I Couldn’t Stay Awake With Lupus Fatigue Until I Did This
Lupus fatigue. Reading those two words remind me of the worst times of my life. I can vividly remember the first year of my journey with Lupus where I couldn’t even walk from the couch to the kitchen to eat because I was so exhausted!
My aunt who was in her 60’s was healthier than me. She took care of me and brought me soup and a blanket so that I could relax and hopefully recover faster. The irony.
“What did I do to get here?” I thought to myself.
I did nothing. I was breathing and awake. That’s what brought exhaustion into my life.
I was about to embark on a long journey of learning how Lupus effects me and what to watch out for so I don’t prolong a flare-up. That took a year and a half and I’m grateful it didn’t take even longer.
For many, it takes years because our symptoms keep changing and we add that to our list of things to pay attention to if we remember(eye roll emoji).
Then, my next goal was to learn how to prevent daily Lupus fatigue or the dreaded Lupus exhaustion.
Since our body is a synergistic system, meaning it works better together to function optimally, we have to take a combination approach in order for our body to work at its best.
That’s why you see those who use integrative and functional medicine as their treatments for Lupus have better health as compared to those who use conventional methods. Conventional methods focus on only one system at a time and Lupus affects all different organ systems, so that treatment doesn’t make sense to start.
My conventional medicine (CM) doctors were skeptical, unlike my functional medicine (FM) doctor, but the CM doctors are very supportive now as they’ve seen how I’ve gone from constantly sick with many crappy symptoms to managing Lupus much better than most.
That includes NO EXHAUSTION or FATIGUE!
That’s not a typo, I’ll write it again. NO EXHAUSTION, NO FATIGUE every single day.
When I say exhaustion, if you have Lupus you know what I mean. If you don’t, you never want to know what it feels like to wake up and brush your teeth and take a shower to then have to take 5 breaks in-between because you get tired. So, what should take 45 min maximum to get ready was a 3-hour ordeal! Lord almighty. I don’t miss those days.
Are you still saying to yourself something like:
- “Just “x” more hours of work”
- ” I wish I wasn’t exhausted all time”
- ” I can’t miss out on any more functions”
- “I’m sick of my barely living my life”
- “I’m sick of Lupus taking over”
If you’re in the boat I was, then keep reading. You don’t want to miss out on these details.
The details of how to stop being so exhausted and affected by Lupus fatigue is below. All you need to do is muster up more confidence to take control of your health. I’ll be here to support you, let’s continue this journey together.
That’s the only way we can get ahead with our treatment plans; A strong community, preventing symptoms and having confidence in our ability to do so.
Guess what, I know you can do it. Don’t fear the unknown, it’s not well known by you, but my life along with hundreds of thousands is a testament that it can be done and it’s not hard work. It’s harder to modify everything in your life because of Lupus.
What Is Lupus Fatigue?
50-90% of people with lupus identify fatigue as one of their primary symptoms. That is an insane number of people to have fatigue daily. Of those, I wonder how many have figured out how to prevent it?!
What Causes Daily Fatigue in Lupus:
According to Lupus Research Alliance, “the severe fatigue of lupus seems to be caused by many factors including disease activity, anxiety disorders, sleep disturbances, vitamin D deficiency, and low levels of exercise.”
How can we possibly exercise when we’re exhausted?! That’s the last thing that I want to do. It’s a catch -22 situation.
Anxiety disorders are usually connected to the fact that we have Lupus and it’s a lot to deal with. We worry about independence, the constant pain, suffering, and fatigue. Of course, we’ll have mental health issues.
Sleep disturbances are common due to the pain, the meds, and life in general. But, all of these will be fixed with my suggestions below.
Also, to address Vitamin D deficiency, that’s another easy fix if you take the right type of supplements. More to come on that!
What I’m going to tell you will fix all of the above and no, it’s not too good to be true. Our body works as a synergistic system, so there is no one pill that stops everything. If someone says so, question them.
