Orange Juice Placebo?

[fls]

don't rain on my imaginary parade, fls!

I think you're safe. I don't think you will change your mind just because I point this out. (It may even strengthen the 'effect'.)

Linda

 

[RSLancastr]

It was a band and song. It made me chuckle anyway

It's a line from a song called Rip It Up by Orange Juice

I just now noticed these replies during a re-read of the thread.

Thanks to you both! I was worried that Yaffle had a siezure or something!

 

[RSLancastr]

I think you're safe. I don't think you will change your mind just because I point this out. (It may even strengthen the 'effect'.)

Linda

If my doubts, even early on (that the immediate effect of drinking the OJ was anything more than in my head) didn't prevent it from "working" the next time, then no, your words of reason here probably will not either. No, your replies, along with all the others', are precisely what I wanted when I created this thread. I'm also aware that some studies on the effects of placebos have shown that revealing the fact that the "medicine" which has been "working" is only a sugar pill often did not reduce the perceived efficacy of the pill.

 

[RSLancastr]

Latest update: yesterday evening while at my computer I had one of those cramps in the muscle on the right/front of my stomach.

Impossible to stretch whilst sitting in my wheelchair, and I can't stand, so I stretched it what little I could and massaged it.

I also asked Susan to bring me some OJ. She did. The cramp was mostly gone before she brought it, but I drank it anyway, hoping it would help prevent the cramp from setting in again (these sort of cramps often do, as sitting up puts the muscle in a position where another cramp is likely).

It did not cramp again, but whether or not the OJ played any role in that is anybody's guess.

 

[casebro]

So you haven't learned anything yet.

And you are not going to until you try different things besides OJ.

Sometime you have to suffer for your science.

But now the cramps are more frequent? You hadn't mentioned them except at nights before.

 

[RSLancastr]

So you haven't learned anything yet.

I wouldn't say that, no. This thread has given me much to think about.

But if you mean that I haven't performed controlled studies which would more conclusively show me whether or not the OJ is really doing anything, then yes.

And you are not going to until you try different things besides OJ.

That will be part of it, yes. But it will take far more variations than just OJ vs. Other Liquids. Add to that Sitting up plus NotSittingUp, Just waiting It Out vs. all of the above, stretchingVsMassageVsNothing and you have Dozens of combinations to be tested.

And, keep in mind, for DECADES of this, the BIG question was how to stop the pain, as well as how to prevent it in the first place. The OJ turned out to be one way to stop it. Drank before bed, it usually seems to prevent it. That, along with my reduced salt intake, has cut the frequency down TREMENDOUSLY. Finding out how much of the OJ's seeming efficacy is in my head a matter mostly of intellectual curiosity.

Sometime you have to suffer for your science.

Easy to say when you're not the one waking up feeling like someone has just hit your leg with a hammer. Keep in mind also, the longer I try to "bear up" under the pain rather than just do something which relieves it, the longer I will be making noises which keep my poor Susan awake. Also, the higher my BP is likely to go - no small thing for someone who had a massive stroke largely due to his BP.

But now the cramps are more frequent? You hadn't mentioned them except at nights before.

No, they are not more frequent. Please don't assume that my only cramps are the ones I report here, nor that I report every cramp.

 

[casebro]

OJ has citric acid too ???

But re: the whole placebo thing, the general theory of cramps is that they are an internal muscle problem. NOT a neuro problem. So a direct placebo action is not likely. Unless the patient IS sending a signal to the muscle subconsciously, telling it to cramp up?

They are caused by an imbalance within the muscle. Better circulation might help, if the serum has a constituent that the muscles do need.

Stretching might help. if the stretching were to force something out of the muscle.

All in all, figuring out just what the muscles need, and supplementing with it, is probably the best course.

There are so many items mentioned in the literature, that every patient has to try the shotgun approach himself.

Ideas:

Electrolytes

Vit C

CoQ10

Carnitine (beef is a good source. Maybe the 'beef is bad' idea is actually because patients with probs crave beef for the carnitine, it's not the beef that is bad but the underlying problem? )

Short chain fatty acids (goats milk cheese, or butter, or coconut oil)

Citric acid?

 

[AdMan]

But it will take far more variations than just OJ vs. Other Liquids. Add to that Sitting up plus NotSittingUp, Just waiting It Out vs. all of the above, stretchingVsMassageVsNothing and you have Dozens of combinations to be tested.

Well, you don't have to try all possible combinations--I'd start with a liquid other than OJ (and without any K) and if that works then you've learned a lot right there. You can then start hypothesizing on what else may be causing the effect.

