New Insights into ME/CFS and exercise intolerance and the medication Mestinon.
I wanted to share this with my ME/CFS readers. A couple of months ago I ran across this article and Youtube video. The article was about Dr. David Systrom and his research and study on exercise intolerance and ME/CFS. He explains the science behind why it happens better than anyone I've ever heard. In ME/CFS patients, he has found what they call “internal preload failure”. This is a a failure of the large veins in the lower half of the body to push blood back up to the right side of the heart, therefore causing POTS. Our bodies and muscles aren’t getting the proper amount of oxygen that is required to function, also causing issues in our mitochondria. Ultimately, our central problem is we have a malfunction in our autonomic nervous systems. This causes problems with everything our body does automatic, our breathing, body temperature, circulation, heart rate, urinary system, immune system and the list goes own. This explains our 500+ symptoms that we battle to live with on a daily basis. Dr. Systrom hasn't found a cure but he has found that the medication Mestinon has helped hundreds of his patients and in his article he explains why the medicine works.
In my case, when I would over exert myself, days later I would feel like I wasn't getting any oxygen to my body. I would have air hunger and severe sleep apnea. I was breathing but where was it going? My fingernail beds would turn cyanotic. After reading this article, I pushed for my doctors to let me try this medicine. I have now been on it for almost two months. I'm not cured but I have improved so much. I've been able to exert myself more without the severe crashes. I will expect the crashes to come but they don't. I am also in a remission phase of my illness. All of this could change tomorrow and I could go back downhill but for today the Mestinon is working along with pacing and staying within my energy envelope.
I'm not a person who likes to take medications so I tried to do everything natural in the beginning. However, my illness couldn’t be controlled naturally and I ended up resorting to taking medications so I could participate in life. I also have POTS and fibromyalgia, so my heart rate shoots up 50 extra beats when I stand. Nothing I did naturally, helped my heart rate. I drank 80 ounces of gatorade with water a day and increased my salt intake, all of which I still do, but it doesn’t control my POTS alone. I've had to resort to also taking Verapamil and Mestinon which has helped me tremendously. I also take Celebrex daily for pain and inflammation from the fibromyalgia. The celebrex helps me and anything that I can do that decreases the inflammation in my body, including my diet, has helped me a lot. I am currently on a gluten free and dairy free diet, only because it seems to have helped and it also seems to be keeping inflammation down in my body. I'm also taking vitamin D, iron and vitamin B12 injections. The reason I am taking these is only because they showed up low in my lab work.
I don't know if anyone else deals with this or not but I also get repeat urinary tract infections and have interstitial cystitis. The one thing that helps me control that is to take a nightly benadryl. Mast cell activation can cause interstitial cystitis and taking an antihistamine can help control that. A lot of people with ME/CFS also have mast cell activation.
I'm hoping that once I've improved to where I want to be that I can, hopefully, decrease the medications and see how my body reacts. I have decided that I would rather take medications and have a quality of life with my family while I'm on this earth than to lay here and not take any medications and be in extreme suffering with no quality of life whatsoever (God can use medicines to heal us too). No two people are the same and what worked for me may not work for you.
My ME/CFS didn't start with a virus like most peoples do. A chiropractic neck adjustment is what triggered my ME/CFS, POTS and fibromyalgia. I had what they call a “toxic reaction” to the adjustment. That night I woke up vomiting, chilling, fever and my spine was tingling and burning. The next morning I couldn’t stand without my heart rate shooting up. I couldn’t even walk to the bathroom. I couldn’t eat for weeks and would get headaches in the back of my head and I had severe nausea. I was told that most people recover from this “toxic reaction” in a couple of weeks but I didn’t. This was where my journey with me/cfs, pots and fibromyalgia started. I was completely healthy before that day. I had only missed two sick days of work in fours years prior to this. Since the day of the chiropractor adjustment I have been sick and that has been two years now. My life changed in one day. I want to share my life and what has helped me in hopes that it may help you. I have been where you are.
I posted the links to the article and to the YouTube video below. I hope you guys find something in it that helps your specific case. This isn't medical advice, this is only my experience and my opinions. Praying for you and your family. Feel free to share what has helped you or what you think about the article.
Here's the link to the article:
Here's the youtube video:
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*Disclaimer: Any health information that is given on this blog is for informational purposes only and should not be used as medical advice. You should always consult with your Doctor or Mental Health Provider before making any changes to your diet, medications, supplements or exercise routine.