Saturday, June 14, 2008

FENTANYL: The Withdrawal Experiment.


GOOD things about Fentanyl:
  • It's a cheap drug on my medical plan.

  • It's legal, thus keeping me from skulking around alleyways looking to score my next hit. (do we even have alleyways in Castro Valley?)
BAD things about Fentanyl:

  • Well, so far, pretty much everything.
  • Wearing the Fentanyl patch means you must not get overly hot or it will dump ALL it's medicinal goods into your system at once, causing major overload and some nasty symptoms. Ways to get hot? Have a fever. Work in the sunny garden, then get in the hot tub (with the patch carefully above the water line) to soak your sore muscles from working in the sunny garden.
  • Fentanyl sedates. EVERYthing. Your pain sensors, hopefully, but also your brain, your creativity, your internal workings, your....well, things best left unsaid, since this is a family friendly website. Plus, anybody who knows me is aware i'm already no Bundle of Energy. i've always worked at a lesser speed--clean part of the floor, sit down and read a magazine. Finish the floor, sit and read some more. Start on the kitchen tidying, sit down and have a cup of coffee and draw designs on a napkin. i always thought i was a bit lazy, but now it turns out i was "pacing." Who knew.
  • Fentanyl withdrawals are a bi----i mean, a trial.
i originally wanted to name this post "Fentanyl: treatment for pain, or an evil plot to kill my creative mojo?" When i said that to my hubby, i followed it with, "but i thought that was excessively long for a post title." He leaned back in his chair and said, "That's never stopped you before." i guess, given his proclivity for skimming, i would have had to do a skimmer's version of the title as well.
Just a brief overview of my withdrawal symptoms to date:
  • Very sick tummy, but on the upside i've lost some weight. Granted, it was weight i'd previously lost two years ago, but what the heck. i am getting tired of saltines, though.
  • Creepy feeling of crawling out of my skin. Hard to explain, worse to go through.
  • Excruciating pain on some days, for instance Wednesday being the worst i've had, worse than my most painful fibromyalgia day, 9 on a scale of 10, where 10 means "hospitalize me or shoot me with rhino tranquilizers, please."
  • Extreme anxiety. But then, the whole opiate experiment had that same effect. So, let's see: March, April, May, and now into June, anxious, anxious,anxious, and anxious.
  • Hypersensitivity to sounds. That also came along with the higher doses of Fentanyl, and again on the withdrawal path. Yesterday was the first day in months i'd been able to listen to music (well, besides American Idol, which goes without saying.)
  • Fits of temper
  • Personality changes
  • Zombie-ness, in varying stages and amounts.
So, as you can see, symtoms aaaaall over the charts! Dr God at the pain clinic wanted me to wean from the Fentanyl by dropping from the 125 mcg dose to 100, then 75 for 6 days, then 50 for 6 days, then just take the dive. When i did not replace the 50 mcg patch quickly enough i had a long bad day of withdrawal, so i decided to use my remaining 25 mcg for three days, then my 12 mcg for another three to slow down the process. i felt that i was Dr God's child being taught to swim by being thrown into the deep end and walking away. No support, no "this is what you can expect to happen" or "this is what you can do to cope." Just throw me in and head for Starbucks.

i grew up in Portland, Oregon, and puddles are more my size, so my plan was to wean off to the point that i could simply drop into a puddle at the end where i could still keep my head above water. If this withdrawal is a puddle, what the heck must the deep end be like???

While looking up symptoms of withdrawal at the beginning of this ride, i saw ads for private clinics where you could stay to withdraw. Basically they keep you unconscious for the worst of it. i see why it's no big deal for those actors who love their Oxycontin and such--when it becomes a serious problem, just spend a tiny portion of your fortune and check into a clinic! Virtually no pain and all gain, for a measly 10 grand or so-- BUT, if they had to go through the actual pain of withdrawing, they might think twice before popping them bad-boys again.

