hope this is correct section (Fentanyl )

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so, here is my story. i had been extreamly active as a kid/young adult. i was chasing after the effect of adrellan. i guess to mask emotiional pain. any way @ age 31 i had an accident surfing where i almost twisted 300 degress at waist. this happend around 5am. thank god for an off duty lifeguard walking his dog at the time. he got me out of water. i had no insurance at the time of accident but was in process of getting it. so i waited and after it kicked in i went to doc. turns out i tore my left sciatic  about 30% had hernaited discs at all the "L" and s1 the found stenosis. i was unabe to walk for a year and the pain from the nerve was @8 24 hrs a day. i attempted sucide 2x  one an od on morphine and 2nd i set my self on fire . from the pain... anyway i finally had a doc that cared. he gave me norco and Fentanyl 75mcg every 48 hours patch... my quality of life went from 1% to 60 in a month.. i started walking again and was dealing with depression.  pain level stayed same but i was able to function.  after 10 years of both meds i quit the norco cause  i hated the effect. then the other shoe dropped. my caring doc retired and my gp took the responsiabilty of the Fentanyl. he hated it and was pressured from above to get me off. they offerd no other option. he resitied about 5 years they was forced to cut me to 50mcg every 72 hrs... i was in same pain but in constant dope sickness. i requested a specialst and had to wait 2 weeks. during that time my gp wanted to goto 25mcg @72hrs. i gave up and quit. didnt refill the rx...HOLY F'ING S@@T!  i started with vomiting and #2 like every 10 min.. i would take my shrink meds and the pill would come out whole from #2!  i was having audio and visual hallunactions 24/7 so after 2 weeks of hell i get to see this doc.... he forces me to go cold turkey and says it the hardest thing i will ever do. at this point i am having full seziours (full body) and massive depression... like on a knifes edge. add to it the pain is still there. anyway, come to find i have nerve damage down lefty leg with full unvoluntary cramping and half of left foot is numb. add to it i cant feel hot of cold so now have 2nd deg burn from hot water.  doc dont care... so i say f -it. mind over matter... i am now at 3 months with nothing in me. the pain is making me want to give up. but! i am almost thru the gi issues  the vomiting is still bad but only when i eat. i still have the audio/visual  hullanitions (walls/floor breathing and motion trails) add to all this my past/deamons are rushing forward in  my head and am forced to address them. but i want every one to know that im happy to be off. im 100% clean after 16 years and the pain is the same, i guess what happend is that my receptors were flooded and they couldnt function so the meds wernt working. i was just maintaining my sickness.the Fentanyl did hide emotional stuff for me but not much else. i am starting to see the light @ end of all this now and expect atleast 6 months to a year for the deposited Fentanyl to fully go away. the good stuff, i no longer sweat... i would soak myself  in snow! i nolonger scratch my feet to point of sores. and my head is out of fog. my quality of life sucks a-hole but @ 1 day at a time i make progress. btw i am @ 3 months now

all i can say is keep fighting! do not give up! it does get better.... it will be the hardest thing youll do but it can be done. the  is a good drug just not for long term.

if you are going thru this please know life improves! just take it 1 min @ a time.  if anyone has questions or complaints   hit me up.  

ps... i aint gonna bother with spell check or grammer so if i offend im sorry......

hb.

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  • Posted

    Hello HB.

    First up, thank you for sharing your story. It was a very encouraging, positive post, despite the horrible things you have been thru, the likes of which no one deserves. (Forget the spell/grammar issues, buddy, that's like WAY down the list! The important thing is to share and seek/give help and your own experience! Don't worry about that!). The thing with getting off Fent, like so many meds/drugs, is that everyone is different. So people (me included here!) may read a few posts and say 'nah, that's not like me. I'm in the wrong forum' or something similar. But then keep reading, and eventually, more and more stuff becomes like 'yeah, I remember that', 'ok, I know what she/he means' and so on. And that is soooo helpful. So please, the more people share their different stories the better!

    Boy, sound like you too (so many posts!!) have had a seriously rough ride. To be off the Fent after 10-15 years (or whatever; I don't know your med dates exactly, of course!) is both terrifying, and inspiring. Just cutting down from 75 to 50 to 

    25mcg/hr, those are huge steps! Just that would make many people fail the attempt.

    And as you said, you have your own personal 'demons' to deal with too. I'm sure the Fent just masks pain such as depression, at least at the start. It's certainly no cure.

