6 weeks on Fentanyl, took my life away, struggling to get off

Treatment and medication
1

Hello everyone,

I wish you all health and peace.

I am grateful for this forum.

6 weeks ago, my doctors pushed me to begin a 25 patch in an effort to get me off of the 8 x 5mg IR OXYCODONE I was taking. They put me on the patch with 30mg Cymbalta and Clonadine. I had had success with Cymbalta for FML but my primary issue is trigeminal neuralgia. I was naive and from week one, the drug hit my body like a brick wall. I lost all interest in anything and never left my bed. Frankly, the drug came with whole new issues: severe abdominal pain, mental incapacity, weakness to the degree I lost all control of my diaphragm (am a singer), and I would cry all the time. I also lost accurate taste sensations in my mouth. I was put on 12.5, then this proved insufficient, and I allowed myself to go back on a cut patch (12.5 plus half of that). I seemed to get more ill over the course of 6 weeks. Last night, after realizing my muscle loss and still coping with intense side effects, I finally lost it and dropped to a 12.5, then cut my 12 in half this morning. It's amazing that in a short time, I have deconditioned my body, lost all interest in my life, gotten very behind on everything, and my depression is so severe I am waiting to go on Carbamazepine for neuralgia (it can increase depression). I wish to God I had been properly informed about this drug. It sure killed my facial pain, but it left me with sickness and no mental self. I lived in bed. I am debating if I should just take off the half (6mg), or prolong the illness I feel now. I have a few OXY for breakthrough but I am feeling like I can't put much in my body. I feel disappointed in myself for letting it go this long, pain or not.

Best wishes to all.

I am unsure how I will let it go, I didn't expect addiction and was told this was a safe and sensible medicine. I am extremely displeased with my doctors.

2

I can tell you what I did. I was on 100mcg for 12 years. I was so sick by the last 25, I decided that if I was going to be this sick, I might as well take the patch off (I think what I did was just not change it and let it run its course). It's taken me 9 months to start to feel normal. I'm more alive, more alert, I don't sleep all the time, I'm able to cook meals for my family again. We just didn't realize how drugged up I was. The pain management dr has me on Cymbalta 60mg

and it has helped with neuropathy caused by withdrawal. It helps with depression too.

This is a great group of people in this forum with a lot of experience getting off Fent.

We'll be here if you need anything. Hang in there!

Melissa

3

Hi Melissa

I am so encouraged by your kind words. Thank you.

I am waiting for the worst to hit me, it's been only really 12 hours. I did cut my patch last night to the 12, but that wasn't too far off what I'd just managed to get used to (but after reading the forum, I wonder if the sickness was withdrawal from dropping from 25. I really only did that 2 weeks ago. I took a hot bath ( very helpful), and it seems I can ONLY eat at night beyond crackers and water. I am so impressed by your accomplishment and it is inspiring to know you suffer from Neuropathy also. Nerve pain is no fun. I am probably going to just leave the halved 12 on and see how that goes until I see my doc on Monday. I am taking about 20mg of oxycodone at the moment. I went down from 40, but it feels like I am a slave

Thanks so much for the warm welcome, this place is a great treasure for pain patients. 

4

It's funny you should mention slave because I've used that same term to describe how I felt.

I always had to make sure I got the prescription in time, had to make sure the pharmacy got them ordered and had them on time, so I wouldn't go into withdrawal. This was every.single.month.

I'm really hoping that since you were on it for only 6 weeks at a low dose, that you'll be fine. 😊

5

Oh Honey my heart goes out to you.  My father suffered from bilateral trigeminal neuralgia but Fentynal did not help him.  I was on the patch up to 125 mcg for over 14 years.  It is a very powerful medicine which used to be used for end of life meds and cancer patients.  It also affected my desire to do anything called living.  Could not stay awake a full day.  Alot of my tiredness came from fighting pain but also from the meds.  I have been off fentynal since July 2016.  You will make it also.  You are down to six mcg and I went one more half to 3 mcg then completely off.  It took about three months to free my body from the effects.  I was so tired I could hardly lift my body off the couch and go to the bathroom.  My dogs helped me thru those days.  I had to move to take care of them.  That put me on the road to recovery.  I relied on the nurses from my insurance company Humana on phone calls to talk me thru several days.  depression was heavy and I cannot take any of the meds for that illness.  Today I still have pain but my body and mind feel alive.  

