Drugs-Forum  
Home Wiki Studies Forum Groups Blog Video Images News
Go Back   Drugs Forum > DRUG-FORUMS > Opiates & Opioids > Fentanyl
Mark Forums Read
Register Tags

Notices

 
Thread Tools
  #1  
Old 05-06-2013, 23:28
ezs52 ezs52 is offline
Newbie
 
Join Date: 05-04-2012
Female from United States
Posts: 7
ezs52 is an unknown quantity at this point
Points: 36, Level: 1 Points: 36, Level: 1 Points: 36, Level: 1
Activity: 0.0% Activity: 0.0% Activity: 0.0%
Long term use of fentanyl causing this?

I have been looking for an answer to this question for a long time, but have never seen it in any forum, so I guess it's time to throw it out there.
I am a long time user of Fentanyl patches, about 15 yrs. At the time I went on them for chronic pain issues, I remember asking the pain specialist what the long term side effects were. She said "none"..and like an ass, I believed her. However, I have to say, tho, that 15 yrs ago alot was not known about long term use of opioids. Onlly fairly recently has long term use been blamed for all sorts of problems, esp. endocrine problems (hormones).
I had very little side effects for 10 yrs. I used exactly them as directed, never "ran out early", never chewed or smoked or snorted them. But for the last 5 yrs I have been experiencing some pretty awful effects from something. I am not totally sure that all my problems are due to the fentanyl, as I am on a lot of other drugs, too, but nothing I haven't been on all along with the fentanyl. (cymbalta, toprol, baclofen, thyroid).
The side effects I have been experiencing are profuse sweating, heat intolerance, extreme fatigue (esp, after any sort of activity) shortness of breath, weakness, absolutely no energy or interest in anything. It's gotten to the point that I can only be up doing stuff for about an hour and then I have to lay down because I'm so weak and short of breath & sweating. I have no life anymore, no friends, & no energy to even do the littlest thing.
My question to you all, has this ever occurred to any other long time opiate user? I have been to 3 specialists & have had many tests, which didn't show much except low thyroid & low Vit D levels, both of which have been corrected. I think I need more endocrine tests--like cortisol & hormones.Each doctor I go to tells me something different (according to their specialty) Their diagnosis include chronic fatigue syndrome, fibromyalgia, autonomic dysfunction, sympathetic overload, lupus, etc) But nothing I do is helping and I am getting very discouraged & depressed. I don't know what to do anymore.
So if anyone could relate to this, please tell me your story. I'd really appreciate it. Thanks!
  #2  
Old 06-06-2013, 13:07
painfully-yours painfully-yours is offline
Silver Member
 
Join Date: 06-06-2013
54 y/o Female from United States
Posts: 1
painfully-yours is an unknown quantity at this point
Points: 5, Level: 1 Points: 5, Level: 1 Points: 5, Level: 1
Activity: 0.1% Activity: 0.1% Activity: 0.1%
Re: Long term use of fentanyl causing this?

Dear ezs52,

Please accept my suggestions in the spirit they are offered - cautiously!

"(cymbalta, toprol, baclofen, thyroid).
The side effects I have been experiencing are profuse sweating, heat intolerance, extreme fatigue (esp, after any sort of activity) shortness of breath, weakness, absolutely no energy or interest in anything. It's gotten to the point that I can only be up doing stuff for about an hour and then I have to lay down because I'm so weak and short of breath & sweating."

I doubt that fentanyl has anything to do with your symptoms. everything but the sweating is commonly associated with antidepressant medications. Yoiu should read the package insert for all your medications. look up the drug in wikipedia and then google <the generic name> "package insert" (with quotes around the two words so they form an inseparable phrase) and if it is online it should be the first result in the search.

You should also find more information about your medications. do some reading and pay attention to both the official version and the dissident opinions.

Most of your symptoms are identical to mine. I was taking a drug that is similar to Cymbalta, called Effexor. It was the ONLY drug I was taking at the time the damage occurred, and the damage was not just pronounced but dramatic! including wild jerking myoclonic movement disorder along with all the pain and fatigue plus some other symptoms that you did not mention but I suspect you are probably experiencing some of them also such as visual and auditory 'disturbance' (a euphemism for hallucination that sounds and looks like static and is probably caused by auditory and visual cortex nerves firing randomly when they are supposed to be quiet, because they are overstimulated by the double-acting drug).

Remember that Cymbalta, like Effexor, stimulates the entire nervous system by pumping up the serotonin synapses, the most prevalent synapse in the entire body. This is like pumping up the voltage on an electric circuit, potentially a useful thing to do in the short term but potentially disastrous if done too high too long. Cymbalta also increases the 'fight or flight' activity of the nervous system by stimulating the norepinephrine synapses. The combination of these two stimulii is one of the most potent forms of stimulation possible. Using it to treat depression is like putting gasoline on a smouldering fire. Using it to treat chronic pain is like whipping your child with a belt to get him to cut the lawn when he is sick. Yes it may work but it is generally a poor idea to live on adrenaline!

I had a very difficult time recovering and it took years. I still have symptoms more than a decade later. I recommend that you google antidepressant withdrawal and PANES. You may find some answers there. Another thing you can do is try reading The Antidepressant Fact Book and other dissident psychiatry books. If you have a local book store try reading some of the dissident doctor's opinions on psychiatry. The short version is that for those of us who are hearing voices and speaking word salad, psychiatry is unfortunately the only choice, but for the rest of us with chronic pain depression and mood swings, exercise and weight loss with natural diet are probably better remedies, since they represent a return toward our natural state (hunter/gatherer eating only natural food and exercising vigorously all day every day).

It is my firm belief (based on research, personal experience, and reports from acquaintances) that fibromyalgia and chronic fatigue syndrome are the potentially inevitable result of over-stimulating the nervous system with caffeine nicotene alcohol over-the-counter remedies herbs and illegal drugs. Modern antidepressant medications are powerful stimulants, although no one mentions this. Doctors pharmaceutical advertising and laypeople all seem to think that depression is like an infection of bad thinking and antidepressants are like antibiotics that fight the infection. the drug is a white knight chasing the demons away. Fantasy.

I believe antidepressants are commonly prescribed to mask the effect of damage from other agents and that the end result is similar to the end result of turning the oven up too high to try and cook your food faster - burn out. The serotonin nerves are the most prevalent in the whole body and I react very poorly to drugs that directly stimulate them or indirectly stimulate them, probably because my mother smoked while pregnant and I was fumigated for 18 years until I moved out of the house, so my nicotinic receptors were super-saturated throughout my entire development. More stimulation is exactly what I do not need, although it does temporarily relieve a few chronic symptoms they inevitably worsen every time in the long run if I try to take the 'short cut' of pumping in more stimulants.

The nervous system is neuroplastic meaning that it changes in response to its environment. Some of the changes are reversible and some are permanent. After taking Cymbalta for years, it is likely (though not inevitable) that your entire body, including your respiratory, circulatory, and digestive systems most notably, are entirely overstimulated and fatigued, as well as neuroplastically modified.

The modification you are experiencing sounds like two parts. First every day you are burning out all your nervous energy reserve by overstimulating your entire nervous system with cymbalta, second you are experiencing full-body nervous malfunction due to the neuroplastic adaptations your body has undergone in response to the overstimulation of the cymbalta. the first part (daily overstimulation) can be corrected by tapering very gradually off the cymbalta (I mean slower than 10% of your daily dose removed every week, adjusted according to the intensity of withdrawal symptioms - see The Antidepressant Fact Book - I had to open my capsules and measure the dose by spreading out lines on graph paper). You will have to be careful about the withdrawal because any change in antidepressant medication dosage is dangerous.

The second part (neuroplastic changes) must heal naturally and the healing will never be complete, even if it 'feels' complete. You will likely have intermittent symptoms for years afterward if not forever, sort of like LSD flashbacks. Antidepressants are actually mild hallucinogens. They both stimulate serotonin as their primary mechanism of action, which is incidentally why there is so much interest in LSD and Ecstacy as antidepressant medications. They are in the same family even though the pharmaceutical companies do not want us talking about our daily antidepressant as a hallucinogenic drug, so they invented new categories and tailored the antidepressants to minimize the visual and auditory effects even though they are still there.