My state of discomfort is odd even to me. In the early days of fibromyalgia i remember trying to find a position for sleep. i arrived at sleeping on my back with a pillow behind my knees as the only way that didn't hurt. In these withdrawal days, i'm so crawly uncomfortable that i find myself in bed doing the rotisserie chicken: on my back for a few minutes, then my right side, then my stomach, then my left side, only to start the spit on its next rotation. NOTHing is comfortable! Sitting up is no better, even in my nice thrift-store LazyGirl chair, place of all comfort.

It's a curious state of being. Soon to be behind me. Then i can at least simply deal with the fibromyalgia pain again. Woohoo.


*OH--forgot to add the skimmer's recap: Fentanyl: little good, mostly bad, withdrawal is hell. There ya go, it's short, but you miss the clever analogies/metaphors--whichever they are, i can never remember. *sigh*

41 comments:

Jo said...

Well I am here popping my ibuprofen and keeping the home fires burning just waiting for you.

Those wonderful drugs that are susposed to ease the pain sure do have their downside too don't they....

I need to get off of this thing and go get ready to go visit the youngens so they can pay homage to JD for being a better Dad to them then their own sperm donor ever was.

Hugs and prayers for you Sis.

julia said...

OH lovely! i'm glad you get to go visit, and that JD has filled an empty place in their hearts. What a gift. And WOW i barely hit "publish" and there was your comment. ;-) Thanks for checking up on me. i also am back to ibuprofen (with the occasional vicodin chaser.)

Vivian said...

Thanks for your insights, and you're lucky to have a nice sister. I'm looking for Fentanyl info because my brother has been on high doses for a year and has started saying completely irrational things, having temper tantrums (at 40); he's forgetting really basic things and recent conversations.... very bizarre. Maybe side effects? This is way out of pattern for him. Sounds like you're doing better, xlnt! I have a friend who got rid of fibro-m when all her "silver" amalgam fillings were replaced.
Cheers~

Lea Ann said...

Oh dear Julie I can hardly read this. Love and kisses and many prayers to you. What the heck was Dr. God thinking when you first said this med was causing side effects?

I love you and you are so very good and smart and kind. I pray you are feeling every bit the wonderful person you are by now.

julia said...

Vivian--thanks for coming by!! Oh my yes, Fentanyl has done the same thing to more than just me--i just spoke to somebody today who knows a guy who said he's way happier being in pain than on Fentanyl that changed his personality and affected him in so many ways-- Now, that's a scary thought, but one i'm saying lately too! And weird about the dental stuff--i believe i had heard something of the sort, but didn't know what exactly needed to be replaced, so thanks for that tip ;-) i really really hope you can convince your brother that he has had a major personality change due to the meds, and he needs to at the LEAST taper way the heck down! Very scary stuff.

Lea Ann, you are a sweet cousin and friend indeed--and i believe Dr God was thinking, "but I am God--and I know MORE than this mere mortal." Idiot. (Glad he's not like the REAL God and knows what i'm thinking and saying--) And ALL PRAYERS HAPPILY TAKEN. i'm mentally more back, but DANG i am in pain!!!!! i keep telling myself it's just the withdrawals, and waiting to get back to my painful yet doable ibuprofen days...

Hinsley Ford said...

Skimmers' recap. Good idea. I should try it as long winded as I am. I am so sorry to hear all of this. What are you doing now for help with pain? As someone who experienced that skin crawl once, I have to say there is nothing, nothing like it, and I wouldn't wish it on my worst enemy. (Well...perhaps.) To me, it felt like little ants marching up and down on my skin and I couldn't stop them...or else like my skin had turned into small ocean waves and just kept rolling and rolling, never hitting the beach.

Anyhoo, sounds like you're better now. Sorry I wasn't here to offer support.

Love,
me

julia said...

Hinsley, you have your own bucket load of stuff to worry about. But thanks for the thought re: support. ;-)

i am doing better, just using Vicodin and ibuprofen for pain. Not quite cutting it, but i'm hoping i'm still feeling withdrawal pains and not just the fibro stuff, cuz that would not be good.

i'm so behind on everyone's blogs...

Anonymous said...

Thank you for posting this information.

