Guest guest Posted June 15, 2003 Report Share Posted June 15, 2003 Wow, thanks for all the posts answering my testomony about LDN and how it helps me with fibromyalgia. Mark, if the prescription was writen for 4.5 mg please have your mom go back to the pharmacy and get the proper prescription. It doesn't hurt to start on that amount, but more is useless. If throughout the first month your mom has a feeling of being hyper or jittery have the dose decreased. It isn't a good idea to try to lower the dose herself, although the prescription " should work " from 4.5 to as low a dose as 1.75 mg. I would rather know what amount I was getting. Next, I noticed the first three nights I didn't sleep as well on 4.5 mg and for fibromyalgia deep sleep is the utmost important thing. Even though I didn't get the deep sleep those three nights I didn't ache nearly as much the next day. A plus!! By day 3 the depression from chronic pain sort of went away. I quit taking trazodone, an anti-depressant at night by night 4 without any side effects of withdrawal. In fact, I didn't want anything but the Restoril which I till take at night for the Stage IV deep sleep. By the end of 7 nights on LDN I woke up without pain and stiffness. To this day I feel so much better in the mornings. I think I am getting the deep sleep because I feel more refreshed than I used to. LDN does not help with acute pain, like when I sprained my ankle. When that happened I also fell down. So the ankle pain was acute and as bad as normal pain would be. I also fell down and that in itself would have caused a whole body pain flare, but with LDN my total body pain never really happened. I was a little sore, but NOT in an acute flare. My ankle is taking the usual time to heal. Hopefully your mom should feel some improvement within a week. It may not be very apparent at first. I read that we should give it at least three months for the body to get regulated on this drug. In my case it was within 3 days to notice good improvement. Another sign that it is helping is that she should experience more energy. That chronic fatigue should let up. Since starting the LDN I have been able to stop taking three drugs, Neurontin, Trazodone, and the horrible Ultram. The Ultram caused highs and lows and pain was worse when it wore off. I had to stop taking Ultram 2 1/2 weeks before starting Naltrexone. Be sure that your mom is not on any opioids, such as Tylenol with codeine or Ultram. All of this must be out of her system before starting LDN. There is the slow-release LDN! Contrary to what others may say. My Pharmacist found out that there is....so make sure you have the fast- acting prescription. Slow-release is not for any of us in low doses!! Our body makes enkephalin and dynorphin, natural endorphins. LDN is a booster to these natural hormones which are natural pain PERCEPTION blockers. This is really hard to describe if you don't understand the body's chemisty and the physiological aspects as well as anatomy, but trust that it works in our brains to put pain in it's proper perspecive. It is known that with fibromyalgia, the sufferer can experience many things such as noise as pain. Yes, we think noise causes pain!! (Our brain pattern perception to some stimuli.) It is hard to put that down on paper without sounding " nuts. " The LDN should be taken between 9 p.m. and 3 a.m. It is in the deep sleep in which our bodies should be doing the job of building and repairing, and restoring our muscle tears from daily activities, and also build up our normal endorphins. People with fibromyalgia have trouble in that area, we don't build and repair normally. I cannot say how it is with MS and other diseases because my resaerch has been mostly with my own illness and I have 20 years of experience looking for RELIEF. My jitters (a feeling of hyperactivity) kept up all month until I changed to 3 mg. I can go up or down but I have decided to stay at 3 mg for the next few months. On the 4.5 I took long walks which eased that up but I didn't like the feeling when I wasn't moving around. I hope this helps your mom as much as it is helping me. The LDN Web site states that people with primary fibromyalgia should get 95% pain relief. If some have chronic fatigue syndrome it is only 50% relief. If someone has both--I don't know what the percentage may be. But to me 50% is better than none. I would say I am getting about 60 to 90 percent of pain relief. I still get muscle spasms in my neck and shoulders from doing too much at times. It is O.K. to take a muscle relaxant and something like Baclofen or aspirin on LDN. Stay way from morphines, codeine, etc. Endorphins are made in the hypothalamus and a few other parts of the brain and acts on opioid receptors, too complicated to state here. Let us know if this is helping your mother. I believe the main thing is: Don't give up. Quote Link to comment Share on other sites More sharing options...
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