LDN for Fibromyalgia

Dr. Brian Johnson received his MD from New York Medical College and has been practicing for more than 20 years. His research goal is to understand how opioids exert their effects. His team proposed a theory that suggests that fibromyalgia and opioid withdrawal (both of which cause much distress and disability and are difficult to treat) each involve a dysregulation of the opioid system: low opioid tone. Dr. Johnson tests this theory by treating both with low-dose naltrexone. Their theory suggests a novel approach that could improve the quality of life of patients suffering from these debilitating disorders.

Autoimmune diseases have a 3:1 female to male ratio. That's what fibromyalgia has. Autoimmune diseases run in families; fibromyalgia runs in families. It’s common that if someone has one autoimmune disease they will have a 2nd or 3rd autoimmune disease...and we are constantly finding Sjogren's syndrome, or lupus, or rheumatoid arthritis...something else that we know is an autoimmune disease (among fibromyalgia patients). And finally, if an autoimmune disease were striking the opioid receptors in the brain, we would get these symptoms that we get in opioid-addicted patients, and that’s exactly what we do see.

Fibromyalgia is like eternal heroin withdrawal. We see identical symptoms, although different names are used.

Fibromyalgia is like eternal heroin withdrawal. We see identical symptoms, although different names are used. We find the same lack of pain tolerance in both sets of patients. No one in heroin withdrawal can think straight; in fibromyalgia this is called “fibro fog.” People in heroin withdrawal have terrible gut symptoms; in fibromyalgia, it tends to be called “irritable bowel syndrome.”

Our pain medicine service had started to use LDN to fix the damaged opioid receptor systems of those addicted to opioids, and they noticed that LDN also seemed to fix the opioid receptors in our fibromyalgia patients. Since fibromyalgia occurs in people who have never been on opioids, it seemed to us that something must be causing the same damage to opioid receptors as opioid addiction...and that must be an autoimmune disease.

We know that opioid receptors are all over the body, they are in skin cells, in white blood cells, in the lining of your joints, as well as in your gut and your brain. If something systemic were attacking opioid receptors, we’d get exactly this set of symptoms that we see in fibromyalgia. We can’t prove it yet but it fits our model.

There are 2 different kinds of thinking- one that directly supports our thinking and one that indirectly does. There was a rheumatology publication about 2 years ago, that I actually reviewed when it was submitted, and their case series is essentially identical to ours...it showed low dose naltrexone helps. Indirectly, the other perspective is from the Stanford pain group and Dr. Younger…that fibromyalgia is due to inflammatory cytokines, interleukins, and tumor necrosis alpha, etc. These inflammatory cytokines and endogenous morphine are both co-regulated at the Toll-like receptor subgroup 4 on the glial cells. So, one way to say it is they have a hold of one side of the equation and we have a hold on the other, and they are complementary explanations. So yes, I believe a lot of people are coming to this conclusion.

When I first came to the State University of New York Upstate Medical University in 2008, I was given carte blanche to do research, which was a tremendous opportunity. I had been reading about the cold pressor test. It’s no more than an ice water bath at 1 degree Celsius with a circulating pump. You stick your forearm in and see how long you can keep it there. When you put your arm in, it really hurts. We simply time how long you can keep your arm in the ice water, and it is a proxy (a model) for central nervous system opioid receptor functioning.

We simply time how long you can keep your arm in the ice water, and it is a proxy (a model) for central nervous system opioid receptor functioning.

If you are not local to Syracuse, NY, this is something you can do at home with a beer cooler and ice water. You can follow your own CPT time as an objective measure of your response, in your own home.

The current treatment of fibromyalgia is bizarre.

While opioids are the #1 drug given for fibromyalgia, they just destroy the opioid receptor system even more, so you should scrupulously avoid them.

Taking opioids, as everyone knows by now, is the most dangerous thing ever. Your chances of getting addicted are 1 in 4, and it changes your brain. It “fixes” some of the fibromyalgia symptoms in a way that you wouldn’t want them fixed...depression and anxiety are symptoms of low opioid tone in your brain. If these symptoms are “fixed” with opioids, you start using opioids for psychological reasons, and that’s what leads to addiction. Now you’re “off to the races”...you’ll want to switch from doctors to drug dealers for your opioids...and then it becomes fatal. Don’t do that. While opioids are the #1 drug given for fibromyalgia, they just destroy the opioid receptor system even more, so you should scrupulously avoid them.