I have been on the Fentanyl Pain Patch for three months. It stopped working and I decided not to up the dosage again; I decided to stop using it altogether at once.

HOLY HELL! Can I say that on line?

I am going through withdrawals right now. I was never informed about what would happen when you went off of this drug.

I feel so insane and antsy right now, I can't sleep, I am still having extreme hot flashes and pouring sweat. I am having rapid heart-beats, I feel every muscle in my body is on edge, in a creepy-crawly kind of way, and my usual pain is worse then before I started on this medication.

I once went off of the patch because I hated the side-effects, but then I started having terrible withdrawals, that I didn't even know were withdrawal symptoms, so I went back on the pain patch, and the withdrawal symptoms stopped immediately.

So I thought, this is better than twitching and writhing all night in bed like an addict.

So I was OK, then the side-effects started again, you know, the lovely stuff like:

Hugging the toilet, dry heaves, nausea, severe headaches, extreme hot flashes and sweating, ceasing of my period, sleep disturbances, etc...


I am a writer, musician, vocalist, artist, and I have not been able to write, play, sing, think, sleep, eat right. I am generally in a state of anxiety, everything is bothering me right now.

I am glad to know that this too shall pass. I am praying for it to go away. I would rather deal with my pain than these lousy side-effects and withdrawal symptoms.

I guess I just needed to air my crippled thoughts. Thanks.

A word of advice to anyone out there reading this...

Stay away from the Fentanyl Pain Patches!

julia said...

Oh my dear anonymous: i do so feel for you!! Here we are in February of '09, 8 months later, my dance with Fentanyl just a distant (yet ugly) memory!

HELL, of any sort, holy or otherwise, fits this drug. i don't know what is wrong with the doctors who don't inform their patients of the withdrawals and how hard it will be. Possibly because we wouldn't even try it in the first place? All i know is it wadded up several months of my life and tossed them into the round file. A useless bunch of months, other than getting in touch with my crazier, drug-addled self.

Honestly, it took from June thru September to finally feel clear of the side effects. Thankfully my psychiatrist (who helped me through it after the pain clinic guy tried to kill me with all the opiates) told me there could be spikes of symptoms for a couple of months. That way, when i had 2 more crawly, anxious days i knew what it was, knew it would pass. But seriously, i didn't feel right until 4 months had passed. That's some bad stuff.

i hope you can hang in--one thing the psych did for me was to put me on an ativan treatment of 3 times daily for 5 days, then 2 ativan daily for 5 days, then 1 daily for the next 5. That made an amazing difference. i didn't feel quite as much like crawling out of my skin or jumping off a bridge.

Your withdrawals sound AWFUL. More symptoms than mine. i found i had to keep busy to keep my mind off it. If i could engage my brain i could get through some of the hours of the day. At the time there was a Bible study going on at a local church for 9 days over a 2 week period. i went. it was tough, but it helped. Engaging with others helped. Getting out helped. i still felt pretty crazy, but it was a way to get through those couple of weeks, and i even learned something. ;-)

Please feel free to come back by and talk, Anon--though it's a distant memory for me at this point, it's still a pretty vivid one.

julia said...

P.S.--this posts consistently gets hits. What a crazy, dangerous drug that is obviously still being offered to many pain patients. Like we need the extra grief!!

Anonymous said...

Hello from Canada, Thank you so very much for posting this information. I will keep my questions short. Although, I personally could write a book on opiates and opiodes. They are so nasty to stop. You are right about it all.

I was wondering how long your withdrawl symptoms lasted?

Do you know about methadome? It is even worse to stop.

Any pharmacist will tell you that when weaning off of an opiate the time takes months not weeks. Dr's and pharmacists need to work together, especially when dealing with withdrawl. You should have been on each step for weeks at a time to allow your body to adjust. It infuriates me that they assume you can handle it, you'll go through some "mild discomfort". [Mild my A**!] Until you go through it you'll never know how awful it really is. Sorry to hear the professionals were so clueless and you had to endure that torture.

