Edit: added an update at the bottom to clarify what I was asking as I think some people missed what I was asking, plus a brief question at the top to make it a bit clearer
Anyone else here extra tired all the time due to the opiate medication they are on for the pain? And possibly more so those that have chronic fatigue as well like myself?
Just trying to find out how you cope and any tips.
My story;
I have chronic pain and am currently on fentanyl patches which have been the only pain killer to do a thing for the pain. I also have chronic fatigue and have always been tired all the time but it is much worse on the patches. I have had both for decades unfortunately.
The doc kept increasing the dose to get pain relief but as soon as I found a dose that helped the pain, the tiredness increased.
I started on various medication that did nothing, trying all available medication for pain and then went onto fentanyl patches and steadily increased the dose.
When I hit 50mcg after gradually increasing, I finally started having some pain relief but still got a pain where I had to lay down due to the severity on some days etc, but also got much more tired than before.
Later I then was put on 75mcg which had better pain relief but worse side effects including even more tired so I dropped down to 62mcg where I am now with still good pain killing but still very tired.
I am now super sleepy all the time, sleep a long time overnight and am still tired in the day. I can even nap a few hours after waking as I’m still so sleepy. I have 10-11 hours sleep a night and am crazy tired all day, even as soon as I wake up I am uber tired. Less sleep at night and I am even worse in the day.
I speak to my doctor every 2 weeks and he knows I am tired hence lowering my dose to 62.
How do people cope with this extra level of tiredness? I dropped down a dose but still the same and I know that even if I drop one dose lower I will still be otter but have more pain as that is where I was a while back before I was put on a higher dose.
The doctor told me that all opiates cause tiredness so switching to a different form such as morphine tablets would unlikely help, and that the patches have the least side effects.
He said I have to find a compromise between pain relief and the side effects such as the extra fatigue.
Anyone else similar to me? Tired all the time?
EDIT TO ADD:
I think some people missed the point of my post so added this bit just to clarify.
I am not here for medical advice, I have my doctor every 2 weeks for that.
I am just trying to see if there are others here with chronic fatigue and chronic pain that use opiates for pain relief that are extra tired all the time, or people that are just very tired all the time due to the opiates and finding out how they cope with the extra fatigue.
As I stated before I have tried everything before fentanyl, nothing even touched the pain before the fentanyl, this is literally the only thing that did anything at all for the pain.
I speak to my doctor every 2 weeks also as I have stated before so he knows where I am and any side effects I experience, so I am not asking here for medical information or medication suggestions I am literally only here to find people in a similar situation that have similar problems and what situation they are currently in.
I only want to see if there are others like me and how they cope.
Thanks in advance
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PainedAndConfused
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Yes, I am exactly like that. I have decided that I am,now, at a level, where, although the pain hasn't gone, I am prepared to accept a degree of pain in order to live. Like you, I was on opiates, which got me pain free, but I didn't know it, because I was sleeping all the time, so I gradually, reduced my Morphine to a level where, yes, it hurts, but I am awake most of the time. I do have times when I just drift off to sleep, even when talking to people, but nowhere near as much as I used to.
I never got pain free but I did get a lot more reduced pain on the 75, I am now down to 62 and still super sleepy.
The 50 patches is where the bad tiredness started but I was also still in pain most of the time, having to go to bed a lot and use extra painkillers etc.
Not sure if to drop back to 50 but I was still so tired on those too and in more pain so its hard to know what to do
Unfortunately the side effects of opiates is sleepiness. I find other painkillers make me sleepy too, so I take as little as possible of the opiates, my pain is not extreme just constant so any break from it is good. But flare ups are a different matter, think on occassions the mobility issues are worse than the pain for the moral. Must go have an MRI scan today, problems at our local hospital one of the biggest in the country but the MRI scan machine is not working so another hospital is trying to catch up on back log, with a portable one like the ones used for mammograms.
