I have received messages from many of you asking how my personal "experiment" with low dose naltrexone (LDN) is going. I apologize for waiting this long to respond, but to be honest, I wanted to wait until I had something positive (or at least neutral) to report. With the summer winding down, I felt like many of the plants in my garden look after all those months of intense heat - tired, wilted and faded - the MS fatigue was back in full force.
I tried having a positive attitude. That didn't help. I tried complaining to anyone who would listen, including whining in my newsletter. That didn't help, either (and one reader sent me a message that basically said that I was a big baby and that I disgusted her, which REALLY didn't help). I tried cutting out sugar, eating more sugar, messing with my caffeine intake, sleeping more, sleeping less, napping, not napping... Nothing, nothing, nothing helped. For three weeks I felt like I did before I started the LDN, scared and desperate and downright exhausted, mentally and physically (and, needless to say, emotionally).
However, I stuck with the LDN, staying steady with my dose of 4.5 mg nightly at 9:30 pm.
Then I remembered that when I first started the LDN, a little exercise in the morning seemed to prolong any good effects that I was getting from this medication. Feeling completely at the end of my rope, I went for a walk outside, since it is now cool enough to do this early in the morning. The results were amazing, in that I actually functioned and accomplished things until about 3:30 in the afternoon. For the sake of comparison, the day before, I had climbed back into bed at 8:00 am (2 hours after getting up) and stayed there until 11:30, until I got up and sat on the couch for most of the day.
I have been exercising like this (walking as briskly as I can for about 40 minutes) for about 10 days. I have had to take 3 days off and the difference is remarkable. Exercise buys me about 7 hours of "life."
I know that many people tout the importance of exercise for people with MS. My theory at the moment is that it helps prolong the effects of LDN by throwing more endorphins into circulation. Regardless, I'm convinced that it is important. I am also still a big fan of LDN and am pretty sure that I would have felt worse without it over the long summer. I'm excited to see what effects the cool weather will have on my exercise plus LDN recipe for success.
Has anyone else noticed anything similar in terms of exercise helping immensely, especially in those people on LDN? Has anyone else had a "slump" while on LDN that they later emerged from (and what it might be attributed to)? Please share your experiences with the rest of us in the comments section below - thank you in advance from all of us who are trying to figure this out together.
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Yes, exercise helps greatly. I have also started 4-AP this year which has helped with my energy. On 4-AP i can walk with a cane not my walker.
Hi Julie, Have you thought about going back down to 3mg LDN?? Perhaps that dose was better for you. Some people find that 4.5 is too much. Did you notice yourself feeling worse after upping the dose?
I have been on ldn 4.5 since May – I have noticed a lot of things that are great but still have not experienced the epiphany of the heat not being a factor and still having a lot of issues walking – I was hoping this would help that. Given a lot of things that are much better, I have decided to stay on ldn despite the fact that the two things I wanted the worst have not improved. I work full-time and my most energy IS in the morning, so being able to exercise at all in the morning is not possible. I might try and see what it does for me on the weekends. I do not have energy issues, just strength problems – my leg gets completely trashed after about 5 hours but the rest of me still feels pretty good. Not sure what to make of any of this but if I could just get the walking thing going, I would not even mind the heat.
Julie,
First I would like to thank you for your clever “weekly reports” about our disease. About your last post, I must say that exercise plays a important role in my life after the diagnostics. It seems that after the exercise, what I try to do everyday, I became new. Less tired that in the beginning of the exercise. For example, yesterday,the day I take Avonex, I was feeling tired, my temperature even seems to reach 37Celsius. I was not good. Than I forced my self to go to the gym. After a 20min run and 50min at the gym I was new, with energy to go home, meet my family, take my weekly dose of Avonex and hava a good night of sleep. So I would like to tell you that. Exercise is very important to me living with MS. Thank you again and every wednesday you know a brazilian MSr will be reading your kind posts.
Jose.
I’m sorry and a little ashamed of the person who chastised Julie for expressing herself. Where can we go, if not here, to vent our frustrations & fears about our disease? Julie, of all people, (this is HER website after all) should have the benefit of many grateful readers to support her when she’s having a rough time. So – Julie, at least from this devoted follower & fellow MS’r – I am wishing you a blissfully comfortable Autumn. Take care….
Boo- hoo I have tried the LDN with no success. Stopped and even started again. I SO wanted to be a success story. My lesson this life is what is is, and MS sure makes it a challenge!!!
I don’t take LDN, but I do exercise as much as possible. When I’m feeling better, I exercise more, and when I’m feeling bad, I just stay at home and sleep. I haven’t noticed a correlation between more exercise and feeling better. I am in a study to research whether exercise prevents flares – so far, it seems like every other month has been a flare month.
I have noticed since my starting ldn that it is important for me to follow my alternative dr. recommendations on MS diet(no grains,dairy,sugar,caffeine,alcahol) and daily vitamin D supplementation(high quality). When I stray from the above, my MS symptoms flare.
All of my symptoms, with the exception of some eyesight damage, have faded away over the last 2 months on ldn. They clearly return only when I stray off diet.
In addition to MS, I also have Celiac Disease .