 

[casebro]

Easy to say when you're not the one waking up feeling like someone has just hit your leg with a hammer. Keep in mind also, the longer I try to "bear up" under the pain rather than just do something which relieves it, the longer I will be making noises which keep my poor Susan awake. Also, the higher my BP is likely to go - no small thing for someone who had a massive stroke largely due to his BP.

Don't be thinking you are the lone ranger. I've had a myopathy my whole life. It didn't get a proper diagnosis until I was 50 years old. A dozen doctors had misdiagnoses. In the meantime, I've had hypertension since my teens. And diabetes. And clogged arteries. And post exertional cramps my whole life.

Current BP meds: HCTZ, hydralazine, Minoxidil, atenolol, and lisinopril. And still an episode of 249/170 back in December.

Sound familiar?

So, lately, the every-night-so-I-can-count-on-them cramps that started when I cut down on the COQ10, then disappeared when I went back to the larger dose, proves to me that I am short on COQ10.

And my myopathy is supposedly 1:5000, but the genes have been found in 17% of diabetics. So I think the possibility of sub-clinical metabolic myopathy may be more common than people think. I can't wait for pharmocogenetics to become the rule rather than the exception. No more of this "essential hypertension" but maybe "Casebro, your hypertension is caused by the poor expression of the Nitric Oxide gene. A nitro patch should have been prescribed 40 years ago."

 

[casebro]

Another thought: Quinine

Seems that it works on the cellular level to help Malaria. It works on cramps the same way.

 

[RSLancastr]

Don't be thinking you are the lone ranger. I've had a myopathy my whole life. It didn't get a proper diagnosis until I was 50 years old. A dozen doctors had misdiagnoses. In the meantime, I've had hypertension since my teens. And diabetes. And clogged arteries. And post exertional cramps my whole life.

No, I didn't think I was alone in this. You (and others in this thread) posted of similar, if not worse, nocturnal cramp conditions than the one I've dealt with for forty years now. But I think I am the only one that others are urging to abandon something which helps in favor of suffering more pain in the interest of... science, I guess. So the remark of "you have learned nothing" just hit me wrong, I guess.

Current BP meds: HCTZ, hydralazine, Minoxidil, atenolol, and lisinopril. And still an episode of 249/170 back in December.

Sound familiar?

Oh yes. I'm on 3 BP meds, none of which are on your list. When my hypertension was first diagnosed I had an episode of 300/180, but 249/170 is pretty scary too.

So, lately, the every-night-so-I-can-count-on-them cramps that started when I cut down on the COQ10, then disappeared when I went back to the larger dose, proves to me that I am short on COQ10.

Just don't tell fls. (shh!)

And my myopathy is supposedly 1:5000, but the genes have been found in 17% of diabetics. So I think the possibility of sub-clinical metabolic myopathy may be more common than people think. I can't wait for pharmocogenetics to become the rule rather than the exception. No more of this "essential hypertension" but maybe "Casebro, your hypertension is caused by the poor expression of the Nitric Oxide gene. A nitro patch should have been prescribed 40 years ago."

I finally looked up "myopathy". you (or someone) mentioned it earlier in the thread, and I'm embarrassed to admit that I thought "What does near-sightedness have to do with leg cramps?"

I've never been tested for myopathy. Perhaps I should mention this to my doctor?

 

[AdMan]

No, I didn't think I was alone in this. You (and others in this thread) posted of similar, if not worse, nocturnal cramp conditions than the one I've dealt with for forty years now. But I think I am the only one that others are urging to abandon something which helps in favor of suffering more pain in the interest of... science, I guess.

I was under the impression that you wanted to figure out what exactly was having the effect of relieving your cramps. In fact, in post 7 you said, "I will try the water next time, as well as the sitting up..."

That was the only reason why I was suggesting not having the OJ. Of course if you want to keep drinking it, do so.

 

[Maurice Ledifficile]

Thank you

Any activities which improve circulation (both arterial and venous) can reasonably be proposed to have an effect. There isn't anything in orange juice which can be having an acute effect (beyond some eventual rehydration effects which still aren't going to be immediate).

Linda

The flubber cheque's in the mail.

 

[RSLancastr]

I was under the impression that you wanted to figure out what exactly was having the effect of relieving your cramps. In fact, in post 7 you said, "I will try the water next time, as well as the sitting up..."

That was the only reason why I was suggesting not having the OJ. Of course if you want to keep drinking it, do so.

It was a good suggestion. I appreciated it, and still intend to try it. I did NOT, in these past two nocturnal cramp episodes, but I considered it. When I said that I would try the water "next time", I was not taking some things into consideration. Not only does the severity of the cramp play into how willing I am to experiment with other approaches, but also the husband-wife dynamics between me and Susan on the evening leading up to the episode. Has she gotten any sleep? Have we been arguing? Am I thinking clearly enough, and can I express myself clearly enough, to tell her what I want her to bring? There is more, but this will, I hope, give you a taste of the factors I'm talking about.