    But your story is inspiring. Yet again, it sounds like poorly-informed docs, with other agendas and pressures, and you pain and other issues are NOT, sadly, their no 1 priority. I came off after about six years on 150mcg/hr (I won't go thrust the whole thing again unless requested... it is posted here somewhere). I had a bit more help, it sounds, than you to ease things, but, so many similar symptoms. The vomiting, stomach, #2 etc seem to get to everyone who comes off, to a degree. But other things you say, boy did I have those too! The hallucinations: every sound, no matter how soft, was like a full-volume speaker inside my head. And people's speech didn't match the movement of their lips, like a badly dubbed movie.  It was terrifying. Also visually, the flashing trails from moving objects. And random bright flashes (mainly blue green) if I put a light on or off... so many similarities.

    I agree that it may be several months yet, even though you've been Fent clean for ages, until it is fully out of your system.

    But, well done!! Keep going, and thanks for an inspiring, positive story which I so hope will be of use to others going thru, or about to attempt, quitting it. It may be a great med for some, in extreme situations, for the short term.

    But I've said it before and will repeat. In my opinion, giving this long-term to young people (you were about 31 when first prescribed? Similar to me) then leaving them, followed by suddenly stopping it.... this sounds, again, like mis-conduct, or ignorance by the docs, and should be criminal, if not done properly. The suffering caused in these situations is horrific. This may sound over-reacted etc. , but it is true.

    The docs think they know it all, but they just don not. Simple. So well done again, I do hope your post helps others.

    Best wishes, and do update your progress!

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  • Posted

    Right ther with you kid.  After 15 years on fentanyl I am off.  It was no longer doing anything for pain but I was so addicted to it body wise.  I did come off very slowly but still it was a battle.  I feel almost normal but our life is a sum of our past.  Some days will always be a battle.  Keep up with a good physical therapist...that was the best thing for my pain.  I have more better moments than bad ones.  Congrats, Susan
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  • Posted

    Wow!! Thanks for this incredible accounting of what you went through; parts of it are incredibly recognizable to me as I'm experiencing some of the same physical & emotional trauma that you describe. However your's are much worse. It is for all the people on this site that I have grown more irate with the American medical community and the clueless media that reports on this issue. The doctors prescribe the medicine and for the most part the medicine works! I could really relate to the sentence where you spoke about how when you started taking the medicine you could (I'm paraphrasing)"start living again". For me, it tamps down the pain enough that I can power through life. So then, a presidential administration that is obsessed with their media presence instead of actually leading(sorry for politics, but it's part of the problem), decides that because of the subsequent problems with abuse, that they need to threaten the medical community and beat their chest saying they've "decreased drug abuse". Meanwhile, doctors start behaving like mice when the room light goes on, scurrying for cover and pulling (not refilling) patient prescriptions with them. People who the medicine actually helps, are left in cold with hellish pain and withdrawals and insurance companies that won't pay for step down programs. The whole lot of them should be fu#%ing ashamed of themselves!

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    • Posted

      John29217,

      Just wanted to follow up on your post.... you are absolutely right about the political agendas and how they often drive what doctors etc do. Unfortunately, believe me, it isn't even just in the USA. I'm in the U.K. And have witnessed very, very similar things to what you describe here... doctors take the "oath" to treat patients, but it often means nothing when they just dance to the tune of their governments. And worse, I have seen other (European) nations, who are meant to be oh-so modern, forward thinking etc, and not only do the same things happen as in the U.S., and U.K., but then the laws and rules around the use of these meds varies dramatically!

      I have a friend who lives in the very north of Italy. He (perfectly legally) chooses to drive about 15 minutes, over the border to Switzerland - a completely separate nation a of course - because the laws there mean he can get more, of the meds he needs, some of which are not even available to docs in Italy, and it's all perfectly legal! This is just one of many similar examples I have witnessed personally!

      Anyway sorry for my little political rant, but like you, I think many parties in this should be ASHAMED.

