the unknowns of fentanyl

[Randolpho]

That is an apt title. I have been thru HCV and successful treatment. I have CLL, but my oncologist practually swears
that my condition is unrelated to my ongoing fatigue. My gastroenterologist states the same. I do not have cirrhosis
and all blood tests come back as near normal. My problem is fatigue that is close to being incapacitating. This has
been hounding me for 12 to 14 yrs. I have been using the fenfanyl patch for for over 10 yrs., and as high as 50 units
a day. Having eliminated practically all other possible causes, I can only conclude that the fentanyl is the most likely
cause of my lethargy. I don't believe I need the pain mgt. and keep applying and/or chewing the patch to keep from
becoming ill. I want to stop using if only to find if it is the cause of my fatigue.My question is ,have others experienced
similar problems w/fentanyl. If this is the case,  please respond. I know I have the ability to stop using the patch,but
could use responses to solidify my approach.Please, no suggestions about Dr's or religion.Thank you much.

[philnoir]

What in the world are you talking about -- doctor's religion?

I don't understand your question. Does fentanyl cause somnolence, weakness, fatigue -- yes, it does.

Please don't use abbreviations unless you define them first. What is HCV and CLL?

If  you've been using transdermal fentanyl at 50micrograms for 10 years, you are opioid dependent. Stopping your medication is going to require weaning, unless you wish to undergo the symptoms of opioid withdrawal, which can be dangerous.

What a smart pain doctor will do is to first rotate you from fentanyl to another opioid that is easier titrate downward.

Chronic pain management with medication can never remove pain completely -- the goal is to reduce pain to a comfortable level.

It's a good idea to test the efficacy of your opioid analgesic every so often by weaning. Some discover that they can get by on a lower dose, and the best opioid dose is always the lowest effective dose required to maintain pain control at a tolerable level. For me this is pain level 3-4.

However, if you wean off your pain medication completely and begin withdrawal symptoms, you will risk hyperalgesia -- an increase in normal pain level due to opioid withdrawal, and not get an accurate assessment of your pain level without opioids.

This is why it is best to seek the assistance of a skilled pain manager who understands these dynamics when trying to lower your dose, or rule out your medication in producing a symptom, like somnolence.

By the way, chronic pain causes weakness, fatigue, and somnolence. It could very well be that poor analgesia is causing your symptoms.

[Randolpho]

Thank you for responding. I thought HCV was  very common for Hep C.
The CLL is a mild form of leukemia. Neither condition causes pain, especially
since I have been cleared of hepatitus for over a year. To clear the ? about
Dr's religion(as you put it), I just meant I don't want to be treated by a Dr.
since most don't have a true understanding of drug problems. As far as re-
ligion, I'm an atheist, and many people suggest prayer or religion as a form
of help, and I don't believe in such. Sorry for any confusion.I hope that explains your ?'s about those remarks. Since I don't have chronic pain, my
clear intention is to titrate down to nothing. You seem to be suggesting this
is not possible. I have to this point weaned myself down considerably. I
believe at least 50% or more. I've had a few ill moments, but expect things
to get much worse the lower I go. I just wanted to clear a few of your ?'s, and thank you for your advice. I don't want to drone on at this point and time and would appreciate any other additional suggestions you might offer.
I'm considering a drug clinic for help, but they are more costly than I expect-
ed. Please feel free to respond again. I spend much time in bed from fatigue, and my most curious ?'s are the relationship between taking fent.,  
and extreme fatigue. It doesn't cause me to sleep much, just the fact that I
can't do the most routine things. Very frustrating! Thanks again,Dolph.

[philnoir]

Thank you for clarifying. Many people who come here are not familiar with medical terms, especially abbreviations, and some abbreviations change depending on specialty.

Fentanyl is not easy to titrate because it comes in relatively large doses -- 50, 25, and 12.5 ug. Other opioids, like oxycodone, allow more choices: 2.5, 5, 7.5, 10, 15, 20, 30mg.

I believe that the best way to wean is in small steps -- approximately 10% per month, or 5% every two weeks. While many believe that "opioid withdrawal isn't dangerous", I've known that to be a false assumption. Opioid withdrawal places strain on the heart, nervous system, liver, kidneys, and other organs. It can be deadly as we have no numbers on how many people choose suicide over fast withdrawal.

In fact we do not seem to be interested in knowing how many people with chronic pain take their own lives each years because their pain is under treated or ignored completely.

If you do not have chronic pain, you do not belong on fentanyl.

My advice stands -- please see a pain specialist or addictionologist to help you wean.

