Well, today is day 4 of my new LDN treatment. My new doctor told me that the first three days I would feel nothing. That is very true. Then, he said, on the 4th day….BOOM! I would have a great pain reliever and less fatigue. Well, guess what? Nothing. This is why having chronic illness and chronic pain is so discouraging. It seems like all the treatment promises are worthless.
I did wonder if the hype was true. I did wonder if it would work for me. So far, nothing has worked for me. The CPAP didn’t give me more energy/less fatigue. The Cymbalta and Plaquenil have not given me less pain or fatigue. The Mast Cell drugs have not given me less reactions or rashes. The Metoprolol hasn’t stopped my heart palpitations or shortness of breath.
The Vitamin D hasn’t prevented my low D levels. The Vitamin B shots didn’t give me more energy. What is the deal? Am I broken beyond help? Who knows. But, I keep taking all this stuff until my new doctor can get some alternative treatment that actually helps me feel better.
Since I started taking LDN (low dose naltrexone) I’ve taken the time to read what people are saying about it in forums and have also read what foundations have said about it. Generally speaking, most people start at a much lower dose than me and very gradually increase the dose. My doctor mentioned this to me, but said he has better results with starting at 4mg.
Many things I’ve read online have said that results won’t be noticed before 1-2 weeks. I’m going to hang onto hope with this information. I can certainly wait that long to test this medication. Others online have said that it could be up to 6 months before the full effect is noticed. That sounds terrible.
I’ve tried many medications that make you wait 6 months before the results are noticed. This is so cruel! Every day with severe pain and fatigue is unbearable. When we as patients are given one false hope after another, waiting even one day is too cruel. Unless you live with these chronic conditions there is no way for you to understand. The never-ending carrot being dangled in front of our nose is cruel.
We need help. We need treatments. And, we need care. Real health care would bring about better research and treatment improvements for those of us who suffer chronically. Instead, chronic pain treatments are vilified and taken away from people who suffer from pain that prevents them from having any kind of functioning life.
I truly hope that the LDN will start to work. Living with less pain and fatigue seems like such a dream to me. It’s like one of those wonderful dreams that is only found when I’m in my deepest sleep and disappears when my alarm goes off. I reach out to grab my dream and poof….it’s gone.
@2020, copyright Lisa Ehrman
Disclaimer: I’m not a medical expert. Posts contain my opinions and are not meant to be taken as medical advice. If you have a medical concern, please consult your personal physician.
So glad to hear you aren’t going to give up on LDN yet! Your doctor was wrong to tell you to expect a certain reaction on a certain day – we are all so different! Also, recognize – as you noted here – that most people start at a much lower dose and 4 mg may be too high for you – you not ever feel better at that dose. LDN is very helpful to me at 3 mg but when I tried to go up to 4.5 mg, I felt much worse – I have it 10 days and went back down to 3 mg. Others I know have found that just 1.5 mg or 2 mg is their ideal dose. It almost always takes trial and error (and patience and persistence!) to find the right med/dose for you with ANY medication – first try is seldom the last one 🙂
Here’s more info on LDN to help guide you, including our own experiences – for starters, you might want to ask to start at a lower dose:
http://livewithcfs.blogspot.com/2014/08/low-dose-naltrexone-update-and-dosing.html
Good luck! I hope this one works for you!
Sue
So good to know all this and that it can be tricky to find the right dose. I’m going to read your post about dosing now 🙂
Oh, you also mentioned a failed trial of metropolol. Same with that! It;’s a beta blocker, and there are almost 40 of them available AND different doses for each one! That’s hundreds of different combinations to try before you give up 🙂
This post includes detailed tips on how to find just the right beta blocker (and right dose) for you – it is SO worth the effort. Treating OI (the source of those heart palpitations and many other symptoms, too) helps SO much with so many symptoms! Again, it;s worth the time and effort to keep trying – hope these tips help:
https://livewithcfs.blogspot.com/2019/01/challenges-in-treating-orthostatic.html
Sue
Thanks for the encouragement and info, Sue 🙂 I’m going to read this and see what to do next!