Hi, I've been taken off of duloxetine as the side effects are to much for me. I'm seeing my doctor next week to discuss pain relief. I just wanted to know what other people are on and their experience please.
Pain relief
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I also went off the duloxetine due to side effects. It was the first medication I had taken in several years, and I only tried it because the pain level reached a point higher than I felt I could tolerate on a constant basis. I am back to managing my pain in other ways, not using medication at all, and it has subsided to a level I can manage.
I highly recommend experimenting with all of the many things you can do that do not involve taking regular medication at all. Most people with fibro will tell you that medications for pain tend to fall into one of two categories: those that don't work at all, or those which have side effects that are intolerable or that are addictive. No matter what you take, it often happens that you will need to take more in time, and then more, and that is a vicious cycle you want to avoid.
Tramadol works for people who take it, but it is an opiate and therefore highly addictive. Being addicted to a drug is very dangerous, not only because addiction itself is harmful but also because laws may change suddenly, or something else may happen that makes it impossible for you to get the drug, or as much of it as your body is addicted to, and then you are in deep trouble. Withdrawal can be fatal.
So, people here can tell you what they have taken or what they take, but I don't know how useful that information can be for you. for one thing, drugs affect everyone differently so what works for one person may very well have a different effect on you. For another, they all have side effects. If you have not already read my advice on ways to manage fibro without medication, I highly recommend you do so and start your experimentation with those things. Be dedicated and methodical and you have a good chance of finding things that will help enough with the pain that you won't need to take drugs at all. Best of luck, and let us know how it goes.
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I highly recommend experimenting with all of the many things you can do that do not involve taking regular medication at all. Most people with fibro will tell you that medications for pain tend to fall into one of two categories: those that don't work at all, or those which have side effects that are intolerable or that are addictive. No matter what you take, it often happens that you will need to take more in time, and then more, and that is a vicious cycle you want to avoid.
Tramadol works for people who take it, but it is an opiate and therefore highly addictive. Being addicted to a drug is very dangerous, not only because addiction itself is harmful but also because laws may change suddenly, or something else may happen that makes it impossible for you to get the drug, or as much of it as your body is addicted to, and then you are in deep trouble. Withdrawal can be fatal.
So, people here can tell you what they have taken or what they take, but I don't know how useful that information can be for you. for one thing, drugs affect everyone differently so what works for one person may very well have a different effect on you. For another, they all have side effects. If you have not already read my advice on ways to manage fibro without medication, I highly recommend you do so and start your experimentation with those things. Be dedicated and methodical and you have a good chance of finding things that will help enough with the pain that you won't need to take drugs at all. Best of luck, and let us know how it goes.
My advice for managing fibromyalgia (especially for newcomers)
I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...
www.fibromyalgiaforums.org
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No pain meds helped, most harmed me, also I prefer identifying and preventing triggers and alleviating as much pain as possible (which is most in my case) where and when it starts, esp. local pains with stretches, acupressure, massager and other specific techniques.
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Just to again emphasize: Nope, GABA is not a medication, it's an amino acid and neurotransmitter in our bodies, called Gamma Amino-Butyric Acid, and taking it as a supplement helpful for some of us like me to increase serotonin, which many of us are low in. It relaxes muscles, helps sleep, decreases cortisol and for me also histamine. And has much less side effects than any meds - if you need it and know how to dose it.
So it's confusing if we abbreviate gabapentin to that, capitals or not.
Gabapentin/Neurontin and pregabalin/Lyrica are synthetic derivatives that work very differently. Gabapentin has absolutely no evidence for fibro, but a lot of evidence for neuropathic pain, so that's where it can have its place.
Passiflora/passionflower also by the way works on the body's GABA-system. Since my sleep is now good ... if I keep to my protocol
... and my blood pressure is also normal to low at night, I'm going to switch my passiflora and magnolia bark to the daytime now, and try taking my GABA more in the daytime and less at night too, I've been taking 2g spread over the night and 1g in the daytime, now I'll try swapping that. The supps work quicker at the time of the day, whilst the med I've been given will reduce my BP at night even more which I don't need. These are also supps that are sposed to reduce pain, passiflora praps more indirectly than the other two. And GABA 100% eliminates my bladder pain as long as I get the dose right, which varies a bit.
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Thank you for that clarification. I was not aware of that.
What I meant by that was Gabapentin.
I started pregabalin this spring after a bad flare and quit my antidepressant (bupropion). I’m just up to the minimum effective dose now (100mg 3x daily) and it helps me a lot. Liquid b vits also help with energy for me. I take California Poppy tea or tincture when I need more relief and use heat packs and baths extensively.
