Telling CFIDS, Fibro and Hashi's to Suck It!

Training
41

Ah, I should have been more clear about the role of cortisol and T3 - I am severely hypothyroid due to Hashimoto’s, so I take time-release T3 for thyroid hormone replacement. T3 requires cortisol to get into the cells - indeed, if I don’t take enough cortisol, I end up converting the T3 to reverse T3 and hypothyroid symptoms return.

I still have functioning adrenals, but CFS patients tend to have strange hypothalamus-pituitary-adrenal axis dysfunction. In my case, I tend to relative hypocortisolism during the day, and hypercortisolism at night (disrupting sleep). Taking small amounts of cortisol during the day helps balance out this response, possibly by bridging a broken HPA feedback loop. I also have trouble maintaining optimal salt balance and blood pressure despite seemingly normal ACTH, which is why I take small amounts of fludro (or eat huge amounts of salt, ugh).

I suspect that my problems with the stress response stem not from cortisol secretion, but from norepinephrine. I actually feel pretty great during the response - my brain clears up, nervous energy fills my body - but the response doesn’t end until it basically empties my energy reserves, crashing me. The catch-22 seems to be that when my energy reserves are higher, I can stay in fight-or-flight mode for longer, making the crash all the worse. If I’m drained to begin with, the response has little left to take.

I am considering the possibility that I simply have trouble generating energy efficiently from glycolysis or lipolysis, but that’s going to take a lot more research…

At any rate, NAC seems to be a bust so far, l-tyrosine makes only a very small difference, and NADH makes me sleepy. Only b-vitamins, creatine, DHEA and pregnenolone have a reliable effect on my energy levels. I’ll have to give PS a try and see what effect it has. SCIENCE! :slight_smile:

42

Saw my doc yesterday - it looks like we’re at the point where we’ve peeled away all the other stuff and my autoimmune crap is under control, so now we’re left with the core of CFS - mitochondrial dysfunction and inappropriate hypothalamic-pituitary-adrenal response. This is the hardest thing to treat, because it’s the least-understood - though it is certainly known to be very sensitive to stress.

First and foremost, he wants me to reduce my working hours some more until we can get me over this hump, and try to adjust my work position such that the stress bombing is reduced as much as possible - it’s clear that if my adrenals keep being kicked, I’ll keep losing ground.

I’ve received a supp complex to assist my mitochondria in ATP production - my trouble in switching between dominant energy systems points to a deficiency in intermediary molecules in the various energy production cycles (the way creatine and ribose give me a notable boost in energy supports this theory). My ATP-PC system seems fine most of the time (the reason I can do 5-6 heavy reps), but when I try to go longer things go wonky as my cells try to switch over to aerobic energy systems (the reason I can’t do high reps at low weight). Even my anaerobic glycolysis kind of sucks, because my muscles start burning way too hard way too soon (the reason I can’t do the classic 8-12 reps at moderate weight). So we’re hoping that adding this supp mix in to my usual mix of ribose, creatine, and l-glutamine will help boost my energy levels and recovery.

Given the host of beneficial side-effects I see when I lift regularly, we’ve decided not to pursue HGH or nandrolone therapy at this time - it’s clear that I can make plenty of my own T, IGF-1 and HGH, so long as I can get myself under a barbell and eat a fat/protein-fuelled diet. Our goal now is to get me back to where I can lift again and push me back out of catabolism, restarting the cascade of good stuff I saw back in October.

This could end up being very interesting indeed - it blows the “graded (aerobic) exercise” theory out of the water. What if all CFS patients should be lifting instead of treadmilling?! :wink: At any rate, though I’m disappointed at the ground I’ve lost since November, I know that I can get there again, even if it takes baby steps and some time off of work.

For those playing the home game, the new supp contains the following:

  • glucuronolactone
  • alpha-ketoglucaric acid
  • l-phenylalanine
  • taurine
  • rhodiola rosea
  • creatine
  • resveratrol
  • n-acetyl l-tyrosine
  • malic acid

It folds in a couple of things I was already taking (creatine, l-tyrosine, malic acid), so I’ll be adding this to a morning and noon shake along with high-quality whey protein, ribose, and l-glutamine. Yay fewer pills to swallow!

