Fentanyl question

Sorry for the long post but I need to vent and see what I should do.*

I was on fentanyl 25mcg ever 36 hours for the last 2 months. 15 days ago I quit cold turkey with the support of my PM although he wasn't pushing it and even seemed hesitant. I was just scared of becoming addicted. I went through major withdrawl nausea, vomiting, headache for about 3 days. I did have an increase in pain. But got better on day 7. On day 13 I noticed my pain was slightly increasing and even more on day 14. Now on day 15 I've tried all the pain meds I'm prescribed 40mg oxycodone, 100 mg tramadol, 4 ibuprofen besides trying the patch again, and nothing is touching it. I spoke with my husband and very best friend and both my neurosurgeon and PM. Both physicians agree that my body is not ready to come off and to put the patch back on. I have an appt with the neurosurgeon Tuesday. So here is a little medical history.

I have severe sciatic nerve damage after a neurosurgeon who I trusted operated on me for the 5th time over 5 years and messed me up. The surgery was Jan 15th which caused a severe dural tear, a possible neurogenic bladder, and needed an additional fusion. He just would basically patch me send me on my way but then I would end up spontaneously rupture and would require additional surgeries later. After rupturing the same disc for the 3rd time he decided to do a fusion and only fused one side of my spine leaving it pretty unstable. I stayed in the hospital 24 hours and went home with a headache, unable to urinate and severe pain especially in my left lower extremity. They removed the foley when they removed my IV and morphine PCA which I was still using very frequently. I told him I didn't feel ready and the nurse even questioned this call. I called him and spoke with him not his nurse multiple times during the next 3 weeks complaining on the severe headache but all he would say is lay flat and drink caffeine.

It took me going to my PM and him telling me something's wrong I was extremely pale. He told me I'm sending u to another neurosurgeon for a 2nd opinion but it will take a few more days. As I walked out I nearly fainted in the parking lot and my vision kept going black. My husband took me directly to the hospital where the new neurosurgeon practiced at that he was going to refer me too.

Needless to say they found a severe dural tear and a half done fusion. They admitted me beginning to load me with IV caffeine and fluids bc I hadn't even eaten due to the severe headache which caused me to vomit and anyone who has had back surgery knows sneezing coughing and vomiting hurt like heck. They then called in the greatest neurosurgeon. Now he did explain in most cases surgeons don't like to fix another surgeons screw up but he knew I wasnt going to get the care I needed so thankfully he took my case. Several Residents and nurses said he only takes the most complicated patients and gives the others to other neurosurgeons in the hospital. He is assistant professor so he does a ton of teaching and uses this as a teaching opportunity.

He went over my history and He also asked for a copy of all my MRI CDs so he could look back before my 1st surgery. He found that a fall I had at age 18 that broke my tailbone actually caused my L5/S1 to be messed up and wasn't stable at all and needed a fusion way worse than the other one. He really felt like had it been fixed I would have never had to have the other surgeries.

Anyway he done surgery Feb 6th and repaired the tear, completely redone the fusion at my L4\L5 and also done the new fusion at my L5/S1. Basically 2 back surgeries within 3 weeks apart. He told my husband and mother I had severe sciatic nerve damage and nerve damage to my bladder which I had been going in and getting in/out caths bc I could barely empty my bladder. He said the dural tear required 4 sutures which he said is a lot. They also put a patch so my spinal fluid wouldn't leak between sutures. He said I lost so much spinal fluid he's surprised my brain didn't fall down and herniate which could have been fatal. Thankfully I was feeling so terrible and laid completely flat those 3 weeks.

Now on to my question. Both my PM and my neurosurgeon want me to start the patch back. My husband is very supportive and just wants whatever will make me better.

My best friend though was telling me that she thinks my pain is from my body wanting the patch not from the surgery or nerve damage. I was only on the patch beginning a few weeks after 2nd surgery and only for 2 month. She said that her neurologist told her that her migraines was from taking BC to long and to often that her body had become addicted and felt like it needed it so her body would cause the headache so it would get more bc powder basically it wanted the caffeine. Now I know this can happen with caffeine but is it true that the fentanyl will do this. I've asked both my doctors nurses that I talked to today and they asked the doctor along with my questions about the pain. They told me that they said they had never heard of the fentanyl or any of the meds I'm on to cause pain bc it wants the meds. It causes pains bc I'm no longer on the med which was helping the pain to mask it where it wasn't so bad.

Has anyone ever heard of this? I feel like she doesn't understand how bad nerve pain is. When she gets a migraine she takes a migraine pill however when my back is killing me I shouldn't take anything bc my body is just craving the meds? I Don't understand. I'm very aggravated bc I feel like I no longer have her support. She says she supports me but I feel like she is judging me or like I have let her down if I do put on the patch. So I've been sitting here trying to figure out what to do. We have been extremely close until Nov when I messed up my back. She is very hyper and wants to go go go and of course I can't. I'm afraid I might lose our friendship if I do put it on.

