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Fentanyl Patch Question and Advice need, Please! :)
  1. #1
    ScarletBegonia is offline New Member
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    Exclamation Fentanyl Patch Question and Advice need, Please! :)

    Hi everyone, I'm new! Very happy to be here though! This might be a little long, so bear with me, please!

    Ok so, I'm a 32 year old homeschooling mama of 3 kids, all under the age of 8. I'm also a burn survivor and amputee. I was burned in a house fire when I was 3 and my left leg was amputated below the knee, and 3rd and 4th degree burns covering 80% of my body. I know a little about pain!

    My biggest source of pain is the knee on the amputated leg. I have bone and muscle atrophy due to it being amputated when I was so small. It's very weak and I dislocate my patella very often and very easily. It is the most excrutiating pain I have ever felt. (skin grafting, natural childbirth, having pins hammered into your fingers, nothing is as bad)

    Oh, I should add that I am fairly active and do well with a prosthetic leg. As it is pretty much the only means of walking that I've ever really known.

    I have been on Oxycodone for nearly 5 years and (as of 2 weeks ago) I am currently at 30 mg 3 times a day.

    So, this is what happened...I started becoming tolerant to 30mg and I think it freaked my Primary Care Physcian out a little. She tried giving me Morphine, but I did not feel like it helped as much with my pain and it made me very tired. She referred me to a chronic pain specialist.

    I had my inital consultation with him and he put me on 10mg of Methadone 3 times a day. I took it for a month and was pretty miserable b/c it seemed to do very little for my pain. Next time I went back I let him know I didnt like it. He says ok, well your only other option is to have a morphine pump surgically inserted.

    I do not want a morphine pump, I do not want a tube hanging out of my for the rest of my life, or a hockey puck sized pouch under my ribcage, or a tube sticking into my spine, or multiple and lengthy trips to the hospital to acquire them.

    After telling me that was my only other choice, I asked him, how about the fentanyl patch I ask him? Nope, he says, youre not a good candidate b/c of the scarring on your chest. You can only wear the patch on your chest he tells me. He then released me from his care and referred me to the clinics "morphine pump guru" and headed towards the door. Haaaaang on a sec there buddy, thats it?! Youre just gonna leave me with no pain relief (not to mention possible withdrawal problems) until I see the pump guy I ask him. He sighs and says, ok, I will give you a script for 10 mg of Oxycontin 2 times a day. Great, I say, whats for dinner? I went from 30 mg of Oxycodone a day to 20 of Oxycontin? Why bother?

    No, I realize that 90 mg of Oxy a day IS a lot. I don't want to jeopardize my health and realize that with my tolerance I was on my way to a bad situation. I'm not even sure why my doc let me go so long on the Oxycodone without mentioning something. I dont blame her I guess, I am supposed to be the one in control.

    Back to my story, I left the pain specialist with my script for the Oxycontin. I was in a lot of pain, but atleast I still had some in my system to hold back withdrawals. I didnt even bother making an appointment with the Morphine Pump dude cause there is just no way.

    I thought, well, I have a month to figure out what to do next. After 2 weeks I was in misery, I could barely walk much less play with my kids like I always have. I call my pcp and cry to her about what this "pain specialist" has done to me. She seems to feel terrible but tells me that she cannot go over his care. I told her that I do not care for this doctor at all and her suggest was to call the clinic and ask to make an appointment with another doctor. I tried this and they told me that it is their policy and I cannot switch doctors. I am stuck with the one I have. Well ok then. I ask to speak with his nurse so that I can leave him a msg. She gets on the line and I tell her the Oxycontin is no help, I am dying here, please help. The doctor never examined me without clothing on I tell her, my sides, waist, stomach, back, shoulders, and upper arms are all clear of scars I tell her. Please ask the doctor if I can try the patch. Ok she says, I will give him the message. That was on a Monday.

    No call from the doc all day, no call Tuesday at 1pm so I leave the msg with the nurse again making sure I tell her it is urgent...no call that day, No call Wed, I call her again crying, please he has to help me. By this time withdrawals have set in, my entire body aches, my knee is in throbbing pain. I cannot get out of the bed...no call back on wed. either. Thursday.....I finally get a msg from his nurse. Dr. DoesntGiveAPoo says you can only wear the patch on your chest and to look into the morphine pump.