Disease activity is almost always constant because our body’s immune system is too tired from the confusion of its job (to protect us from foreign invaders). Not only that, our cells don’t have enough energy to carry out complete tasks. So, messages are not getting from the brain to the immune system (our gut microbiome) and vis-versa.
And then, more messages are being blatantly not sent because our immune system thinks it has worse issues going on. It’s like survival of the fittest in there, except it forgot what it needs to do to survive properly.
Our body’s cells are not functioning optimally. If it can’t function at its optimal level, it can’t prevent Lupus fatigue or any other Lupus symptoms from occurring.
Once I figured out how our body actually works by combining my degree in health sciences (which is the hardest degree ever) and hundreds of hours of research and mentorship, I’ve figured out so many Lupus Life Hacks.
My doctor’s advice was not enough, in fact, the only advice I had was to take the Rx that their pharmaceutical reps give them and to exercise. Those meds gave me more symptoms on top of dealing with Lupus. NO THANK YOU.
So, I stuck with Plaquenil and decided not to add any immunosuppressive drugs or nerve pain meds for my Fibromyalgia.
Instead of that scary route that I see everyone’s terrible journey on social media, I’ve learned through FM that we have more control over Lupus than we thought without terrible side effects!
We just have to give our body the nutrients it needs to work optimally!
The Game Changer
What I’m going to tell you is a game changer for my chronic fatigue. Plus, this combination has basically kept my Lupus under control so much that all of my doctors feel relieved it’s one less patient fighting to have their life back.
I take Acetyl-l-carnitine in rotations. I don’t take it every single month, but a couple of months at a time with a 2-3 month break in-between.
Acetyl-l-carnitine: (ALCAR) is produced in the brain, liver, and kidney. It facilitates fatty acid oxidation, enhances acetylcholine production and stimulates protein and membrane phospholipid synthesis.
Acetylcholine is a neurotransmitter that allows communication between your cells and your brain. Also, it controls the contraction of skeletal muscle, the muscle the moves your body as opposed to the muscles of your heart and digestive system. Acetylcholine is produced from the essential nutrient choline that you get from your diet.
About 8-12 servings a day is recommended to match what our body needs. That sounds like a lot of work. Plus, if we have digestive issues or food sensitivities, it makes it a lot harder to absorb and properly use these nutrients.
That’s why I chose this specific brand of Acetyl-l-carnitine.
If you want something to work and not waste time & money, we always hear “do it right the first time and we won’t be disappointed”. So, I choose specific brands that have high standards like me. My health comes first and so should yours!
No fillers, binders, or additives. Not only that, but they have therapeutic doses and source their ingredients ethically.
The problem is that most companies don’t list that they have fillers or binders, so you never know what you’re getting. Some big brands that we know have been caught lying to us too!
So, the products that I suggest have gone through my checklist to ensure they won’t harm us, but help us better than others!
Now, back to our cells and their needs.
Since your cells are powered by mitochondria and those mitochondria are lacking the proper energy needed to function correctly, it doesn’t do its job properly making you suffer physical symptoms.
Lupus causes the mitochondria in your cells to lose energy and breakdown and mitochondria are very sensitive to damage. So, it’s VERY important to take care of the power source of your cells.
What happens is, they run less efficiently and are prone to damage making chronic fatigue a common symptom of Lupus.
Acetyl-l-carnitine is essential for mitochondrial energy production. So, after about weeks of taking Acetyl-l-carnitine, I started to notice that I wasn’t tired at 11 am, 3 pm, and barely functioning at 8 pm. It was one of the best additions to my treatment plan and it’s now considered one of my “must-haves”.
Which brings me to my next best addition, 5-HTP.
In order to access the brain, chemicals and compounds will have to pass the blood-brain barrier, which allows chemicals to reach the brain. Therefore, you would need to take a supplement that can cross that barrier, like 5-HTP, in order to increase serotonin levels in the brain.
Endorphins are usually low in those with chronic conditions like Fibromyalgia, depression, Lupus, MS etc.