“Has anyone else noticed anything similar in terms of exercise helping immensely, especially in those people on LDN?”
Absolutely. The best case scenario is to roll out of bed and walk. I use a treadmill, so the outside weather cannot “talk me out it”. It really only takes 20-3- minutes of walking, but some days that seems like a huge task. I just know that without it, I feel tired earlier and pain levels are more noticeable.
“Has anyone else had a “slump” while on LDN that they later emerged from (and what it might be attributed to)?”
Yes – twice. One related, I think, to a fighting off a virus, and one related to getting out of the walking habit. I understand that exercise is desirable in general, but I think it has extra benefits with LDN – and I agree that it feels like a way to increase endorphin production.
Again, it doesn’t take much, and it really pays off. (Which is my morning mantra when I climb – or crawl – onto the treadmill.)
I’ve been on LDN for a little over a year. I don’t know if it’s helping but I am staying on it. I’ve seen incredible results in others. I too have found that exercise is important for anyone with MS. I exercise at least an hour 4 days a week and have found my energy levels are better when I exercise. I believe this is true for anyone with MS.
Recent information from Penn State indicates that naltrexone can build up in the body, leading to a
continuous opiate blockade, instead of the desired temporary blockade that leads to higher endorphins etc…
check out more click my name…
LDN4MS – I’ve been on ldn like I said since May – a lot of wonderful things working – no side effects (I liked the dreams – still get ‘em but I like them) and it is AFFORDABLE!!!!!!!!!!! without insurance!!!! But my question is this – I have taken it for almost 6 months – the walking thing – will that ever get better?
It was great to read about your experiences LDN I have never taken it so I can not say anything about it. But I have lost over 98 lbs. since April of 07. I have gotten my energy back to do a lot things that I was not able to do. I have had MS for over 40 yrs. now and can not take any of the new drugs. I do exercise every day on a stationary bike. I try to do at least 100 miles a day. I have worn out 10 bikes now. I wen to my Dr. yesterday for my yearly check up and gave blood, I will get my results on Friday. I would just like to say I really like getting your news letters and seeing and reading bout your day. I was to a MS support group meeting a couple of weeks ago and herd a report from the Dr, who works at Georgetown Hosp. at Washington Dc. on the new treatment for MS and the new drugs that are in the pipe line. So keep the good articles coming. If you have any questions please feel free to contact me and I will be glad to share with you. My skype:jamesoeck22368 or phone 815-493-6475
I’m not on LDN, but two things that noticeably help me are bike riding and yoga-it feels as if it is important to open up the hip area. I exercise in the evening and it pays off the next day.
Hi Julie, You really are brave for putting yourself out there and subject to whatever silly comments people may throw your way. I hope the fact that you are helping who-knows-how-many-people contributes to making it worthwhile. I have been on LDN for almost 3 months now and also had a slump after an unexpectedly stressful period. But I’m slowly getting back to the point where I originally saw great improvements. In doing some research, there may be a time period in which the TH1 and TH2 receptors shift more dramatically. This may contribute to not feeling your best for a week or two and then normalizing and feeling better again. Perhaps with your background, this may be of interest to you to explore? I am certainly no scientist, so have some trouble grasping exactly how the immune system is regulating itself. I know that low-dose naltrexone is helping me have a better quality of life, and I guess that is what matters most at this juncture.
Your suggestion on exercise prompts me to take advantage of my morning energy! It would be quite something to feel as good at 4pm as I do at 8am. I also understand that D-Phenylalanine helps maintain the endorphins throughout the day. I have not tried it yet but it is on the list.
Have a wonderful (and blissfully cool) fall…
Dear Kathryn, LDN is only one piece of the recovery. But if you really want to heal it takes some time and effort… Check out more by clicking my name
Greetings all, Been on LDN 4.5 for about 4 months and feel no difference when off or on it. So is staying the same bad or not? What does work is walking as much as possible. Had a BIG reminder, was in Sydney, Australia this past week and had to confront me walking – a lot, Sydney is a walking city so of course I had to walk
The first couple of days was hard and I did get sore yet I did feel muscles that I hadn’t used in a bit, forgot about and felt “oh yah . . . forgot about those”. First couple of days was hard to walk a few blocks but by the end of the week (after taking a Baclofin to ease stiffness) I was able to walk as many blocks as wanted and when I felt tired to go on, all it took was a few minutes rest and was good enough to go a few blocks more. It may not sound like much but I could walk the airport in which I hadn’t been able to do for a few years. For me exercise is good but walking is great – no more excuses for me, Nike was right – “Just Do It”
Thank you so much for your objective reporting on your LDN experiences. I have been on 4.5 mg daily since January 2007, and my improvements in my Primary Progressive MS seem to be very gradual and subtle in the short term, but dramatic in the long-term. I was using a cane quite a bit and have not touched it for over a year. There are other positive changes which I won’t go into at this point because my main reason for writing is to address exercise. I started an exercise program about 25 years ago that I named “No Excuses.” I set the goal very low — a minimum of walking 20 minutes per day. But the point is, there has always been no excuse for not exercising. I eventually increased the requirement to 30 minutes, then 40 and now it’s 50. I feel this exercise program has been critical to my health and overall well-being. Having to do something every single day — no matter what — is the key, I believe. Thanks for the opportunity to comment!