    So after that I make up my mind...I'm either going to die or Im gonna have to live without pain medication and learn to deal with the pain. I am sick sick siiiick now. In bed for 9 days, spring break for the kids, theyve got free reign of the house...it's bad. Finally, its time for my monthly check in for refills on my adderall and ambien with my pcp. She hugs me right away and tells me that shes very sorry, and I could tell she was. I like this doctor and trust her. I told her what was going on with the pain doc and she tells me no no no you can wear that patch, and I think we should try it. She still doenst want to go over the pain specialist and prescribe it herself though. But she was willing to email him to let him know that she had examined the skin sites under my shirt and didnt see why I couldnt wear the patch on my sides, or back, or waist, shoulders, etc. and that she recommended that we try that before taking drastic surgical measures. She also told him she'd been seeing my for over 10 years and has never considered me to be a "drug seeker" or to have an unsavory characteristics.

    This made me feel a lot better, and I drove over to the Pain Clinic after my appointment with her to make my appointment with the evil Doctor. I spoke with the manager of the clinic and told her my story and how upset I was about the way this doctor had treated me. I just feel like he has been soo careless, and heartless, and even a little bit irresponsible. Unfortunately, he was the first available apt. so I grabbed it. The manager told me though that I wouldnt have to see him anymore after this appointment and she told me that I would start seeing the cheif of staff and that she and the chief doc would talk to me at my appointment with the mean doctor to make sure I was satisfied. This made me feel better as well. Sooo, that was this past friday, and I made the appointment for monday - tomorrow. (march 14th)

    Phew! If youre still with me, thank you and bless your heart, haha. I am reallly nervous about this appointment tomorrow. The doctor is very abrasive and intimidating and I am usually very softspoken. But I am mad mad mad at this doctor! I feel like he has taken 2 months of my life from me and caused me all this pain and anguish, and sickness, and he doesnt even care!

    I have been researching, I cannot find anywhere online that states you can only wear this patch on the chest. Have any of you heard this? I printed out the insert that comes in the Duragesic package saying in black and white that it can be worn on the chest, back, shoulder, upper arm, and flank. With a fluffffing diagram even, drawn out with giant arrows pointing to the parts of the body where it can be worn.

    I will bring the print out, and he has the email from my pcp. My mom will be watching my kids, and I dont really have anyone to come with me for moral support to stand up to this jerko doc. Sooo, any advice you guys have for me would be a huge huge help.

    I left out a cpl things, lol, since I am giving everyone my life story I will add that my orthopedic surgeon has looked at my knee several times and is not comfortable operating because of the atrophy and b/c the skin is just very very thin and damaged with scar tissue he feels like healing would be a big issue. I am also lucky to live in Durham, NC and see the doctors and specialists at Duke. (Or atleast I thought I was until I Dr. MeanyHead.)

    Thanks everyone for listening, I promise I am not always this long winded. I just really needed to get that out of my system! I'll be keeping an eye on this post and I'm happy to answer any questions, I'm desperate. :P

  2. #2
    disabledleo is offline Member
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    Default I am sooooo SORRY!!!!!!

    My GOD I hope you are doing better now. I see you posted a few days ago & actually read your entire post. I wanted you to know someone here did actually read it ALL & felt your pain "IF POSSIBLE" & care. I am sorry you have had to deal with all you have. I hope the evil dr came to earth & helped you. If not I would really think about going after this guy with everything you can. They are there to HELP people like you. I can tell you I have had every pain chemical run thru me over the past 12 yrs & the patches for ME were a blessing. The only problem with them is I could not keep them from falling off. I went as far as using super glue & do not recommend this because it caused a lot of damage.. I pray you find a person that will help you like I have. Too bad you live soo far because I actually found a wonderful group of people here in Va. that understand & have been helping me for a long time. If you have any ?'s about any of the medications please feel free to contact me directly because I've done it all & have gone cold turkey from a oxy dose that was 5x's what your highest dose was so I UNDERSTAND everything you could deal with with the chemicals anyway. NOT in your physical condition BUT pain is pain. Please let me know how things turned out.
    Michael

  3. #3
    VPmichael is offline New Member
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    Thank you for sharing your story! I have read hundreds of stories throughout the last few days, and yours is the only one I wanted to respond to. I actually registered for this site just for you. I noticed this was posted months ago, how are things now? I pray that you have found some answers, and you are being helped with your pain. I can NOT believe what you had to go through with your doctor. Not to be blunt, but cant they damn see what the problem is? You were a victim of major burns, and also an amputee! Of course you are going to be in major pain. I'm sorry, I'm just so angry for your right now. This dr should lose his license! May I ask if you live in a rural place, or a city? Doesn't sound like you had many options where you are?