I have been on fentanyl patches for over 10 yrs don't worry every time you increase the dose you do get this terrible tiredness but it decreases with time and you will be able to function normally again I got the same but am perfectly fine I can't give you a time line because every body is different I think mine took about 6 weeks before it was bearable just go with flow you will get there all the best
So it might decrease a bit? I was increased to 50 about 8 weeks ago, then upped to 75 now down to 62 and the tiredness hasn't decreased in all that time. The extra tiredness came at 50 and hasn't reduced since.
So hard with the chronic fatigue as well as that seems to make it worse
To go up to 50 then 75 in such a short time is a very big increase 50 is a high dose I would be inclined to talk to your GP and stick at 50 until your body gets used to it do you take paracetamol with your patch it works well with fentanyl patches I take 2x500 four times a day I find it really helps hope this will be some help to you
I am on 62 now, 75 gave me other side effects. I didn't start on 50 and jump up, I was on lower doses for months, then increased to 50 which I was on for 4 weeks, then went to 75 and then down to 62 due to other side effects for weeks.
Doesn't matter anyway as I am not on 75 now and not going back due to other side effects.
Been on different doses of Fentanyl for months now but the excessive tiredness only kicked in at 50 and that's the thing that I struggle with the most.
I had tiredness on 50 and have had it on anything higher but I still had pain on the 50 also.
62 gives me a good amount of pain relief but this tiredness is driving me crazy.
Paracetamol does nothing for me, nor codeine, dihydrocodeine etc. I have morphine for breakthrough pain. Tried all other oral painkillers for breakthrough pain, I don't take anything else orally daily other than if I get breakthrough pain.
I'm so sorry I know how you feel I've been through it if 62 is making you comfortable stick with it your body will get used to it and the side effects should fade it's a big dose for your body to acclimatize to but it will in time
It is either really stick and see how I go like you say which makes sense to see if I can stand it longer term or go back down and supplement with other painkillers but if I am pretty much just as tired on the 50s as the 62 but more pain on the 50s, I guess it makes sense to stick and stay like you said.
Least I wouldn't need to supplement with other pills then.
It is horrible isn't.
You have to decide what level of tiredness is acceptable to the level of pain relief.
If only it was easier!
Hoping my tiredness goes down if I stick like yours did.
Thought so they are the generic cheap ones that the doctor is asked to supply everyone with they are rubbish with me they would not stick properly to my skin had big fight with my gp because he wouldn't give me the better ones had to change doctor the ones I am on are mazolar matrix they cost only a few pence more and my new Dr had no problem with me having them they are very good been almost pain free since I've been on them I strongly suggest you have a word with your gp it will save him money in the end because you won't be on such a high dose I'm sure this will really help you good luck
I really sympathise. I sometimes think the tiredness and sluggishness I feel is as bad as coping with pain. It is a balancing act with the painkillers and hope things improve for you.
I had the extra tiredness on the 50 patches but still pain often so I was put on 75 but that meant lots more side effects so went to 62 which is were I am know. Less of the side effects I had at 75 but still tired but also better pain relief that the 50.
It is hard to decide if to settle here and deal with the extra tiredness or drop back down but that was extra pain and still tired
Have you tried to drop down to 50, and add something else to make up the difference like Amitriptyline/Nortriptylene/Duloxetine etc., just something with a different base to reduce the cumulative side effect, but increase the cumulative pain relief. It may be worthwhile speaking to your doctor or pharmacist and see what they think.
Wow!! your response has just knocked me for six. If you are taking Fentanyl and you have breakthrough pain are you saying you take morphine pills? Yikes!! The morphine you are taking for breakthrough will go straight through to making you sleepy, and will not help your pain at all, because both morphine and fentanyl are opioids, and both will jump on the same receptors to tell your brain it doesn't hurt, but if there are no receptors available, because the fentanyl has already jumped on them , the morphine will just tell your body to go to sleep. I know I am not a doctor or pharmacist, but that is how these two drugs were explained to me when I first started looking at opioids to relieve my pain. I would certainly query it with your pharmacist and then depending on what advice he gives you, I would then question my GP or pain consultant.
