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07-26-2016, 10:57 PM | #1 | ||
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Junior Member
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hi there
I have been trying LDN for pain. I have severe neuropathic pain and fibromyalgia. The first time I started at 1.5 milligrams and had no problems with the medication. I started to sleep better and I had a reduction in headaches. I then doubled the dose to 3 milligrams and my body exploded with pain. It felt neuropathic and reminded me how I felt coming off an opiate a while back. I should mention I'm on no opiates now but was for 2.5 years. I stopped immediately and had a break. I then began at .5mg and slowly increased the dose by .5mg every 10 days. Last night I increased to 1.5. Again I'm experiencing pain so severe that I think I will have to stop. This is very upsetting for me, my neuropathic pain has been largely treatment resistant and this was the last drug available to me in New Zealand. I don't really know what to do and I guess I wondered if anyone else has had an experience like mine. All the research that I have seen has not mentioned anything like this. If anyone could help I'd really appreciate it. I had such high hopes for this medication. Last edited by indigo; 07-26-2016 at 11:36 PM. |
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"Thanks for this!" says: | ger715 (08-01-2016) |
07-26-2016, 11:42 PM | #2 | |||
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Grand Magnate
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I don't live with chronic pain so have no personal experiences to share.
You might find this article, which discusses the possible benefits and risks of LDN, helpful The use of low-dose naltrexone (LDN) as a novel anti-inflammatory treatment for chronic pain,
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07-28-2016, 08:00 AM | #3 | |||
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Member
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LDN has helped my pain quite a bit. I've been on 2.5 mg nightly for almost a year. The symptoms you have with LDN are not typical, but what I've seen casually on my LDN groups is that more is not necessarily better.
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07-28-2016, 02:32 PM | #4 | ||
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Member
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Hi indigo
I was going to PM this link to you but I'll post it here as others may find it useful. Drug Combo May Improve Care for Fibromyalgia | Psych Central News |
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07-29-2016, 02:48 PM | #5 | ||
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N/A
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I tried LDN for 6 months hoping to avoid hip replacement. I never got beyond .5mg and it never helped me. But the LDN yahoo group kept rooting for me to stick with it. So I did since hip surgery was a dreaded thought for me. It ended up a dreaded botch.
Anyway not long ago I read or heard that it works for folks with auto immune issues like MS, RA etc. So that's my 2cents on my trying LDN. I so wish my sister with MS would have gone with it, she might be better off today...my thinking. I have a local friend here who takes LDN and her MS is stable. |
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"Thanks for this!" says: | indigo (07-29-2016) |
07-29-2016, 04:55 PM | #6 | ||
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N/A
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Another few comments on the Fibro. I was given the FM dx in 1999 when I was working long and hard to my thyroid supported. I think the Fibro issue is so much sluggish thyroid, regardless of what a patient's NUMBERS are. This was my history. I finally got on Armour in 2002 after strugging since 1991. So when I was given the DX of FM in 1999 I had no had thyroid supported. So my system was very weak and the FM trauma hit me hard.
So what has worked for me with the Fibro are the following: 1. Getting thyroid supported. 2. MSM powder for pain reduction. I now take 2 tsps in water up to 3 times per day. We were just talking about the MSM issue on the DMSO group I'm an active member of. Many use MSM in higher quantity for pain reduction. Many of us use DMSO diluted with distilled water for topical pain use. I add drops of clove oil to my DMSO as clove oils help pain reduction. 3. For the viral issue I have been taking Olive Leaf Extract for a number of years to keep viral loads down. I chose not to take a pharma anti viral due mostly to cost way back. Viral load meaning EBV -- but I have heard from another MD that many many walk about with EBV load. To this day I still take 500mg OLE most days. So these 3 are my greatest helpers. Whether I have FM or not, who knows...I just feel so much for many needs to be addressed. |
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"Thanks for this!" says: | indigo (07-30-2016) |
07-30-2016, 01:02 PM | #7 | |||
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Wisest Elder Ever
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What might be happening as you increase the dose, is that the naltrexone is displacing your own endorphins on their pain receptors. Hence the pain. People who have used opioids for a long time like you did, tend to generate more receptors too, and that may be a factor. I haven't see reports of return to normal receptors after opioid treatments, so I don't know how that would work either.
Naltrexone is used to do this in higher doses, for opioid addictions to counter receptor activity. People may vary genetically as to when the LDN dose affects them this way.
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08-01-2016, 02:48 AM | #8 | ||
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Junior Member
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Hi MrsD
Thanks for your thoughts about this. Does that mean you think people who have used opiates won't be able to use LDN for pain?? I haven't read that any where but my own experience looks like that might be the case. Do you have any thoughts about this?? Thanks |
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"Thanks for this!" says: | ger715 (08-01-2016) |
08-01-2016, 08:39 AM | #9 | |||
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Wisest Elder Ever
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I used to attend a medical pain conference once a year that lasted a whole day with many topics.
One year they provided a detailed update on the research for fibromyalgia patients. The gist was that it has been discovered that fibro patients make MORE endorphin molecules in response to pain, and that these sit on the receptors, and that is why opiates don't work well on fibro pain, because these endorphins (which are natural opiates) are blocking those receptors. Naltrexone is known to bump off opiates from receptors so it is that mechanism which could increase pain perception. The deal is that this theory is difficult to prove and even structuring a study for this is very difficult because it is occuring in the brain. So far researchers rely on clinical observations to understand what is happening. The fact that you have a ceiling...where when you use a certain higher dose, you experience more pain, suggests that the LDN is working to alter your receptor activity. The suggested theory is that LDN affects the immune expression in the brains of those taking it...this is an activity that wasn't known when the drug was developed. The usual dose of Naltrexone is 50mg a day or more. Compare that to LDN's dose. You'll see that something is happening at that very low LDN that is different than the high normal dose. Since everyone is different, and has a different experience with opiates, there will be different responses to LDN. The studies do not yet explain if people who used long term opiates, lose the extra receptors that resulted from that use, we just don't know all the answers to your questions yet. It has been suggested though that those extra receptors may explain why addicts have high rates of failure to kick their opiate habits. Many return to "using" after treatment ends. Much of the research is done on addiction treatment at this time. And while "addicts" are the main avenue of information learned about opioid receptors so far, there are many others who are not addicts, but have used opiates for years, and may show some similarities on the receptor level. There are many drugs in use today that ALTER receptors that they work on. SSRIs, and benzodiazepines are examples that show a habituation problem and require careful tapers, and have unpleasant withdrawal symptoms when removed. Opiates I think are just another form of this phenomenon.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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