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Crash and Flare Busters for ME/CFS and Fibromyalgia

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By Cort Johnson • www.ProHealth.com • December 31, 2016


Crash and Flare Busters for ME/CFS and Fibromyalgia
Reprinted with the kind permission of Cort Johnson and Health Rising.
 
Experiencing a “crash” or “flare” from too much activity (or whatever) in ME/CFS and fibromyalgia is a given. Most people react by reducing their activities, canceling plans, removing stimuli and going into rest mode. Most of our attention has been given to avoiding a crash; there’s not much information on how to get out of one.
 
Some people do have some ideas, though, on how to do that. In this blog we present some of them and ask that you give us your own.
 
We pretty much all know the behavioral ways to recover from or reduce the length of a crash or flare are pretty simple. Depending on how hard you've been hit, they consist of things like cutting down activities (just say No!), reducing stimulation (turning off TV, music, turning lights down), getting to bed earlier, and reducing stress (meditation, visualization, stopping catastrophic thought patterns).
 
The question this resource asks is whether we can do better than just waiting out a crash? There are certainly no guidelines on how to do that, but some ideas are out there.
 
First check out suggestions on how to recover from a crash from Hip, a patient who has studied the disease extensively, then from a blog by a PhD, and finally from a survey taken from the ME/CFS/FM communities.
 
PEM (Post-Exertional Malaise) Busters for Physical Exertion 
  • Creatine hydrochloride - 2 grams
  • Citrulline - 1000 mg
  • Branched-chain amino acids (BCAA) - 5 grams
  • CoQ10 800 mg
  • Sodium bicarbonate - ¼ teaspoon (1.5 grams)
  • Catalase - 600 mg (taken after exercise)
  • D-ribose - (5 grams three times daily
All the above should help reduce PEM from physical exertion. These supplements might be particularly efficacious at preventing PEM if taken an hour or so before doing some unavoidable physical exertion.
 
Creatine hydrochloride is a good form of creatine to take, as this is more soluble and better absorbed than the usual creatine monohydrate (and the monohydrate form can cause stomach aches).
 
RATIONALE: PEM Busters Work in Part by Neutralizing Lactate or Reducing its Production
 
There are several athletic performance studies (listed below) that support the observations by ME/CFS patients that the above-listed supplements can reduce PEM. These studies found that the very same supplements that patients on this forum have found reduce or prevent PEM also reduce the recovery period after athletic performance in healthy people. Several of these athletic performance studies found the supplements work via neutralizing exercise-induced lactate circulating in the blood. 
  • This study shows that the supplement creatine reduces blood levels of lactate from exercise. And this study found creatine increases muscle recovery after injury.

  • This study found citrulline reduces lactate levels produced by exercise.

  • This study found that BCAA reduces lactate levels produced by exercise (and this study found that by inhibiting the L-system transporter, BCAA suppressed the uptake of tryptophan, thereby alleviating fatigue).

  • This study found that co-enzyme Q10 reduces lactate levels produced by exercise (in myotonic dystrophy). And this study found Q10 improves muscle endurance.

  • This study suggests that sodium bicarbonate (bicarbonate of soda) can help neutralize lactate circulating in the blood.

  • This study and this study found the drug dichloroacetate lowers lactate levels produced by exercise. 

I wonder if these supplements might also help the PEM I get from mental exertion? I find that even light socializing for 3 or 4 hours in the evening will cause me significant PEM the following day or two. This greatly limits my social life, though I expect that the mechanisms of mental exertion-induced PEM will be different to those of physical exertion-induced PEM.
 
PEM Busters for Mental Exertion (eg: hectic social or professional events)
 
Prednisone at a dose of 20 mg or so taken 4 hours before the event. Some ME/CFS patients have vouched this works very effectively and reliably (though others report ill effects from this corticosteroid drug). See this thread. But also see the warning in this post (which cautions against using prednisone for any extended period of time, and warns that the PEM protective effects do not work for the whole day; they seem to wear off after about 6 to 8 hours).
 
PATIENT REPORTS
 
On Baking Soda/Citrulline - One person reported
 
I needed to report this to you all because it worked so well. Today I went to the gym. I actually did 30 minutes of exercise and lifted weights afterwards. Usually the weights at the end would kill me for about a week and I would be recovering from the cardio for at least 2 days. And, usually after exercise, I get a sore throat, headache, swollen lymph nodes, bad muscle and nerve pain, chills, and the cold sweats. When I go to bed the night I exercise, I wake up the next morning drenched in sweat. I have had very little to none of that recently.
 
I take a lot of supplements, but I find the ones I mentioned above work the best to reduce PEM after exercise. Most effective is two baking soda pills before exercise and lots of catalase immediately after. I take 600 mg of Catalase after the exercise.
 
Hip noted that studies have shown (see here and here) that both bicarbonate and catalase (via its scavenging of hydrogen peroxide) improve muscle recovery after exercise.
 
Q10 and creatine monohydrate have been shown to improve muscle endurance, and increase muscle recovery after injury respectively (see here and here), so that makes sense.
 
