patch in a different place than the old one, so adhesive buildup shouldn't be able to happen. Fentanyl's release into the body is mediated by fat, so it should be placed on the upper body trunk or upper arms. For most of us women the front side usually contains more fat stores as well. As to taping them, try tegaderm to keep them in place. It's expensive, but CVS has a store brand in small pieces if you wear the usually smaller Mylan brand patches. Often the manufacturer will send you tegaderm to keep them in place as well, for free. I live alone, so I can only reach my front, and I find my patches work best on my breasts and have basically divided each into four areas so I can rotate where the next patch goes and each spot only gets adhesive every couple of weeks. My bra is also helpful in keeping the patches in place this way. I have had itching problems, but never with a patch placed o this way. In the beginning, when I was working on best placement I had terrible itching when I placed them on less fatty places like my upper arms and in the center of the chest over the breastbone. Never had a problem since. Monthly hormonal swings aren't a problem as I am many years past menopause. Brand of patch makes a big difference. I get good pain control throughout the patch's 3 day life with Mylan brand patches and have early and severe breakthrough with Sandoz. Unless I am completely unable to find them, my doctor much prefers I use the Mylan patch as, at equal dosages, I get better pain relief from them than any other brand.

I have found the patch to be a godsend as far as my living a normal life, along with my short-acting oycodone for the occasional breakthrough! If Dr Oz doesn't believe in treating pain he has obviously not had enough pain in his life. Chronic pain killed my mom. She had the exact same diagnosis as mine, but ten years later than I did. She had been cruelly dismissive of my pain until she had the same, then declared it was just too much to deal with, crawled into her bed and waited until she deteriorated and died two years later. By the time she died two years after her symptoms began I had already been living with--and fighting--the same pain for 12 years. I promise my doctor at every visit I am not my mom. As long as she keeps working on my pain I will not stop trying to fight it and I will not take to my bed and wait until I waste away.

Good luck and don't give up!

re: You're supposed to move it.
mersilkee
Saturday, October 24, 2009 at 08:30 PM

Spooky,

I have used the Mylan patches after Fentanyl went generic. I had trouble keeping them on my back and did use tape to keep them on. I didn't make it clear in my post, my husband always moves them around on my back. He just didn't clean off the adhesive from the spot of the last patches right away because of problems with me being able to sit up in the bathroom. We don't have any privacy right now. Unfortunately, for me,the Mylan patches did not work as well as Duragesic which was the best by far, and Sandoz. Sandoz worked okay for me until they started repackaging their patches. Since then, I am having trouble with more pain, withdrawal, etc. I don't wear a bra and I am having fairly constant problems with itching and pain in my breasts so it would be a problem putting them there. I have been having less itching the past few days so maybe that problem is getting better, who knows. I take liquid breakthrough pain meds and my husband started buying small plastic bottles and putting each dose for the day in a small bottle. That way he can make sure I take all of my pain medication. I also have a degenerative brain disease, so I was sometimes forgetting to take as many droppers full of medicine than I should. since he has been doing that, my pain relief is better so maybe I wasn't getting enough of my breakthrough med. Thanks for your help. M.