Best wishes.

[Randolpho]

Thanks again for the response. My plan is to pursue the weaning process
and hope that I am able to reach the point where I no longer need to con-
tinue. You seem to have a knowledgeable amount of information about the
issue. If you would care to express your background and experience I am
curious, but by no means should you offer anything other than what you
have so far.
My origional thread was to find others that have had similar problems with
the fatigue that I believe is caused by fent. It is possible that the fatigue is
caused by as yet unknown factors, which of course changes the focus of
my threads. So in addition to withdrawaling, I am seeking others that have
had problems with long term usage of fent.,especially the fatigue factor I
have alluded to many times. Thanks so much for your advice philnoir, it is
truly appreciated.

[philnoir]

I am someone who lives with chronic pain and has done so for over 30 years. I have a medical background, and have done a lot of studying about my condition and its possibilities.

I've also been maintained on opioid analgesics for most of those years, and have a pretty thorough knowledge of their use also. I'll be using these medications for the rest of my life.

There are other forums here at medhelp where you'll find people like yourself, trying to stop using opioids.

Seek out the addiction / substance abuse forums.

Of course, you're always welcome here.

Good luck.

[fntn]

Good luck to you Ran, these medication are a wonderful therapy for many of us here. And I hope you can balance the expectations with the pontificated sicknesses that is in vogue these days.

[fntn]

And I don't mean this in a bad way. But the public pressure is pointing us all into questioning what all know to be effective. Finding the proper balance is a crazy struggle we all endure for sure.

[philnoir]

I know what you mean -- we're looking at the efficacy of oxycodone, which has been a stalwart tool for fighting pain for over 50 years.

It's absolutely nuts. Instead of seeking new ways to help people in pain, manage the side effects of medication, etc., they're constantly looking for more ways to avoid "diversion."

We called this Prohibition in the 1930s -- it didn't work then, and it doesn't work now.

[Randolpho]

it seems like the gov. is running the dispensing business   the pharmacies
are getting more rigid all the time, not very flexible   my quest to find if the
fent. patch is causing my long term fatique isn't generating much response,
but both of you have been helpful  I intend to stick w/titrating on my own
and to eventually regain good health  won't be a happy guy if it turns out the
fent. is not the cause of my fatique   time will tell   will keep you informed

[Tuckamore]

Excuse my tardy input. I've had some recent extreme pain issues and have not been very active on MedHelp.

If my memory serves me HCV stands for Hepatitis C Virus and CLL means Chronic Lymphocytic Leukemia.  

As I read your post you state the fatigue has been "hounding" you "for 12 to 14 yrs" and you didn't begin Fentanyl Therapy until 10 years ago. This would lead me to believe that the Fentanyl is not related to the extreme fatigue you are experiencing.

Indeed Fentanyl or any opiate can cause a degree of fatigue but to put you in bed most of the time I just don't see at your current dose. You state, "I have to this point weaned myself down considerably. I believe at least 50% or more."  If your estimates are correct that's less than 25 ug of Fentanyl. That dose should not cause so much fatigue that you are close to bed ridden. I encourage you to look for other causes of your fatigue.

This is a condition called CFS (Chronic Fatigue Syndrome). CFS causes you to feel so tired that you can’t complete normal, daily activities. While chronic fatigue syndrome has no known cause and is difficult to diagnose the symptoms can be treated.

I am not a physician - and I am not suggesting that you have CFS - I'm just pointing out that there can be conditions that cause the kind of fatigue you are experiencing. Maybe a 2nd - or even 3rd opinion with a new set of eyes can offer you better or more suggestions to your condition.

Another concern I have for you is your statement that you are "chewing the patch."  My goodness do you know how dangerous that can be? Please don't - never chew the patch. You cannot be certain of the amount of Fentanyl you are ingesting. I am concerned for your well being.

I wish you well and hope you are successful in finding the cause of your extreme fatigue. I sincerely don't think it is the Fentanyl Patch. However as Phil said  - if you are not in need of pain management you should not continue on it. Consult your physician.

