Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
My concern is that right now with what I take (percocet & oxycontin) my TMJ pain is finally manageable, though still pretty significant every morning and excruciating 4-5 evenings a week. For me this is REALLY good pain coverage. So I'm a little concerned about losing some of that relief by giving up the oxycontin for the LDN. However, it leaves my (usually) secondary pain of FMS coming to the front, because without the TMJ pain I really feel the full effects of my hip, leg and foot pain, along with the fatigue. My pain brain also seems to be cleared a good amount due to the opioids, so that's good.
I've heard that nalt. helps with energy, but I am too afraid to stop the opoids or the Xyrem.
I had an appointment with my PMD today and told her that I am very interested in the LDN for my FMS pain, but that I'm concerned about giving up my OxyContin in order to use it. She had previously told me that I would still be able to keep my Percocet. To my surprise she told me that I would be able to take all three together! She basically said that the naltrexone would be such a small dose that it wouldn't completely block the receptors or cause any withdrawal symptoms.
I know that this contradicts a lot of what we see on the internet, including official websites. Here is a link to the article that I mentioned previously, which discusses naloxone as well as naltrexone for pain management - this article clearly backs up what she said about being able to take opioids and LDN together.
http://pain-topics.org/pdf/OpioidAntagonistsPPM2009.pdf
Hope that helps! I'm going to do a little more research, but I think next month I will ask her to prescribe it to me.
I bought a bracelet that tracks my steps and my light/deep sleep. It also wakes me during light sleep so that I feel better when I get up. Being awoken from deep sleep is dreadful. By waking up from light sleep and being sure to get enough sleep, yesterday I was able to walk 10,564 steps! Could NOT believe it. Best of all I woke up feeling great. In addition to the sleep I attribute it to the naltrexone.
The bracelet is called UP and it is made by Jawbone. I have NO association with the company, and there are other products out there that do the same thing.
IMHO your doctor should be shot. It's completely irresponsible to prescribe 50 mgs if you are taking any kind of narcotics. On mgs you even have to be careful of any OTC meds that contain alcohol or narcotics in any form.
I too am very eager to try this medication. I take Tylenol 3 for my pain, but not every day. And if it's true that I can still take it while on the lowest dosage of naltrexone, then I'm all in. I was going to call my doctor last month to make an appt to talk about it, but I got caught up in figuring out other issues. So much is always going on around here.
This medication has truly changed my life.
I also changed my diet to exclude dairy, gluten and soy, and had been sugar free for almost 2 yeas previous. There are some studies that suggest that the protein molecules(peptides) in these foods can interfere with the absorption of LDN, as the casein in diary products. Sugar can promote candida growth, and the candida is never good...especially when taking LDN.
If anyone is considering this medication, do your research as there are so many differing opinions out there. I found what has worked for me and am actually able to exercise again, and if I listen to my body, get back to doing some of the things that I thought were gone forever. I take a naproxen based pain med called Vimovo when I really overdo and need something, but am able to handle most pain with heating pads and movement.
All the best
I pay $110 for a 3 month supply from a compounding pharmacy. I should probably check out a cheaper place. This guy is about 35 miles away, but he mails it out.
I just don't know about LDN. I hoped it would be the answer, but I"m still in pain. I'll probably go back to taking motrin because nothing but tylenol doesn't do the trick. I had to stop anti-inflammatories because of the PRP injections. I'm just confused about it all.
An update on me. I am SO happy. This week I was able to walk over 10,000 steps one day, next day walked about 9,000 and then the next day was tired and had to cut back to 4000. But the next day did 8,000. No flare up
NOW comes the big test. I ran out of anti inflammatory meds . They have been prescribed for me by various doctors, initially an ortho. My GP only gave me another month's worth. Let's see if I can do without.
I also think the naltrexone works on my sleep. Sleep better. Rather, I am sleeping better and I don't know if it is the naltrexone directly, or indirectly because I am exercising more an d exercise and sleep are closely linked.