So I'm seeking here to see if anyone else has heard of pains being bc my body wants meds. Thanks for listening to my rant/vent/opinions. It's tough for anyone that don't have chronic pain due to nerve damage to ever understand. Maybe I'm just taking this wrong. Thanks again for everyone being so kind and helpful.

Hey Tidal mouse. That's what I've been doing so far I haven't had to apply the patch but it's tough. I just wish people understood my pain is not just a back ache. It's excruciating pain. Pain u can't touch with any med. My mom too is afraid of the patch bc of the studying she's done she just don't believe it will help. She thinks they need to change the gabapentin or raise it. She feels that would be more beneficial sand it prob would be. So that's what I'm aiming to discuss on my next visit.
Thanks a lot for taking the time to give me a little encouragement.

PM, I second what Vickie has said. How dare someone that is not walking in your shoes try to pass judgment on what you should or should not take. If you do not have proper pain control during your recovery process all that will do is hinder your recovery a great deal. I know your history quite well & remember what all you have been through & find it completely hideous that someone would tell you crap like this. I would love for them to have one hour of true nerve pain, lets see what they would be begging for to try to end that pain. Nerve pain is a completely different type of pain & to compare a migraine to it is just nuts.

I am sorry, I have to laugh, they think Fentanyl is evil but the other pain meds are ok, how wrong they are. Anyone can become addicted to any pain medication is abused or taken incorrectly.

I am sorry, but this so called friend you are worried about losing because you are unable to get up & run with, needs to move on without you. If she was a real friend she would stand by you PM, not make demands that you cannot meet. Something else I would like to point out, your friend claims she talked to her dr about you, guess what that didn't happen, she is telling you a big fat one PM, no dr would tell a patient something like that to tell a friend. You need to think about what I just wrote, how about it being unethical to start with among many other things. Unfortunately, you are listening to too many people that have no clue what they are talking about & this very thing can be something detrimental to your recovery. Your drs went to school & have the knowledge, not your mom or your best friend. I don't mean to offend you, but what is being pulled on you by them is just completely wrong!!!!

Take care.

I agree no offense taking. My mom just was worried about being on so many I think. However my friend thinks I need to stop all med. She keeps sending me stuff on Neurontin causing the brain to not heal or something to that extent. I sent her a message back that said every medicine out there including her migraine meds has side effects. If she keeps on I will tell her my meds are my business! I read the side effects so I know. She is saying if I stopped all meds for a month and roughed through the pain that it will miraculously go away. Lol she said the reason I'm hurting is bc my body is craving all these meds. But she is the first one to be laying in bed after taking a migraine pill. I just wish she supported me thru this like she has supported me through other things. It just emotionally hurts.

hi proudmom...my prayers & empathy are with you. i say empathy b/c i am a chronic pain patient as well & have been since post-surgery 1995! my back and leg never hurt as severely until the doctor finished my surgery!

and before i completed reading your saga, i wanted to scream out to you to say 'GET ANOTHER DOCTOR!'. but i continued reading and was glad to see that you did.

first of all, always get a second, third and maybe a fourth opinion before ANY surgery! and for you to continue with the same doctor is confusing to me, yet, i do understand b/c when we are in a vulnerable state such as what you were in, one cannot think clearly. been there, done that as they say. so, please understand that i am not judging you at all. i really feel for you.

as for your friend-----she is no friend! just let her experience nerve pain for one day, let alone 24/7 and she would be begging for a patch! shame on her!

try to ignore the stigma society has put on being addicted to pain medicine. first of all, you are not taking RECREATIONAL DRUGS--you are taking MEDICINE! this subject makes me very angry as you can tell.

my husband says to me when i start feeling bad 'cause i am taking pain meds......honey, ignore those who are not in pain judging those who are in pain....b/c what kind of quality of life would you have w/o the medicine? even if your body does get addicted to the meds you are taking, then so what! if you don't take them, you will have withdrawals, stay in pain & stay in bed on ice! even with my pain meds the pain is not totally gone. but most of the time it is somewhat under control. certainly better with them than w/o!

the consensus now among most doctors is NOT to surgically touch the back. more unsuccessful results than success. and certainly NO fusions.

may i ask in what town & state you live?

i am on your side. put on that patch. and get rid of the friend. or just don't tell her you have put it back on. why does she need to know ALL your business? if she should ask, it's up to you what you say. you can fib or you can stand your ground and tell her that she does not feel your pain and if she can't be supportive, then keep it to herself!

don't know the relationship you have have with God & Jesus, but they are my best friends, & they do not judge me. my intent is not to preach to you only to add that i don't see how a person deals with chronic pain w/o having the Lord in their lives.

