BTW, @JamieMarc I know I mentioned on some thread b ut don't remember where, that the doctor at the pain center put me on a low does of n altexone. I stopped taking it after a couple of weeks. I was having very intense headaches, waking up with them every morning, and they would last all day. I'm normally not a headache person at all. And, not sleeping well at all, having nightmares, and waking several times in the night. So I looked up the side effects (I nev er read them ahead of time, figuring that might just make them happen), and sure enough "vivid" dreams, sleep disturbances, and headaches are all common side effects. As soon as I stopped taking it, all those things went away within 36 hours.
So....no more of that!
@sunkacola can I ask were you prescribed naltexone from the pain clinic specifically for fibro pain? Also was it a 'full dose' as such?
I ask as it seems The USA may be prescribing the drug differently to the UK, where it is only approved by the NHS as a treatment for opioid or drug dependency.
It will not be prescribed for fibromyalgia or ME, despite some people reporting an improvement in symptoms when taking a low dose of naltexone. They have obtained the med from private practitioners. lots of these practices seem to be jumping up lately, and I can be a bit wary when this happens
It seems that ME associations in particular are willing to suggest low doses may be effective. I am due a pain clinic assessment in a few weeks and am hoping to have the chance to discuss meds options from the NHS pain point of view.
@SBee , yes, this was prescrib ed for fibromyalgia pain. I don't know what you mean by "full dose". That can mean a lot of different things. Apparently, from what I have been able to learn looking this up online, in its use for opioid addiction, it is usually prescribed at a dosage of 50mg.
The "low dose" version, which is prescribed for fibromyalgia, is usually 1.5 to 4.5 mg, and I was started at the lowest dose of 1.5. The idea was that if it did not help with the pain, the dosage would be increased.
But obviously since it not only had no effect on pain but also offered bad side effects for me, that won't be happening. Actually, it indirectly increased my pain levels because if I don't get enough sleep, my pain level will always go up.
Thank you @sunkacola Yes I wondering if you were on a low dosage which seems the norm when prescribed for fibromyalgia pain.
UK experiences show slight improvements in some cases of those obtaining the meds for this purpose, and particularly for those with ME. I cant find any references to actual clinical trials in UK for fibro\ME, the results I find so far are more on individual cases, although and interesting article showing a good response on an ME site. Chronic fatigue is a real problem for me.
I think we are all aware that as you found, the bad side effects of medications can bring symptoms up to a higher level and therefore needed to be stopped. I will bring the subject up at my appt, or with my GP on my next scheduled appt. Thanks
@sunkacola thank you for sharing this with me. I did want to know how the naltrexone was going to work for you. I have never tried it before myself.
All antidepressants I've ever tried have had the same side effects on me with the very vivid, surreal and disturbing dreams and waking up with suicidal thoughts. That's why I don't and will not ever take another antidepressant. Thankfully, I no longer suffer from MDD, so it's not an issue anyway.
Thank God you stopped. For me, side effects like those you mentioned are among the worst types. I'm sorry it didn't work, but now you know and can cross that off your list of medications you have tried.
@SBee I believe that naltrexone is approved here by the FDA for use in opioid withdrawal, and that using it for pain management is considered off label.
The United States allows physicians to prescribe medications for other uses off label. Although that is up to the individual doctor. Some doctors here would never consider a prescribing naltrexone for pain, but others would.
My clonazepam I take for anxiety and PTSD is a perfect example. It is approved for seizure disorders, but frequently used off label for anxiety.
Much the same as the UK then @JamieMarc with how it can be prescribed, at least from the NHS point.
I would be interested if anyone in the UK has managed to find an NHS dr willing to use their discretion and prescribe it for pain, or particularly for ME.
GPs here do sometimes go off license with regard to dosage and diverting away from the primary use of approved drugs too.
The oestrogen I take is licenced to 100mg, my GP took me up to the necessary 125 mg, and amitriptyline etc though of course originally designed for depression and anxiety, I take, like others, for fibromyalgia nerve pain benefits and (touch wood) works pretty well for me. Unless I have a flare and all hell breaks loose...