My doctor did explain I would be dependent and addicted to this medicine but my pain was so disabling that I would try anything.  It kept me alive until I could get better enough to live without the med.  

you really have been on the patch a short time so coming off should be easier but everyone reacts differently.  Please get up and move around some.  Walk to the front door first time, next day walk a bit further. Etc....one minute at a time....you can do it!  Susan

 

6

I feel like a slave in a number of ways: certainly in the way that you described, though more for the Oxycodone. I would fear going into withdrawal as much as I wuold avoid doing anything if I was close to the end of my med schedule out of fear my tongue would act up or a flare up would occur as they debilitated me and this led to a very isolated reality. I love talking, and yet my job (which I also used to love) involved facial movement and I began to get fired and feel too insecure to perform. My pronuciation suffers and I never went out with friends after it got bad. It is unfortunate that my husband is working overseas at this time and unable to join me. Another obsatcle for me wasin the sense that I live half the year in Asia for my work. There are times that getting prescriptions are very sensitive. I am treated like a "dangerous foreigner" asking for "dangerous drugs", and I dreaded that. In Asia, opiates are not managed by a pharmacy, rather, the police. I had lost my meds at times and was told I could lose my visa for this. So yes, taking them is no small matter, though for about 7 years they allowed me to heal and repair serious nerve damage. I would say my tolerance for the Oxy is very much reduced as I took only 15-20 mg the past few days, but I still cannot imagine having nothing to rely on for bad days. I wish this wasn't the case for those of us with "chronic conditions". That fear of being left with only horrible pain is so strong in me that I let it dictate my life and affect my confidence. I was hoping that too, and was very surprised when I was told I would likely have withdrawal, and then I did. I think I will either do as you did and leave this patch on, unless it's so bad I need to put on a fresh one (then perhaps as the other kind lady suggested, a 3 value patch or 15 quartered). My biggest struggle is getting up and doing things now. I am truly devestated about my muscle lose and the very serious blow to my career quality. Best to you, wishing you peace.

7

Your story nearly brought me to tears. I want you to know that we are behind you regarding the Oxy. From the sounds of it you only take what you need. Besides, a lot of us if not all of us take other pain meds (I use Hydrocodone if I need to). It's the Fentanyl that we are concerned about and trying to manage the chaos of getting off of it. I'm amazed at what you have to go through to get your meds. Compared to that, we have it made in America! Can I ask where you live? The lowest patch we have here is 25mcg so I'm just curious. I hope and pray you're having a good day! I was up all night with RLS that affected my entire body but, I've had 6 straight nights without RLS so I'm very grateful for that!

Stay in touch!

A big virtual hug!!!

8

Hi there Melissa,

I appologise for the late reply. I have not been well. Thank you for your compassionate comments, all of this helps me a lot. It's the little support I have and it counts in a big way.

My husband is from Co., but he is currently in Iraq and will be for some time. I work in Seoul, Korea much of the time, or I did, until this got hold of me. I am in Seoul now. I feel that Korea is behind the west in "thinking", though I have one American certified Rheumatologist whom I trust and feel is very good. I was initially treated as a drug seeker but (this will sound harsh) after a very harsh and unkind tapering, having still compained about pain, I gained "credibility" and later went on to be properly diagnosed. I was sent to a number of hospitals years ago at which I spent a fortune on tests, at a time when no one knew FIBRO was real or it wasn't considered real, and though I was thought to have Trigeminal Neuralgia, my attacks were not constant and less educated doctors seemed suspicious of me. There is a fear of drugs here that is so deep that despite a very drug-free society and a general fear a medicine, they are very prone to assume expats are seeking drugs to abuse FIRST, then act without predjudice when it's the only answer left. I had to literally go off oxy overnight to prove I was capable, and then still suffering (and of course, I was later sent to a pain clinic and examined/tested). There were many times I started to fear no one could figure out what was wrong with me and I'd spent a fortune to be deemed "perfectly healthy". As I aged, I got worse, and they smartened up. My insurance is best in Korea, as they do have a very good system. I tended to buy meds here - extremely well covered. It took time for me to get a good doctor with a proper understanding of my body. I do have that now. I also am supervised by a pyschiatrist who is always fearful that "I am going to become a drug addict again" - though I was never a drug "abuser", nor do I feel it is reasonable to expect a chronic pain patient to be able to perfectly distinguish pain from fear of pain after years or progressive pain. This has been my experience.. Today I am seeing that psychiatrist to discuss using Carbomazepine. I am aware it causes depression and impairs the liver, and I don't feel I can handle any more depression (or weight gain). I was given Targin when I requested a pain med change. Has anyone been successful with this? I am not feeling it makes sense to take it. It's essentially more Oxy. Then I am given IR Oxy for breakthrough pain. I was down to 5mcg patch before stopping the fentanyl. I actually was still getting relief from the Fibro and chronic tenderness of my face and head (not attacks, it isn't very affective for acute pain). But I was more functional on 5mcg with oxy than the 12.5 or 25 patch. I had actually experimented and put on the 12.5 for one night in a desperate attempt to try and understand which drug is doing what to my body. I woke up with blurred vision, severe stomach pain, and my mind was gone again - just a depressed daze that I battled for a month. I dont know how I managed the 25... I am now wondering if I can just function on 5mcg and that is easier to manage than adding more and more oxy...? I am exhausted from all this, and unable to tell the difference between withdrawl, side effects, and my condition. I wish they'd never started to "creatively treat me", and I was better of before on oxy alone, though my tolerance was getting too high and I felt terrified.

