Crash / Flare Busters For Chronic Fatigue Syndrome and Fibromyalgia

HIP's Post-exertional Malaise Busters for Chronic Fatigue Syndrome (ME/CFS)

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Cort submitted a new resource:

HIP's Post-exertional Malaise Busters for Chronic Fatigue Syndrome (ME/CFS) - Want to reduce post-exertional problems after exercise or mental activity? Give these a try

Hip is a person with ME/CFS who has studied the disease extensively

PEM 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)

All the above should help reduce PEM from physical exertion. These supplements might be...

Read more about this resource...
 

Edie

Active Member
Cort submitted a new resource:

HIP's Post-exertional Malaise Busters for Chronic Fatigue Syndrome (ME/CFS) - Want to reduce post-exertional problems after exercise or mental activity? Give these a try



Read more about this resource...
Hi CORT. My health took a big dive in the last 2 months. My Thyroid crashed and I developed 6 more allergies, which I've recently been cleared of through NAET. I've had to increased my Thyroid med. and my energy is now coming back. When I had a visit with my Naturopath Doctor 2 weeks ago, he said that it was the Prednisone drops that my specialist had me on after 2 eye surgeries that destabilized my health. Even though I've been off those eye drops for 2 months, he said that it's still in my system and he prepared a Homeopathic remedy for me to clear it out of my system. Anyone considering this drug should research it's many serious side effects!
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Hi CORT. My health took a big dive in the last 2 months. My Thyroid crashed and I developed 6 more allergies, which I've recently been cleared of through NAET. I've had to increased my Thyroid med. and my energy is now coming back. When I had a visit with my Naturopath Doctor 2 weeks ago, he said that it was the Prednisone drops that my specialist had me on after 2 eye surgeries that destabilized my health. Even though I've been off those eye drops for 2 months, he said that it's still in my system and he prepared a Homeopathic remedy for me to clear it out of my system. Anyone considering this drug should research it's many serious side effects!
Thanks for the warning Edie - prednisone is indeed a heavy duty drug.
 

SuziRider

Member
The Flu Shot a year ago triggered my worst CFS flare-up yet, after getting it for years with no issues besides a sore arm for a couple days. It took 10 months to go from an 0-10 CFS Energy Rating of 1 (and aching like I always had the flu!) back up to my normal 4.
The Flu Shot only protects against 3 or 4 of the 300 flu viruses. IMHO It is not worth getting if you have CFS or FM.
 
Cort, this is really interesting:

"....Postponing build-up of lactic acidosis: Time-release guaifenesin (600-800 mg...."

Maybe that is why Guaifenesin has been thought to have helped a lot of people with FM, even if the hypothesis about "why", formulated by Dr Paul St Amand, is controversial? I'd like to know more about this.
 
I think this article is on the right track for CFS. But on fibromyalgia, I believe that the vaso-constriction issue, including vessels simply crushed in tight muscle and fascia layers and knots, means that a lot of supplements never get to where they are meant to act. Also, massage is of dubious benefit because the tight muscles are un-releasable, and stretching is like trying to stretch an elastic band that has been soaked in concrete first - all you do is tear something.

Winding back FM is a long, gradual, multi-disciplinary thing, and I don't believe there is much able to be done at all, to mitigate post-overdoing-it crashes. The magic ingredient in successful FM protocols, is "not overdoing it" in the first place.
 
According to all the studies I have read post exertional muscle soreness otherwise known as delayed onset muscle soreness is not caused by build up of lactic acid. Researchers who have examined lactate levels right after exercise found little correlation with the level of muscle soreness felt a few days later. Check out:
http://www.scientificamerican.com/article.cfm?id=why-does-lactic-acid-buil
For significant relapses in energy after stress I have benefited from taking an additional 5mcg. of T3 (the active thyroid hormone) per day. This can "reset" metabolism.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Cort, this is really interesting:

"....Postponing build-up of lactic acidosis: Time-release guaifenesin (600-800 mg...."

Maybe that is why Guaifenesin has been thought to have helped a lot of people with FM, even if the hypothesis about "why", formulated by Dr Paul St Amand, is controversial? I'd like to know more about this.