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  • Posted

    wow! i was not expecting all the reply's. tyvm all.  so i agree that the doctors and medical boards and even politicians are scared and it is causing those of us who actually need the heavier meds to just have a tiny fraction of quality of life.  i live in la near the beach and in 5 min i can get heroin,oxy norco morphine for less than my copay.... that is scary! i remember way back when the doctors would never give hard stuff they would say tough it out you will get used to it ( my dad had brain cancer and slowly suffered for 8 years and was always in pain) they there was a shift to treat  the pain and they were just throwing it at patients. now we seem to have come full circle and all thru this the patient suffers. i don't understand why we as patients cant be treated one on one not as a whole group. what i have and my pain type/level is not the same as anyone else. i mean i used to skydive motocross, skied double black diamond, was a lifeguard was on water polo team, surfed did triathlons (swimming) etc. it all ended in a split second at age 31. i had never had a pain like this. dont get me wrong i have shattered my feet, broken my ribs, arms fingers and that was nothing. but omfg! then for 15 years on fentyal i was a legal junkie still with pain. it was like the insurance/docs were waiting for me to just od/die. like i said in first post i tried to end 2 times.finally i 5150 myself and just dove into getting the tools i needed to deal with the frustration of not even being able to care for my most basic needs let alone walk. looking back i see that i was not fully addressing my true deep issues cause the fog i was in from drugs. now that i am 3 months off i find my self back at square 1 in regards to the depression and pain. but i notice the pain is the same on or off fentyal. i hate the audio hallucinations but kinda like the visual.. smile  i too see flashes of color like green blue and pink. now while i am very optimistic things will improve right now i just want to die ( no i am not going to try) but i find myself in situations where arguments and fights or worse are possible and that is NOT me. that scares the sh@# outta me. its like i am looking for something to happen to me. yes i am on shrink meds and am actively getting  psych help.i have a understanding wife of 25 years who was forced to provide  for the family and add to that i was a total jerk to her... i regret that so very much.  on nov 19 i am having a procedure to burn a bunch of nerves to stop the pain.... why i wasn't given this option a decade ago ill never know but i have high  hopes.  it sure would be nice if the doctors would be caring and get involved not just give it out and leave you to it. i never wanted to take opioids . anyway fingers crossed the operation works and i can rejoin the real world.

    also tyvm for giving your stories   it is nice to know im not alone but it saddens me to know others are suffering too.

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  • Posted

    Thanks for sharing your story…I feel awful for you and all you have been through! Man, it is INCEDIBLE that the doctors in California are so ridiculous and irresponsible!! Things are only slightly better here in Canada, but the docs are so paranoid, you’re always treated with suspicion and assumed that you’re an addict! Your story scares me greatly…I don’t know if you read my story somewhere on this board, and my issues are far different than yours, but briefly, I am a 43 yr old woman and I have been on 100 mcgs/48 hrs of Fentanyl for about a year now, after being on massive doses or morphine and other drug combos, because in April 2015 after I become deathly ill with an intrusive Strep A bacterial infection (that I may have picked up while on holiday in Cuba with my husband and two little girls) and becoming septic and in multiple organ failure. In May 2015, because of the bacterial infection, I had a double, below knee amputation of my legs. It has had devastating effects on my life, my marriage, motherhood, my career, my relationships with other people and most importantly, my relationship with myself! Before all of this, my life was normal, happy, lots to look forward to, full of love and laughter! I am still struggling with this, and trying so very hard not to sink into depression and be defeated. I am an attorney by profession and have been away from work for over 18 mths now and I don’t know if I will be able to return to my job in the same way…certainly not in the same capacity as before. Right now, I can’t imagine doing the kind of court room work I did before. I used to have massive amounts of energy, and I still sometimes feel like I am capable of that energy level, except that I am constantly betrayed by my body. I have the most incredible pain in my residual limbs (most amputees don’t have my kind of pain, but my amputations are very different and very complex). What scares me about your story is that I had a horrific experience a few months ago (similar to yours in some ways) when my pain doc tried to medically detox me with a combo of morphine for 5 days to bridge the fentanyl to Suboxone on Day 6. I ended up in the ER, with violent convulsions and screaming so hard that I burst a blood vessel in my eye. The ER doctors labelled me as a drug addict and didn’t care one bit about my circumstances, or even listen to my husband who kept trying to explain and had documentation from the doctor to support what we were trying to tell them…they also didn’t even bother to look up my medical history that was right there in the damn hospital! I was very close to stroking out/heart attack from the pain! BP was in the 200’s…Anyway, what scares me the most is having gone through that horrific experience, I don’t think I have the strength to detox in the ways that have been offered so far. Having no legs doesn’t make suddenly being stricken with vomiting and diarrhea, often at the same time, easy by any means! The pain and the convulsing is for real, out of this world and drove me out of my mind!! I kept trying to hurl my body to the floor from the gurney, because I knew the floor would be cold and I was hoping to knock myself out! I began banging my head against the wall in the hospital, just to be able to focus on new, different pain, but only ended up with a giving my self a mild concussion and a goose-egg sized bump on my head! I just CAN’T feel that way ever again or go through anything like that agan…!!! Besides all the time it will consume and rob my kids of time with me. My husband is still so traumatized from watching me helplessly go through that, I don’t know if I can inflict this on him again! I have asked repeatedly if they could just put me in some kind of medically induced coma while going through detox, but the doc is reluctant. I am feeling panicked just typing this and thinking about this!!! Its bad enough that my legs had to be cut off to save my life, but to be put on this horrible drug, just to be able to get up in the morning and wear prosthesis, instead of being wheelchair bound for the rest of my life and have an opportunity to participate in my own life AND then to be treated with constant suspicion and/or like a dirt-bag drug addict…my god, this is no way to live! When will it end??? When will it ever end?? I just don’t think I can fight through this again, after everything me and my family have been through in the last two years…there is a limit to just how much someone can take…thanks for listening…