I don’t touch the morphine as I would only take it if super bad. The doctor gave me both the patches and pills , in my support groups on fb many are on the same kind of thing.
My pain is very bad without the fentanyl, excruciating pain 24/7.
The tiredness is bad on just the fentanyl which is what my post is about. Constantly tired to the point I nap frequently.
I know how the drugs work and have researched fully. I haven’t taken any breakthrough meds since increasing from 50 as I haven’t needed to yet the tiredness is still there.
My point is I am extremely tired all the time on just the fentanyl plus the chronic fatigue and I just don’t know what to do.
I was trying to find out if anyone was similar and what they did to help it.
Okay that's fine, so I am suggesting that instead of taking something to stop the pain once it has started, take another drug (non-opioid) once a day, at night, to top up the fentanyl, so if they make you sleepy, that's fine it's night time so sleep. That should help you reduce the fentanyl and increase one or two other analgesia, hopefully resulting in some improvement.
But on a lower dose ie 50, I was still super sleepy all the time and patches lower than 50 that didn’t make me quite as tired had no effect on the pain
The thing is that non opiate pain killers do absolutely nothing for me due to the severity of the pain as I have tried pretty much all of them over the past year or so and they were as effective as skittles unfortunately, which is why I was given morphine pills for breakthrough pain which I haven’t needed on the 62 so haven’t taken any.
I have been working with my doc and pain clinic for a few years to get to this point and tried all non opiate things that are available for pain with no effect.
Jeeze..... I never thought that the patches could make my tiredness worse!
I use the Bupromorph patches 30mig per week.
I hardly take dihydrocodine any more say 2-3 tabs a day.
But i go to bed early... awake at say 9.00am Absolutley knackered, a real physical struggle to stay awake.
if i put my head down I could sleep for 3-6 hours easily.
In fact I have been soooo tired before I have slept for easily 18hours for three days in a row.. and still been knackered when I get up... It feels like ive been out all night drinking.
My eyes are always tired and heavy I could sleep anywhere.
Ive been to the doctors lots and lots of times... Last time the doctor said when you wake up in the morning have a strong coffee.... I tried that idea for a week.... still falling asleep all the time.
Its as if my batteries have been removed.... i can feel a lack of total uncotrol as I fall into a deep sleep.
I know Im tossing and turning all night to get comfortable but surely it cant just be that.
I tried buprenorphine patches before my fentanyl and they had horrible side effects but less tiredness than I have now. The tiredness is worse on fentanyl than those too which is awful.
Hope you don’t have to come onto fentanyl if you are tired on those, it’s awful
You could be taking too much pain relief, or it could be whatever illness you have is contributing towards your extreme tiredness. The best best is speaking to your doctor for advice.
With the best will in the world , just because lots of other people on Facebook are also taking a combination of opioid patches and pills doesn't automatically mean it's the right thing or a good thing.
I'm not saying it isn't either. Everyone is different. Everyone's condition is different, it is a judgement call. There is a massive opioid crisis going on because of poor over usage in the past because docs don't know how to adequately help patient manage their pain so some just keep giving different types of opioids without worrying about the side effects for patients which are only just starting to be understood in some cases.
It's not an exact science getting it right, I take fentanyl patches too, In my case it was to ensure I always have pain relief on my system as I am unable to swallow sometimes, which means I am without food or drink for days at a time. I also take tramadol but try not to take this all the time it's prescribed even when I can swallow, even though it means putting up with more pain. I accepted a long time ago I will always have pain.
If you have chronic pain, nothing will Take it all away as we know but it's then a case of playing the game of figuring out how many side effects we are willing to put up with in place of or instead of pain relief. I get enough tiredness with Neuro and other conditions and my meds probably add to that. I don't think it's as simple as putting it all down to the opioids. It may be in your case, but it may be a combination of things too.
Tiredness is frustrating. I've been stuck in bed since December largely as my wheelchair is broken and that is exhausting in itself!
Good luck with everything though and I hope things settle down a little so you can figure out your pain a little better somehow.