    I also suffer from major pain. I was just switched to the fentatyl patch yesterday, and I'm having a little tough of a time adjusting. I was on 4x 30mg of oxy and 4x 10/325 percecets a day. I just stopped them all yesterday and switched to the patch. I woke up feeling horrible, and I just learned that I have put it on wrong! I had it covered in tape, and I guess you can't do that. The doctor said I would NOT withdrawal from the Other Meds, but here i am...withdrawing like crazy! Of course he won't check his messages or emails until Monday morning. SOmetimes I wond how these doctors are doctors!

    Anyways, please respond as I would love to hear how you are doing now. I will be praying for you! -Michael N.




    Quote Originally Posted by ScarletBegonia View Post
    Hi everyone, I'm new! Very happy to be here though! This might be a little long, so bear with me, please!

    Ok so, I'm a 32 year old homeschooling mama of 3 kids, all under the age of 8. I'm also a burn survivor and amputee. I was burned in a house fire when I was 3 and my left leg was amputated below the knee, and 3rd and 4th degree burns covering 80% of my body. I know a little about pain!

    My biggest source of pain is the knee on the amputated leg. I have bone and muscle atrophy due to it being amputated when I was so small. It's very weak and I dislocate my patella very often and very easily. It is the most excrutiating pain I have ever felt. (skin grafting, natural childbirth, having pins hammered into your fingers, nothing is as bad)

    Oh, I should add that I am fairly active and do well with a prosthetic leg. As it is pretty much the only means of walking that I've ever really known.

    I have been on Oxycodone for nearly 5 years and (as of 2 weeks ago) I am currently at 30 mg 3 times a day.

    So, this is what happened...I started becoming tolerant to 30mg and I think it freaked my Primary Care Physcian out a little. She tried giving me Morphine, but I did not feel like it helped as much with my pain and it made me very tired. She referred me to a chronic pain specialist.

    I had my inital consultation with him and he put me on 10mg of Methadone 3 times a day. I took it for a month and was pretty miserable b/c it seemed to do very little for my pain. Next time I went back I let him know I didnt like it. He says ok, well your only other option is to have a morphine pump surgically inserted.

    I do not want a morphine pump, I do not want a tube hanging out of my for the rest of my life, or a hockey puck sized pouch under my ribcage, or a tube sticking into my spine, or multiple and lengthy trips to the hospital to acquire them.

    After telling me that was my only other choice, I asked him, how about the fentanyl patch I ask him? Nope, he says, youre not a good candidate b/c of the scarring on your chest. You can only wear the patch on your chest he tells me. He then released me from his care and referred me to the clinics "morphine pump guru" and headed towards the door. Haaaaang on a sec there buddy, thats it?! Youre just gonna leave me with no pain relief (not to mention possible withdrawal problems) until I see the pump guy I ask him. He sighs and says, ok, I will give you a script for 10 mg of Oxycontin 2 times a day. Great, I say, whats for dinner? I went from 30 mg of Oxycodone a day to 20 of Oxycontin? Why bother?

    No, I realize that 90 mg of Oxy a day IS a lot. I don't want to jeopardize my health and realize that with my tolerance I was on my way to a bad situation. I'm not even sure why my doc let me go so long on the Oxycodone without mentioning something. I dont blame her I guess, I am supposed to be the one in control.

    Back to my story, I left the pain specialist with my script for the Oxycontin. I was in a lot of pain, but atleast I still had some in my system to hold back withdrawals. I didnt even bother making an appointment with the Morphine Pump dude cause there is just no way.

    I thought, well, I have a month to figure out what to do next. After 2 weeks I was in misery, I could barely walk much less play with my kids like I always have. I call my pcp and cry to her about what this "pain specialist" has done to me. She seems to feel terrible but tells me that she cannot go over his care. I told her that I do not care for this doctor at all and her suggest was to call the clinic and ask to make an appointment with another doctor. I tried this and they told me that it is their policy and I cannot switch doctors. I am stuck with the one I have. Well ok then. I ask to speak with his nurse so that I can leave him a msg. She gets on the line and I tell her the Oxycontin is no help, I am dying here, please help. The doctor never examined me without clothing on I tell her, my sides, waist, stomach, back, shoulders, and upper arms are all clear of scars I tell her. Please ask the doctor if I can try the patch. Ok she says, I will give him the message. That was on a Monday.

    No call from the doc all day, no call Tuesday at 1pm so I leave the msg with the nurse again making sure I tell her it is urgent...no call that day, No call Wed, I call her again crying, please he has to help me. By this time withdrawals have set in, my entire body aches, my knee is in throbbing pain. I cannot get out of the bed...no call back on wed. either. Thursday.....I finally get a msg from his nurse. Dr. DoesntGiveAPoo says you can only wear the patch on your chest and to look into the morphine pump.