I'm so glad that you made it through your withdrawl. BIG CONGRADULATIONS!:) J.

julia said...

Hello J in Canada ;-) i think you summed it up best when you said "Mild my A**!" Loved that. And why did i never think to talk to a pharmacist about the withdrawal? EXcellent idea!

Apparently just because a guy has a degree that says he CAN prescribe drugs doesn't mean he SHOULD prescribe drugs, eh?

Thanks for dropping by and adding some important info. Fortunately in my travels through 4 different opiates there was no lag time so i only felt consistently horrid from March through May, when i was then allowed to jump off a bridge into fentanyl withdrawal. Glad i didn't have to withdraw from the methadone too!

julia said...

--Oh--and as far as length of withdrawals, i am trying to remember exactly when i began to taper off. i do know i was in the worst of it mid June, when i was totally off the fentanyl, and those worst weeks were 2 or 3, but i was still anxious and unsettled for several weeks more, and had the withdrawal spike again after a month or two. But i still felt messed up in my head a bit into September. Fortunately i only felt an absolute lack of hope for a week or two. PHEW. That was scary.

Dena said...

Hi Julia, I enjoyed your blog. I, too, have fibromyalgia and suffer daily no matter what I do. I, too, have been on my own Fentanyl withdrawal expriment -- OMG! I went from 100mcg to zip cold turkey -- not something I recommend at all! I was hoping to go down in small steps but wasn't able to swing that...and that would be out of character for me anyway.

I have beeb treated at the Fibromyalgia & Fatigue Center here locally for over 2 years, and just recently when I went on Fentanyl I was completely pain free for the first time in I can't remember how long. Then, I started getting nausea and other things I won't mention here, and turned into a different person almost. So, I decided to quit using it even though it was heavenly to feel the absence of pain for once in I can't recall how long.

This is my third day sans patch, and I'm just now beginning to feel somewhat normal again -- not that that is a good thing, mind you, but at least I don't feel totally doped out of my gourd.

I saw where someone mentioned having dental fillings changed out, and I have considered that, but I have done a fair amount of research that says that's a bogus claim. Since it's not inexpensive and I am not made of money -- wait a minute, money is only flowing OUT these days and not in since my fibromyalgia got so bad I had to quit my job as a professor and no one seems to believe that fibro qualifies as a disability...sorry I digress.

If anyone else out there has first-hand knowledge about the success of the removal of fillings, etc., to "cure" fibromyalgia, please let me hear from you. I'm spending a fortune with the Fibro & Fatigue Center to make me feel like living -- barely -- so I'm willing to listen to anything that might work. I take so many different drugs and supplememts that my children think it's perfectly "normal", and that scares me. I can tell them "don't do drugs" every day of my life, but they see me take handfuls at a time, and we all know that actions speak louder than words.

In any case, I'll be thinking about you (and my poor, blessed husband) as I flip and flop like a fish on dry land tonight in bed because of the creepy-crawlie feeling caused by the withdrawal from the patch. I have never been more ready for something to be over in my life. I'll be hanging in there and thinking of you and others out there on the same "road" I'm on. Good luck and God bless!

julia said...

hi Dena! Sorry to take so long getting back to you-- i am curious what sorts of things the fibro center has you do? It's not mostly pills, is it? i've not talked with anyone who tried the filling exchange thingy, so i don't know if that's a benefit to anyone besides the dentist. i do know a number of people who've improved quite a lot by getting their food allergies diagnosed (usually at a naturopath's) and removing those things from their diets. Many are improved by a slow rise into an exercise/stretching regime.

i guess with fibro patients being so varied in their causal issues, there is not gonna be any one thing!! (UNfortunately.) i wonder if your money would be better spent with a naturopathic doctor? i haven't tried one yet, but i've heard such good things about their diagnostic skills that i think i'd like to. Again that comes down to money--if something is covered or not on insurance, and how much expendable income you have for treatment.

How incredibly awful to have to step down from a job you spent so long getting an education for! What kind of professor were you? (now i'm just being nosey.)