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    • Posted

      wow! just wow sad i am so deeply sorry for all you are forced to go thru, both you and your family.first thing i can say is just focus on 1 min at a time hun. don't let your mind race ahead. you didn't mention any psych help or meds but i recommend it (it is working for me) while i am extremely close to wanting to off myself i wont. i cant do that to my wife kids friends or myself. i can understand  about the amputation as that is an option for me if the surgery don't work. (left leg below knee) while the physical pain is fu@#$%# unreal the mental crap is far worse because it is like a cancer eating away at me. while my situation is FAR FAR different than yours the withdrawals and mental crap that goes along are close. i have a strange sense of humor and have already designed a a clear lower leg that will be a fish tank. i guess it is a defense tool in dealing with the thought. your family does love you as does mine but you have to focus on you first before you can focus on them.  like my ahole doc said to me, " this WILL be the hardest thing you will ever do" ha! i thought it was just words...nope it really is. while your body might react like an addict you are far from one! please don't even think about that anymore.  the ER jerks see so many dope seekers they are like farmers callus's. i hate the ER and the way they treat everyone. i know you can do this Justine! it will end , in a way. for me i just tell myself i am used to it. mind over matter i guess. i know it is hard with with having the mental crap but it is workable with help.  i am so happy you posted and want you to keep on talking. do not give up hun . do not quit and you will make it thru. (keep in mind i treated my wife ,family  like sh#@ for 16 years)  so i hear what you are saying.

      Justine, you are strong and smart! with a loving family you can do this girl. it aint easy but then again life aint and WHEN you get thru this you will be like superwoman!!!!!!!

      xoxo

      hb.

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  • Posted

    Awww, thanks for the words of encouragement, HB! That was sweet of you! I guess I should have added some more info though: so, I am on the Fentanyl 100 mcgs every 48 hrs (and I barely make it through 36 hrs and Im not gonna lie, sometimes when I just can't take the pain anymore, I do change the damn patch!) and I am on 1800mgs of Gabapentin (900 mgs 3X per day) and I take a muscle relaxer at bedtime 4mgs of Tizanadine, which does nothing but make me fall asleep right away and wake up an hour later (useless). I was on a few different antidepressants, but the problem is that I had a terrible reaction to all of them. Mostly because, I don't feel depressed! I am more p*ssed off than anything! I have never been on antidepressants in my life, I don't have racing thoughts, and I have never felt the why me?? because of the amputationsand I think that is because I am more grateful to be alive, and if that meant I had to lose both my legs, well so be it. At least my girls have their mother! It is strange I know, but that's just how my mind ticks, I guess. I do have something that resembles anxiety attacks from time to time, and its usually when I am feeling just so completely overwhelmed. Oh yeah, I also forgot to mention also that my mother is dying from lung cancer and we don't have much time left with her. I am an only child and my Dad passed away from prostate cancer 3 years ago, so I have been trying to take care of my Mother, so a lot of the anxiety and being overwhelmed can probably be attributed to this other horrible situation. I get so frustrated with my prosthesis because they totally hold me back from being to do a lot of the things I want to do for my family, especially my Mom right now. It breaks my heart that I can't get up and just do the things my mind and heart are dictating My first set of prosthesis were the absolute worst, the technician was such a jerk and knew nothing about double amputees, women, women my age and level of fitness and activity all she had experience with was mostly men, over the age of 70, terrible diabetics and she made a leg for them to maybe put on once in awhile to go to the doctors office or wear while sitting in a wheelchair or scooter. Yeah, no that is not me! She gave me such a hard time and caused me so much additional pain because of poor fit and wasted 8 months of my life, I finally told her to go @#%& herself and found a new guy on my own. Oh and she also hit up my insurance company for over $16,000.00 for legs that now sit in my storage unit because I can't stand the sight of them. AND, when she first presented them to me I was so traumatized, I threw them in the closet and refused to look at them for 3 days. But I did manage to force myself to put them on and walk all over the place. My physio guy was blown away and they kicked me out after 3 weeks because they said there was nothing else they could teach/do for me at that point, which in a way was a testament to my abilities, but also left me hanging and wondering what was next? The new leg guy I have is really amazing, but I am even having problems with this 3rd set I even broke one of the legs last week (which was the 2nd set)! Just from walking around! I still may have to find yet another leg person if I can't get these legs right. I don't care what it costs, I just know I can't keep waking up everyday and talk myself into putting on the prosthesis, because I am afraid of the pain! I just want to slip into them, like other people slip into their shoes. And don't get me started on my shoe loss my beautiful collection of gorgeous high heels all gone. I was literally known for my gorgeous, pretty shoes. Now I have maybe 2 pairs that I can wear comfortably with the legs, that won't twist my back. I didn't even own a pair of flats until I lost my legs! But believe me, I have been trying to get the cutest collection of new flats as replacements, but I can't wear any until I get the leg situation fixed up something to look forward to, I guess?! Lol! Anyway, thanks for lending an ear. I truly appreciate it. I am just so tired of being frustrated and being stymied not only by the Fentanyl, and limb loss, but not once have myself or my family been offered any mental health assistance, not even a social worker! My husband an I could have used the help of a therapist, because my husband struggles with immense guilt that almost tore us apart! He feels so guilty because it was his idea and insistence that we go to Cuba on holiday and then I became so sick. And for me, having to let go of the control I am used to having over my life and having to depend on others. That was and is hard, but it's getting better. At least something has improved, but it's just not enough. I need to get my life back on track! Slowly, slowly