    So after that I make up my mind...I'm either going to die or Im gonna have to live without pain medication and learn to deal with the pain. I am sick sick siiiick now. In bed for 9 days, spring break for the kids, theyve got free reign of the house...it's bad. Finally, its time for my monthly check in for refills on my adderall and ambien with my pcp. She hugs me right away and tells me that shes very sorry, and I could tell she was. I like this doctor and trust her. I told her what was going on with the pain doc and she tells me no no no you can wear that patch, and I think we should try it. She still doenst want to go over the pain specialist and prescribe it herself though. But she was willing to email him to let him know that she had examined the skin sites under my shirt and didnt see why I couldnt wear the patch on my sides, or back, or waist, shoulders, etc. and that she recommended that we try that before taking drastic surgical measures. She also told him she'd been seeing my for over 10 years and has never considered me to be a "drug seeker" or to have an unsavory characteristics.

    This made me feel a lot better, and I drove over to the Pain Clinic after my appointment with her to make my appointment with the evil Doctor. I spoke with the manager of the clinic and told her my story and how upset I was about the way this doctor had treated me. I just feel like he has been soo careless, and heartless, and even a little bit irresponsible. Unfortunately, he was the first available apt. so I grabbed it. The manager told me though that I wouldnt have to see him anymore after this appointment and she told me that I would start seeing the cheif of staff and that she and the chief doc would talk to me at my appointment with the mean doctor to make sure I was satisfied. This made me feel better as well. Sooo, that was this past friday, and I made the appointment for monday - tomorrow. (march 14th)

    Phew! If youre still with me, thank you and bless your heart, haha. I am reallly nervous about this appointment tomorrow. The doctor is very abrasive and intimidating and I am usually very softspoken. But I am mad mad mad at this doctor! I feel like he has taken 2 months of my life from me and caused me all this pain and anguish, and sickness, and he doesnt even care!

    I have been researching, I cannot find anywhere online that states you can only wear this patch on the chest. Have any of you heard this? I printed out the insert that comes in the Duragesic package saying in black and white that it can be worn on the chest, back, shoulder, upper arm, and flank. With a fluffffing diagram even, drawn out with giant arrows pointing to the parts of the body where it can be worn.

    I will bring the print out, and he has the email from my pcp. My mom will be watching my kids, and I dont really have anyone to come with me for moral support to stand up to this jerko doc. Sooo, any advice you guys have for me would be a huge huge help.

    I left out a cpl things, lol, since I am giving everyone my life story I will add that my orthopedic surgeon has looked at my knee several times and is not comfortable operating because of the atrophy and b/c the skin is just very very thin and damaged with scar tissue he feels like healing would be a big issue. I am also lucky to live in Durham, NC and see the doctors and specialists at Duke. (Or atleast I thought I was until I Dr. MeanyHead.)

    Thanks everyone for listening, I promise I am not always this long winded. I just really needed to get that out of my system! I'll be keeping an eye on this post and I'm happy to answer any questions, I'm desperate. :P

  4. #4
    rick56 is offline Member
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    scarlet, I have been on the duragesic/fentyl patch for 8 years, and my dr told me to only wear it on the fatty parts of my body. so I rotate it around my stomach, and you can so the same, also it can be worn on the thighs, the fattest parts. please don't give up,do some research online at mylan,malinkroft(?)sp but what this dr is telling you is worng!!!! good luck, I would seek another pain management dr. the insert in the mylan, (that is the one I prefer coz there is no jell, actually amazing how well it works!). Robert is your best source of info, he is greart and will help you, Let us know how you are doing
    I do take diliuad for breakthru pain, you may need something like this for the "bad days"
    no one knows how much this helps better than I do, so please keep on trying......with love
    suzanne

  5. #5
    grateful dawg is offline New Member
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    Smile Re: Fentanyl Patch Question and Advice need, Please! :)

    So sorry to hear about your adventures with the 'evil doc', but I hope that things have gotten better since then! I have been in chronic pain for roughly 8 years now following 3 spinal fusion surgeries. I was doing well after the first two surgeries, unfortunately I fell down in my own driveway due to a patch of ice one winter and hit the ground real hard (gravity is a beeatch and wound up in severe pain ever since, even after my third surgery which followed the fall. Anyway, I had found a great pain management doc and after numerous injections, RF nerve-ablation, and various medications, my pain was finally being managed. OK, fast-forward a few years and I had moved to a new home in a different state and had some nightmares like you, only I had met a few 'evil docs' that did not want to prescribe the medication that I had been on for years while at my previous residence. Even with four large folders of MRIs and CT scans documenting my various problems, all new docs I went to wanted to reduce my pain meds at least 3 to 4 times which did not manage my pain at all. Anyway, I did find a very knowledgeable and compassionate PM doc that put me back on what I was previously taking so I could function well enough to work and have a relatively decent quality of life with limitations.