43

Hmn… are you sure about the body convertin T3 to reverse T3? I’m pretty sure both T3 and RT3 can only be made from T4.

44

@Hallowed: You’re right, that was a brainfart. :wink: I actually take slightly more T3 than would make me euthyroid in order to kind of suppress my endogenous T4 production, because otherwise I seem to convert the remaining T4 that I do make into RT3. We’re trying to get my ferritin up (it’s better than it was but still has a ways to go) but my adrenals are everywhere and on the moon, and both of those can cause poor T3/RT3 ratios. Fun times.

And OMG, this new supplement tastes absolutely hideous, it had better work! ~_~"

45

Gosh lady you have alot going on! I’m so glad your With Holtorf and Dr. C.

Makes my everyday Wilson’s Syndrome seem like a cake walk!

Hang in there and please do try to get that work situation sorted. You’ve got to take care of you.

46

@Hallowed: Thanks for the support! Don’t knock the effort of living with Wilson’s - it sucks to have something that most doctors don’t even know about (or don’t “believe” in despite measurable symptoms), much less know how to treat. And thank the gods for Dr C!

I’m feeling a lot more optimistic since my last appointment, even though we’re well past the point of easy or even reliable solutions. I guess it’s just knowing that my doctor is on my side, and that I’m blessed with a workplace that values me and is willing to be flexible.

Starting tomorrow it’s off the holiday carbs and dairy and back to hardcore detox dieting. I’m actually looking forward to it, holiday food has left me feeling kinda bloaty. :[ Time to bust out the slow-cooker; soups and stews are sounding very appealing.

Easy does it trying to get back into the gym. I’m planning a gradual reintroduction, which I’ll detail in my next post after I finish plotting it all out. :slight_smile:

47

Wow I hope you find relief. I was reading what all is going on and I’m like wow. Currently I have hyperthyoridism and looking at me you would think hypo although many many moons ago I was hypo. My thyroid can’t decide what it wants to do lol. I understand a little on that front because I have thyroid issues. Stay the course…each day is a blessing no matter how crappy it is :). Did I just sound like a hallmark card omg I am going to bed lol. Hang in there and yes you can make fun of my hallmark comment :slight_smile:

48

Whew, well, OK… first the good news: I did not actually manage to die. Yay! confetti

Now the bad news: something new is afoot, or at least something is not quite right. I’ve been having episodes of high systolic BP with low diastolic BP and a fast pulse. Needless to say, these episodes make me feel like total ass, and I am leery of working out hard until we figure this out.

This particularly chaps my ass because about a month ago, I started on low-dose naltrexone and was feeling pretty damned good - so good that I installed a power rack in my home gym, so I never had to wait for some asshat to stop doing curls in the one at the local gym. (Well, OK, to be fair, we never had to wait for the power rack until we actually started using it - it became suddenly popular after that. I’m suspecting that people simply didn’t know what it was for.)

Anyway, I have about a month to go before I go do some nerd shit at a local convention, and I do so enjoy filling out my costumes in the best possible way. I would like to drop an unwanted dress size (I’m about a size 5 right now, usually I’m a 4) by then, though my workout schedule will be irregular at best as we tinker with my meds to stabilize my blood pressure. On the other hand, whatever this is, it’s KILLING my appetite. So I’m putting together a bastardized Velocity-inspired meal plan for the next 4 weeks - I can certainly get shakes down! (It will also be way easier to consume shakes at-con than it would be to find food I can eat…)

Based on the Shug’s V-Diet calculator, I should aim for about 1275 calories most days, bumping it up to 1650 on the days I actually manage to get myself under that bar. I’ll probably go for a thick breakfast shake to cushion my meds, a small HSM for lunch (again to cushion meds), then various shakes for my other 3 meals.

49

Also on the subject of shakes, I found a place (Nature’s Flavors) that sells tapioca dextrose and maltodextrin for my post-workout shakes (corn-derived versions upset my tummy). They also sell a huge array of unsweetened flavor powders that are free of all the crap I can’t have, so I’m no longer stuck with the same old chocolate or vanilla every day. I made a butterscotch shake the other day and it was fucking AMAZING. :smiley: Having 4-5 shakes a day isn’t so bad if you can have flavors like Bavarian Cream, Strawberry Banana, and Maple Brown Sugar. With a little stevia it certainly kills my sweet tooth!

