Article on chronic pain, long covid, opioids

Jemima

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Hi all,

Once again, The Guardian news site is representing! They've just launched a new article series called "The pain that can't be seen". The first piece focuses on recent chronic pain developments, quite a bit on fibro, and also touches on long Covid. Fascinatingly, it actually explains why Opioids are specifically more dangerous for fibromyalgia sufferers - as in likely to make pain worse in the long run - so that's eye-opening as well as aligning with advice from @sunkacola. I thought some of you here might find it interesting, as well as being able to enjoy the boost of what we deal with being so publicly recognised!

✊
 
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great! I am going to read it. thanks!
 
These articles banging on against opioids for chronic pain conditions like Fibromyalgia are just parroting what Public Health officials want everyone to believe about prescribed opioid usage: that they are bad. They are not. For some us, they are lifesaving. I use a little bit of Tramadol (synthetic opioid least likely to be abused). Typically just 1 (or half of 1) 50mg tablet in the morning with 200mg gabapentin. I also take amitriptyline (tiny bit 20mg/day) and a boatload of supplements. At night I take 300mg gabapentin and 0.75 mg Xanax (for sleep….nothing else works). I can go up to 2 (100 mg Tramadol in the morning) if I’m flaring badly. But mostly I get away with the the smallest dose. It seems to clear the morning pain and allow the gabapentin to work more effectively. Other opioids make me very sick and obliterate my appetite. So, Tramadol is the only one I can take. It is also considered one of the best (of all the types of opioids) for nerve pain. Without this medication, I’d be bed bound, in pain, crying, every freaking day. Before my docs dx me with Fibro and thought to try gabapentin, I was taking 200 mg (4 tabs) Tramadol per day. At the time, it was the ONLY thing that worked. In the last 2 months, because I was prescribed gabapentin, I’ve been able to reduce my usage of Tramadol by 75%. So many people need some form of opioid in their arsenal of meds. I’ve been reading extensively on this because of the guilt and stigma people get for admitting they take opioids. Even on this forum! There is a vested interest in American (and no doubt UK) public health officials getting opioids out of people’s hands because of people who abuse them illegally. The vast majority of people who’ve been prescribed these meds for chronic (not acute) conditions do not abuse them. Abusing them is what makes people feel they need more as time goes by to achieve pain control. Taking them as directed by a really good pain specialist prevents that. I view these articles as an attempt to remove very effective meds from people who could really benefit from them by propagandizing them through the news that they don’t work, that they will make things worse, that one will need more and more to control pain. False! I’m living proof that one can reduce their opioid use when multiple meds are used to eliminate or reduce pain. I really am ticked off by the subtext of so many stories about chronic pain and opioids, which is to guilt those who take these meds and vilify the docs who, thank God, will still prescribe them. The vast majority of folks taking opioids for chronic (not acute) pain are doing so responsibly.
 
The reason that so many articles mention opioids in a negative light in relation to fibromyalgia is that several studies have now connected treatment with opioids to worse long-term outcomes for fibromyalgia patients. This suggests a cautious approach - we may choose to take opioids to treat pain, but should be aware that this may increase our pain baseline and decrease our functionality over time, so there is an element of calculated risk. I don't know about you, but I'd rather be warned before making an informed decision!

I'll also add that I've seen friends through difficult tramadol withdrawal with absolutely zero abuse and specialist guidance throughout treatment, and it wasn't pretty. I'm so happy that Tramadol is helping you, but I don't think it's helpful to assume that while you found tapering off easy that this is always the case for others. It is certainly a medication that impacts people differently.

Again - a risk that some might feel is worthwhile, but it is always helpful to understand that risk before deciding how we personally want to move forwards. We each have autonomy to choose for ourselves, but that doesn't make other perspectives invalid, or scientific research unworthy of consideration. I'd say don't feel guilty one bit if what you're doing is working for you - that's fantastic - but perhaps consider that warnings about opioids are not intended as an attack on anyone, but rather a research-based caution!
 