Madrooster1964
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I'm somewhat confused. I saw my neurologist last week and he told me that Fibromyalgia does get worse over time - and added that there were no medications he could prescribe to offer me any pain relief - and that I had reached a point where I need to seriously look at stopping work to allow me exercise and rest whenever I could or needed to. Its contradictory to his initial suggestion that Amitriptyline might be beneficial (I was prescribed 25 mg daily) and whilst it hasn't provided any relief I was hoping that there were other things I could try (I also tried medicinal marijuana - CBD only as I need to be able to drive - but that didn't help either) He did say that money is being spent on trials etc for long Covid that look like producing treatments which may benefit Fibro sufferers as the symptoms are similar. I'm going to keep trying things mentioned on this forum and hope that something helps because I'm not ready to stop work.
johnsalmon
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sometimes a second opinion is a good idea
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Fibromyalgia does not necessarily get worse over time, and that doctor shouldn't have told you that. I have had fibro for many years now and it has not gotten worse. Some periods of time are worse than others, some are not as bad, and that is how it goes for almost everyone.
As a person ages, the functioning of the body does tend to diminish somewhat in various ways just due to age, and because of that it can seem that fibro gets worse when a person gets older. But that is a function of age, not of fibro being progressive.
Fibro symptoms can also get worse in a person who does nothing to help themself. A person who doesn't try to keep moving and who becomes sedentary will start to lose functioning in their body and then some will blame that on the fibro and say it is getting worse, but it wouldn't have gotten worse if that person kept getting exercise. ditto with other things that will cause poor health like drinking alcohol regularly, eating a poor diet, and so on.
It is also not true that no medications will help with fibro pain. It sounds to me as if this doctor doesn't know what they are talking about and it would be best to get a different one.
What is true is that there's no medication that works for everyone with fibro. For some people, nothing helps. For others, there's something that helps all the time, long-term. for others, something helps at first but then stops working either in a few weeks or a few months. For others, the only things that help are things that have either bad side effects or else are addictive and therefore not useful as long-term solutions.
The only thing that really helps, and that helps everyone who really works at it, is to do your own experimentation. Identify triggers and avoid them. Reduce stress drastically. Experiment with diet to see if any changes there help. Experiment with medications, if you choose to do so, but don't stick with any that don't help within a month or that have unpleasant side effects. Avoid taking any medication that is addictive, such as opioids, unless it is only for very occasional use. Experiment with alternative therapies such as acupuncture, massage, PT, supplements, and so on to the degree you are able to afford to do so.
Long Covid and fibro are drastically different things and only have a few symptoms in common, so it seems unlikely to me that a treatment for long covid would help with fibro......but, hey, you never know. What it important is to do your best to stay positive as much as you can and keep trying different things. And don't believe everything that any one doctor tells you because there are very few experts in fibromyalgia and most doctors will talk as if they know what they are talking about whether or not they know anything about it.
You say you are going to keep trying, and that is the best thing you can do. Don't stop, don't give up. Don't expect magic, but don't give up. We are here to support you in that effort, Madrooster.
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Hiya,
Here (
click on 'here') I've listed 13 reasons why our symptoms can become progressively worse despite fibromyalgia not being a progressive condition. If it's possible to work on all these 13 reasons we can stop it from worsening. All the rest he said is a legitimate medical opinion. If amitriptyline didn't do what he hoped at that dose, I think it's understandable to doubt that others will, altho some people like to try others like duloxetine and pregabalin too, despite all studies saying meds don't help much if at all.If you don't want to stop work completely at the moment and believe you won't crash big time, like I did
, you might find things mentioned on the forum that will help you adjust how you work.Cort Johnson (healthrising) also puts his hopes on the post-CoV/-vac research. I agree to doubt it, but there's possibilities that what they try out may help certain symptoms or may not help that, but help us instead.
Some MCAS-experts also believe all these might be one big MCAS-soup, but that to me doesn't make it easier at all.
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Hi Roch, it's not possible for someone to respond to this without knowing what drug you are referring to. Please be specific.
As for anxiety, many people with fibro do experience anxiety but it is not something that is actually caused by fibro, rather it is something that seems to be common in people who develop it. The exception would be if a person develops an anxiety about not being able to do what they used to be able to do, or becomes afraid that the fibro will get worse, so something like that, in which case that mental state needs to be addressed so that it doesn't continue or get worse and cause stress, which in turn will increase the pain of the fibro.
"Crappy" is a general term, hard to know what you mean by that - depressed? tired? lethargic? Again, being specific will get you answers, being vague will not.
Madrooster1964
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Thanks Guys - I've made an appointment with my local doctor to get a referral to a another neurologist - and discuss other possible drugs to try. Anything opioid based seems to help but I refuse to take them ongoing because of the addiction potential. I've also got a session with a pain psychologist tomorrow so will be interested in their opinion/advice and will happily explore that ongoing.
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