Opioid long term use and increased pain

[longtimer]

Hi - I was given Tramadol about 15 years ago and have been on it ever since. My fibro pain has dramatically worsened in the last 3 years and my doctor wants me to get off the drug because he says it can cause opioid-induced hyperalgesia - or increased pain. Has anyone else experienced this? or gone off opioids and found relief? I have already decreased my dose by half and it scares me to think how hard it will be to get off it all together...

 

[sunkacola]

Hi - I was given Tramadol about 15 years ago and have been on it ever since. My fibro pain has dramatically worsened in the last 3 years and my doctor wants me to get off the drug because he says it can cause opioid-induced hyperalgesia - or increased pain. Has anyone else experienced this? or gone off opioids and found relief? I have already decreased my dose by half and it scares me to think how hard it will be to get off it all together...

My experience and understanding is that regular opioid use can actually increase pain for some people. The other thing is that it may not actually increase pain in a given individual, but its effectiveness in a person may diminish with use and therefore it will seem as though the pain increases because the medication isn't working. Unfortunately this often leads to increases in the dosage, which in turn leads to physical dependence on the drug = addiction.
These things will of course vary greatly with different people.

I did take tramadol for a few years myself. It stopped being as effective as it was when I first started, so the dosage was increased. Then that dosage stopped working very well, and it was increased again. When that stopped working well (or, my pain increased, and I honestly cannot say which was happening), I decided that the whole path I was on was not one I wanted, and I stopped taking the tramadol and started looking for alternative ways to manage my pain.

That was what led me to the whole experimentation course I went on for about 2 years. And the result of that was finding out what kinds of things worked well for me and what did not, identifying triggers that I could then eliminate or avoid, and so on. I wrote a lot of stuff about that in the Advice post that is at the top of the General Discussion forum.

My best advice for you at this point is:
Make sure you stay in touch with your doctor about your experience as you go off the opiate. Report anything that seems unusual or the least bit scary. Now is not the time to be stoic or think something is not important enough to talk to your doctor about it.

Do your very best not to worry about how hard it will be. It might not be hard at all or only a little bit hard. For me, it was not hard. It varies a lot from person to person, and not everyone experiences withdrawal. I didn't have any trouble or withdrawal at all when I went off tramadol. Being anxious about it is very likely to make it a bad experience even if it wouldn't be otherwise.

Be kind to yourself and make sure you are eating very well and getting some exercise. If you have not already started doing the experimentation suggested in my Advice post, and if you have any interest in trying some things, now would be the best time to start. The experimentation can take your mind off the worries and something you try might be really helpful to reduce your pain.

And, keep in touch with us. We are all here to support you.

 

[JamieMarc]

I take tramadol, but have not been on it as long as you. My doctor never did prescribe the proper dose from the start, but that recently changed and I am on a more appropriate dose. However, and I strongly emphasize this in my case, my Tramadol is only one small part of my overall treatment plan and what I do for myself everyday.

I am happy that I have a doctor who is cautious about how much of any opioid she will prescribe, even despite her prescribing too low of a dose for me in the beginning. I would rather have a doctor who is cautious with opioids than one who is liberal. My doctor does have an upper limit that she will never exceed for Tramadol, and she only prescribes that to very few of her patients. I am not even close to that upper limit.

My theory is that some people come to rely too heavily upon pain medication, and therefore avoid doing all of the other things they should be doing to keep their joints, muscles, nerves etc as healthy as possible. I think that if we rely upon just a drug that merely blocks pain, and do nothing else, of course our fibromyalgia is going to get worse or at least feel worse because we are not caring for our bodies as we should. As I have said before, I believe the three foundational paths to healing involve activity, sleep and diet.

I'm not saying the original poster does not do anything else for his or her pain, but I personally know of people who rely on painkillers and essentially sit on their butt for the rest of the day. That is a certain recipe for declining health and disaster.

I have not been on tramadol as long as you have, as I said, so I cannot speak from personal experience yet. I have been on it for about 2 years. I have noticed that it seems sometimes not to be as effective as it was at first, which I was expecting. Tolerance is a real thing, and I was warned about it by my doctor. But my Tramadol does still help me, and I vary the dose everyday, not just to help prevent tolerance, but also because I believe in taking only what I need, no more no less.