One study found creatine monohydrate reduced blood lactate so would further augment sodium bicarbonate's lactate-reducing activities. The study detailed here found that by inhibiting the L-system transporter, BCAA suppressed the uptake of tryptophan, thereby alleviating fatigue..... This study found citrulline reduces lactate levels produced by exercise. This study and this study found the drug dichloroacetate lowers lactate levels produced by exercise.
 
On CoQ10 - From Hip
 
“You just need to take Q10 an hour before the exerting activity that you are about to partake in, and this I find prevents a lot of the PEM that you would normally experience when the activity is over. I use a dose of 400 mg of Q10 for this anti-PEM purpose.
 
I get ME/CFS PEM mainly from mental exertion (rarely from physical exertion), and for me, 3 or 4 hours of socializing with friends causes a lot of PEM the following day or two. However, if I take 400 mg of Q10 just before I begin this 3 or 4 hours of social activity, my PEM is noticeably reduced. Note that Q10 is most cheaply purchased in bulk powder form."
 
D-Ribose
 
In this post, someone said D-ribose dramatically reduced the duration of their PEM:
 
"I gave the d ribose a go and I am now on 10-30g a day. This seemed to drop the severity of the episodes for me. Before taking it I would be laid up for around 3 - 4 days. Now it's 12 - 24 hours recovery time when I over do it."
 
From Hip: D-ribose makes a lot of theoretical sense as a PEM buster, because according to the Myhill, Booth and McLaren-Howard hypothesis, PEM results from an acute depletion of ATP molecules, which in ME/CFS they think are broken down and lost in the urine during exercise. Then because you don't have enough ATP, you cannot transport energy from the mitochondria into the cell (ATP of course is the molecule that physically carries energy).
 
They hypothesize that you only get over PEM once the body re-manufactures some more brand new ATP molecules, so that you can start transporting energy again. And it is D-ribose that facilitates this re-manufacturing, as the body can make ATP much faster when there is ample D-ribose. So that is probably how D-ribose reduces the duration of PEM.
 
The Myhill, Booth and McLaren-Howard hypothesis of PEM is explained reasonably succinctly in this post.
 
The other PEM busters (Q10, bicarbonate, BCAA, etc.) I think probably work by reducing lactic acid, which according to the hypothesis is an exacerbating factor in PEM (because it takes a lot of energy to clear lactic acid, so the presence of lactic acid even further drains your energy supply during PEM).
 
But D-ribose would seem to work in a different way, by helping to restock your ATP molecules.
 
Mitochondrial Dysfunction, Post-Exertional Malaise and ME/CFS by Lucy Duchene for ME/CFS/FM patients with mitochondrial dysfunction
 
Recovery from prostration fatigue 
  • Vitamin B-1 (thiamine) (100 mg twice a day) 70, 50, 55, 79, 80
  • Vitamin B-2 (riboflavin) (100 mg) 70, 50, 55, 79, 80
  • Biotin (5 mg twice a day) 70, 55, 71, 75, 76, 79, 80 
Postponing build-up of lactic acidosis
  • Time-release guaifenesin (600-800 mg) 82 
Suggestions From the "How to Recover From a Crash" Survey and other Patient Reports
 
This survey asked "What to do if you're already in a crash?" Respondents to that survey suggested the following:
  • saline/blood volume enhancement
  • oxygen
  • activated charcoal, B1, molybdenum, glutathione, SOD, and IM injections of B12, B complex, and folate.
  • taking Nortriptyline (25 mg round 5 or so hours before sleep and boost it to 40 odd mg when over-worked)
  • aggressive rest therapy while keeping mind calm and clear
  • staying calm, no matter what
  • pre-dose with n-acetylcysteine (NAC)
  • mild hyperbaric oxygen chamber
  • getting a massage for pain
  • Epsom salt baths
  • electrolyte drinks (coconut water is best), 4-5/day? plus high sodium first thing in day, 4-5,000 mg/day
  • if lactic acid caused muscle pain is the problem then gentle yoga/stretching in bed until the muscles loosen up, the lactic acid moves on and the pain releases. Be patient - stretching may take 30 min-1hr to move from severe pain to wonderful
  • Medical marijuana for pain
  • AMP, NADH and B Complex as an intramuscular (self) injection
  • Glutathione as another IM injection. Creatine, D-Ribose, Acetyl-l-carnitine and COQ10 as oral supplements.
  • Drinking LOTS of water
  • Doing Yoga Nidra (guided meditation) 
Dr. Goldstein's "Resurrection Cocktail"
 
Dr. Goldstein's "Resurrection Cocktail" is a different kind of crash buster. It was an IV push that helped to get really sick patients - people who are essentially in a severe crash all the time - out of their beds. It was not a cure - just a temporary aid - but it did get them going for a time.
  • Ketamine
  • IV ascorbate
  • IV lidocaine
  • IV thyrotropin- releasing hormone (which raises all biogenic amines plus acetylcholine)
  • Nimotop
  • Neurontin 
Find out more about his "Resurrection Cocktail" and why he chose the ingredients he did.

About the Author: ProHealth is pleased to share information from Cort Johnson.  Cort has had myalgic encephalomyelitis /chronic fatigue syndrome for over 30 years. The founder of Phoenix Rising and Health Rising, he has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort's and other bloggers' work at Health Rising



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