I know I have given up on doctors. And healthcare professionals.now. Unless I need antibiotics or respiratory meds, I don't trust them to be very knowledgeable about much more. Not many anyway!
Sorry I doing mean to come across all lecturing, I've just learnt, the best way is to try and take control of my own health and information about it, as a lot of docs are clueless and don't actually listen to what is being said to them properly.
I've had several gp's try to take me off of my patches this past year, so it is constant calls.with hospital explaining I have to remain on them.
once upon a time, gp's wouldn't mess with what consultants did, now they doing seem to have that same respect.
Also when we went to a pain clinic to look at my meds because again my GP wanted to get me off the the patches and another hospital doc had also put me on codeine. Not for pain but because it can manage bowel continence problems. Anyway, my daughter had already stopped me taking it because it was triggering asthma attacks, and she said this t ok the pain clinic doc,. He still said he was going to take me off this drug my daughter had already stopped giving me many weeks before . Both he and the gp who had referred me were reading off old irrelevant notes , a couple of years old notes! The only recent thing was several month old drug sheet!
if they don't listen and notes are inaccurate what is the point though. It seems I was only sent to him because the practice wanted to get more people off controlled drugs. Which again is fine if they are looking at them case by case, at who put them on them and the reasons why, and are they working for them and if not, are they credible alternatives? These questions don't seem to be being answered. Also if people have been on them for years, before they could test and find out what is causing them so much pain is it worth going back and looking if there is something else going on, autoimmune, or elsewhere in the body now there is a little more sophisticated medical knowledge avsilable. They can even map the people medical profile.now to get a better idea of there is something at DNA level causing some of our problems as they have done it with some babies recently. I know it sounds like in the sky stuff,but this test I think they said cost less than a 1000. Seems a small price to pay if they can finally figure out what is causing some people.health problems.It took about 15 years to diagnose 1 of my rare disorders and I still have doctors who won't accept it and put on my record its psychological despite a genetic confirmation and two other confirmed family members with it.
You get tired.of just fighting that!
Sorry, that's what tiredness does for me! It makes me go on a rant lol
Sorry I think you missed the point of my post, I added an edited part at the bottom of my initial post for clarity as I think I wrote so much I didn't make my post clear lol.
I am only using fentanyl patches right now as I said in my original post. Also as stated I have spoken to my doctor, and I do every 2 weeks.. My doctor knows how tired I am.
I am not here asking people on a forum for advice, I have my doctor every 2 weeks for that, I just want to find anyone similar with chronic fatigue and chronic pain that are on opiates to see how they cope and any tips from them.
Obviously everyone is different but not everyone has chronic fatigue plus chronic pain, those are the people I posted about in my first post that I am trying to find to see how they cope.
I have chronic fatigue and have for a few decades now, plus the patches with the obvious side effect of fatigue so both make me tired.
I have had the pain for a well over a decade now and the pain got to a point where I could not have no pain killers anymore and had to try something.
I know I will never be pain free and don't expect to.
I have been to many pain clinics over the years and nothing helped.
I have tried every medication under the sun for pain and fentanyl is the only thing that did anything at all for the pain.
Not sure why you said because people on a fb group take it its right? I am literally just on fentanyl patches as I said. I have morphine pills if I need them if the pain is bad as I tried everything else available with no effect, but as I stated before I haven't needed to since increasing off the 50s.
There is nothing I can use that I haven't tried that isn't a opiate. I have tried it all.
That is why I was trying to find people similar to me, maybe with chronic fatigue as well as chronic pain that suffer the extra effects of the fatigue of the patches and finding out how they cope with the extra tiredness and things like that from them.
Hey, I'm really sorry! Your right, I hadn't fully read the end of your post properly. Put it down to my own brain fog and fatigue. It sounds like you actually have a pretty good relationship with your doctor as well as you see him so regularly which is fab to hear and that there is understanding about finding balance between management of the pain and the fatigue, which is never an easy mix.