After taking Effexor for one year I found myself short of breath with pounding heart dizziness and severe fatigue so pronounced I could not move after 9pm. Plus I had mild mania all day long even though I was physically devastated. On withdrawal of half my Effexor my neck muscles went into permanent spasm and I had to resume the full dose until I found The Antidepressant Fact Book. Cymbalta is also a fast-acting, short half life stimulant and it probably has a similar side effect and withdrawal profile, plus it stimulates serotonin and norepinephrine just like Effexor.

If you do some forum checking yoiu will find that this is a common reaction to antidepressants. They seem to 'work' on depression and anxiety by burning out all energy reserves so that there is no energy left over at bedtime to worry with. I think this is a deceptive cheap short cut to happiness and I have become staunchly anti-antidepressant after experiencing permanent brain damage and permanent loss of physical stamina and permanent dramatic increase in chronic pain level (doubled) from taking them.

Your alternative is to keep taking Cymbalta and just watch as you continue to deteriorate.

This is just opinion but for God's sake please consider that I did hundreds of hours of research to learn this information.

I apologize if I have broken any forum rules. this is my first post and i doubt i will do any more posting. I was browsing about pain medications and found this post by someone who is obviously desperate and felt I must say something.

Post Quality Evaluations:
shes obviously done her research
Great post informing the OP
  #3  
Old 06-06-2013, 15:52
lovemeahippy lovemeahippy is offline
Newbie
 
Join Date: 08-07-2011
Female from United States
Posts: 4
lovemeahippy is an unknown quantity at this point
Points: 16, Level: 1 Points: 16, Level: 1 Points: 16, Level: 1
Activity: 0% Activity: 0% Activity: 0%
Re: Long term use of fentanyl causing this?

ezc52...I know it's been quite awhile since you posted your question but I couldn't help but comment. I truly hope things have straightened out for you physically. It's a tough row to hoe when you just physically can't do it...regardless of the reasons. I too, am on Cymbalta 30mg, Synthyroid 125 mcg and have been on Fentanyl Patches a few years. I started out with a 12mcg patch and am now on 50mcg patch after a few years. I was on Cymbalta for years before the chronic back pain I have and noticed when the dose was changed from 30mg to 60mg ( to see if it would help my pain)...I felt so wired. It was almost as if I had drank 4 pots of coffee. It was a very uncomfortable feeling so I gave it a few days and said no thanks this isn't working for me. I'm very sensitive to stimulants..I drink one cup of coffee a day because I can't take in any more caffeine. I also have noticed I also have heat intolerance and perspire badly if it's even slightly warm around me the day of changing my patch and the next day as well. Fentanyl labels carry warnings about making sure you are not exposed to extreme heat. It sounds like your body is just taking in too much in medication or the mix of your prescriptions is just plain bad for you. We are all different and what bothers one doesn't bother another. Our bodies also change with age...have you lost weight? That will also mess up your medication doses...and make you feel miserable. I've always been a low energy person...I just don't have the stamina others do. Because I have back pain I tend to take frequent breaks when doing anything physical, so I don't push myself to the limit...I know I can't. I'm one of those kind of people when I get very tired, I'll get physically sick. Keep going to your doctor and tell him/her of your concerns...this is a real issue for you. Hang in there..keep aware of your symptoms and any changes that might be linked to those. You almost get anal about it but..you know your body better than any one...and sometimes you're the one to tell the doc what you think is going on. Let us know how you are doing...Peace...

Post Quality Evaluations:
Please use paragraphs to break up big blocks of text. This is difficult to read. Thanks
  #4  
Old 17-06-2013, 02:35
ezs52 ezs52 is offline
Newbie
 
Join Date: 05-04-2012
Female from United States
Posts: 7
ezs52 is an unknown quantity at this point
Points: 36, Level: 1 Points: 36, Level: 1 Points: 36, Level: 1
Activity: 0.0% Activity: 0.0% Activity: 0.0%
Re: Long term use of fentanyl causing this?

Painfully-yours & lovemeahippy--Sorry this took so long to respond to your posts--would you believe I forgot what forum I put it on, and could't find it! (That's how bad my memory is) Thank you so much for all the information you gave. I have spent the better part of the day researching cymbalta. I had researched cymbalta several times before, but that was a while ago. I guess I got stuck on blaming fentanyl for everything & I'm sure it doesn't help matters being on it. I had already started weaning off of it I've gone from 100 mcq patch to 62 mcq. I'm going very slowly--having very bad restless legs.

But, anyway, I will start going down on cymbalta immediately. I can't believe how you opened my eyes to this & I'm totally freaked. I had tried to go down on cymbalta once before, and felt horrible.
I think I did it too fast. I had never heard that cymblta was a stimulant. So your theory makes sense. I will continue to research it.

So, thank you for posting this one time, painfully-yours, You might just have saved my life!
  #5  
Old 17-06-2013, 03:42
prescriptionperil prescriptionperil is offline
Titanium Member
 
Join Date: 13-05-2013
Female from United States
Posts: 519
prescriptionperil really adds to the discussion.prescriptionperil really adds to the discussion.prescriptionperil really adds to the discussion.prescriptionperil really adds to the discussion.prescriptionperil really adds to the discussion.prescriptionperil really adds to the discussion.
Points: 762, Level: 4 Points: 762, Level: 4 Points: 762, Level: 4
Activity: 4.9% Activity: 4.9% Activity: 4.9%
Re: Long term use of fentanyl causing this?

Outside of the shortness of breath (except when feeling panicky) could perimenopause be a possibility?
Hormones fluctuate rapidly in this phase leading up to menopause, thus checking them is useless in this
phase prior to menopause.

Is your pain controlled? I'm on 200 mg TR Morphine, which according to the PDR loses efficacy after four days, plus 30 mgs of oxycodone for breakthrough pain. I'm soon to have my second knee replacement,
which will hopefully allow me to walk for exercise, again.

CHRONIC PAIN SUCKS!

Could the fentanyl patches be not holding the entire time sending you into withdrawal?

The person who fought for chronic pain to be treated with opiates, long term, has changed his mind. I saw the article on this site recently. Perhaps you can find it under news, as I can't recall the heading to do a search.
  #6  
Old 01-07-2013, 17:00
SRLMJ23 SRLMJ23 is offline
Account Awaiting Email Confirmation.
 
Join Date: 15-03-2013
29 y/o Male from United States
Posts: 8
SRLMJ23 is an unknown quantity at this point
Re: Long term use of fentanyl causing this?

To the original poster. I am an M.D., Psychiatry being my field of practice, however, I suffer from chronic pain in my lower back. The sweating and problems relating to heat are from the Fentanyl, however, most Fentanyl users only experience this short term as it usually goes away the longer you are on the patches.

I recall when I was first put on Fentanyl Patches and it was almost summer and I did fine, but then when summer came and we had these HOT, SUPER HUMID, New York summers I experiences MASS sweating...to the point of where my friends were like, man are you okay, and I just had to explain to them that this medication on causes this. However, every summer since then I sweat normally so my body has adjusted.

You are on Toprol, which I am also on. It is a beta-blocker which how they work to control blood pressure is by slowing your heart down. This can cause the lack of energy and also how you can only do physical activities for so long. This is because the beta blocker is slowing your heart rate down and does no allow your heart to get to the level needed to properly advance blood through your system when you are doing physical activities.

I can give you some advice (but please remember this only advice and you need to talk this over with your own doctors before doing any of this!!!!)

1. I would ask your doctor to take you off the Toprol completely and put you on another kind of blood pressure medication. There are MANY classes of HBP medications, I will give you a few:

-ACE Inhibitors, probably the best known ACE Inhibitor is called Prinivil (Company Name) aka Lisinopril (Drug Name & Generic name.) ACE-I's work like so: Angiotensin is a chemical that causes the arteries to become narrow, especially in the kidneys but also throughout the body. ACE stands for Angiotensin-converting enzyme. ACE inhibitors help the body produce less angiotensin, which helps the blood vessels relax and open up, which, in turn, lowers blood pressure.