I guess I would ask the original poster what else are you doing for your fibromyalgia? Other than Tramadol, how else are you treating your pain?

 

[longtimer]

Thank you for your answers - I've always been eating right, exercising and not drinking, or doing rec drugs - but I had spinal injury when I was a teen, and have had chronic pain for more than 25 years - since I turned 60 its been much worse. My doctor does care and I go to a special spinal health clinic where I am offered support. I also take several recommended supplements to support my health (my husband does a lot of research for me and I follow what is recommended on this board). I'm not on a high dose of any drug - and I've weaned myself off several over the years. I am taking Sunkola's advice to look positively on weaning off the drug rather than dreading it - even though my doctor warned me I can get the shakes, and other withdrawal symptoms during the process.

 

[JamieMarc]

Sunkacola is incredibly knowledgeable, and I am certain you can count on her advice as well as reach out to her anytime if you need help.

 

[johnsalmon]

Hi - I was given Tramadol about 15 years ago and have been on it ever since

this is a long time to be on it - and you will need to very careful coming off it -to be honest your doctor should have never left you on it for so long.
I take it but only when the pain is unbearable either fibromyalgia pain or spinal pain ( had major surgery done to my back back in the 70's) but I do not take it on a daily basis ie a packet may last me 650months to a year
your doctor should work out a withdrawal program for you and monitor it after 15 years it is not something you can do yourself safely

down here most doctors will no longer prescribe Oxycodone

 

[JAMIEWHITE21]

My experience and understanding is that regular opioid use can actually increase pain for some people. The other thing is that it may not actually increase pain in a given individual, but its effectiveness in a person may diminish with use and therefore it will seem as though the pain increases because the medication isn't working. Unfortunately this often leads to increases in the dosage, which in turn leads to physical dependence on the drug = addiction.
These things will of course vary greatly with different people.

I did take tramadol for a few years myself. It stopped being as effective as it was when I first started, so the dosage was increased. Then that dosage stopped working very well, and it was increased again. When that stopped working well (or, my pain increased, and I honestly cannot say which was happening), I decided that the whole path I was on was not one I wanted, and I stopped taking the tramadol and started looking for alternative ways to manage my pain.

That was what led me to the whole experimentation course I went on for about 2 years. And the result of that was finding out what kinds of things worked well for me and what did not, identifying triggers that I could then eliminate or avoid, and so on. I wrote a lot of stuff about that in the Advice post that is at the top of the General Discussion forum.

My best advice for you at this point is:
Make sure you stay in touch with your doctor about your experience as you go off the opiate. Report anything that seems unusual or the least bit scary. Now is not the time to be stoic or think something is not important enough to talk to your doctor about it.

Do your very best not to worry about how hard it will be. It might not be hard at all or only a little bit hard. For me, it was not hard. It varies a lot from person to person, and not everyone experiences withdrawal. I didn't have any trouble or withdrawal at all when I went off tramadol. Being anxious about it is very likely to make it a bad experience even if it wouldn't be otherwise.

Be kind to yourself and make sure you are eating very well and getting some exercise. If you have not already started doing the experimentation suggested in my Advice post, and if you have any interest in trying some things, now would be the best time to start. The experimentation can take your mind off the worries and something you try might be really helpful to reduce your pain.

And, keep in touch with us. We are all here to support you.

I am newly diagnosed. My doctor gave me 1800 gabapententen and 10/325 hydrocodone. If I didn’t take these I would be in so much pain in my rib area. My pain is my ribs. Wraps from near my spine to under my left breast and my knee. I’m trying to learn other ways to help my fibromyalgia. I’ve watched so many YouTube videos and I’m confused. I’m taking every vitamin I can. I’ve scheduled aquatic therapy. Am I missing anything? Idk which is worse the pain, the fatigue or the brain fog.

 

[sunkacola]

I am newly diagnosed. My doctor gave me 1800 gabapententen and 10/325 hydrocodone. If I didn’t take these I would be in so much pain in my rib area. My pain is my ribs. Wraps from near my spine to under my left breast and my knee. I’m trying to learn other ways to help my fibromyalgia. I’ve watched so many YouTube videos and I’m confused. I’m taking every vitamin I can. I’ve scheduled aquatic therapy. Am I missing anything? Idk which is worse the pain, the fatigue or the brain fog.