How has your withdrawal gone? i think i was happier with the pain than i was with the altered personality of me on Fentanyl. :-)

Hoping to hear back from you!

onesmudge said...

wow... thank you for your post :)
onesmudge (UK)

julia said...

You are very welcome--when people ask me these days about pain medication and i say i take Vicodin on a daily basis, they say WOW but that is so strong! i scoff--Vicodin is but the tiny pup of opiates. At least i get to keep my own personality. And my sanity.

Dena said...

Sorry for the long delay, Julia. The fibro center focuses on balancing hormones, aiding the body's ability to produce energy at the mitochondrial level (with supplements), and giving me IVs that are chock full of high-powered vitamins, minerals, etc. They are expensive, and insurance doesn't pick up any of it except the lab work, but it's the only place that I've been that has helped me at all. The IVs always make me feel better, but I can't afford to get one each time I go because they are $125-$150 each. I went there today and without an IV, the total was around $400.

As for the Fentanyl, I'm off it completely and managed to survive. I've been living on Ibuprofen -- a huge step down, obviously.

I am trying to do more stretching, and when I have the energy, I play with my kids or try to get a little exercise. Unfortunately, I have a ruptured disc in my lower back right now, so that limits my physical exertion these days.

The sad thing about having to leave my job because of this illness is that no one recognizes the illness. Because it's an "invisible" illness, many people, including my ex-husband, believe that it's all in my head. Those of us unfortunate enough to suffer from this know that it is very, very REAL. I miss my job, but for the first time in my life as a parent, I am able to stay home with my children and be a mother. I am also homeschooling my children, and that is going very well. Perhaps someday I'll go back to the classroom at the university level, but in the meantime, my classroom is much closer to my bedroom, and I only have two young students.

I taught computer information systems for the last 10 years. For 5 1/2 years before that, I taught Accounting Info Systems. I do have lots of years invested in my education and certifications, but my body has different plans for me right now.

I'm glad I'm off the Fentanyl, but I miss the few days I had that were completely pain free. I sure wish I could find something that would work that didn't have some many negative side effects. I'll keep looking.

Good luck to you and all the others out there who read this.

julia said...

i just received an email from another Fentanyl survivor--today is January 9, 2010. i never had any idea when i wrote about this stuff that it would hit such a nerve. But doctors go on prescribing it and then leaving their patient to struggle with the withdrawal. My thought? No doctor should be allowed to prescribe Fentanyl unless he has taken it and gone through the withdrawal himself!!

cyndi b said...

The drug companies are the ones that should be responsible for making sure everyone is totally aware of this drug and what happens when you are through. The doctors are supposed to help you, but do they tell you about the withdrawal symptoms and side effects, no! They leave it to the pharmacy, who have over worked and underpaid employees, that don't care. So it comes down to before we use anything "become informed". Had I done that 13 years ago I would not be in withdrawal hell. So to get information out to everyone is the cure. Thanks cyndi b

julia said...

Cyndi-- unfortunately, for so many of us in pain, we'll try anything that promises relief! Sadly it doesn't always work out so well. Withdrawal's a bitch, but it can be done. i'm now at 2 years out, and i'm amazed i ever went through all that...i've done better changing my view of pain, changing something in my brain and its perception of pain i suppose. But that can work with fibromyalgia pain, i don't honestly know how it would do with the pain associated with something more organic and less "hyper nervous system" oriented.

Thanks for stopping by, and thanks for leaving a message. i appreciate that. :-)

Baby Moon Firefly said...

Wow, that article explained me exactly. last night I ripped the last 75mg patch off me I plan to ever use - and said to hell with it. Dunno if that was a good idea because now I have pain in all the odd places again - like before I started the patches, from head to toe. I thought fibro pain was horrible but this is way worse. I still had pain on the patches but not as intense.

I just have had such a terrible time recently with the patches. The worst symptom of all for me is the sweating then freezing chills constantly. I had to stop. Now all I have is percocet form breakthrough pain.