Some noted possible side effects of ACE inhibitors:

Skin rash
Loss of taste
Chronic dry, hacking cough
In rare instances, kidney damage

******Women who are taking ACE inhibitors or ARBs for high blood pressure should not become pregnant while on this class of drugs. If you're taking an ACE inhibitor or an ARB and think you might be pregnant, see your doctor immediately. These drugs have been shown to be dangerous to both mother and baby during pregnancy. They can cause low blood pressure, severe kidney failure, excess potassium and even death of the newborn.******


-Calcium Channel Blockers (CCB's): One of the best known CCB's is Norvasc (Company Name) or by drug name Amlodipine Besylate. This class of drugs works like the following: This drug prevents calcium from entering the smooth muscle cells of the heart and arteries. When calcium enters these cells, it causes a stronger and harder contraction, so by decreasing the calcium, the heart's contraction is not as forceful. Calcium channel blockers relax and open up narrowed blood vessels, reduce heart rate and lower blood pressure.

Some noted possible side effects of calcium channel blockers (Most of which go away after a week or so):

Palpitations
Swollen ankles
Constipation
Headache
Dizziness

Those are two options for Blood Pressure Medications, there are so many different classes if I put them all down on here it would be like reading a damn book! So think about those options.


2. Cymbalta is an anti-depressant known as an SSRI and a "pain" pill though I stress that Cymbalta in no way is really a pain pill. It generally only helps a very limited amount of people. Cymbalta works on the central nervous system and it is generally a "downer" it used to keep you on what us Psychiatrists would like to say "Homeostatic" derived from "Homeostasis" which simply means your body is equal. So you shouldn't be depressed but you also shouldn't be hypermanic, just even keeled. So some of your energy problems could be from that. There is nothing I can suggest because most all anti-depressants these days are all SSRI or SSNRI's. So changing to a different medication will not help in this case. Possibly a lower dose, or maybe even a higher depending on how you feel. This is a talk you need to have with your Psychiatrist. DO NOT STOP TAKING YOUR ANTI-DEPRESSANT's unless your doctor tells you too. There can be withdrawal syndromes and it can cause a difference in thinking that can lead to suicide or strange behavior.

So start there and please come back and let me know how things are going with you. Your mood, ability to exercise, sweating etc.....

Thanks for reading!

~SRL

Post Quality Evaluations:
That's some very good information with thorough explanations. Thanks for sharing.
  #7  
Old 03-07-2013, 23:20
Kim32E Kim32E is offline
Newbie
 
Join Date: 13-08-2011
46 y/o Female from United States
Posts: 1
Kim32E is an unknown quantity at this point
Points: 6, Level: 1 Points: 6, Level: 1 Points: 6, Level: 1
Activity: 0.3% Activity: 0.3% Activity: 0.3%
Re: Long term use of fentanyl causing this?

Hello, ive been on fentanyl since 05. I also take oxycodone 15 mg, i also suffer from sweats, miserable especially at night! Im only 45 and not in menopause, i have nearly all the symptoms you describe, feel like im being a lazy lump but i cant move! I have some arthritis, fibromyalgia, chronic migraines, but the only thing i take like clockwork is the fentanyl. So no, i dont think youre crazy, or imagining it. Ive not investigated it with my doc. I honestly dont want more drugs prescribed or higher doses of fentanyl which is probably what u may need? Ive been on same dose for some time and it may be the tolerance i dunno, im on 125/2 days over 2-3 years i know by my pain level i need higher dose, but im holding out as long as possible, the whole body ache is hard to deal with and i know i havent given u a solution, but know i feel your pain. Let me know what you finally find out, and ill do the same if i ever fess up to my doc.
  #8  
Old 10-07-2013, 19:31
ezs52 ezs52 is offline
Newbie
 
Join Date: 05-04-2012
Female from United States
Posts: 7
ezs52 is an unknown quantity at this point
Points: 36, Level: 1 Points: 36, Level: 1 Points: 36, Level: 1
Activity: 0.0% Activity: 0.0% Activity: 0.0%
Re: Long term use of fentanyl causing this?

To SRLMJ23, Thanks so much for all your valuable info. Esp. about your explanation re: toprol in relation to my SOB. I did try to switch to lisinopril, but they made me feel horrible. Went back to thee toprol at 50mg but SOB & weakness came back immediately. I am considering cutting the toprol to 25mg, but I guess I should't self-medicate & should go back to my dr. (I am a nurse so I think I know it all! JK!!)
As far as the cymbalta goes, I am only on 30mg but I have tried to decrease it to 15mg. I felt awful..fatigued & depressed along with an overall sense of "feeling sick" . Went back up to the 30mg & felt better. To cut back on the cymbalta, tho, I jumped from the 30mg to 15mg with no weaning. Perhaps I should have gone down more slowly?? I am not sure if it's the cymbalta or the fentanyl, but I just feel "flat" Nothing interests me. Nothing bothers me. I am pretty emotionless. I guess I am "homeostatic" all right!! The lack of energy and increased malaise are awful.
The meds have helped my pain..I feel pretty stable as far as pain control goes, but my QOL has diminished considerably. From all my reading on forums and such, I have come to the conclusion that alot of my physical problems are actually side effects of being on fentanyl and perhaps interactions with all the meds given to me to counteract the side effects. I have felt "ill" for the last 5 yrs, like having a bad flu. I don't know how I will feel from one day to the next. The only way I feel relatively ok, is to not exert myself. If I just lay around & do nothing, I feel pretty much ok..almost normal. But within 20 min of "getting up" out of bed or off the couch, I am diaphoretic to the point I am literally "dripping" (disgusting), Flushed, HR up, BP up, SOB to the point that I am grunting (had stress test & pulmonary function with normal results so it's not CV related thankfully) I force myself to be up for 1-2 hrs but then I have to go back to bed where it will take 2-4 hrs to recoup.

I have been to many drs..have had many labs done. There were some abnormal ones, mostly inflammatory levels due to arthritis. Thyroid & Vit D was low but are now corrected. Lipid panel bad. I just went to an endocrinologist & am to have other labs drawn (cortisol etc) Everyone is trying to find a "real disease entity" to label all this with, (fibro, CFS, dysautonomia etc) when I have come to the conclusion that it's due to long term opiate use, even tho I have done everything the exact way my meds were prescribed (at least up to now), with no abuse, etc. I had been on a stable dose (100mcq for 8-10yrs with no adjustments)
So, my next step is to wean down on the fentanyl. I'm just not sure how to do it tho. I have already gone down from 100mq q 48hrs to (but kept the "old" patch on for 12-24hrs to augment the "new" patch)
to about 60meq q 60hrs. I did this by taping over a % of the gel patch. But I just found out that I'm not supposed to be doing that! I would like to be able to control my wean--do you think going to the Mylan patch would be better to do that?

I used to say while I was in pain (pre-opioid days) that I just wanted to have my life back, to feel normal--now I'm saying that again. I want my brain back, too.

Thanks again for your helpful advice.

PS As I read over this post, something just occurred to me. Like I said, I had been on a stable dose of Fentanyl for 10-12 yrs with no adjustments except to increase my BT norco from 1-2 prn to 2-3 prn. I usually took 2 1/2 tabs maybe 1-3x over 24hr period). Could it be that even tho my pain was pretty well controlled at this dose, my tolerance was increasing, and most of the symptoms I am having are really due to a need to increase my dose??

ezs52 added 9 Minutes and 41 Seconds later...

To Prescription Peril & Kim--Thanks for taking the time to give me your input. I wish all my symptoms could be blamed on perimenopause/menopause! Unfortunately (or fortunately, depending on how you look at it) I am finished with all that. I am 60 & probably went thru menopause when I was about 45. Which, coincidentally, is about the time I went on Fentanyl!! I was in really bad shape at the time--my chronic pain had taken hold, and I had been put on the patch. Just as it was stabilizing, my mother died, and shortly after that, my husband was killed in a car accident. My father died shortly after that. I was an emotional disaster and I think I kind of shut down. I don't remember having any periods after that. So, menopause was just mixed in with everything, probably compounding things, but I didn't even know it.