Truly I say this with regret and experience of the NHS machine. Find other ways of dealing with the pain. All drugs have left a mark on my body.

I’m so tired of the pain that I have looked forward to the end for far too long. I’ve just had my 8th anniversary of being in a minimum of 6/10 and maximums of 9/10 in just the bowel area. These occurrences have affected my Fibromyalgia immensely. I’ve received absolutely no pain relief from any doctor whatsoever in the last 8 years.

So anyone thinks they are going to be better off with the drugs is nothing but a fool because if you bother to ask an immunologist they will tell you that cocktail drugs is going to give you more pain in the end as you destroy the second brain also know as your bowel.

Go ahead don’t take my word for it!

You have no idea what pain is until you suffer similar to what my bowel gives. I’d rather have gone through 4 world wars. I could have and likely would have dealt with that far better.

It cost me any life of living with a partner completely.

Drugs? Keep em!
 
The cautions against opioid use are not "propaganda". They are said because it is a fact that opioids are very dangerous drugs and many people's lives have been destroyed by them. As Jemima says, the words are cautionary, and cautioning about a genuine danger is never propaganda.

I would be interested in knowing where you get your statistics, such as:
The vast majority of people who’ve been prescribed these meds for chronic (not acute) conditions do not abuse them.
And: "The vast majority of folks taking opioids for chronic (not acute) pain are doing so responsibly."

How do you know this? Where did you get this information, and it is just your opinion or do you actually have a scientific study or actual statistics to back this up? Without some kind of backup to cite on this, the statement is not really useful.

It is very true that some people do not abuse tramadol. It is also true what Jemima says: people who don't abuse it still get addicted to it. Opioids are dangerous. If you can take a small amount daily and not have a problem, and that is your choice, no one should tell you you shouldn't do it. It is your choice, your body, your life. But you are taking a certain risk, and it is important for you to understand that.

It is also important to know that there are many other things a person can do to reduce the effects of fibromyalgia without taking harmful drugs. I always recommend that people start trying those things, experimenting with what they can do for themselves without relying on drugs and the doctors who prescribe them, because that can be greatly empowering and it can make the drugs unnecessary. It's also important because, as you know if you have been taking them, the use of opioids and the consequences have reduced the number of doctors who are permitted to prescribe then, and that number could be reduced again, or even cut off entirely, overnight. Without other things to rely on, a person depending on those drugs could end up in deep trouble.

I am not 100% opposed to using medication. I use it when I absolutely must. But for the most part it is in my opinion far better to take the care of your body into your own control and do the daily things you can do to increase your overall level of health rather than relying on medication daily.
 
Truly I say this with regret and experience of the NHS machine. Find other ways of dealing with the pain. All drugs have left a mark on my body.

I’m so tired of the pain that I have looked forward to the end for far too long. I’ve just had my 8th anniversary of being in a minimum of 6/10 and maximums of 9/10 in just the bowel area. These occurrences have affected my Fibromyalgia immensely. I’ve received absolutely no pain relief from any doctor whatsoever in the last 8 years.

So anyone thinks they are going to be better off with the drugs is nothing but a fool because if you bother to ask an immunologist they will tell you that cocktail drugs is going to give you more pain in the end as you destroy the second brain also know as your bowel.

Go ahead don’t take my word for it!

You have no idea what pain is until you suffer similar to what my bowel gives. I’d rather have gone through 4 world wars. I could have and likely would have dealt with that far better.

It cost me any life of living with a partner completely.

Drugs? Keep em!
I respect your opinions on this, Mr. Bee.
And each of us gets to make our own decisions on how we manage our bodies.
And we need to respect each other's opinions even when we disagree with them.

Sibergirl stated that she takes Tramadol and why. This is her choice, even if we do not think it is the best approach to rely on drugs.
However, for you to post that "anyone thinks they are going to be better off with the drugs is nothing but a fool" is a bit too harsh, and can be taken as a direct insult by Sibergirl, who doesn't deserve that.