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    • Posted

      Justine,

      First up, after HB's words of encouragement I can't really add much, in that respect; I mean, I found them very powerful words and I just hope that on some level you will be able ,to take them on board and they may add that dime of hope that you need, I'm sure.

      But I would add that, I know every single person's life is different. The last thing I would ever say, or want said to me, is "I know what you're going through", because that simply isn't the case. Even people diagnosed with the exact same conditions behave and react very different to each other. But what I do believe, is we, human beings do all have an immense capacity for perseverance, persistence, and an untapped stamina reservoir that is so deeply buried, or protected, it is only when things get really bad (like the rough times you describe) that we start to tap into it. 

      I have had my condition since birth. I had 5 hour long surgeries, many many times, from the age of 3 months, but I grew up as a kid not knowing any different. It is only now, looking back, that I believe, we must have these reserves. And in spite of everything, it sounds like you have it plenty!

      Also I have accepted some things which are as true and predictable as the tides: ER room docs are (often, not ALL) not the best at dealing with non-textbook ER rOom issues, like a broken arm or an accidental cut etc.. just as true here in the U.K. As it sounds elsewhere in the world. But trying to make a list of things that suck in life, and for the most part I cannot change, helps me direct my positive thoughts to the things I think I can change. It's just a thought. It helps me, so I sometimes suggest it to people. 

      I'm sorry this post is a bit rambling, but it would take books to write everything I would like. 

      But I was, honestly, so relieve just to see you had posted again, it even took me by Surprise!! So please, keep posting, sharing, reading the many great posts, like HB's one, above, and one day at a time, we humans can get through all the s@#! That life can throw our way. That, I do believe!

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  • Posted

    hey everyone, so its been about a month (i think) since i last posted here. so here is an update. so ok, my sleep is a tiny bit better , im getting about 4 or 5 hours a day, my gi is almost 90% now and my seizors/tremors are almost fully gone. my audio hallinactions are fully gone but im still having full visuals ( trails and walls/floors breathing) 24/7 and when i close my eyes i have like light/white exploshions with pink and blue dots. my pain level is the same @ 7 outta 10 but im used to it. on a great note, i had a procedur where ther burt a few nervs @ l4 s1 and omfg the relife was instant! my left leg cramping is now 90% gone!!! and this was a BIG deal. i dont even use my handicap card anymore. im lining up about 3 more over the year the deal with the rest om my crap. my problem is degenatrive but hey im living a new life now... as for mental stuff, well this is a major issue but its being delt with with meds and people to talk too (shrink) it begs to wonder why the f%$# they didnt offer this 15 years ago insted of fyental but i guess its the darkest crap that makes the good stuff so nice.  anyway i really hope those of you are doing ok and i am thinking about you.. you are me and i am you.

    hb.

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    • Posted

      Wonderful progress hb!  Looks like things are finally going in the right direction.  They call it practicing medicine here in the southern US.  That is exactly what it feels like to me.  Some practice is good and some not.  Pray the nerve burning continues to give you relief.  I have a few friends that that really works.  Some had to be done twice but holding now for years.  may God bless you and hopefully you will feel more like your healthy self.  Susan
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