Last edited by ezs52; 10-07-2013 at 19:31. Reason: Automerged Doublepost
  #9  
Old 10-08-2013, 08:26
jewitch jewitch is offline
Silver Member
 
Join Date: 08-08-2013
Female from Canada
Posts: 47
jewitch is a decent psychonaut.
Points: 62, Level: 1 Points: 62, Level: 1 Points: 62, Level: 1
Activity: 0% Activity: 0% Activity: 0%
Re: Long term use of fentanyl causing this?

besides feeling like my brain is rapped up in a marshmallow i too share all of your symptoms and i am only taking fentanyl ( 2x 100mcg/h 16.5mg patches) and frequent IR morphine, for breakthrough pain. my short term memory is bad, if not terrible. i have not tasted my food in almost 2 years, have had a nasty taste in my mouth and bad breath to add to your list of 'issues'. before fentanyl, i never bought deodorant, because i never used to sweat, not even after 30 mins on the field playing rugby, now it pours down my body in rivers. i am lethargic most days having trouble just getting out of bed, doing the simplest choirs makes me breathless. yet i am still in pain. i want my brain back. i want my life back too. i have been reducing my pain meds, the fog has cleared some and the sweats have stopped. the pain remains the same however. and the nasty taste is worse. hope you feel better.
  #10  
Old 16-08-2013, 22:43
ezs52 ezs52 is offline
Newbie
 
Join Date: 05-04-2012
Female from United States
Posts: 7
ezs52 is an unknown quantity at this point
Points: 36, Level: 1 Points: 36, Level: 1 Points: 36, Level: 1
Activity: 0.0% Activity: 0.0% Activity: 0.0%
Re: Long term use of fentanyl causing this?

jewitch..The mouth problems/sweating/memory problems really suck. I have had dental problems since the birth of my first child but the problem within the last 5 yrs accelerated to the point of having to have tooth loss. Every time I went to the dentist, I'd lose a tooth. I recently had to have them all pulled (which just about crushed me) & I now have dental implants & dentures. The dentist said it due to extreme dry mouth due to the meds I am on. So make sure you are going to a dentist..maybe you can avoid some of those extreme problems. There are things you can do to help with dry mouth, but I don't know how effective they are. Didn't help me much! Drink as much water as you possibly can, brush & floss at least 2-3x a day, suck on sugarless gum or candy, use something like biotin mouthwash or drops
My short term memory is an embarrassment! People have called me a liar for "switching stories" but the fact is I just can't remember. So frustrating!!
Good luck & thanks for responding to me.
  #11  
Old 16-08-2013, 22:59
jewitch jewitch is offline
Silver Member
 
Join Date: 08-08-2013
Female from Canada
Posts: 47
jewitch is a decent psychonaut.
Points: 62, Level: 1 Points: 62, Level: 1 Points: 62, Level: 1
Activity: 0% Activity: 0% Activity: 0%
Re: Long term use of fentanyl causing this?

as i have been sick now for 22 years, i have been on one opiate or another off and on with illness. i switched from a shunt 1 1/2 years ago of constant IV drip morphine straight into my heart. i was not supposed to live this long. surprise , surprise. my doctor says i am on 'end of life therapy', he does not recommend my reducing the meds. my children say i am barely tethered to the earth. i walk away from my groceries in store, leave my wallet everywhere, and generally forget where and why i am there...i must have a care giver with me at all times. i am not allowed to travel, as the airport/ companies refuse to let me board their planes in my current condition. the dentist refuses to do any work on me as the dose of meds i am on are too high. my jaw has been slowly pushing my teeth out for 7 years or more. they just fall out of my head, ( just the back ones thank God!)
i am a walking skeleton. i have bruises around my ribcage where my skin is stretched so tightly, the blood vessels are bursting beneath my skin. i fractured my back in 9 places laying in bed. but i am still here. i will not go quietly into that goodnight...
  #12  
Old 09-09-2013, 06:44
ezs52 ezs52 is offline
Newbie
 
Join Date: 05-04-2012
Female from United States
Posts: 7
ezs52 is an unknown quantity at this point
Points: 36, Level: 1 Points: 36, Level: 1 Points: 36, Level: 1
Activity: 0.0% Activity: 0.0% Activity: 0.0%
Re: Long term use of fentanyl causing this?

To /
...my heart goes out to you. You have endured so much. It gets very discouraging, doesn't it? I would encourage you to keep trying to decrease your fentanyl dose. But it has to be done slowly... 200mcq of fentanyl is a huge amt. I'm sure your body has tolerated that level, but at a very high cost to your body. You mentioned that you were a "walking skeleton". I'm assuming that you mean you have lost alot of weight? If so, that means dosage-wise, you are getting more fentanyl now than you did when the dr first prescribed it. I would think your dosage should be re-evaluated. Maybe a change of meds? Some meds work better than others..what helps you might not help me. But, I don't know your long, and probably complicated, medical history, so I wouldn't presume to do anything without your drs. advice. You mentioned your back fractures..that alone must cause you terrible pain. I hope your kids are
helping you. It might be worthwhile to have one of them take you to the dr and express their concerns. It's amazing, sometimes, that when family accompanies the patient, how much
their attitude changes!
So, I will keep you in my thoughts & hope that you get some relief.
I am feeling a little better, thanks to SRLMJ23 (above poster) He suggested my blood pressure meds may be causing some of my symptoms, & he was right. I told my dr this, and she changed my blood pressure med. I don't feel as fatigued & short of breath as I had been. So I am so grateful he suggested that. I still have a lot going on still, but I will take what I can & be grateful.

ezs52 added 10 Minutes and 9 Seconds later...

To SRLMJ23..I'm sorry this has taken me so long to write this, but I just wanted to thank you for your advice about the toprol. I went back to the dr & she changed me to Benicar. Within a week, my shortness of breath was pretty much gone & I felt more energetic than I had in months. Of course, with my newfound energy, I overdid things & really paid for it! I guess I have to learn to pace myself!! But I just wanted to thank you for making the connection between toprol & my sob & fatigue. You helped me more with your post than all the drs I've seen in 5 yrs!

Last edited by ezs52; 09-09-2013 at 06:44. Reason: Automerged Doublepost
  #13  
Old 11-09-2013, 22:37
Puffader Puffader is offline
Newbie
 
Join Date: 11-09-2013
Male from United States
Posts: 13
Puffader is an unknown quantity at this point
Points: 9, Level: 1 Points: 9, Level: 1 Points: 9, Level: 1
Activity: 1.8% Activity: 1.8% Activity: 1.8%
Re: Long term use of fentanyl causing this?

I've been on every Fentanyl medication from the Patches, Actiq, Fentora and most resent, Subsys sublindual spray. I've been on some sort of opiate or opioid for 15 years. For me all these medications make me sweat, lazy, crave sugar and gain weight. My testosterone dropped so low I'm now on Hormone replacement therapy. Now some make me sweat worse then others. Methadone was the worst while Oxymorphone (Opana) was the least. I was actually cold on Opana(weird). You may want to ask your doctor to switch you to Opana to see how you respond to it. Fentanyl and Opana are suppose to be the strongest pain medications available. The problem I had with Opana was that it only has a 10% Oral bioavailability. It didn't work as well as Fentanyl but the side effects for me were cut in half. Long term use for me has brought on all kinds of health issues and the more I lay around and not workout or watch my diet the faster my health goes down the drain. I gain weight like crazy. If you have any questions please ask and hopefully I can help.
  #14  
Old 22-09-2013, 01:57
LeisureSLarry LeisureSLarry is offline
Newbie
 
Join Date: 07-10-2012
63 y/o Male from USA - California
Posts: 2
LeisureSLarry is an unknown quantity at this point
Points: 13, Level: 1 Points: 13, Level: 1 Points: 13, Level: 1
Activity: 0.3% Activity: 0.3% Activity: 0.3%
Re: Long term use of fentanyl causing this?