I’ve also become fond of Zevia stevia-sweetened soda for when I get a soda craving. It’s too sweet out of the can, but I pour it over lots of ice and it’s good. Vitamin Water Zero isn’t too bad, either, but most of the time I stick to water and tea.

50

Things that make me feel better about myself:

My bf was complaining about his clutch hand hurting and lack of grip strength after a long motorcycle training class. I had him squeeze my hand and remarked that yeah, that hand seemed weak. I then had him squeeze with his good hand to see how much strength he had lost:

Me: “Keep going, you’re not gonna crush my hand.”
Him: squeezes
Me: “Keep going… I have a deadlifter’s grip, you won’t hurt me.”
Him: squeezes more
Me: “…oh, honey. We need to work on that.”

My mom: “He’s a scholar, he’s not a bruiser like you.” :stuck_out_tongue_winking_eye:

51

Got a kind of half-assed workout in yesterday; I was feeling pretty good to start with, but had trouble activating my legs and glutes so my squat form suffered. I instead went for some rack pulls, hanging leg raises, and hung from the chinup bar for time. I did OK on those, but then I started to feel wobbly. I played a little DDR to round things out and burn a few more calories, nothing too difficult. While it was a little disappointing, at least I managed to DO something. So yay me. :smiley:

On Wednesday, my friend wants to come over and learn how to squat and deadlift - it is my mission in life to get as many chicks lifting heavy as I possibly can. :slight_smile: She’s also getting to borrow my copy of The New Rules of Lifting for Women. :smiley:

52

Whoo boy. So I had another flare, one that’s had me out of work since June (and not returning until at least March 2012 from what my doc recommends). It’s pretty simple: stress makes me worse. My work environment has become too stressful for me to keep my symptoms in check; it keeps knocking all the spinning plates down.

Almost four months of rest later, I’ve got some of the plates spinning again, and once more I’m ready to try integrating lifting back into my regimen. Here’s the deal: the mitochondrial problems in CFIDS affect the aerobic system the most (I did a 15-minute treadmill test and lost the rest of that day, plus the next).

However, the creatine phosphate cycle and the lactic acid cycle do not involve the mitochondria and are unaffected (the latter seems to get overused, which may explain the constant low-grade muscle soreness). The CP cycle is fully recharged within 5 minutes.

What does this mean? It means I might be able to do powerlifting-style workouts, with high weight and very low reps (not going over 10 seconds per set), with longish rests in between. This is not ideal for hypertrophy, of course, but it will still make me stronger and help me ditch the bodyfat. Getting leaner definitely makes a difference for me; I’m not wasting precious energy maintaining and carrying around a bunch of useless fat!

We shall see if my theory is correct, in which case it could help me recover, or if it just stresses my body too much and crashes me again. SCIENCE!

53

Welcome back. I am glad you are able to train again and it sounds as though you are maintaining a positive attitude. I understand the workout thing. A few years ago I got into Crossfit and doing back to back high intensity workouts really did a number on my immune system. It was fun at first, but then I got sick again and again - I came down with colds, flu, bronchitis, cystitis and a 48 hour vomiting bug all within the space of eight months. Blood tests didn’t reveal much other than that my white cell count got low. I switched to lower rep workouts with long rests between sets and recovered enough that I didn’t get a cold for two years.
Some people can churn out intense workouts on a daily basis but I think for a lot of us - women particularly, and older women even more so - end up suffering the consequences. You’re making a smart decision and I wish you all the best with your recovery.

54

eek…sorry about the flare up, but its good to see you back! and maybe pl stuffs?? nice!

55

Just read your log. I’m really sorry about all the obstacles that you’re dealing with. However, I am impressed with how positive you are staying! Keep at it. Maybe in some time, you’ll learn things from this experience that will help others overcome it.