I am not going to say you are missing anything, but there are always more things that you can try.
Have you read my "Advice" post at the top of the General Discussion forum? That is basically a list of many things that you can try to see if they will be helpful to you. A lot of people have found that if they experiment with different things they will hit upon a combination of things that makes life more livable. No guarantees, of course, but I always think it's worth giving it a try.

Most people find that if they can learn the delicate balance between what they eat, their activity, their medications or supplements, and their personal mental attitudes and mental health techniques, they can improve life for themselves. It's not easy and unfortunately there's no one thing that works for everyone. But people here can tell you what worked or didn't work for them, and you can decide what you want to try.

Watching the videos on YouTube is guaranteed to confuse you. I am not saying they are bad....at least, not all of them. But they do contradict each other so how could you not be confused? It all comes down to what I just said: everyone is different. So the people who say "All you have to do is this!" or, "Cure your fibromyalgia by doing (or buying and taking or using) THIS!" are simply misguided at best and perhaps even scams at worst. If something seems to you like a thing you want to try, by all means do so. But if it doesn't work for you, you are not a failure. If it does, great. But that still doesn't mean it will work for everyone.

Any questions you may have about one thing or another, whatever it is, feel free to ask. Probably someone here will have tried it and maybe several people, and we can give you our opinions and what we have learned.

 

[AgeinBArk]

I haven't been through exactly what you're dealing with, but I've definitely had my own battles with pain management. Have you talked to your doctor about any other treatments or therapies that might help?

 

[JamieMarc]

d. I’m taking every vitamin I can.

Too many people are under the misconception that taking vitamin and mineral supplements are necessary and good. This is totally not the case!

The only time anyone should be taking a vitamin supplement is if they are deficient in that vitamin, as I am with vitamin D, or their doctor has prescribed higher doses of a particular vitamin then they would normally get from their diet in order to help with some disease.

It is always best to get your vitamins from the foods that you eat. Unless you eat a lot of junk food, you are probably getting sufficient quantities of vitamins.

The reason I am taking the time to write this and consider it so important is because some vitamins and high quantities can cause harm. Others not so much, but some of them can and do.

I strongly urge anyone taking vitamin supplements to stop throwing your money away, consult with your doctor and get tested if you have reason to believe you are deficient in a particular vitamin.

The same applies to all types of supplements. Some of them can do harm. Some of them can help. But just because something is so-called natural doesn't mean you should be taking concentrated amounts of it. There are hundreds of thousands of natural chemicals, probably millions, that aren't safe for human consumption or aren't safe for consumption in concentrated quantities.

Finally, it's also worth noting that supplements are not regulated by the FDA in the United States, so if you do have good reason to take any supplement, please be sure to do your research, consult with your doctor and make sure that you are getting a reputable brand.

 

[SBee]

I was so wary of taking excess vitamins and supplements and agree with @JamieMarc that they can cause harm. And can actually even contradict the effect of some medications we need to be on. St John's wort being a well known one. Vitamins, supplements and herbal remedies of required can do the world of good, but only used safely and under the right advice, and in the right circumstances. Even using essential oils should be used with research and knowledge, especially if they are to be used in the skin. Research, used safely these oils can benefit both physically and mentally\emotionally.

Blood tests show I am a bit low on Vitamin D, and B12, so a gp recommended I take extra. Also flax seed oil ( veggie so can't do fish oil supplements ) the only other thing take is evening primrose oil, for PMS for boob pain. Sorry if tmi there..

Just tread carefully before using something that may potentially harm.

 

[JamieMarc]

especially if they are to be used in the skin. Re

Thanks for adding this Sarah. Yeah I had forgotten to mention to be careful with anything topical as well.
This might be TMI or gross to some readers, but I have not used antiperspirant or deodorant for 30 or more years due to skin irritation. I have tried all brands, countless, and always the same bad results. Fortunately, I don't perspire a lot or excessively, and I've never been told I stink or smell bad or anything. Trust me, I do have friends who would let me know and I would welcome that. LOL. But also, I have always had this aversion to putting the chemicals in antiperspirants and deodorant on my skin for most of my life. It's not like I went into a great deal of research about it or anything, it has always just been uncomfortable for me to think that I would be putting this stuff on my skin for the rest of my life. Especially since in my case I don't consider it necessary. There's a reason why we have sweat glands in our armpits and most parts of our body. And if I'm going out on a date or someplace where I want to be at my best, I will put on some cologne or body spray. I don't have any issue with occasional usage. In fact, I have some favorites alone but I always keep in my bathroom cabinet.
But I digress. Topicals as well as consumables. Thanks again for reminding Us Sarah.