I've heard long term oxycodone and fentanyl (worse) use are associated with increases in falls. While I was in physical therapy for an arthritic knee, I got a friendly PT to teach me "fall prevention." We started with me balancing upon upside down half balls (like for Pilates) and then I got to stand on both thick foam and the half ball while throwing a medicine ball into a trampoline. It was actually, eventually fun! I think a lot of folks on pain meds need "fall proofing" because of the drug's relaxation and somnolence robs them of reaction time. Search the NYTimes for the original article. Falls kill!
  #15  
Old 21-10-2013, 17:16
ikcaj ikcaj is offline
Newbie
 
Join Date: 02-11-2011
Female from United States
Posts: 49
ikcaj is an unknown quantity at this point
Points: 65, Level: 1 Points: 65, Level: 1 Points: 65, Level: 1
Activity: 0.7% Activity: 0.7% Activity: 0.7%
Re: Long term use of fentanyl causing this?

I have been on Fentanyl 75mcg/3 days (Mylan Duragesic) since December '12, having tried most everything under this class of narcotics, including injections and other rx's since 2006. Until August, this was a positive life-altering event. I was able to return to work, walk without the use of a cane and just generally get my life back.

My regimen has been unchanged for 7 years, with the exception of swapping Lexapro for Cymbalta 18 months ago, and of course, adding the Fent. I've been on opiates for 7 years, primarily hydro & oxycodone, (the latter of which I caused really bizarre mood swings).

I take: 60mg Cymbalta, 15mg Mobic, 30mg Flexeril, 2mg Clonazepam, all at bed time. I also change my patch at bedtime. During the day I take up to 20mg Hydrocodone/APAP (10/325) for breakthrough. Until recently this was none on the first day, one on the 2nd and usually only one on the 3rd. Over the last seven weeks it has changed to taking both first thing in the AM. Additionally I have a script for Provigil 200mg. Because of cost, I am unable to take this on a daily basis. When I do take it, I usually take half a pill in the morning.(My tablets are brand-name Provigil, despite the fact they are now "generic".)

In mid-August two things happened. I accepted a promotion at work that increased my workload but still I only worked 35 hours a week, four days a week. On my second day in the new position I met with a family who informed me they had just come from the ER where the client I was meeting was diagnosed with some type of severe upper respiratory virus. We did not meet long and I was careful to wash my hands.

Exactly one week later I found myself with extreme fatigue, muscle weakness, sore throat, swollen glands. From that point through present, I sleep constantly. I can go to sleep at 11am, sleep through the night until 6am, get up and go back to bed at 11 again. 200mg Provigil does nothing to alleviate this fatigue. In ten weeks, I have only managed to go five days in a row without excessive sleeping, which was immediately after spending seven days on strict-bed rest. I felt great for three days, by the fourth I knew it was coming back. I barely completed the 5th day, spent the weekend in bed and reported sick for work today, losing my job in the process.

The most obvious assumption was viral infection combined with stress. My blood sugar & AC1 levels were checked, my white count was super high so I was put on Augmentin (Amoxicillin) and within 3 days developed thrush throughout my mouth, throat, vocal chords and esophagus as well as severe joint pain that the patches didn't even touch. I have taken amoxicillin countless times in my 40 years on this planet and never had any type of negative reaction. So I am now having lab-work to check for thyroid issues, as that appears to be the next logical step, and sincerely praying this will be a simple matter of treating a fairly simple form of hypothyroidism.


So why am I posting this here? Well because A) I have many of the same symptoms as the OP, B) S/he asked for stories, C) I need any advice I can get as well and D) I am worried my tolerance may be increasing and that what I am experiencing could be do in part to "third day withdrawals"

A, B & C: Symptoms of OP "are profuse sweating, heat intolerance, extreme fatigue (esp, after any sort of activity) shortness of breath, weakness, absolutely no energy or interest in anything. It's gotten to the point that I can only be up doing stuff for about an hour and then I have to lay down because I'm so weak and short of breath & sweating. I have no life anymore, no friends, & no energy to even do the littlest thing."

I've had profuse sweating since starting hydrocodone seven years ago but the heat intolerance on Fent is almost unbearable. I work in a professional position and try to dress accordingly, including wearing very light make-up. I put off dressing until the last minute. Once everything is ready to go, it takes maybe 5 minutes to get myself and the kid in the car, but which time sweat is dripping into my eyes, all make-up is gone and I have to sit with the AC blowing full blast on my face before I can drive.

The shortness of breath has only just now come about in the last three days. It seems to come out of nowhere as activities I could previously do, leave me breathless and sometime dizzy. I also get sudden bouts of trembling or shaking. These appear to be panic attacks as I have been experiencing severe anxiety whenever I leave my home, (also being away from my child, such as simply sending her to school, causes bizarre worries and thoughts of extremely disturbing scenarios); however this has only started in the last ten weeks. I have also developed brittle nails with ridge-lines and irregular/missed cycles (first-time ever, pregnancy is not all an option).

My research thus far all points to hypothyroidism and many articles state that certain pain medications can cause or worsen this, but I can't find a list of such medications. Is fentanyl one of such meds?

D: I have never really had a tolerance issue. I was on the same dose of Hydrocodone for seven years and it worked great until my problem worsened causing more pain, as documented via Xrays & MRIs. I took the oxycodone for 10 or 11 months I think, and the side effects were just not tolerable. The longer I was on it the worse it got. I switched from 40mg Oxy to 40mg Hydro with no withdrawals or side effects at all. The pain hurt but I wasn't an angry lunatic anymore. I honestly didn't know anything about fent when my doctor suggested it, but I did a lot of research soon after and read about the tolerance and withdrawals issues.

So also about ten weeks ago I noticed I felt significantly worse on the third day of wearing a patch. They never lasted three days but prior to this I didn't feel THAT bad, I just took my breakthrough meds and it was fine. Then about four weeks ago I noticed I didn't feel quite like I usually did the day after putting on a new patch. I attributed it to the illness. I mentioned it at my last dr. visit (same doc is working on everything) and he said I needed an injection, which he would happily do for the low price of $800 (since I don't have health insurance because of my pre-existing condition.)

I've never done anything with my meds other than take them as prescribed, but I did save my patches b/c the pharmacies here run out A LOT and I would sometimes have to wear an old one to get through until I could get my refill. One day I was feeling particularly bad and it was the third day, but too early to change to a new patch. I don't know why, I guess I was curious, so I tried cheeking a very old one and a great number of the symptoms went away in 15 minutes. I wasn't high at all, I just didn't feel like I'd been run over by a truck. Specifically, the anxiety lessened, the trembling went away, the muscle aches and pain unrelated to my specific pain-management issue were also greatly alleviated. I don't really think this could be the cause or cure for the issue as wearing a brand new patch doesn't make the overall symptoms better. To me it seemed more like how a normal person would feel if they took some Tylenol, but it's a very dangerous form of self-medicating so I don't intend to do it again, just mentioning it in case it means something.

Lastly, as the OP wrote, "I am getting very discouraged & depressed. I don't know what to do anymore."

I too am discouraged and somewhat depressed. If others find my posting 14 paragraphs of personal ills on the Internet to be somewhat odd, trust me when I say that I too find it rather strange. Especially given how cathartic it feels to just put all this out there. I do not have a single person in my life that truly understands what it means to live with chronic pain and health problems.

To the OP, I wanted to share this so that you would know you are not alone. In posting here, you are not depressing others, you are actually helping others who feel like no one understands what it's like to live this live. When you don't know what to do, post! Anything. Reply to others if your energy levels allow.

In a nation so divided over the matter of healthcare, (where people like me & millions of others who are un-insurable and work in order to pay for meds in order to be able to work in order to pay for meds!) the slightest mention of healthcare can spark negative debates. I've seen adults get into honest-to-goddness altercations standing in CVS just because one person overheard another talking to someone else about the issue. This is the society we currently live in and many of use our outcasts, but we can take refuge, when needed in the wonderfully non-judgmental Drugs_Forum community.

Keep coming back, we really do want to hear from you.
  #16  
Old 22-10-2013, 04:58
ezs52 ezs52 is offline
Newbie
 
Join Date: 05-04-2012
Female from United States
Posts: 7
ezs52 is an unknown quantity at this point
Points: 36, Level: 1 Points: 36, Level: 1 Points: 36, Level: 1
Activity: 0.0% Activity: 0.0% Activity: 0.0%
Re: Long term use of fentanyl causing this?