Endorphins work with neurotransmitters serotonin and dopamine as well as oxytocin. Serotonin and dopamine help with mood regulation (hence I’m a happier person to be around for such a chronic, painful condition).
5-HTP decreased feelings of anxiety that I had and stabilized my mood swings from Lupus.
But, if you’re currently on any anxiety meds, it’s suggested to review with a functional medicine doctor so that they can balance both. Meaning, you may be able to take less of the Rx and supplement with 5-HTP. It’s more effective, no crazy side effects, and a healthier alternative.
If you’d like to learn even more, click here to read the FAQs.
Low Dose Naltrexone
Lastly, the prescription Low Dose Naltrexone is apart of my daily routine. It has controlled most of my flare-ups from all 5 my autoimmune diseases, Lupus and the fatigue especially.
LDN makes you happier, have more controlled emotions, less chronic pain, nerve pain, and body-wide inflammation. Plus, it helps you have more energy throughout the day.
LDN works by “containing the fire ” of your immune system. It makes your immune system function better and become more reliable by the technique described below.
1. How LDN Functions In The Body/How It Affects The Body:
Low-dose Naltrexone is a strong opioid antagonist. This means if someone takes opioids it won’t reach the receptors they normally attach to because the LDN attached to it first, leaving the person unable to get high or feel any effects. It blocks opioids by attaching to opioid receptors without activating them. Now, you’re probably wondering if you’re in the hospital, can they give you pain meds and will they work?
Yes and no. They can’t give you opioid family drugs. They’ll have to give you strong pain meds like morphine. I’ve had this done and it works without severe side effects of morphine. I was completely coherent and in minimal pain, like a 3 out of 10.
2. What Are The “Side Effects”:
- Vivid, lucid dreams: I LOVE my dreams. I literally have experienced a low level of the movie Inception ( a dream within a dream). However, sometimes people can experience nightmares. If that happens, take it during the day to prevent it.
- Insomnia: This usually occurs in the beginning. This should go away. If not, you can take it in the morning, but it’s best at night. I take it in the afternoon now and am very happy with the results still.
- GI issues: mild upset stomach. So, a less severe symptom of Lupus.
3. How it’s Used As A Natural Treatment For Lupus:
It’s called Opioid-Induced Immune Modulation. Opioids are shown to alter the development, differentiation, and function of immune cells. Your bodies innate (natural) and adaptive systems are affected.
Oxytocin, the “love hormone” is released when bonding occurs. Therefore, by taking LDN, a modulator, it causes a domino effect of an increase in naturally producing chemicals like the dopamine, serotonin, and endorphins.
It helps prolong the secretion and production between 2 am – 4 am. Which is why it’s best to take it at night.
It’s a simple mechanism that is significant in treating chronic conditions with better safety, efficacy, and little cost.
5. How Much Is LDN, Where To Get It, and Who Can Prescribe It:
The cost ranges from $25-$85 (ish) for a 3 MONTH supply in the USA and Canada. There are various facilities in the US that can compound this drug. All you need is your doctor to call it into a pharmacy that will compound the medication. Any DO, MD, NP, PA, can prescribe it. Now that LDN is getting more attention in conventional medical practices, the FDA is working with pharmaceutical companies to create a brand name variance of it.
However, save your money and stick with functional medical doctors for the cheap, compounded version.
Since our body functions through a system approach, we have to take a combination approach in order for our body to work at its best potential.
That’s why you see those who use integrative and functional medicine as their treatments for Lupus have better health as compared to those who use conventional methods.
Conventional methods focus on only one system at a time and Lupus affects all different organ systems, so the treatment doesn’t make sense to start.
- Share this blog on your favorite social media site to help spread the word on healthier and more reliable alternatives for Lupus fatigue
- use the hashtag #lupuslifehacks
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If this is all new to you, check out a few of my other blogs to learn more on the differences and functions behind different medical practices. All are needed in moderation, don’t forget that!
Leave a comment below of what you practice for treating Lupus and how it has helped.