Thing is, before the patch I had gone through ever (and I seriously mean EVERY) medicine out there to treat the fibro and NOTHING helped. Now im back at square one and im ripping my heair out. =/

Oh and I do the 'rotisserie chicken' every single night. A sleep number bed has greatly helped but I still do the moves. And sitting on ther couch to watch a movie? ARGH! I must swap positions on the couch 100 times. I dunno how the hubby can stand me!!

julia said...

Hi Baby Moon! Wow are you ever brave! cold turkey from 75-- It is brutal since the withdrawal from the Fentanyl causes pain and then if you are alREADY in pain, blecch!! As long as you can remember during the withdrawals that the horrible things you're feeling will pass in time, you can hold onto that sanity thing we prize. :-)

At this point i am actually only using 30mg Cymbalta daily and then Vicodin on an "as needed" basis, which only works out to be about twice in a month. It's bizarre how we can teach ourselves to deal with the pain, which allows us to still have a brain!

i pray your withdrawal goes quickly and that you don't get discouraged--just know to keep looking for what works for you, it sure doesn't seem to be the same for everyone!

Thanks for coming by.

Anonymous said...

I weaned off fentanyl from 75 mcg to 0 and it has been hell. From creepy crawly to arms and legs jerking, I can't sleep, hurt more, and now read it could take months to overcome this. Thats just great!

julia said...

Yep, it's a horrifying drug the docs prescribe without telling us all the withdrawal nightmares associated! Could you get something for sleep to get you through the worst of it? Honestly, the first couple of weeks were the worst for me, but if you can get something to help the temporary sleep and anxiety problems it would be worth it! I wish you luck on this little journey thru hell. :-P IT WILL get better! You sound pretty tough to me, so I bet you'll do better than I did. :-)

Winnuendo said...

I've been on oxycodone for months due to chronic pain from a spinal injury. Today my Dr. asked me to inquire if my insurance covers the fentanyl patchs. After reading all your posts.........I better not start them, geez

julia said...

Yep, doesn't seem like anybody has had too much fun with the patches! They seem more unpredictable due to outside influence (like overheating) and are miserable to get off of! i feel for you, Winnuendo. i hope you find something ELSE that helps--just not these nasty things!

Anonymous said...

I've had 3 surgeries for back problems (this last one lasted 12 hours), and they put me on Fentanyl at the inpatient rehab center. Well, just started the decline from 25 to 12, and am getting the skin crawl, the bone aches, and the sleeplessness (even while taking Ambien ER). I'm still on extended leave from work, and the doc wants me off all my narcotics before I can go back to work, so my question is this - how long did the most serious of the symptoms last after the last patch? Thanks, and much thanks for the blog.

policebashing said...

9 days in to fentynal withdrawals i jumped off at 100 patch it is hell ,MY BIGGEST PROBLEM NOW IS ENERGY AND LACK THEREOF I amaveraging 4 km walks everyday but it kills me i feel ne energy ,no strength before jumping i was concreting and worked like an animal ,,if i can not get my strength back how will i work ,,,anybody know how to get strenght bak and stamina ,,,I have tried B12 eating right foods etc etc when i walk and do things arond the house i have to sit own have a breather,,,,it is as though i have 100kg 220pund bodysuit on

julia said...

Hi Anonymous and Policebashing--sorry to have taken so long to respond. Now it's been so long that you both know just how long the worst of it lasts...you should both be past the worst of it, still experiencing the occasional spike of anxiety perhaps...

That energy thing, it's a tough one! That's an equally big issue for me in the fibro alongside the pain, but hopefully whatever fatigue was caused by the withdrawal is better. i've been using Adrenal Stress End (the one with real pig adrenals in it) and that has helped. Better sleep, better energy.

How are the both of you doing now?

Anonymous said...

Thank you, thank you for your insightful writing. I have 2 physicians in my immediate family and well, not a lot of help.