Hi, everyone..I didn't think this thread was still being used! I hadn't checked because I never rec'd any notifications that there were new posts. I signed up to follow it, but have never gotten any notices. And with my poor memory, I almost forgot about it! So, sorry! Didn't mean to drop the ball.

To Puffader & ikcaj-- Thanks for your posts. I have talked with my pain dr about switching to something else because I just can't stand the sweating. I have to wait, tho, because now I have a new problem, which I'll go into in a bit. Sometimes I think this doc has known me too long..when I go in for the mandatory "every 4 mos med check"..nothing is ever accomplished. We talk about changing the med, but she'll say "but it will have to be on the next visit, because we don't have time (to do it) during a med check (15-30 min). Then she'll start chit-chatting & get on the computer & do research. Next time I go, the same thing happens. So, I started decreasing the Fent patch on my own. I had started on 100mcq and got down to 50mcq, but the pain was so bad that I went back to the 75mcq. My side effects didn't seem to lessen with the smaller dose. So I think the answer is to switch to an entirely different med. I just haven't figured out what. I do think it's going to be a trial & error thing tho. On the good side, I don't think I have built up a tolerence to fentanyl, except for the fact that I change it every 48 hrs.

Ikcaj, I think that is part of your problem. Your patch is not lasting 72 hrs. I think most people who are on this patch find that out & feel better when they change it every 48 hrs. Some of your problems sound like withdrawal..I used to experience the same things. And I was just like you-on the first day of the patch, I didn't need any b/t med. On the second day, I needed to take something at night, but by the third day, I needed to take something every 4-6 hrs. And most of the time, I took it to relieve those withdrawal symptoms. When I went to every 48 hrs, I didn't have many w/d problems. However, there are times when I get hot & sweaty (anytime I'm outside, doing activities, etc) that I must metabolize more, & I can tell. Another thing, I have built up a tolerance to my b/t pain med (hydrocodone w/apap) So, what I guess I am saying, is that the patch is really variable in its dosage, depending on your body temp, your own metabolism, etc. which can account for many side effects.

I still don't feel well. In fact, I am worse. I have done so much research in the past few months--I am constantly on the computer. I am really beginning to think unless we have a problem that can be fixed with surgery/meds/treatment that has a rapid fix, most doctors are useless. They don't investigate our illnesses like we do ourselves. It's easier to just say it's anxiety, or all in our heads or they just don't know. I am (or was) an RN--I've heard how drs talk & how alot of them feel. I have to admit that PMDs are overworked & bogged down with so much crap (insurance, forms, computers, DRGs, d/c planning etc) that they do not have the time to "figure out" what's wrong with their patient. They're burnt out. So, it's up to us to do it. I know alot of drs roll their eyes when they hear "I read on the internet that..." but if we are not informed, educated, & pro-active patients, we probably won't get any answers.

But, I digress..sorry, I'll get off my soapbox now!

Ikcaj, so many of your issues mirror mine. You are on almost the same meds I'm on, too. I understand your fatigue. I had found through reading that there was a study with patients using fentanyl & their complaints of fatigue. One clinical trial added Adderall to the mix & found great improvement. I asked my dr about it & she agreed to try me on it. The difference was night & day. I could actually wake up in the morning. If I didn't take it I would sleep for 15 or more hrs. Adderall also helped my brain fog. The downside, of course, is that it is another addictive drug. But, at this point, I don't care. I tried Provigil too, but it made me feel weird and didn't really help much. I didn't like it at all.

I also worried about tolerance issues. There are many articles about that, and drugs used to prevent it. Baclofen, dextromethoraphan, & micro-doses of naltrexone are a few.. I had been on baclofen & flexeril already & I wonder if that had contributed to never building a tolerance to fentanyl. Flexeril, however, made me much too tired. I started taking that & again slept for 12-15 hrs with the Adderall..

My Shortness of breath & exercise intolerance came on suddenly, too. One day I could walk the dog 2 miles without problems, the next day, I couldn't walk 6 blocks. And it's been downhill from there. I am now anxious & jittery. (And, no, it's not the adderall because I went off of it for a month & it didn't change anything)

As I kept getting sicker, I began to worry about endocrine problems that can be caused by long term opiate use. So, in answer to your question about that, yes, opiates do cause long term endocrine problems. I found a new dr, a rather young one that I felt might not be burnt out yet!, & she has been very agreeable about doing anything I ask. (Usually, I don't mention I'm a nurse. This time I did) Lots of labs later (had hormone, adrenal, & other endocrine tests) the only thing really out of whack was my thyroid. Got that under control, but still felt bad. More lab tests..found an elevated calcium level & parathyroid levels. Went to a well-known endocrinologist (one of the top ten in the country) & she just repeated all the tests that my PMD had done! Her opinion was my Vit D level was so low, it was causing my calcium to increase along with my parathyroid levels. So I took Vit D for 4 mos & had more labs. My parathyroid levels had doubled. She again advised me to take more Vit D & retest in 2 months. I had started researching parathyroid & was astounded that I have almost every single symptom! (I had posted links here but was told I couldn't do that. I had to put them in their link section under "Endocrine problem with opiates?)

I am not suggesting that you have a problem with your thyroid or parathyroid. I am not a doctor. But so many of the symptoms fit. I am now in the process of trying to locate a surgeon. I am not waiting another 2-3 months to have a vit d level drawn. According to articles I read, taking Vit D increases calcium levels-something you don't want with a parathyroid problem. High calcium levels can cause muscle twitching/cramps, kidney stones, bone pain, & a host of other problems. (Again, see links posted)

So, ikcaj, I can totally empathize with your situation. I understand how frustrating this all is. You have to keep looking for an answer. You have to be pro-active & insist on being taken seriously. You have to start somewhere, and I think that starts with more lab tests. That, and researching your problems. Don't worry about where to start. Read the links I mention, and they will lead you. Talk to your doctor openly & honestly. You have to start somewhere.

With respect, I would like to mention one thing you said about "cheeking" your fentanyl. Please, don't go there. That is abusing the drug, and the start of a whole slew of problems. You can overdose doing that, too, because you never really know how much you get from that little patch. And if you do it once, it's easy to do it again & again. I can appreciate your need to make those symptoms go away but that is not the way. Please ask your dr. to allow you to change your patch every 48 hrs instead. Until you can do that, take your b/t meds-that's what they are for.

And, one last thing, I do not think it is odd that you posted. Not at all. But, I guess I felt that way when I first started, too, although I had been "lurking" for a long time without posting. If you are interested in emailing, so that you have someone to vent to, feel free. I have to check how to do that in a forum, tho, & will get back to you on that! Until then, start reading!!

ezs52 added 382 Minutes and 24 Seconds later...

PS I can't figure out how to post the links I referred to. If you are interested, please e-mail me for them. You can look up my profile to find my email address.

Last edited by ezs52; 22-10-2013 at 04:58. Reason: Automerged Doublepost
  #17  
Old 24-10-2013, 03:15
ikcaj ikcaj is offline
Newbie
 
Join Date: 02-11-2011
Female from United States
Posts: 49
ikcaj is an unknown quantity at this point
Points: 65, Level: 1 Points: 65, Level: 1 Points: 65, Level: 1
Activity: 0.7% Activity: 0.7% Activity: 0.7%
Re: Long term use of fentanyl causing this?

Hi EZS52,

I really appreciate your response. First let me say I absolutely heed your warning regarding the cheeking. It was just an experiment really and it was pretty dumb, I admit. Otherwise I've never abused my meds, given the ordeal we have to go through here to get scripts filled, I'm terrified of being blacklisted. I've never experienced a "high" from any of my meds; I find that to be a common thread among people with severe chronic pain.

I'm especially interested in the endocrine issues related to any opiate use. Just yesterday, some lady out of the blue informed me she is certain I have "adrenal fatigue", which she also informed me is not recognized by the AMA as being an actual condition. I've only done some introductory reading (I am like you in that I read scientific papers, not just Web sites wanting to sell me things), so I'm not really swayed either way on that particular "diagnosis" at this moment, but I am more and more certain the endocrine system is being negatively effected.