God bless & let me know how you are and what's happening.......EMMELOVE

"I don't see how a person deals with chronic pain w/o having the Lord in their lives."

Just FWIW, I've dealt with nerve pain from cancer and now post-herpetic neuralgia, none of it very well controlled, for over a year, without having the Lord in my life, and seem to be in no worse mental distress than others. Not that I think anyone is interested in hearing how it's done, since everyone has their own best ways of coping with life's problems that they've already discovered is best for them, but just want to say that it is possible to cope well enough without being a believer.

What's so aggravating is her daddy just recently had his 2nd shoulder surgery and it's ok that he's on meds. It just hurts my feelings extremely. I hate that I shared with her about meds I'm on but as my very best friend I thought she would support me. Believe me if I didn't need them I wouldn't take them. I had not had a pain pill until 2002 then it was from a broken tailbone. Only on it for about a month. But then never had anything but an demoral shot here or there for migraines my maxalt or imitrex wouldn't get rid of. I had my first back injury and surgery in 2010. But was off pain meds pretty much 2 weeks after surgery for my first 2. I started experiencing the chronic nerve pain after 3rd. The 4th was not what u would think major back surgery they just put in my neurostimulator. However the pain and bruising was worse with this one. I got it manageable with the stimulator. But this last injury and then horrid 5th surgery messed me up. The 6th was just repairing everything he screwed up. The 5th surgery was my first fusion. They put in the 2nd fusion bc he felt that is where the original problem as it was not stable.

Emme: I was young and went to a dr who I felt fixed me the first 2 times. So when I had the pain from the 3rd surgery that never went away I thought maybe it was just bc it was the 3rd surgery so when he put in the stim it just about took away my pain. So I went to him for the 5th bc he was doing a different surgery and like I said I was young and naive. It makes me sick I didn't get a 2nd opinion. Well really a 3rd. My pain dr who originally told me no more surgery said I had to have surgery and even the neurosurgeon I have now said it too. He has my Myelogram. I ruptured a disc and a piece broken off and was compressing my spinal cord. I lost control of bowels fell a couple times etc. So I tell myself that even had I went to other surgeons they would have all said the same thing. So I went with the surgeon I was familiar with. My neurosurgeon now said I was mm from paralysis off what my Myelogram showed. So that's why I went with a dr I knew.
What's crazy is after my surgery when I didn't show up for my appt bc I was in the hospital healing from his screw up they said well let's reschedule. I said absolutely not! I will never see him again. She put me on hold and put his nurse on the line and she said I'm sorry he didn't follow thru. He is going through alot(5th divorce) that's why u should have called me I would have got u in to clinic.i said To heck if it's my fault lady. I talked to him 3times & the hospital nurses station 3 times. She said well he's just going thru so much he's not thinking straight. Man how I wished I would have taped that!!! I said well why did he do my surgery if he's not thinking clearly. I asked him the morning of surgery if he was ok bc a month before he was hit by a drunk driver and got a compression fracture in his neck. He replied of course I am.

I'm very happy with my new neurosurgeon. He is great. So I'm hoping he can help me Tuesday. Thanks so much for everyone's encouragement. I always so I wish this pain on no one I just wish they was in long enough it to understand.

I have been on Fentanyl for at least 10 yrs. after 4 back surgeries from 1990-2001, back when they didnt know what or who should do the surgeries,needles to say I am very messed up my back looks like a winding road, Anyway I have been on 100mc every 48 hrs. and percocet 10/325 and i will never be off the patch til I give in and have the pain pump implanted like they want to do to give me more relief. First off if someone gives you advice that
isnt or hasnt been in sever pain,ignore them. If you need the patch and it is only 25mc. it is not going to get you hooked. if you put it back on and you get a high then you dont need it. If it releives the pain then you need it for awhile longer. I am not a druggie and never evr was but I know my meds after 25 years and the general rule is if you take prescribed pain pills and it relieves the pain and you do not feel a high then your body need the help. If you go back on the patch and the next time you go off it do yourself a favor when you are ready to stop,cut one in half and slow down gradually for like 2 weeks and then in 1/4 for two weeks and you should be fine, there no need to put your body through unneeded stress.
One last thing about a 6 mths. ago my Dr. put me on Dilaudid for my break through pain .I took the prescribed amount and I got buzzed like no other meds ever did to me ,I tried another one in 4 hrs.hopping that my body just wasnt used to them and it would be ok,well I got the buzz again and i stopped taking them and went back to lortab 10/325 til my Dr, put me on the percocets and they help some but ,I dont get high of them. That just kinda backs up what I said about how to know if a med. is to much for your system. Sorry for the long reply,I dont get out much duue to my chronic pain soI tend to go on to long. good luck.