I think one of the best benefits of exercising with MS is that it improves the quality of sleep–which seems key to my energy level the next day.
I’m also curious if anyone has tried other meds to combat fatigue, such as ssri’s or provigil, though I guess that’s another issue.
Just started LDN 1.5mg. last week. Will go up to 3.0 later this week.
I walk at 5:30 am 5 days a week(week-ends off).Now that it is cool., its not bad.
I do notice a big difference when I walk vs when I stay in bed.
First I don’t take LDN. I only take Rebif but…
Exercise and MS. ABSOLUTELY. When I was diagnosed, I started a very aggressive exercise routine. I workout for over an hour every morning. Not an easy workout either, but a full out interval cardio and weight training sessions 5 days a week. It works WONDERS… I don’t exercise on the weekends and that is when my MS fatigue kicks in full force, but my body needs the rest on the weekends.
I rarely feel the fatigue on days I do my exercise. Now I have to tell you I do notice my symptoms increase as I do these workouts, but they soon disappear afterwards and I feel great for most of the day. I am a big believer that exercise will keep the exacerbations away. My body seems so much more healthy than it did before I started my exercise routines. I also lost 85 lbs over 8 months!
I have also noticed that the exercise does help with sleep. The days I exercise, sleep comes much easier and quicker compared to the weekends where I don’t.
Exercise makes me feel like I am in control over this MonSter. I know it isn’t true but it does feel good to be doing something about it.
Thanks so much for telling me about LDN. I’ve veeen on it about three months and I know what you mean about getting some exercise.
I have started taking it in the mornings which works a lot better for me. Just a suggestion.
Keep plugging!
sharon, author of “a sundog moment”
Hi Julie, I started LDN Apr.09 @ 3mg and found quite by surprise, I was less spastic and I was able to tolerate the heat venturing out to sit in the Sun. A fellow MSer of mine also on LDN was taking 4.5mg so I asked my neurologist to up my dosage to 4.5mg. I felt that my MS could only get better but as time passed I felt my spasticity was returning but more pronounced, my legs would violently shake & stick straight out. I now have gone back to 3mg. and thankfully no more spasms. What do they say “More is not necessarily better” or is it Less is more. Thanks for your Blog. Keep on keeping on………..Denise
I don’t have MS but my daughter does. I can appreciate you being sensitive to someone saying they have Alzheimer’s when they forget something. I tend to do that fairly frequently as I am getting more and more forgetful as I age. OFTEN times I cannot think of an ordinary word in a conversation. I am “guilty” (as you think it is insensitive) of frequently saying that but I don’t say it lightly, I say it with real fear and concern that I may having early signs of the disease. When I have mentioned it to doctors over the last 20 years they light-heartedly say that if I know I forget then I don’t have anything to worry about. That isn’t true since I have seen Alzheimer patients get very frustrated and SAY that they can’t remember. I suspect a lot of people say it, not light-heartedly, but rather in fact, with a heavy heart and fear and hope that by SAYING it, they are warding off the jinx of getting it.
First of all Julie I want to say thank you so much for the time and effort you are putting into your blog – I really appreciate it.
? Re-exercise – more often than not my legs are giving up when I walk even a short distance. Does anyone have any advice – should I try and rest when this happens and then continue on even if it is only for a few more metres or is it smarter to stop!
I have always been an exerciser and still exercise daily, some days longer than others. When starting my routine there is weakness and soreness but after a few stretches & pulls my muscles say thanks. By the time I’m done legs feel stronger and I feel better all over. Exercise will be a part of my life forever.
I’ve been on LDN for more than a year and half, and it really helps me a lot. I stopped using my cooling vest and cane immediately after I began the medication. I walk very fast and don’t show any physical sign of the disease.
My first obvious MS episode was in 1986, with increasing interference in the 1990s and 2000s leading to my diagnosis in summer 2008 (optic neuritis). I am on Copaxone and am sitting on a prescription for LDN but I have not decided whether to actually take it. I have been a lake/pool/ocean swimmer my entire life and I think that helped me function in the decades before I was diagnosed. Without realizing it I got more and more into ocean swimming as I was more and more affected by heat.
In the last 10-15 years fatigue has been an issue, and occasionally I take a day or 3 off of exercising and just lay on the couch after work, with energy only for breathing. And then I’ve learned I cannot wait to feel more energy for a swim or jog, instead I get in the water or out for a walk and not expect much of myself, but just move for as long as I can and then stop (with no guilt allowed). I always feel better although not necessarily more energetic, and day 2 is easier as I just follow the pattern and don’t need initiation energy. And so far that has ALWAYS gotten me out of the fatigue hole. I think of it this way, either there is some co-factor stored up in my cells that sap energy and only gets removed when I require something from my cells, or some co-factor isn’t getting made until the cells really call for it.
I figured this out over decades, and I can’t say I understand it, but it works almost like magic.
I cant beleieve that u got such a nasty email! I am really sorry to hear that. I think yr colum is great and I learn from it all the time!
Thanks