Antidepressants, like milnacipran which is FDA-approved for fibromyalgia, would only help if you had depression also. I don’t think they do anything for the pain. Also, if you are taking a certain class of antidepressants such as SSRIs, including milnacipran, it knocks out your sexual functioning, it makes the world dull, and it gives you a sense that you can’t really make emotional contact (which is a symptom of fibromyalgia, but it can be fixed by LDN or at least improved).

Anticonvulsants, like pregabalin, what do they do? They probably just make you “dull” and maybe you don’t notice the pain as much because you can’t think straight.

None of these treatments is specific. Of course, there are the pain doctors who do things like trigger point injections...so they’re treating a central nervous system disease by injecting something in your muscles…that’s the weirdest thing ever.

There’s nothing like LDN. It’s got virtually zero side effects, it’s incredibly cheap, and it’s the most effective thing there is.

LDN, on the other hand...I’ve probably given it, as a ballpark figure, to 1,000 people. There’s nothing like LDN. It’s got virtually zero side effects, it’s incredibly cheap, and it’s the most effective thing there is.

We’ve only had 2 women who had a bizarre side effect of swollen feet, which resolved when they stopped the LDN. Other than that, the only side effect we’ve seen is that if you go up too fast on the dose, since it's prompting your opioid receptor system to grow, you can feel like it’s causing withdrawal. So if you went 0.1mg, then 0.2mg, then 0.3mg each day, aiming for 4.5mg twice a day, and you started to get nauseous or anxious, you just go back to the dose where it didn’t bother you, and you take your time and you’ll eventually get up to 4.5mg. The fact that LDN bothered you (it made you feel like you were in heroin withdrawal) is actually a good sign; it means you’ve got a decimated receptor system and the LDN is likely to at least improve it. So you don’t lose faith, you just take your time.

If it was me…if I had fibromyalgia...I would only take LDN and nothing else.

We have found that it responds to blocking the opioid receptors with LDN. If it was me…if I had fibromyalgia...I would only take LDN and nothing else. Is it ever going to get FDA approved? No, because that’s a giant multi-million dollar effort that no drug company would be interested in pursuing because it’s a generic drug.

I care that the patients feel the best they can, given that they have a horrible autoimmune disease. That’s why I tailor the dose to each person.

I have no idea what dose is right for each person. You have to see what works best for you. It might have to do with body weight, but more likely it has to do with how damaged your receptors are. So you can experiment around, and different patients take different amounts. What do I care most about? I care that the patients feel the best they can, given that they have a horrible autoimmune disease. That’s why I tailor the dose to each person. It doesn’t make sense to give a one-size-fits all dose.

In terms of how much LDN to take and when, when we listened to our fibromyalgia patients, they reported, “LDN works great! I take it in the morning, but by 4:30 in the afternoon, it seems like it’s wearing off.” So, I said, “Why don’t you take another dose around 4pm?” They consistently report that twice-a-day dosing is better, so we tend to recommend patients with fibromyalgia work up to taking 4.5mg twice a day. But one patient says she wants to take it 3 times a day, and one guy says he prefers once a day. So, it’s a bit individual, and we just want people to do the best they can under the circumstances of having a bad autoimmune disease.

You guys at LDNscience are doing a great job- that’s what to do.

From my side as an academic, I publish all the articles I can, I speak at conferences, I’ve given grand rounds in rheumatology at SUNY Upstate four times now. One would think that if people discover new treatments, it would get tremendous research support, but the consistent feedback we get from well-prepared research proposals has been, “We’ve never heard of this. Who are these people?” so they tend to get rejected.

From the patient side of things, patients who are doing good internet research, including going to the LDNscience website, are going back to their practitioners and saying, “Come on, doctor, why don’t we try LDN? It seems to be the best drug out there.”

We at LDNscience thank you very much, Dr. Johnson, for your contribution of time and effort to increase understanding about low dose naltrexone.