    Fast forward another year and a half and I guess I had become tolerant to the dose I was taking from oral meds and my PM doc then put me on the Duragesic patch - 75 mcg every 3-days. At first I did not like it because it was hard to keep on and subsequently I was getting less of the transdermal medicine that I should have been getting had the patch stayed on my body the way it is supposed to. However, my PM doc told me to put the patch on and then cover it with a clear surgical dressing cover which helped keep it in contact with my skin much better and it has since been a godsend!

    Others that have mentioned the various places on the body it can be placed are absolutely correct, as you were in mentioning the printout from the pharmacy company itself that states the recommended places to apply the patch - the chest is obviously NOT the only place it can go and your 'evil doc' needs to go back to school methinks

    Well after sharing my 2-cents worth I really hope that things worked out OK for you. You are definitely in a good location for quality doctors living in Durham near Duke - I had actually went to grad school at UNC-Chapel Hill so I am somewhat familiar with the area (even though Duke was our arch-enemy when it came to basketball, football, or anything else for that matter -

    ps - like your forum username - Scarlet Begonias is one of my favorite dead tunes...

  6. #6
    Blessed_Be is offline New Member
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    So sorry to hear about your difficulties (somehow, that word doesn't seem...oh, strong enough) with the pain management doc....You have already been throught so much..I am going thru early stages of withdrawal from fentanyl patch, 50 dose. I have a history of kidney stones, severely herniated lower back disks, & lots of abdominal pain from multiple surgeries. I've had 1 fusion done on my neck, the disks were pressing on my spinal cord & causing numbness, pain, & loss of muscle control (I can't tell you the # of times I dropped & spilled things)on my right (dominant) hand/arm. That procedure was a complete success..they used metal & donor/cadaver bone (I love zombie movies, & so now I can say that I am part zombie, lol...sorry, I'm really weird). I had been getting injections and/or having the nerves "burned" via rdio frequency for 5 years, & they just were not helping anymore. My dr. told me he wanted to put me on fentanyl patches, & at first I was like, "No way, those kill people"...because of all the attorney commercials on tv. He assured me that the majority of those fatalities were due either to dr.'s prescibing them to non-opiate tolerant patients (Oh, forgot to mention that I was on lortab 10's & then percocet 10's for 5 years & became tolerant so they weren't working anymore) or to patients not reading the warnings & using more than 1 at a time or heating pads...so I started on the 25 strength...those did nothing, so he upped it to 50 & also started me on Trileptal & Nucynta & Flexeril. Then, I lost my job & insurance. I wanted to get back surgery for the disks, & had made the appointment with the same surgeon who did my neck fusion but again, lost my job & insurance. My husband also lost his job, & we ended up filing bankruptcy & our house went into foreclosure. Anywho, we've moved twice now, staying with relatives, & my new (been in CA a little over a month now) dr. will NOT prescribe the fentanyl patch, & I only have 1 left. They don't really help with the pain, & they are VERY expensive when you have to pay for them yourself. I am disabled, but won't be eligible for Medicare until Sept. 2012, & apparently make just too much $$ to qualify for any type of assistance....anywho, I'm trying to give up the patches cold turkey....so far, not too bad. I do hope that they work for you.

    Merry meet, & peace out! <3

  7. #7
    sweetsusan935 is offline New Member
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    Default Pain Dr's and Fentanyl Patch

    I am so very sorry,you had to deal with such incompetant,cold,uncaring doctors. Think doctors are so worried about addiction,being sued,or just not caring,that they almost become immune to peoples suffering. My goodness,someone with your health issues,that deals with such pain,should of never of gone through what you indured. Almost think,these type of doctors,will only be compassionate,when they deal with pain themselves. I hope by now,your pain is under control,and you are getting better care. My experiance in the past,with Fentanyl Patches,is that your body seems to become tolerant,fairly quickly,needing higher doses,but it is an effective drug. I had better luck,putting them on my upper arm,instead of a fatty spot,as they didn't stay on well,where there was more skin. Make sure,when you change the patch,to change the spot each time. I used to put a piece of clear adhesive tape over the patch,and didn't have any problems,with them coming off. You probably will need a backup drug,as it takes awhile,after you put patch on,to get the pain relief. You are in my prayers,and may you be blessed with a great doctor that cares. God bless,Susan

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