I want to thank you all for being here, it means so much to me. I wish you all peace. I also commend the Candian Telehealth system for providing 24-7 advice and info - it's free and very useful. I am Canadian-American. I have residency for the moment in Korea, but my health is now dictating my life choices and options.

9

I should specify that I took off my 5 patch only yesterday, and am on my second day of Targin - it is weak, and while I can't accurately distinguish withdrawal from side effects, I had a very rough night of nightmares and pounding heart, sweating, pain... it seemed to wear off with the 12 hours the drug works. It isn't very effective for pain. I needed the IR oxy right away. I dind't need it so much on SOME dose of Fentanyl, but am wondering if there is a more effective pain med for me that isn't fentanyl.

10

Wishing you Peace Susan, thank you for your very caring reply. I cannot stand the loss of mental capacity and hopelessness that even the 12 patch inspires. I am so torn on what direction to go at this time. RLS is something that only began with the use of opiates for me, I'd never had issues before and I now do. There are days that I feel bitter about being unable to "just be free' of this circus of meds and doctors and the hours of research I feel compelled to do, to try and figure out how to get better. The depression IS worse than pain, in many ways - for me. Thank you for the encouragement. I have many low days and came to read this website and the kind words of survivors. <3

11

There's so much I want to say but have the flu at the moment and it's hard to focus. I'll write back soon. Just know I'm thinking of you, hoping you get relief in whatever form that is! Hang in there!

Hugs!

M

12

Hugs to you poor dear! I know the flu is horrible. I am thinking of you, too.

I wanted to update about a very hard "psychiatrist monitoring" (as it is called) experience. This doctor is "mandatory" here if One uses pain meds. She is also known to overbook patients in a way that her own hospital complains about (2-4 hour waiting is normal). I resent seeing her, and she was the woman who "praised me for my willingness to suffer to show I was not a drug addict" the first time I was sent to her. I stll feel this was extremely abusive, and it genuinely confused me, making me feel inappropriate shame at a time I was very vulnerable and starting to desire any positive interactions with caregivers. I was just not strong enough (then) to see how abusive that is, how ignorant. The anger came when I was put right back on the pain meds as part of routine breakthrough pain management, after being forced to rapdily detox to "prove something untrue, to earn the right to be seen as a true pain patient". That cost me 2 weeks of work and plenty of pain and shame. I feel tramautized by this, and at the time I was in bad withdrawal, unable to get help anywhere else (literally, doctors would ask if I was on opiates and say "don't come here expecting drugs" or refuse to see me. It hurts me very much.