I was only on the Fentanyl patch 25mcg. for a little over two weeks. I need a hip replacement and you get the picture. I used a second patch to help the increasing hip pain and felt like I was suffocating. This was Sat. Today is Tuesday and it's all been downhill. Now I've got to deal with the hip plus all the side effects from the evil patch and if I make it through this withdrawal I don't think I'll be keen to take any meds. It was a bit of comfort to know I'm not crazy. Still doesn't do anything for these horrible effects of the patch but I hope withdrawal doesn't take forever. I went online to see how long these things last...duh. I need some sort of time line. Anyway, I got a giggle and a lot of encouragement from your writing. Thx a ton!!!

Anonymous said...

Thank you, thank you for your insightful writing. I have 2 physicians in my immediate family and well, not a lot of help.

I was only on the Fentanyl patch 25mcg. for a little over two weeks. I need a hip replacement and you get the picture. I used a second patch to help the increasing hip pain and felt like I was suffocating. This was Sat. Today is Tuesday and it's all been downhill. Now I've got to deal with the hip plus all the side effects from the evil patch and if I make it through this withdrawal I don't think I'll be keen to take any meds. It was a bit of comfort to know I'm not crazy. Still doesn't do anything for these horrible effects of the patch but I hope withdrawal doesn't take forever. I went online to see how long these things last...duh. I need some sort of time line. Anyway, I got a giggle and a lot of encouragement from your writing. Thx a ton!!!

Anonymous said...

thank you so much for your page it has helped me so much. i thought i was going mad because of the withdrawls!!
for me the worst part is the insommna and the RLS in the day i can just about cope with the withdrawls but night time is the real test of how strong you are and im finding out that im not that stronge!! i thought it would only be a few weeks and it would all be over but now i know it could be weeks if not months!!
hope you are now on the road to recovery
take care x

julia said...

hi Anon 1 and Anon 2!
Thanks for the kind words, both of you--glad to be of some help (and perhaps some very needed comic relief) in this withdrawal struggle. Now i'm dealing with the withdrawals from the Cymbalta i was on for about 3 1/2 years. Also not a picnic! But so far not as horrendous as the Fentanyl, thankfully. At least the Cymbalta withdrawals only make me homicidal instead of suicidal. i know, i know, neither one is good... :-)

Anonymous said...

Hi, im two days in to my fentanyl patch withdrawal, I was on 25mcg and was using it for fibromyalgia and arthritis although I also have cervical spine problems and shoulder issues. To be honest fentanyl didnt help a great deal, I was on it for a year or so, but new problems with my health, mean that I need certain tests and opiates can't be used. Ive been tested for addison's disease which can be fatal if not treated but the first batch of tests gave mixed results probably because of the patch. So anyways, two days in, if I could, id be climbing the walls. Ive read that withdrawal can cause sweats, anxiety, insomnia, etc. but jeez the pain!! I cant keep my body still, in bed or on the sofa.. I feel like im loosing my mind. I havent slept - only light broken sleep - since I took the patch off, and the sweats, as well as being boiling inside my body but icy on my skin.. Duvet on, off, on off arrr! Its shocking. Ive tried to come off meds before with horrific side effects, including the psychiatric drug venlafaxine which left me with hallucinations and head shocks and 30 mins from being sectioned.. But im not sure which one is worse now.

julia said...

ACK!! i'm so sorry! somehow i've missed this comment and here we are a couple of weeks out...

How are you doing now after this much more time? i guess sometimes we're so ready for the doctor to do something to stop the pain that we try these lovely medications that we had NO idea how bad the withdrawals would be! and so EXTRA weirdly, the withdrawal from a pain med causes....PAIN???!? Doesn't seem right.

IF you can keep telling yourself that it's temporary and you aren't really going crazy, you can hang in there--if you can, i'd get some anti-anxiety medication from the doctor (Ativan etc) which will probably get you some sleep. Sounds like you are pretty sensitive to medications, and so get ridiculously bad withdrawals. That's good to know for the future for sure!

Let me know how you're doing! i have a friend with Addisons who's been successfully medicated for that for years, so here's to finding EXACTLY what you NEED for medications!

julie

Anonymous said...