I know what you mean though , I was in so much pain before it was suggested I try fentanyl patches, but ironically it wasn't suggested as a better form of pain relief but purely because I couldn't take any medication at the time and and they hadn't got round to giving me a nasogastric tube at the time thankfully to take meds.that way (not something I'd recommend lol) it was the first pain relief I'd also had in a long while that actually made a difference. It felt like a wonder drug. It felt worth putting up with a bit more tiredness initially, plus I was in hospital for several weeks so I though it was just generally being more unwell making me more tired to start off with.
My daughter has ME as well as chronic pain caused by ehlios Danlos not to mention lots of other conditions so pain relief is pretty ineffective on her, even opioids don't work on her. She can sleep up to 20 hours a day in a bad phase, but still feel exhausted and she can't find the answer yet. Apart from trying to work out if something is causing the ME symptoms! She's 21 so determined to find another cause!
I hope you can get some helpful advice from people. I know my daughter says she gets annoyed when people try and tell her to pace herself, because she has to do what she can when she feels able to because she doesn't know when she is gonna get the next bit of energy from. She'll do as much as she can while she can, and then just collapse in a heap, and recuperate till she can do stuff again.
She is learning to manage things as much as she can and is starting a ou degree as she can that in her better moments.
Me on the other hand, my body clock is all over the place! I sleep when my body tell me to and wakes for a bit then crash out again, but I also have to contend with being dizzy all the time too which adds to the fun, plus the heat is making my tiredness worse at the moment. I used to get annoyed about it affecting my life so much now I've learnt to just give into it. If i need to sleep in the day because I'm so drained then so be it.sometimes I can barely lift my head of the pillow, it feels like flu, it's crazy! I can't change certain things in my life I can just change how I deal with them. That mantra is still a work in motion lol but I am trying to be positive about things however difficult they are.
Again, I am so sorry for misunderstanding your post, I really hope people can offer helpful advice.
I thought I understood fatigue with how I felt and even how my daughter was until her symptoms got really severe last year. We were both shocked at how quickly she deteriorated and how debilitating ME could become even though She had been diagnosed provisionally years ago so I would never presume to understand how someone is feeling when they say they have chronic fatigue , especially with chronic pain because they affect everyone differently but it always takes its toll, on that person and their family.
Anyway I'm rattling on again, probably because I came out of a Neuro episode a while ago and my brain is still on the Fritz a little bit heheheh. Anyway hope u made a little sense of my ramblings and I hope i didn't upset or offend u. That certainly wasn't my intention.
Night night
I'm dropping my tablet so definitely need sleep lol 😛 xxx
Yeah I finally found a doctor that is pretty good and seems to understand me.
The hard part is finding that point where you are happy with the amount of pain relief and the amount of tiredness.
Chronic fatigue is a pain in the butt lol, that and the opiate side effect is hard but it’s good pain relief so I just have to decide where to stick which is really tough.
And no need to apologise I just wrote a lot and didn’t make it super clear
Hi.im on Fentanyl patches as well.37-5mgs was on 50mgs but consultant said I should reduce and up gabapentin..I get so tired as well but other than come off the Fentanyl there is no other option for me as without it I'm in terrible pain and unable to function therefore I just have a nap mid morning and late afternoon.it works for me..I still have 8 hours sleep but disturbed because of other pain..I just have to cope as best I can..
Ive.given up on sleep for the minute. I'm so tired but it's just not happening tonight, go figure!
I would be lost without my patches to be honest. I couldn't believe what a difference They made. I was so lucky I had one amazing consultant in hospital who suggested them because I just thought the amount of pain unless I'm was a fact of life until then. The only annoying thing is i'm only on a small dose because the intention was to increase them them if I wanted to once they saw if they helped but I was so shocked that something helped at all ,I didn't want to push my luck and risk to many side effects of becoming too zombiefied on top of all my other problems at the time so I said I would leave it for a while and see how I got on.