This is what Duchene said about Guaifenisen

There is anecdotal evidence that guaifenesin slows the build-up of acidosis in skeletal muscles of ME/CFS patients who had enteroviruses or other skeletal-muscle attacking viruses as the trigger for their illness. Thus they have special extra damage to their skeletal muscles. Precisely why guaifenesin works is unknown, but it definitely does work for some patients. Guaifenesin is a uricosuric—a drug that increases the excretion of uric acid from the blood into urine. 83 It seems to help the excretion of excess phosphate from the cells of the body, which might have a bearing on mitochondrial dysfunction, since excess intracellular phosphate builds up with the hydrogen ion H+. 82, 83 Thus it might just act as a chemical buffer in the blood, slowing the build-up of acidity. The ME/CFS patient population that might be helped by this drug is a probably a small subset of the ME/CFS patient community.

"The ME/CFS patient population that might be helped by this drug is a probably a small subset of the ME/CFS patient community" - but who cares if you're the one??
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
According to all the studies I have read post exertional muscle soreness otherwise known as delayed onset muscle soreness is not caused by build up of lactic acid. Researchers who have examined lactate levels right after exercise found little correlation with the level of muscle soreness felt a few days later. Check out:
http://www.scientificamerican.com/article.cfm?id=why-does-lactic-acid-buil
For significant relapses in energy after stress I have benefited from taking an additional 5mcg. of T3 (the active thyroid hormone) per day. This can "reset" metabolism.
I've been wondering about stuff like this. I think lactate is a problem for some patients but not for others and maybe not for most. But why not boost something that's already helping? Like T3?
 
According to all the studies I have read post exertional muscle soreness otherwise known as delayed onset muscle soreness is not caused by build up of lactic acid. Researchers who have examined lactate levels right after exercise found little correlation with the level of muscle soreness felt a few days later. Check out:
http://www.scientificamerican.com/article.cfm?id=why-does-lactic-acid-buil
For significant relapses in energy after stress I have benefited from taking an additional 5mcg. of T3 (the active thyroid hormone) per day. This can "reset" metabolism.

That is interesting, but DOMS per se is not FM, although FM certainly does have that as well as everything else. (I can't comment on CFS). My own hypothesis about FM, would be that it is not a question of lactate buildup at the time of exercise, which may well not be elevated above normal subjects; but it is a question of the body's extreme slowness at clearing it. It would be interesting to get a study done, comparing Fibromyalgics and healthy subjects lactate levels after, say, 3 days of rest following prolonged exertion.

Even so it may not be lactate that is the problem; that Scientific American article does give some interesting pointers about the range of things that could be the problem. I would say that FM may involve an extreme version of the same mechanisms that lead to DOMS in non-fibromyalgics.
 

Learner

Active Member
I've been in the middle of a crash the past couple days, brought on by too much oxidative stress and livening up of toxins.

This is what I tried, which brought me back about 60%.... activated charcoal, B1, molybdenum, glutathione, SOD, and IM injections of B12, B complex, and folate.

I already take citrulline and BCAAs, so I can't tell if they helped, and my Seeking Health creatine arrived today, which I plan to try, on my doctors advice...NADH occasionally helps, too.

Note: I tried the creatine before activity, and it did seem to help a little bit.
 
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Cort

Founder of Health Rising and Phoenix Rising
Staff member
Thanks Learner - just what I was looking for - I will add to the list.
I've been in the middle of a crash the past couple days, brought on by too much oxidative stress and livening up of toxins.

This is what I tried, which brought me back about 60%.... activated charcoal, B1, molybdenum, glutathione, SOD, and IM injections of B12, B complex, and folate.

I already take citrulline and BCAAs, so I can't tell if they helped, and my Seeking Health creative arrived today, which I plan to try, on my doctors advice...NADH occasionally helps, too.
 

Cruzgirl

New Member
Could you add a print button that just shows the full article? many times I take these to my doctor and it gives me all the comments too and pictures. Trying to make it as simple for my doctor as I can. Love the comments and sometimes they are just as helpful, but at times we can get pages of those too.

Thanks Cruzgirl.
 

Seanko

Well-Known Member
As a side note from the same source, not quoted here, Hip mentions how he snorted Creatine because he had problems digesting it orally!!!
 

Seanko

Well-Known Member
A good resource for doing your research into supplements is Examine. It looks at the available studies and provides objective good analysis.

Examine
 

AquaFit

Active Member
I think this article is on the right track for CFS. But on fibromyalgia, I believe that the vaso-constriction issue, including vessels simply crushed in tight muscle and fascia layers and knots, means that a lot of supplements never get to where they are meant to act. Also, massage is of dubious benefit because the tight muscles are un-releasable, and stretching is like trying to stretch an elastic band that has been soaked in concrete first - all you do is tear something.