2012 - September now,,,,,and yes, your post/blog entry has been a misery loves company session for me. I never thought about the withdrawal from stopping the med, I just got tired of being so drugged and didn't replace the next patch (fentanyl 50's). Really thought I was getting a virus, then thought of withdrawal....took me three days to actually look it up on the computer. I am a classic case, except, I have such diarrhea. I am so tired, now, but can not sleep well. I am this far into this cold turkey that I am not turning back now! I am angry at my doc for casually handing me the Fentanyl script with no warning....and I was in such pain that I took it with no questions and used it without reading the package info! After two months of sleeping every spare minute, I am now not so nice a person to be around. Grrr - warning: mad dog housed here !
I truly do thank you for your blog page...I see now that I am not crazy, just in the throws of withdrawal at home.

julia said...

September Anon! How do i do this, i thought i had responded to your comment but clearly i did not! i love the way you express yourself, too funny. At least you have not entirely lost your sense of humor while in withdrawal hell! i hope you've made it through alright by now....

Ratterjoe said...

Help do you have any suggestions for the people who have to live with the patch users??? My spouse goes from moody to mean to happy to non verbal from one minute to the next. I get defensive and don't want to.

julia said...

Ratterjoe, thanks for coming by!

That's such a great question. The only thing I know to suggest is that you remember it's not personal whatever she's saying. If you know the kind of person she really is and her behavior on the patch is different, try to remember who she really is and don't take it personally.

Honestly I was glad when my husband told me how Fentanyl was affecting me--I didn't want to be on something that changed my personality.

I do understand that "defensive" thing. Build in a pause before you answer. Then you can respond rather than react.

Best of luck, that is a hard place to be!

Peter Sakalaukus Sr. said...

I agree with all you say regarding the fentanyl patch. I am a 56 year old male, living in South Mississippi where heat is a fact of life. I like nothing more than working around the yard, breaking a sweat - the thing with fentanyl is - I could not stop sweating. First - I have a rare muscle disorder - myoclonic dystonia - for literally 30 years I was told I had fibromyalgia. Anyways - my son and his family spent the summer with me; I was outside often with the kids - and as was said, I would darn near if not - did - overdose multiple times a week.

I wore a 75 mcg patch, a new one every 24 hours (the effect wears off quick for some reason) and loving was off the table, not interested. My wife of 33 years is still incredibly gorgeous - but I had no desire. Sweating - after a shower I would turn the water to only cold because after - I can not stop sweating. I would go through 2 to 3 of what my granddaughters called "Pa Pa's sweat towels".

I would often feel like I was suffocating. I had auditory hallucinations - hearing my granddaughters screaming, my dogs barking while working in my home office. I'd rush outside - and all would be normal. There was always voices in the back ground. Very odd.

I got tired of overdosing or nearly overdosing, constant sweating, arguments with co-workers. My quitting stratagy was simple, I cut 1/8 of an inch (about 5%) off the patch each week. The patch I had was a "sticky patch, no gel so it was simple. If I cut more than that, 3/16's to 1/4 - I would be extremely nauseous. All went well for awhile - then the "creepy crawlies" set in. It is (not was) like millions of ant in my muscles - legs, back, arms - it is absolutely horrible. I have them now, had to get up at 3 this morning, 2 Sat morning. The creepies are BAD. Percocet occasionally helps (2 10/325 and a tylenol). It had and has got so bad - after 33 years of sobriety (I quit when I was 21, my wife never knew me when I drank and of course our kids did not either).

But - it's so bad I started again. Go to bed at 11, up at 12 with the creepies, have 2 double shots of vodka, go lay down in bed, back up within the hour, 2 more double shots - then sleep would come. Today, up at 3, pills and vodka. I can't work and I love my job, I work from home but can not stay still - more drinking. I hate my life, I have no desire to die - I desperately need the creepies to stop - but they won't. I removed the last 1/8th inch last week.

Unless you have no choice - stay away from the fentanyl patch - the withdrawals are horrible the side-effects are also.

My next battle will be to stop drinking - assuming the creepies ever stop.

This is my story. I hope you hate it as much as I do.

R/S

... Peter