Healing the Brain
Inflammation of the Brain and Spinal Chord
They say he has Myalgic Encephalomyelitis. They say it’s an inflammation of the Brain and the Spinal Chord. They say it’s incurable, especially if it isn’t diagnosed within the first couple years. And then they lump it in with the yuppie flu commonly called Chronic Fatigue Syndrome. Well, CFS is nothing compared to ME.
What works for one won’t work for another. For the first 5 years, Rick was told to treat his issues as if they were IBS, even though it wasn’t. That meant lot’s of modern twists to a healthy lifestyle: Probiotics bought over the counter, High fiber diet, Low Carbohydrate, no carbohydrate, no white foods, no sugar, lot’s of vegetables… and ultimately an anti-inflammation FODMAP diet… So when the docs at Group Health prescribed FODMAP diet, he’d already been on it for 2 years.
The truth of it was nothing addressed the pre-syncope symptoms. Nothing changed the fact that when this thing hit after going to the bathroom, it hit hard enough that he needed to lay down.
When people suggest dietary changes, probiotics, or other supplements, 9.5 times out of 10, he’s tried it. There is absolutely NO dietary change out of the hundreds of diets I’ve studied that made a bit of a difference.
It’s probable that taking CoQ10 and some other new supplement has helped a bit, but it’s also true that every time he exerts his thinking processes, the relapse is worse than just physically doing too much.
There is a difference between the exhaustion of CFS and the near syncope state of extreme brain dysfunction… I won’t list the symptoms. We just call it Haggis.
Healing an Injury
Inflammation comes from an injury. A muscle sprain begins to heal by inflammation – the body’s protection mechanism to trauma. I started looking at this from a physio – therapy outlook. When you sprain your leg or pull a hamstring, the healing process prescribed is rest, ice, elevate and compress.
My research led me to some studies on TBI’s. The symptoms are eerily similar. The symptoms are equally similar to dementia. A great difficulty processing new information, following directions, remembering those tasks the following day, short term memory, garbled words some days, feeling hungover without touching a drop of alcohol….all these things happen to the TBI patient. They also happen to dementia patients. And to my guy who was ultimately diagnosed with Myalgic Encephalomyelitis. (Which means inflammation of the brain and spinal chord — and sadly is lumped in with Chronic Fatigue Syndrome)
In reality, any kind of brain exertion triggers a flare. If the brain is injured and not quite healed, and exertion goes beyond the muscles tolerance, inflammation happens again. Thus we have fluctuating symptoms with rapid response to new bouts of inflammation.
It might be easier to look at another muscle. I’m dealing with a chronic injury to my groin. I know what happens. It’s abundantly clear — so here’s the layman’s description of how the process of injury and inflammation. An injury occurs and the intelligent body sends out inflammation to protect that part. Thus the common prescription for helping an injury is to ice it. Apply cold to reduce inflammation. Yes?
But in recurring injuries, the muscle is continually reinjured. The inflammation dies down, the acute injury seems recovered, but is not fully healed. With a premature return to normal activity, the injury recurs sending again inflammation to the part that was injured. What the body does is it continues this cycle. But there is a new problem. With the repetitive injury, the body starts to try and protect it by sending scar tissue to the area. That stuff is hard to break down once it forms.
Treating Brain Inflammation
Not so Easy
We can give you all kinds of advice. Google Anti-Inflammation Diet or Mediterranean diet. They are similar. I’ll publish another page on each dietary influence. For now, let’s just look at some simple advice given us from the Integrative Medicine team at the Mayo Clinic in 2014.
Eat plenty of fish
Eat your Greens
Avoid Alcohol and ditch the cigarettes
Get plenty of daylight
Increase your Vitamin D
Take in a lot of Olive Oil
Practice Yoga, Tai Chi or Qi Gong
Try to work up to 30 minutes of exercise a day
Regulate your sleep patterns
That was about it. And all are great recommendations that I’d been touting for years. The trouble was, not one thing was going to work, and some things actually made him worse.
Systemic Exertion Intolerance Disease – meaning the system does not tolerate exertion and inflames with exertion. But the body is a whole system. What one thing controls it? THE BRAIN!
This disease presents many complications including an overall question mark as to what really works. It’s entirely likely that it’s only a solid combination of all the above that really works. We went from extreme clean eating to relaxing. We had to. The time drain on me was enormous and as other priorities loomed large, the one thing that slacked was shopping thrice weekly for fresh goodness. What we found was this:
Getting outside daily was a major factor in restoring normalcy. I don’t mean going to the car and driving — I mean literally being in broad spectrum DAYLIGHT for 30 – 60 minutes every day. Adding to that a little conversation and a few smiles from strangers, and suddenly he was doing a bit better. Adding CoQ10, Tumeric, and electrolytes, and he got a bit better.
The world is set up in time chunks. If you have a 45 – 60 minute class or session, they want you to use it. While the doctor said start slow at 10 – 15 minutes, the therapists could not hear that. They needed to make him move and do stuff for the entire time. Classes didn’t work because he couldn’t get through the warm up. Yoga classes were useless because he couldn’t stand for 10 minutes and they did standing poses for 30. Even the physical therapist didn’t want to understand that if he did a 20 minute recumbent bike warm up, that should be all he did. Instead, they had him do several standing and reclining exercises after the cycling. Finally — I called them on it and said: He is supposed to be learning to listen to physical indicators of fatigue. How are you helping him with that so he knows when he’s had too much BEFORE a collapse? They heard me, but they didn’t change anything. EACH TIME HE WENT IT TOOK 4 Days to recover. So no, he didn’t do any exercise in between sessions. By the time he recovered, he was happy to just not feel sick, tired, and ready to pass out.
So sure, exercise could help, but light stretching and simple balance work would have been better. And not for a freaking hour.
The day that a physical therapist chastised me because he was too sick to deal with an appointment that day — that was the day I gave up on PT. It only works if one has the overall energy to do it at home.
WHAT WORKS THEN?
You aren’t going to believe this. What works is to accept that you can’t do what normal used to be. Acceptance of the overall issue is the best solution. So if you can’t stand up, sit up. Take a chair outside where you can see other living breathing people. EAt the right things. Don’t succomb to comfort eating for that really makes things worse — but don’t be obsessed about it either.
Do what you can. Do what makes you feel good, but guard against over doing it. Give your brain a rest. Don’t over think. Try to monitor feelings and when getting agitated (good or bad agitation), remember to BREATHE and SLOW DOWN.
The weirdest thing that makes no sense to me or anyone active is this:
The best solution was to practice the principles of recovery.
Awareness, Acceptance, Action
Accept what is and know that you didn’t cause it, can’t control it, and can’t cure it. Just knowing that gives the body a bit of breathing room to heal itself.
Find something that you can enjoy that doesn’t cause more exertion. Everyone will be different. If you can find something that you can do during your good hours, you have a better chance to retrain your brain to the new definition of a good day.
It’s taken 9 years. The first 8 were hit or miss with no real medical help. The last year has been rough, but the final kicker was when Dr. David S. Bell said to him:
Forget who you used to be. Don’t live in the past. You won’t get back who you used to be. Find things TODAY that you can enjoy and do. Don’t make it into a job. Don’t try to make money from a hobby, just enjoy the hobby with zero stress.
If you want help, I am open to coaching ME patients and their families. I’m a certified integrative health coach. I can’t promise miracles, only hope. I can’t find your personal cure, but I can help you get geared up to live as healthfully and happily as possible in spite of this disease.
©2015 Nancy Lamb