I currently take the 50 mcg Fentanyl Duragesic Patch. Honestly, I cannot stand this medication, but it does bring relief to my spine, which includes (please excuse spelling) spondiolythesis, severe degenerative disk disease, facet stenosis, mild scoliosis, bulging disks down the entire spine, and arthritis. I have had nerve burning procedures , but they only relieved 30% of the pain. Beyond the back pain, I naturally suffer from performance anxiety disorder(fear of public speaking), which is my only diagnosed mental condition before taking the drug. Since taking fentanyl, I have noticed an increase in generalized anxiety. I am not sure if it is because I cannot sleep as the medication peaks. But after the "peak" level, I find I am exhausted, agitated, and lately experience breakthrough pain. I am too frightened to go up in dose for fear of what it involves to adjust to the medication because all the side effects are doubled when moving up a dose at least for me. For instance, I will experience vomiting for around a month when I first take a higher dosage. I did take the 25 mcg for a year although I had breakthrough pain the entire time as well as the other side effects. But when I began having panic attacks for no reason at all, I did confide in my doctor. The answer was the breakthrough pain was causing the panic attacks.
I then moved up to 50 mcg. And yes, it did/does control my pain like no other pain medication, but after several months the panic attacks returned as well as generalized anxiety that make me appear manic because I do feel like I am on some type of "speed" during what I will call the first phase of the medication as it peaks. One other issue that I have read on this site that happened to me as well as others was waking up during an endoscopy and colonoscopy(sp). I have read others have woken up during surgery.
I am only 40 years old, and I do not think I can live the rest of my life on this medication. I just do not feel like myself. My pain management doctor stated that it was either Fentanyl or a morphine pump since my back pain is inoperable. I do have issues with morphine because after two surgeries before fentanyl, I felt so horrible on morphine that I remember just waiting for medical personnel to take me off the morphine.
Also, I do not necessarily think I am opiate intolerant because I have had demerol for medical procedures and did not experience major side effects such as I have with morphine and fentanyl. Does anyone else share this experience? I also have taken vicoprofen and oxycodone. Unfortunately, oxycodone does not seem to help my pain. Vicoprofen does, and again I did experience a jittery feeling at first, but after using that medication after a month or two, the side effects disappeared although I experienced too much breakthrough pain, and I needed take it with another pain medication. At the time, I was living in a city when I finally found a fantastic pain management doctor. He too had a bad back and was determined to discover how my back got in its current state. We discovered I almost had spina bofida (sp) because I have a small opening(hole) at L5, which caused all the other problems.
I apologize for rambling, but after reading the message boards on this site, you have helped me understand that I am not alone. This is the first time that I am posting because my husband and his family cannot make the connection for my need to make up for sleep after the second phase--the after peak effect, which is the fatigue I experience. On top of that, we recently moved closer to my husband's family, my sister-in-law and mother-in-law, both nurses, think I suffer from depression because of the fatigue. They both work in hospitals and think fentanyl is a wonderful medication. They both also suffer from depression. I try to communicate with them about what I am experiencing, but they tend to ignore me. My husband has recently observed how his sister treats me like I am a "crazy" person. She and her husband both ignore me when I communicate with them so I usually just try to keep conversation on a shallow level since I just found out some things that I will mention later. However, my friends and family that have known me my entire life know that I do not suffer from depression but performance anxiety, and they are shocked at this perception. Moreover, I am an advocate for therapy, and not once, have therapists recognized me as one suffering from depression but performance anxiety.
My family history does not include depression but anxiety. Before taking fentanyl, I did visit a psychiatrist to pinpoint the PMA disorder, and I went through extensive cognitive behavioral theory that was a success. So the problem is that my husband's family thinks I am "mental" although my friends and family that now live far away are aware of the PMA and could attest that the side effects of fentanyl are causing this fatigue after peaking on fentanyl. Regardless, they too are upset that they cannot step in and help support me with this very vocal family. This vocal family likes to gossip, and since we now live in a small town, they are gossiping about me to others like my son's teacher or members of my church. They are not gossiping about my fentanyl use, but that they think I am "mental." Is anyone in a similar boat as myself in this regards?