I do strongly believe there is a correlation between stress and my symptoms. The feeling is extremely different than any sort of anxiety attack or other so-called psycho-somatic response. There was an incident today that completely affirmed this for me personally. I was feeling fairly good, and actually planning to mop the floor (which is a big event for me!), when I received some information from work that was related to an ongoing stressful situation. In 10 minutes I went from feeling, if not great, at least functional, to suddenly being nauseated, shaking, and extremely tired. I laid down for a minute and wound up sleeping four hours straight. It was like suddenly being hit with the flu and the only unique factor was the stress. If I am having third day WDs that is also stress on my system and could be intensifying the reaction.

I will PM you for the links, and share any I've found that you may be interested in. I'd like to send you my lab results when I get them if that is okay with you, because I read a lot about how the "normal scale" for thyroid issues is really skewed. If you have any papers or other info on switching to 48 hours that I could share with my doctor, that would be great. Changing meds in any way, shape or form is very difficult here.

My geographical area has a major problem with illegal tracking of narcotics, primarily due to the legality of cash only PM clinics. Rather than say, shut down the known clinics and implement normal measures like databases, the local law enforcement has scared most doctors and many national chain pharmacies into deciding it's easier to just refuse to treat PM patients altogether. That's a whole 'nother issue but it certainly does not help my stress level when I never know if my meds will be in stock b/c pharmacists are no longer allowed to order meds based on customer use, they just get a random allotment and when they're out, they're out. So then I have to spend two days physically driving from store to store (within the same company) to see who has my meds as the pharmacists are no longer allowed to tell patients (who have been using the same store for years) if another store has the item in stock. (And this is CVS & Walgreens, we're not talking about mom&pop stores).

It's truly a nightmare and one I desperately want to escape, but before Fent I literally couldn't walk. I couldn't work. I felt like a terrible mother and completely useless individual for almost a year. Then I got what to me honestly felt like a God-given miracle. I returned to work in my chosen profession, I was active and taking my kid places again, my house was clean(er). I felt normal for the first time in years and then this happened.

Sorry if any of this is repetitive, I too have a bit of brain fog. Thanks again for sharing your story and listening to mine.
  #18  
Old 25-10-2013, 23:26
BreakingGood BreakingGood is offline
Silver Member
 
Join Date: 04-08-2012
52 y/o Female from United States
Posts: 40
BreakingGood is an unknown quantity at this point
Points: 35, Level: 1 Points: 35, Level: 1 Points: 35, Level: 1
Activity: 0.4% Activity: 0.4% Activity: 0.4%
Re: Long term use of fentanyl causing this?

Quote:
Originally Posted by jewitch View Post
i am only taking fentanyl ... my short term memory is bad, if not terrible.
My husband has been on the patch for years and I thought he had dementia. Then I started using fentanyl myself about a year ago, and I can't remember what happened when, and the aphasia (struggling to find the word one is looking for) is also a bit annoying WHEN ONE IS A WRITER ... So I am switching to methadone, which has a lot of advantages over fentanyl, and which is available at the pharmacy like any other drug.

This is not a life!

(And I have a cavity every time I get my teeth cleaned.)
  #19  
Old 26-10-2013, 19:39
ikcaj ikcaj is offline
Newbie
 
Join Date: 02-11-2011
Female from United States
Posts: 49
ikcaj is an unknown quantity at this point
Points: 65, Level: 1 Points: 65, Level: 1 Points: 65, Level: 1
Activity: 0.7% Activity: 0.7% Activity: 0.7%
Re: Long term use of fentanyl causing this?

I've noticed that my speech pattern has changed significantly the past few months. I wouldn't say I have aphasia in the clinical sense, but I most certainly have symptoms, in that I speak much slower than I used to & am actually aware of my brain trying to determine the words before I speak them. I've become very irritable at being interrupted when speaking as everything my brain just decided upon gets thrown out the window.
  #20  
Old 28-10-2013, 20:43
BreakingGood BreakingGood is offline
Silver Member
 
Join Date: 04-08-2012
52 y/o Female from United States
Posts: 40
BreakingGood is an unknown quantity at this point
Points: 35, Level: 1 Points: 35, Level: 1 Points: 35, Level: 1
Activity: 0.4% Activity: 0.4% Activity: 0.4%
Re: Long term use of fentanyl causing this?

RoFL! It's really not funny, but I'm writing a book with a deadline and I can't remember what I wrote yesterday and aphasia is not exactly helping me either... I'm moving to something other than fentanyl. I too thought my husband had dementia! This stuff SUCKS. And cheeking is such bliss ... it's like a trip to the ER without all the waiting around. (Doesn't work with Mylan, only Sandoz, which is over $200.) If the DEA is really interested in being Big Brother, fentanyl is the stuff to make illegal..

Ickaj, you have so many lawsuits I'm getting angry on your behalf and I don't even know you! At least you don't miss your job, right? Is there a husband in the picture? Nobody knows how thyroid troubles start, but it causes a whole cascade of problems so complex I got a headache trying to sort it out for my husband. He got a virus in Nepal, but nobody knows if that's how it started. Above all, I hope you've given the feckin quack with the chit-chat the heave ho. Here's my rx: A good Jewish lawyer who takes "charity" cases.

KEEP US POSTED!

BreakingGood added 2 Minutes and 22 Seconds later...

Oh look! I already posted to this thread! Maybe it's Alzheimers ... D

Last edited by BreakingGood; 28-10-2013 at 20:43. Reason: Automerged Doublepost
  #21  
Old 28-10-2013, 21:15
ikcaj ikcaj is offline
Newbie
 
Join Date: 02-11-2011
Female from United States
Posts: 49
ikcaj is an unknown quantity at this point
Points: 65, Level: 1 Points: 65, Level: 1 Points: 65, Level: 1
Activity: 0.7% Activity: 0.7% Activity: 0.7%
Re: Long term use of fentanyl causing this?

Yes, Breaking Good, I do have grounds for at least three lawsuits but every time I try to even think about it, the stress makes me ill. I've officially lost my job and will not be eligible for unemployment because the organization mis-classifies me as an Independent Contractor. That is one I am preparing to fight, if for no other reason than it is the right thing to do. Apparently they've been doing this for years, so it is not just me that is affected.

So now I'm unemployed, no insurance and no clue how to get better. I really want to get off the Fent, but it's the only thing my Dr will write aside from regular hydro & oxycodone. The issue here is the lack of Pain Mgmt doctors. They are extremely hard to find and even harder to get accepted as a new patient. I only got mine because I initially had Blue Cross HMO, and when I lost that job, he agreed to keep me on, but in general no one takes cash/Medicaid patients here.

I don't understand why my Dr. will give Hydocodone, Oxycodone and Fentanyl, but nothing else, when there are safer meds available to try, but I also know the horror stories of close friends in different areas of the state who can barely get anything at all from their doctors. It's just this state, it's insane.

Enough venting for today. Trying to stay positive and looking at the job loss as giving my system the rest it needs. Will soon be searching as to how to wean or taper myself down.
  #22  
Old 29-10-2013, 04:33
raronhia raronhia is offline
Silver Member
 
Join Date: 12-10-2013
Male from United States
Posts: 35
raronhia is an unknown quantity at this point
Points: 36, Level: 1 Points: 36, Level: 1 Points: 36, Level: 1
Activity: 0.4% Activity: 0.4% Activity: 0.4%
Re: Long term use of fentanyl causing this?