I lost my cool with her yesterday. She announced that "she knew for a fact that the carbomzepine would not cause any depression or toruble for me" and then reprimanded me for trying to express my OWN concerns as this is MY body and it's just generally "not allowed" to speak to a doctor with any kind of opinion here, assuming that doctor has the old school "status" mentality that she has. She is well meaning but I resent being forced to see her. Worse, she can't speak my language so I have to do so through any staff around who volunteers. It is frustrating to see my private matters be made so impersonal. I am venting now, I am sorry. I am truly upset. I had actually lost some of the meds she had given me as I have a cleaning lady assist me when I am imobile and I was - that lady accidentally threw away some of my meds. Her first wuestion was "are you sure you didn't take an overdose of these drugs? Referring to Cymbalta and Trazedone! I was inclined to answer, "yes, because the excessive tremors and headache and hell I would experience is clearly desirable for an addict like me". As opposed to last time, I was told she was "disappointed in me". I had to pay 80 dollars for this. I am now seeking a new hospital, as this was really my last straw. I was told this was mandatory to continue treatment with my very educated Rheumatologist, but I will leave it if I must. I am really upset. I went back on 5mcg of fentanyl "for now", and will see the better doctor Monday as I am concerned the IR Oxycodone and Targin are unacceptable to my situation (I really cannot seem to tolerate Targin, it makes me sick or increases my withdrawal - unsure which), and it didn't relieve my FIBRO pain, let alone my nerve zone tenderness. This is the most frustrated and scared I have been, the most fed up. The whole matter resulted in making me more depressed. I am taking one day at a time, people are reaching out to ask if I wish to try and see anyone, and I wish I could say yes, but I am so unwell, and afraid of pain. I am grateful this is the one place I can express myself though I am probabably overdoing it. I am just at wits end with constant withdrawal, pain, cocktails of drugs I don't understand and am not allowed to discuss properly, and I am hopeful to be able to get adequate health coverage in America soon.

13

Please vent ANYTIME for however long, for whatever reason.  It just breaks my heart that you're going through this.  When can you get back to the states (or is it Canada?)?  Also, I was just curious, when you come back, where do you live?

I cannot comprehend what you are going through.  Does the 5mcg patch really help?  Can you get a different Dr?  I'm a little bit confused.  The "psychiatric monitoring" is it done by a Rheumatologist or Psychiatrist?

I really hope you can get back to here asap.  I thought things here were bad, but I'll never complain again after hearing your story.  I don't know if your husband is military or contractor (I'm so sorry about him being overseas), but can you be seen on an American base where you are and see an American Dr or is that not possible?  You need to do what you have to, to get through this and I'm telling you that YOU CAN DO THIS!  One of the ways that have helped me cope is reading some of author Glennon Doyle Melton's quotes -

“March into pain and love with eyes and heart wide open. Stand in the wreckage and believe that YOUR POWER, YOUR LOVE, YOUR LIGHT are stronger than the darkness.”

“My courage will come from knowing I can handle whatever encounter.....I was born to do this.  I AM A WARRIOR.”

“When pain knocks on the door – wise ones breathe deep and say – Come in. Sit down with me. And don't leave until you've taught me what I need to know.”

She's an incredible blogger and author of two books, the most recent being Love Warrior which is on Oprah's book club and an NYT Bestseller list.  Anyway, I just want you to know that you can do this.  Yes, it's hard and miserable but you've got this.  Just look to getting home as soon as you can - make that your focus. Take one day at a time, get a calendar and mark off the days if that helps you see progress.  The past 9 months have been the toughest of my life, but it is getting better.  I've been thankful that while having the flu the past few days, I've not had to deal with the RLS and have been able to get more rest than I have in the last 9 months.  They kicked in about 2am this morning but I thank God for the reprieve the last few days.

I just want you to know that I know you can get through this.  Also, if you prefer, I think you can email me directly by clicking on the mailbox at the top right-hand corner (I think that's where it is) by my name.  Or, stay on the forum or do both,  the forum saved me many times.  Carol and Actiq and Pointer were my rocks.  We've been through it but have emerged on the other side which is exactly what you are going to do!  I am very concerned about Actiq right now because he's having a lot of issues including the loss of his partner last year but I've not heard from him in about 2 months.    He's in Scotland and someone I really grew to care about and respect.  

Ok, I'm done.  I'd like to hear from you as often as possible, (privately or on forum), even if it's I'm ok today.  Hang in there!  One more Glennon message:

"We were made to do hard things!"   

You've got this!!!

Many many virtual hugs!

Melissa

PS:  Here is a pic of our babies (long hair chihuahuas).  They make life so much better for me, especially when I'm really not well.  Ukiah (brown one) won't leave my side - she totally senses when I'm down and out.  Maybe they'll make you feel better too    Trei is the black/white one and he's 13 years old.  ENJOY!  And if you don't like dogs, I'm sorry.

  

14

I wrote a LONG LONG LONG response but it's being moderated for whatever reason......hopefully they'll release it soon.

15

I guess they aren't releasing my response. How long before you can get back to the states? Please give me an update on how you are doing......