56

Thanks, everyone! I’m recording data on this for my doctor - the current exercise prescription for CFIDS patients is graded aerobic exercise, which makes no sense! It makes a lot of patients worse, myself included. (However, it can help Fibromyalgia patients, and the two diseases can be hard to distinguish, if they are even two separate diseases…) Anyway, it could be pretty revolutionary if I can show that brief, intense weightlifting actually helps. :slight_smile:

I’ve had to take it very slowly, but so far, so good! I’ve also been eating mostly paleo with a bit of organic ghee and heavy cream here and there, and that is just working fantastic. I’ve already lost an inch of bloat from my waist and my energy is more even. Yay! Once a week I allow myself a small meal or two with white rice to get a little jolt of low-allergy carbs.

My gym plan involves lifting in the 3-5 rep range, with a 3-5 minute rest between sets and a goal of 5 sets (3 for deadlifts). This limits me to only a couple of exercises per session, so I’m concentrating on compound stuff. I have a power rack at home, and not having to spend energy getting to and from the gym is a big plus.

Oly lifts are a little too hard on the CNS for me right now, they will have to wait! So here’s the lineup I’ve chosen for the first round of testing:

Workout 1:
Deadlifts 5x3
Pullups 5x5 (assisted w/bands)

Workout 2:
DB Military Presses 5x5
Kettle Swings 5x5b (<3 my Kettlestack!)

Workout 3:
Renegade Rows 3x5
Hack squats 5x5

I’d prefer to do back squats, but I have painful tender points right where you hold the bar on the “meat shelf” of the traps, so going for hack squats instead. Thinking about investing in a Manta Ray, but I only have a standard bar at home.

Recovery time is poor, but I’m picking up some more supps to try and help with that, and I will be tinkering with post-workout nutrition. Want to try beta-alanine and l-leucine and see if they make a difference; I always use creatine, whey, and l-glutamine.

57

I completed a full week of workouts! Go me! XD I think I’m really onto something with this low-rep/long-rest thing; Pavel Tsatsouline was right. :wink: I recover within 36 hours (unheard of) and while there is muscle soreness and stiffness the next day, it’s not nearly so bad. A little massage and Tiger Balm Red and I’m good to go!

I revised my routine after reading Tsatsouline’s Power to the People; this week I did nothing but deadlifts and single-arm barbell presses (a 7-foot standard barbell in my tiny hand is awkward as hell, but it’s a fantastic shoulder workout). I’m going to stick with it for a while before moving on to the routine I laid out above. Easy does it, I’ve got too much invested in this to screw it up by overextending myself too soon. And those two lifts really do give a nice full-body workout, when you do them as Tsatsouline describes. (AKA “Why do my abs hurt?” LOL)

Meanwhile I’ve dropped half a pants size already from carb-cycling, so that’s going very well indeed. Overall, I’m feeling cautiously optimistic about this. Since my doc mandated I stay out of work (and therefore stress) until spring, I should have a chance to make significant headway so long as I don’t get cocky and push myself beyond my limits. The key is to provide a steady challenge without overdoing it; kind of tough for a type-A gal like me. :wink:

Now I’m off to read up on what Tsatsouline has to say about periodization; this week was just a trial run to see if I could even do it!

58

Glad you’ve found something that works for you. The recovery is gold, but dropping half a pants size is wonderful.

59

Hot damn! Not only am I starting to look a little better, I’m even seeing some symptom improvement. :smiley:

I could just be going into a yearly remission cycle again, but the timing isn’t right (usually I get worse during the fall/winter) and this does jibe with my prior experience of working out: if I can just get well enough to get started and give myself the space to recover, the release of anabolic hormones from lifting WILL make me feel better!

Interestingly, a recent study showed that chemo drugs that target b-lymphocytes seem to help CFS patients, sparking speculation that CFS is in fact an autoimmune disease. I might be reaching here, but intense exercise does cause some immune suppression. I wonder if that is also helping me? The key, of course, is to to ride the line between intense exertion and depleting fragile energy stores! Hmmm, could merit more research…

Anyway, this is an unprecedented opportunity for me; being pulled out of work removes the grinding, chronic stressors that knock me down and push me into lengthy crash cycles. Per doctor’s orders, I have at least 4 more months to concentrate on this and try to build myself up more.

I think it would be hilarious to show up back to work in near-figure-competitor shape. :wink:

60

Hoping everything continues on so you feel better!!