It's important for us to be polite to one another here and not to be insulting or to speak harshly about another person's opinions or ways of doing things.
I am sure you can understand this.
All of us here have had enough insults and disbelief from the world at large, and we come here for understanding, support, and help, not to receive more hard words.
While your opinions are every bit as valuable as anyone else's, I must ask as a moderator that you please tone down the insulting speech and take care what you say in the future.
 
I’m gonna have a look at that in the week, no one ever offered me opioids I just take strong co codamols and gabapentin ( that has side effects too) but it’s just weighing up the pros and cons to see what’s worth it init?⚡🌟💫
 
Auriel, you're already taking an opioid! Cocodamol contains codeine and paracetamol. Condeine is an opioid.
 
Oh heck 🤪 it’s only really when I get bad girl cramps or migraines and they are quite strong so I’ve found I only really need about two, are there long term side effects then? Or shall I wait till I read the article, I’m not addicted to them though 🌺🌹🍁
 
Oh heck 🤪 it’s only really when I get bad girl cramps or migraines and they are quite strong so I’ve found I only really need about two, are there long term side effects then? Or shall I wait till I read the article, I’m not addicted to them though 🌺🌹🍁
Don't worry! If you took a lot every day, addiction would be a risk, but once in a while is no problem. Dependence can be an issue for some people with opioids, but that requires habitual use. Codeine is also quite a weak one in this drug family. No stress 😘
 
Ah, good stuff, they’re really not that delicious anyway + I’ve learned a new thing 😁
 
The problem is there's two sides you can fall off a horse. I haven't read above article yet, but from several documentaries & other articles etc. I've got the message that in some places patients and doc alike haven't been looking at less dangerous alternatives, it was coming to be normal to pop pills from pill mills like having a coffee. Changing legislation is trying to force both to think about more healthy ways of doing things, to look to prevent & alleviate triggers instead of suppressing symptoms. To all of these it first feels like taking a bottle from a baby. And because they were staring only at this there is now an empty spot where it used to be. In the UK they have tried to moderate this problem by not taking bottles from babies that have already got one, which is an understandable compromise. For many here there is no empty spot (any more) because we were all quickly forced to look at alternatives and met here to do so. As opposed to many who may seem to do fairly well on meds and even opioids, it was no fun for us to try them to say the least, and no fun that it's more complicated to find alternatives, so please @Sibergirl don't judge us too quickly for us having to be without, we aren't talking from the throne, we're in a sense talking from the dirt. And please don't judge us for trying to help ourselves, each other and others that it isn't an empty spot, that there are hundreds of other treatments to try. The mean thing about legislation is that docs and insurances are seeing that pill popping was fairly cheap and just changing the legislation is - here as usually - not enough: it's necessary to educate people and also make these other treatments more easily accessible in return.
Sibergirl, from what you are saying and doing, you do recognize the danger, you are taking the form of opioid that may be half an exception, and is thus being discussed (and praps still prescribed more easily?) in the UK. From what I've seen and read, I'd agree with sunkacola's questioning your conviction that abuse is rare. I've read differently and I know a few people who work with substance abusers. It's often those who don't/won't realize, understand, who haven't the possibilities to see alternatives or the means to get them. The legislation is designed to and trying to help people in the long run, not torture them, altho it's clear that it seems to be torturing in the short run. They are probably trying to keep some of the pain of it down in the UK, and I wish/hope they try to do it in the US.... But I know that the NHS is pretty ramshackle so I understand the unfairness and outcry there and I must stay I can't begin to grasp how badly insurance seems to work for in the US. Often legislation tries to do something good and has to spend a long time sweeping the damage together. But it's no bad magic or conspiracy that it works that bad, it's the sluggishness of politics and that's the sluggishness of people, plain human, so no workaround, or rather: it is The Workaround.
 
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