Problem now is, when the pain is particularly bad and I can't take my tramadol so I want the docs to increase my patch, if I'm in hospital they say speak to my gp and if I'm at home my gp gives a lecture about the evils of opioids and then.says speak to my consultant of i feel I really need to increase it.Only problem being I've moved area so everyone passes the buck and I can't get the treatment with the only pain relief which really makes a difference.
I do think fentanyl is probably the medical professionals best kept secret where pain relief is concerned though! IT's the most effective one I've had .
The only other pain relief I would say that I think is massively under rated by people is paracetamol when given by Iv! When I'm in hospital and I have a migraine and a fever, if I haven't slept properly in days, if I get given that it knocks me out and I have a fantastic pain free sleep, it's worth a try!
Believe me, with having ehlios Danlos not much works on me but those two seem to help.
I had a awful time in radiology a few months ago where despite telling them I could feel everything They were doing to me They ignored me and just kept saying give her more sedation and pain relief and I was shouting out in pain he was sticking tubes in my stomach and bladder! He didn't want tO do tHe procedure and it was all about politics as if heard tHem tAlking in tHe corridor about being forced to do it ahead on his normal list! THat's fine but don't take it out on the patient! The pain has only just started to settle a little from that procedure and I have to go back in again soon so I want to make sure my pain levels.are gonna be ok first in case I'm unlucky enough to come near him again!
I take gabapentin too but it's weird ,I never think of it as a pain relief drug. I think it's because I was given it for the pins and needles sensation I get in my spine whenever I laugh, cough or a sudden move and it kind of taken my breath away, but not in a good way!
I must sooo be boring people tonight! I think this is what you call a distraction technique lol my watching tv isn't helping, it's stopping me going crazy as I can't settle to watch tv, read it go sleep it would seem so I'm boring you guys instead, I'm sorry🙊👻🐁I just like emoji 's too hehehe and you are all angels for listening well reading my inner ramblings so Thank you xxx and hugs 😇
Hi. I too have chronic back pain, (had spine fused nearly 20 yrs ago) and CFS as well as Fibromyalgia syndrome FMS. I am on fentanyl 50 patches as well as LYrica.for the pain. And two different antidepressants and Oramorph as a top up.
Like you, i can sleep for England....and some. I have had to give up working because i dont know how i will feel from one hour to the next....
What I have learned to do is say no i cant, and could you please help.... not that anyone likes it or listens.... it just doesnt get done otherwise..... learning to pace yourself and know your limits and most of all Not to feel guilty about it if you are too tired or in too much pain.
This may help you and it may not but could be worth a try sweetheart.
Yeah the thing is as soon as I open my eyes on a morning I am utterly exhausted and want to sleep. My brain doesn't work well due to how tired I am all the time.
I don't work right now but I will have to at some point due to the fact I haven't paid enough NI contributions to get a pension, that and I don't get any benefits due to NI contributions etc but that's another depressing story.
I do get helped in the house with stuff, but I can't do anything due to fatigue and its killing me. I can't keep my eyes open which I could before I went on a high strength dose, but before was lots more pain and I would be in tears with pain.
The thing is a few people suggested pacing myself, but just waking up and getting out of bed makes me tired and I will feel exhausted all day. Literally every second is me fighting with my eyelids to stay open
Feels like it is this or living in pain. I can't see I can have a bit of pain relief without the extra fatigue
I'm like you I am on fentanyl patches plus oramorph or diazepram to top up which I in the last month stopped using at certain times as then I can't stop sleeping. But I know this isn't everyone's cup of tea but it helps me 1. Doing chair yoga I found lots of videos on you tube. 2. Using a rub in from Body Shop called total energy, you can find it a lot cheaper on eBay
3. Coffee with syrup in
4. This I found out during my last stay in hospital is make sure your potassium, zinc, magnesium level are ok you probably need a blood test by gp but if you don't want to do that a very good vitamin mineral tablets will help.
5. The other thing I found out during my stay was having a protein rich drink. I have Nestle Meritene strength and vitality drinks you can get them from amazon or the chemist. There are other brands. Hope these help
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