Best of Luck,
~Tuck

[Randolpho]

Tuck, I'm affraid that you are correct on many offerings. One of the problems
is that the fent. does relieve some of the symptoms. I also have a few drinks
a day, just to feel slightly better. I wish there were a magic pill (not speed)
that could help me out. After 14 or 15 yrs. of this, with my hopes dashed
several times, I'm at a dead end. I know that many of you are in serious pain
and being tired may sound like a minor ailment. All I can say is this to me is
almost like being in pain. Of course it is not, but it is painful in it's own way.
So I guess I'm looking for various ways to get to the bottom of this. I think
seeking other opinions, is the best way to go. But where, and what type of
Dr's should I be looking for. That's about all I have to offer at this time. Any
suggestions would be extremely welcome. Thank you, and looking forward
to any helpful advice, Dolph

[Randolpho]

I just completed a response to your post that took about 20+ mins, and proceeded to lose it all. I'm surprised, because your the first person that
has similar ailments, that has responded. I'm 68 and was very athletic. I had
Div 1 offers coming out of H.S.,in B-ball and played competitively until my
early 50's. It was a blow to have to give it up. You have me thinking that my
condition may be related to my Hep C, although my gastro Dr. doesn't think
that's the case. As suggested by Tuck, I'm definitely going to seek a second
opinion. I don't know the bounds of this forum, but would be interested to
learn more about your situation. I don't have the pain you speak of, but can
sure relate to the lethergy. I can't nap during the day, but just the same
spend countless hours in bed. I was always very active. Be great to hear
more from you. Have you any possibilities of improvement. I hope there is,
but have serious doubts about myself. Hope to hear from you again,Dolph

[Tuckamore]

I certainly don't think your fatigue is trivial - or a minor aliment. Chronic brings fatigue also. I'm not implying it's equal to what you are experiencing.

I get fatigued from "fighting" to control/manage my pain, like when did I last take this med or that one, is it too soon to take it again - or if I take a walk will it help, or if I lay on my left side instead of my right, or if I try heat in a different location, and oh-oh did I forget to take that 800mg of IB, I must have the pain is so severe - should I take that muscle relaxer that I try to avoid - or should I take this pillow out from under my knee, maybe it's making the pain worse - and on and on and on!!! It's extremely tiring and I am done in by afternoon - and I know I'm not alone in this. Plus the pain just wears you down and out and makes me sooo tired. So yes we get fatigued. It's not minor and neither is yours.

My best friend suffered for several years with extreme fatigue. She could sleep at the drop of a hat. Finally an astute physicians did some very extensive (and costly) labs. She found that her immune system is not functioning as it should be. She has to have infusions every 3 weeks. These are not the normal labs - her normal labs never picked this up. Again there were very complex labs and pricey. She had to continually complain of her extreme fatigue. Her PCP found her condition. She feels so much better now. These infusions are life long treatments.

Talk to your PCP again - if he won't help see a Allergist or better yet a
Hematologist (blood doctor) or even an Immunologist. Make certain your fatigue doesn't have a treatable medical component.

I have serious doubts it's from the Fentanyl - but anything is possible.

Good Luck our friend in pain - and please keep posting and active in our community.

Peace,
~Tuck

[fntn]

Dolph - I sent you a message.

[Randolpho]

I certainly read your message, and thank you for the response. I have to
admit to my not understanding or not recognizing what ESLD implied. I do
understand the significance now. Obviously you have explored the possibilities of
a transplant. Not knowing all the varibles involved, I have little understanding
of the potentials involved in getting a transplant. At this time I have little
knowledge of transplants, but assume you have explored all facets and
limitations of receiving one. I certainly know about the wait list, but that would
be the extent of it. Just wanted to touch base w/you at this time, but hope-
fully we will connect again soon. Wish you only the best, Dolph(in bed of
course).

[Randolpho]

Thanks, and great to hear from you. Just wanted to let you know again that
the idea of getting 2nd opinoins or more is something that has been on my
mind for awhile. Not sure how to do this w/o involving my current Dr's. I need
really solid references, but from where? This note is primarily to acknowledge
your response, and my intentions to follow up with those suggestions. Will be
posting again soon. And with no doubt would appreciate suggestings from
all you so helpful fellow travelers(stolen from Dexter), a great escape from
reality "series" Sorry if that's a tad off the polnt. Feel well all, Dolph

[Randolpho]

I've just started to
collect blood test results and notes from the Dr's I
have been seeing. I hope to be able to start seeing a Dr. or Dr's, that might
be able to find out what is causing my fatigue. I suppose I need a referral to
do this. I would like to start seeing someone at a local hospital that has a
very good reputation. Not quit certain how to go about this. I suppose a
phone call or two will lead me in the right direction. Sound reasonable?Dolph

[Randolpho]

Jus checking in. Still titrating, down to 1/3 or less, but still fatigued. I have
seen my reg. Dr. and am waiting for test results. Plenty of blood drawn and
urine test too. I have really receieved conflicting opinions about the fent.
causing my fatigue. yes and no's. Test results due back next week. I hope
they show nothing serious, and hope the fent. is the cause. "That",I am going
to stop using in the next month. Don't know what to think but may find out
soon hopefully. Thanks all, and will keep in touch,gracias, Dolph