I am to the point that I would rather have my mind back and deal with severe back pain because there is one more important factor. I am two chapters away from completing my dissertation, but since beginning the fentanyl, I just do not have the stamina to complete it. I really want to complete my dissertation because I do think it is my calling to teach in higher ed, which I currently do. I especially like teaching online because the flexibility works around my medication dilemma although when teaching onsite, I do have a knowledge base that does not interfere with my interaction with students; however, I am concerned if I remain on fentanyl, I will not have the stamina to become a full-blown professor. So I wanted to share with you another factor in trying to decide to quit taking fentanyl, and if anyone seems to have a similar biochemical makeup that might suggest a medication that could work for me? I know I cannot make the trek to the closest city and state, "I heard that my biochemical makeup might react better with 'X' medication" because of all the drug seekers out there. But it would help me to know that there may be a medication that fits me biochemically. In addition, perhaps any of you can advise me how to communicate to a doctor that will listen to me. Are pain management doctors the best option? Again any insights would be appreciated.
However, my pain management doctor in the city I recently moved told me that I had only two options to control my pain: the fentanyl patch or a morphine pump. I have more to share so I know some of you in the city might know that there are indeed other options. I would prefer a medication that does not affect me like fentanyl or morphine. And yes, I have decided to visit a psychiatrist to help me make this decision to quit the medication although I know the withdrawal from fentanyl is horrible. When I first moved to this small town, I consulted a fantastic general practitioner and explained how the fentanyl was affecting me. He gave me a prescription for the new oxycodone that is a time release. However, bless him, he did not realize that the fentanyl withdrawal is too powerful. For you women, I felt like I was in transition labor as I took the new medication and tried to withdraw from fentanyl. But the dilemma is that my pain is severe enough that without medication I cannot do daily tasks that most people take for granted, and I also in the past have become bed-ridden, when say on the 25 mcg patch or just vicoprofen alone. I do have four children, but my relationship with my husband that works 80 hours a week has become strained. He also steals 2/3 of my monthly vicoprofen, which I use as back-up for breakthrough pain. And he is to the point that he cannot handle any stage of the side effects from the fentanyl nor can he handle that I my overall health has deteriorated from this condition. So here are some more questions:
Are there people in this group that have experienced the side effects I have? Has a psychiatrist helped you find medications to counter the side effects to fentanyl? Has anyone noticed a decrease in cognition or just a general feeling that your brain is not working at full capacity?
And I should add that I visited some of the best orthopedic surgeons that reviewed my case. There are so many issues with my back that any surgery will not alleviate pain. If anything, it will create more problems. Basically I was told I need to prevent osteoporosis, or my spine will collapse, which is a positive heads up at this stage of the game. And I just know that some of you are located in cities or towns that have doctors that are familiar with this medication. I am not so lucky now that we have relocated. But I know there must be an alternative solution to my problem. And probably like most of you, I too have done physical therapy, swim, etc., but I really need physical therapy five days a week--unfortunately insurance will not pay. So while I think it is a good move to visit the psychiatrist although she is new in her field, I do need advice in how to communicate to her. Am I correct to assume most psychiatrists might understand how this medication might affect the brain and exacerbate anxiety. Do you think that there is hope? I really need advice in how to communicate to both my general practitioner as well as the psychiatrist in what is happening with the fentanyl. However, I am just concerned with the potential options.
At the least, the psychiatrist hopefully if she has any knowledge about fentanyl can help me explain to these new family members as well as my husband what is going on with this medication. What concerns me is if there is a miscommunication then what if I am diagnosed for a mental condition that I do not have? Or what if the suggested medications create a neurological change in my brain that will actually cause irreparable damage to my brain?
And the last bit of information, my sister who lives thousands of miles from me is afraid that my sister-in-law may actually suffer from some disease because both of her parents: the mother depression and the father some type of undiagnosed psychopathic tendencies believes that she is mirroring her on condition onto me. And furthermore, my husband does suffer from Post Traumatic Stress Disorder from his own childhood. Unfortunately, I don't feel the situation as it is--fentanyl side effects.
I reach out to you because I think due to the communities like this, you may can look at my situation objectively and really offer some helpful advice because I am one of those people that have until several years ago was active in my community, church, and career as well as the most important factor in my life--my family. I need the hope that this old back will not deter me from becoming involve in my new town.
Anyway, I have tried to share as many details as possible regarding my situation. It is my hope that some of you have been down a similar paths as myself, and you can offer me some advice in how to handle any aspect of this situation. At the least, I hope some of you can offer the support and understanding that I need at this stage. I do understand human nature, and if people do not experience your medical conditions; it is difficult for them to empathize.
Thank you so much in advance for reading my post and giving me some ideas or thoughts. I truly appreciate it because I just think it is unfair to burden my family that is far away, I truly feel alone and a bit misunderstood as well as hurt as the situation has unraveled in this new town with my husband's family that do not really know me.