Blood tests show I am a bit low on Vitamin D, and B12, so a gp recommended I take extra. Also flax seed oil ( veggie so can't do fish oil supplements ) the only other thing take is evening primrose oil, for PMS for boob pain. Sorry if tmi there..

I take vitamin D as well, once a week 50,000 IU as prescribed by my doctor. It actually comes from the pharmacy.
What you said is definitely not TMI Sarah. Not unless somebody is squeamish about stuff like that. I'm certainly not. I think that in this form especially, fibromyalgia, since we are all affected in so many ways and in so many parts of our bodies, we should feel free and encourage to talk about anything. I personally would have no problem if I were having pain in my testicles bringing it up here in group. In the forum rather. I think it's only when things like that become sexualized that it can order on the inappropriate. Yeah, we like our jokes and that's cool. We need humor, even a little sex humor. As usual, I ramble...

 

[longtimer]

Hi everyone and thanks for your comments - I began weaning off the Tramadol 4 months ago and have another 4 months to go. The Canadian government started monitoring opioid use about a year ago, and started putting pressure on doctors to get their patients off them - it was clear to me that the drug was making my pain worse and adding other health issues that I didn't want to have to deal with. I went through a full work up on my lungs, heart, blood etc and I am healthy - just need to get off this drug.

It isn't easy getting off any drug - and it takes a lot of mental strength to get through the bad days. Once I get past the bad days the rest of the month is ok. I am aware I will still have pain when I get off it - I went on it for pain in the first place and the damage is still there. My doctor is conscientious and is a pain specialist and is monitoring me through this. My hope is to eventually be as drug free as possible and still have a full life - its all a balance, isn't it?

 

[SBee]

Hi @longtimer it's quite sobering to hear your experiences of opioid use,for what we all know in varying degrees, is a role of pain and debilitating symptoms. It appears from others that some drugs do give an initial relief but then the body (mind?) Gets used to the dose and then it needs to be continuously increased to offer the same relief.
I really wish you well in coming down slowly,then off of Tramadol. My only experience in weaning off a med was from an anti depressant where a dr gave me the wrong advise and I came off too suddenly rather than a gradual decrease.

Balance. It always seems to me to come down to this. For me when considering or trialling a new medication I try to see if the positive effects outweigh the negatives. Some meds I take are lifelong essentials that I can never come off, but others I try to see as a temporary drug that my hope is I can one day come off.
I really wish you well in what must be a very painful time mentally as well as physically

 

[Bob the Goalie]

Too many people are under the misconception that taking vitamin and mineral supplements are necessary and good. This is totally not the case!

The only time anyone should be taking a vitamin supplement is if they are deficient in that vitamin, as I am with vitamin D, or their doctor has prescribed higher doses of a particular vitamin then they would normally get from their diet in order to help with some disease.

It is always best to get your vitamins from the foods that you eat. Unless you eat a lot of junk food, you are probably getting sufficient quantities of vitamins.

The reason I am taking the time to write this and consider it so important is because some vitamins and high quantities can cause harm. Others not so much, but some of them can and do.

I strongly urge anyone taking vitamin supplements to stop throwing your money away, consult with your doctor and get tested if you have reason to believe you are deficient in a particular vitamin.

The same applies to all types of supplements. Some of them can do harm. Some of them can help. But just because something is so-called natural doesn't mean you should be taking concentrated amounts of it. There are hundreds of thousands of natural chemicals, probably millions, that aren't safe for human consumption or aren't safe for consumption in concentrated quantities.

Finally, it's also worth noting that supplements are not regulated by the FDA in the United States, so if you do have good reason to take any supplement, please be sure to do your research, consult with your doctor and make sure that you are getting a reputable brand.

JamieMarc, I am in complete agreement. Assuming a decent diet, buying and taking extra vitamins, iron, calcium, etc. Is a good way of peeing your money away... literally; it's a recipe for making expensive urine.