[remar]

Do you know what blood tests you just had? I'm asking because I wonder if your Dr has ever checked your thyroid. If your thyroid is not functioning properly is can cause extreme fatigue.
Another thing that might be causing your fatigue is depression. Were you having pain 12 to 14 years ago, or is that when you were diagnosed? Pain can indeed cause depression and depression can cause fatigue.
I read through all the posts and you didn't say anything about having your thyroid checked or if any of your Drs have ever mentioned depression.
How are you feeling now that you've cut down to a 1/3 of your Fentanyl dose?

[Randolpho]

Not sure what blood tests plus urine he ordered, but I know it included
thyroid and testosterone cks. and many other things. This is my PC Dr. who
is a great Dr. and person. I hesitated to see him, but finally wanted to tell
him everything. As for depression, I just don't think it could be a cause, maybe a result, even that would be minimal. And Tuck, need to clarify some-thing. The timing of the onset of fatigue is only an estimate. I was diaagnosed with HCV but still was functional I guess 14/15 yrs, ago. Then
what seemed to be symptoms of hep started to slow me down,and caused
some odd pains in my flank and back. Was sent to pain specialist and
started fent(25 or 50's). I'm unable to offer precise times, but there was
overlapping between all the hep C and fent usage, but the fatigue seems
to be the one constant. I'm confused myself, and hopefully the latest
throrough testing will give me some sort of answer. Like I said, very con-fusing. Hope this explains some things, and will know next week the
findings from all the testing being done. Could be fent.(I hope) or anything
else. If it's the fent. that's determined to be the the cause, I think I can do
something about that(stop using), if it's something else then hopefully it's
not something untreatable. As I said, very confusing. Just want some energy restored. Thanks, will keep you posted,Dolph. And Remar I'm
doing even less and feel no better. Not sure if that is to be expected.

[Tuckamore]

Thanks for the update. So many ppl post and leave -  and we never know how they are doing. Obviously many we forget due to the number of posts - but just as many we don't and we wonder, and sometimes worry. So again thanks for keeping us "in the loop".

I hope these labs will explain your extreme fatigue - if not, don't give up. Keep searching for answers. I'm glad you consulted your PCP.  It sounds as if you like and trust this Doc. I'd push him to search for the cause of your fatigue if these labs don't point to a reason. Remember my friend that has the auto-immune disorder? The labs that revealed her condition we not the usual ones.

Your Cardiac Stasis should be assessed also - unless that's all ready been covered. Cardiac issues can cause extreme fatigue, especially when your heart is not functioning properly to met your bodies needs.

Go down every possible road - as the old saying goes, leave no leaf unturned in search for the cause of your fatigue.

I agree with your depression assessment. In my opinion the medical profession (and others) too often look to blame depression for everything. Yes ppl with Chronic Pain or illness often have some depression, it's called Situational Depression - which means just what its name implies. The situation has caused some depression - on the flip-side one wouldn't be depressed if it weren't for the situation. Treat the situation and you treat the depression, it's as simple as that.

My heart goes out to you. I hear the frustration and pain in your words. I have to believe there will be an answer - you just have to be diligent in your search.  

I'll watch with interest and concern for your updates and progress.

My Best to You,
~Tuck

[philnoir]

Dolph,

Fatigue is a side effect of certain medications, but also a symptom of many diseases.

Many people with chronic pain have traveled down this road, only to learn that their fatigue is caused, not by their medication, but by the disease called chronic pain.

Whatever you discover, and whatever you decide to do about it, may your burden be light.

[remar]

I'm glad you reported back too.
This must be frustrating, not knowing why you've had this fatigue for so long. Phil is so right though. Pain can and does cause fatigue in many of us.
Are you stopping the patch because you have no more pain, or is it to find out if that's what's causing the fatigue? I'm asking because if you're still having some level of pain than that could be the cause.
Ask your Dr if he did a thorough thyroid test. Most Drs will only test TSH. We really should have that test and also, FT3, FT4 and antibodies tests. Some labs think if your TSH is under 5 then your thyroid is normal. This is not the case for all of us. Some of us need to have a much lower number. This is starting to change though and many labs have the number at 3.
I do hope you find the reason for your fatigue. Don't rule out pain being the cause, if you still have some level. There's times when I have to spend a day or two in bed because I've done too much and my pain level is so high. It can cause me to be exhausted.