Maybe this will help I to suffer from chronic pain and on some good meds. Because of my injuries I took Physical Therapy and was able to use the pool. while in there an older guy comes in he was about 60's We talked about my pain and he said smoke pot. every problem mentioned the cure was smoke pot. I don't endorse pot, but that it was funny a 60 yr old pot head. things that make you go hmm. lol
  #23  
Old 04-11-2013, 04:26
jewitch jewitch is offline
Silver Member
 
Join Date: 08-08-2013
Female from Canada
Posts: 47
jewitch is a decent psychonaut.
Points: 62, Level: 1 Points: 62, Level: 1 Points: 62, Level: 1
Activity: 0% Activity: 0% Activity: 0%
Re: Long term use of fentanyl causing this?

since my last post i have reduced my meds to 2 75mcg/h patches worn in tandem, on a 36 hr spread to keep a steady dose, changing the patches every three days, 36 hrs apart. i have further reduced, despite my doctors orders not to...i have been folding the patches under or cutting them ( ratiopharm brand, ok to cut) so i am now on about 52 mcg/hr give or take.
my doctor is wonderful. he gives me whatever i ask for, no questions asked. he figures i know my health better than anyone. plus i go to a private pay as you go pain clinic in victoria bc canada. i find that the doctors there are much happier with the pay, and treat us like real live human beings instead of just a number. when i mention online studies he is very interested in them.
due to lack of body fat which stores the fentanyl, i find the patches just don't work as well as when i had more meat on my bones. when i change 1 patch every 36 hrs, i feel better, less up and down yo-yoing.
the strangest thing that is happening now is i am getting these little crystal like stones/rocks under my skin. at first i thought i had glass slivers in my hands. so i picked them out with a sewing needle and checked them out under a 60x scope i bought to examine my medical weed i grow under exemption. the 'rocks' are whitish to clear in colour and have some sharp edges. i noticed a few posts of others with similar issues /side effects from long term use. is anyone else experiencing this?
to the person thinking about using or switching to methadone, my advice is don't. once you switch you will forever be treated like a junkie by hospital staff when using emergency. when i have had mri's and eeg's and breast exams i have been berated by staff, saying i was taking the place of a more worthy person... the pharmacy staff treated me like a thief, watching me when i was shopping as if i was going to steal the store blind!! at times i took up to 180 mls in 4 sep doses each day...has to be taken every 6 hrs for pain. methadone is not a good pain killer. long term use rots the stomach, kills the kidneys and liver and causes bowel disease to advance.
when i went to emerg with a split oesophagus, they put me on a guernsey in the hall and left me to vomit and dry heave for 48 hrs before my doctor came. only after he threatened to sue them did they change their tune towards me. i could hear them telling my doctor i was just a junkie detoxing when he lost it on them! now they treat me totally different, because i am no longer on methadone. personally i wouldn't recommend it.
if you are not on 2 patches at one time separated by 36 hrs, you are constantly going up and down on the levels of available meds in your system, and more than likely going through some detox on third day and when changing it often takes hrs before it begins to work. one patch is not enough. if two patches are too much you can always split the dose. instead of say one 100 mcg/h patch, you could use 2 50 mcg/hr patches and keep the stream of meds more steady. it works better this way.
plus quitting methadone i would say is far far far worse than any other opiate inc fentanyl. even with the 2 100 mcg/hr patches, i still went through methadone withdrawals. they are more intense that iv morphine and last for up to 6 months of extreme hell.
i had a cancer specialist tell me to use methadone, he never told me it was for addicts and i would be labelled one if i used it.
good luck, just my two cents.
  #24  
Old 11-11-2013, 19:17
ikcaj ikcaj is offline
Newbie
 
Join Date: 02-11-2011
Female from United States
Posts: 49
ikcaj is an unknown quantity at this point
Points: 65, Level: 1 Points: 65, Level: 1 Points: 65, Level: 1
Activity: 0.7% Activity: 0.7% Activity: 0.7%
Re: Long term use of fentanyl causing this?

After my last round of lab results showed elevated white counts, I was put on Levaquin. After about two days I started feeling more like myself again. I still noticed a dramatic drop in Fentanyl levels on the third day, but adding an old patch helped. My doctor will not even discuss changing the patch more frequently. He is determined that the pain is due to not having had injections in a year and for the low, low price of only $800 in convenient, twice monthly payments he'll give me the injections. (What part of I LOST MY JOB because I"M SICK does he not understand?!). My job was actually nice enough to offer me some part-time work whenever I feel able so I worked 15 hours last week. I felt great on Thursday and my young child and I were making plans for the long weekend. Instead I slept through the entire thing. I kept a log and out of 63 hours I slept for 52 of them. That's not counting today's sleep.

One thing that really stands out at me is that I finished the levaquine on Tuesday, so I'm anxious to get new white counts and see if they are elevated again. I don't know if Fentanyl is causing this but I'm quite certain it can't be helping. My brain is so foggy and I was never good at math anyway, so I don't really know how to taper down using the approach where you change patches more often, without running out of the patches. Does that make sense? I've read a lot of people lower the dose, by folding or cutting patches, then add a new patch at the dose at 36 or 48 hours, so they are getting an even amount of the lowered dose overall. I only get 5 75mcg patches every 15 days, so how would I do that? I don't want to even discuss it with my doctor because I guarantee you he'd take me off of them completely before he'd taper down.

(This is the same guy who jumped me from 10mg Hydro/APAP to 10mg Oxy/APAP to 50mcg Fent to 75 mcg in the course of 18 months.. I didn't know anything about opiate use until I started on the Fentanyl, I just knew I was in pain and I was happy he was giving me something. It took me six months to convince him the Oxy was making me crazy!)

Right now localized pain, at least consciously, isn't really that much of an issue. Instead I have weird, flu-like pain all over my body. The first day I went back to work, for four hours, I came home and noticed everything hurt, from my feet to where my bra band was to my earlobes from wearing earrings.

Another thing, I had some of my Provigil, (modafinal), which I have to use sparingly due to the cost. The days I felt the best last week were when I was a) taking the levaquin, b) taking the Provigil and c) the first day after putting on a new patch.

Since this thing started, Provigil does nothing for me if I'm tired. I can go right back to sleep after taking one. It's only if I'm already up and just feeling a bit groggy that it helps.
  #25  
Old 18-11-2013, 04:59
raronhia raronhia is offline
Silver Member
 
Join Date: 12-10-2013
Male from United States
Posts: 35
raronhia is an unknown quantity at this point
Points: 36, Level: 1 Points: 36, Level: 1 Points: 36, Level: 1
Activity: 0.4% Activity: 0.4% Activity: 0.4%
Re: Long term use of fentanyl causing this?

Do you notice yawning a lot more to and the ability to sleep for hours and hours even days if you let it. One of biggest side effects of drugs and fentanyl no different is dependence. You may not look for it to get high but your body is. Look at the side effects of withdraw for drug dependency from Fentanyl and addictions. along with the long hours of sleep also a side effect of it. I notice its time to change my patch when I start sweating and over whelming feeling of sadness that s my body saying it wants more of the drug. hope this helps

Share this on:

Tags
antidepressant combinations, fentanyl, opiates, opiates and depression, side effects

Thread Tools


Similar Threads
Thread Thread Starter Forum Replies Last Post
Combinations - Heavy SSRI Use and MDMA Alfa Ecstasy & MDMA 24 03-08-2010 01:26
Side effects - How to cope with the long term effects of Opiod/Opiate Use? Panic_Upset Opiates & Opioids 5 08-01-2009 01:29
Long Term Ghb Abuse And Long Term Side Effects GHBFRYSYOURBRAIN GHB 5 30-12-2007 10:51

» New Threads
Methadone withdrawals is there...
Last post by Oberyn
2 Replies, 115 Views
Longest you've stayed up on a...
Last post by laron16
0 Replies, 1 Views
Greetings, and I'm kicking...
Last post by Oberyn
12 Replies, 578 Views
joint rubbed on live buds to...
Last post by al-k-mist
0 Replies, 1 Views
STS-135 Drug Info
Last post by Flybyhigh
25 Replies, 26,608 Views
How long does a gram last you?
Last post by BlitheChandler
37 Replies, 19,671 Views
Can Ibogaine Help Toronto Heroin...
Last post by natey7
1 Replies, 88 Views
Mixing Adderall with Wellbutrin
Last post by xglorifyx
0 Replies, 18 Views
Loved one is a recovering heroin...
Last post by megsy
24 Replies, 1,471 Views
FENTANYL - Questions and Answers
Last post by oldlady
40 Replies, 21,851 Views
» New Wiki Articles
GHB
NET

Sitelinks: Information:

All times are GMT +1. The time now is 03:35.


Copyright: SIN Foundation 2003 - 2014, All rights reserved