Winding back FM is a long, gradual, multi-disciplinary thing, and I don't believe there is much able to be done at all, to mitigate post-overdoing-it crashes. The magic ingredient in successful FM protocols, is "not overdoing it" in the first place.

Philip, CFS/ME/FM/EDS are big labels and it's a winding road to better health, you said it well and I agree. It's unfortunate that we're left to figure out for ourselves what exactly is happening with our own bodies within these vast and changing categories.

I was thinking that what you're describing sounds a lot like scleroderma. http://www.mayoclinic.org/diseases-conditions/scleroderma/home/ovc-20206014 Reading this description you may think, no that's not you, but here's the thing with the paucity of studies on our conditions: we have to put parts of studies together and try things out. So, scleroderma is too much collagen in the body. As to where it's going to go in an individual, that's individual. Ehlers Danlos research has found (simplifying here) that hyperlaxity is a result of too little collagen in connective tissue. Scleroderma is the opposite, too much collagen. Having that collagen wind up in muscles rather than skin or heart, etc. doesn't seem to be well studied from my very brief look at the matter. So what do you do? Keep asking the question - why? So, to start, How does collagen get into the body? A first answer is Vitamin C is needed for collagen production. So do you have too much vitamin C for your body? Check Vitamin C levels. If that's fine, then keep reading all the studies you can about collagen.
 
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AquaFit

Active Member
I've found there's two parts to feeling good/functioning. Preventing or minimizing flares and then recovering once it happens.

Prevention is two fold, I've found. First we have to realize what we have and then change our lifestyle to adjust to the damage that's irreversible in our bodies. I grew up volunteering and that involved a lot of time at people's doorsteps, sometimes in the hot sun. I started having near fainting episodes. My doctor wrote "orthostatic intolerance" on my medical chart and told me to eat more salt. That was it. Years later I realized I should just stop stanidng at people's doorsteps, there were other ways to volunteer that worked for my body. When a muscle in my big toe tore after running on a treadmill for 3 hours. Orthotics, therapy and rest didn't help my foot heal completely, a sports doctor told me finally "some people have a solid foot. Yours is pliable. It's not a good foundation to do sports on." Oh. Later I found this is Ehlers Danlos territory. So I changed to doing aquafitness in deep water. I worked hard at strengthening my core with micromovements and I've worked up to doing all exercises in the deep end without noodle or flotation belt. It's helped my vagus nerve tremendously. Exercises like this, but all in the deep end, sculling water with the arms as leg exercises are done: http://www.fitnessmagazine.com/workout/express/20-minute/20-minute-water-workout/ After warming up, I work out in intervals, which apparently teaches the body to produce more lactate and then clear it. I've learned from Dr. Peter Rowe not to overstrech even though I feel I'm flexible. As soon as I feel a stretch in the limbs, that's enough. EDS will make us feel like we can stretch our limbs impressively, but it's a mistake. That will cause a flare up of symptoms.

I took amino acids, also known as neurotransmitters in some cases, or nutriceuticals, but I found diminishing returns after a few months. I now try to get these from food, there's some info here: https://bebrainfit.com/balance-neurotransmitters/ I've cut out processed food completely. Wreaks havoc with hormones, and adds unneeded toxins.

Medications - they add to our toxic load. I turn to a naturopath who worked with Dr. Bested for 7 years when I need a natural version of medication.

On a busy day, I'll eat very little, mostly veggies and a little protein, while sitting quietly, not on the move so I can digest and as EDS progresses slowly, swallow properly. I'll water load all day. Black organic tea with lemon when feeling peaked. It's important to only drink organic tea. Tea leaves soak up a lot of pesticide out in the fields and hot water will extract the pesticides effectively, creating a toxic brew.
 
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Cort

Founder of Health Rising and Phoenix Rising
Staff member
Could you add a print button that just shows the full article? many times I take these to my doctor and it gives me all the comments too and pictures. Trying to make it as simple for my doctor as I can. Love the comments and sometimes they are just as helpful, but at times we can get pages of those too.

Thanks Cruzgirl.
We will look for one. A good idea!
 

Seven

Well-Known Member
I had always done great on COq10 and baking soda. I just added BCAA and creatine 3 days ago. So far is great.
It took me out of the crash I was on and I went out bowling today!!!!

I always react great at first to supplements so will give it a few months before the final verdict. But so far I will agree is a PEM buster ( got me out of crash) need to see how it holds as a day to day supplement
 

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