I was able to try the "just sitting up" suggestion/hypothesis because I was the only person involved, and the pain was not great enough for me to be making noises which would wake Susan.

Look, if all this is doing is bothering people because I appear to just be whining and not taking anyone's advice/suggestions seriously, perhaps this whole thread was a mistake.

 

[EeneyMinnieMoe]

Hmm. Well, you could arrange for someone to do a blind test on you.

You give that person (such as someone you live with or who visits you regularly) instructions to fill empty orange juice bottles in your refrigerator with water with orange food coloring and sugar and hand you real orange juice one day and water+food coloring other days.

If they ask you how you feel afterwards and take notes, they can determine if it is a placebo or not.

Or you might just be thankful that it, whatever it is, seems to work.

Also, if OJ works magic, so should eating three apricots at once or half a cup of parsnips. According to one source, they have as much potassium as half a cup of orange juice.

If choking down molasses doesn't relieve your cramps as easily as drinking orange juice does, it is safe to assume that it is a placebo.

 

[RSLancastr]

Hmm. Well, you could arrange for someone to do a blind test on you

You give that person (such as someone you live with or who visits you regularly) instructions to fill empty orange juice bottles in your refrigerator with water with orange food coloring and sugar and hand you real orange juice one day and water+food coloring other days
If they ask you how you feel afterwards and take notes, they can determine if it is a placebo or not.

It would have to taste closer to OJ than just sugared water would. And be flavored with something which lacked potassium.

Or you might just be thankful that it, whatever it is, seems to work.

That's where I have been for several years. It wasn't until some remarks Susan recently made that I decided to start this thread.

Also, if OJ works magic, so should eating three apricots at once or half a cup of parsnips. According to one source, they have as much potassium as half a cup of orange juice.

If choking down molasses doesn't relieve your cramps as easily as drinking orange juice does, it is safe to assume that it is a placebo.

Problem #1: The bottle of OJ I usually down which does the trick is 10 Ounces. Perhaps less would do, I don't know. But, to get that amount of Potassium, from what you say, I'd have to eat more than six apricots or one and a quarter cups of parsnips, which leads us to

Problem #2: I hate apricots and parsnips. There are other potassium-rich foods I cannot stand, such as bananas and spinach.

But thanks!

 

[casebro]

I finally looked up "myopathy". you (or someone) mentioned it earlier in the thread, and I'm embarrassed to admit that I thought "What does near-sightedness have to do with leg cramps?"

I've never been tested for myopathy. Perhaps I should mention this to my doctor?

They usually test for CK, or CKP. Same thing, it's a muscle breakdown product. Creatinine Kinase? Creatinene Kinase Phosphotase? They usually check it if a heart attack is suspected. Then they go and break it down into sub categories, one of which is strictly heart muscle. That is an indicator of dying heart muscle, the dividing line between angina and 'heart attack'.

Back when you were healthy, did you ever "work so hard you pee'd blood" afterwards? It wouldn't have been blood, but another muscle breakdown product called myoglobin. It sinks to the bottom in the toilet bowl, because it is more protein, blood is more fat and mixes in water.

But if you are just malingering ( ) around the house, you are probably not going to kill any muscle cells, so probably won't show on the tests.

 

[EeneyMinnieMoe]

Isn't it ironic that the very things that could have helped your cramps were things that you couldn't stand to eat? If only you had liked bananas in your youth.

It's almost as though the world wants you to be in pain.

Offtopic- has anyone else heard people say that "You are allergic to the things you like most"? A lot of people say things like "When I was a kid, I found out I was allergic to strawberries/chocolate/nuts, which sucked cause I always LOVED it!"

Is that true? Or is that an urban legend?

And if it is true, why would it be true? What's the correlation?

 

[RSLancastr]

Isn't it ironic that the very things that could have helped your cramps were things that you couldn't stand to eat?

I'm not sure - let's ask Alanis Morisett.

Similarly, the thing that I loved to eat the most - salt - is largely responsible for my having my stroke.

If only you had liked bananas in your youth.

...and had hated salt. But then, who knows? Maybe a banana-liking, salt-hating RSL would never have created the StopSylvia web site!
It's almost as though the world wants you to be in pain.

Offtopic- has anyone else heard people say that "You are allergic to the things you like most"? A lot of people say things like "When I was a kid, I found out I was allergic to strawberries/chocolate/nuts, which sucked cause I always LOVED it!"

Is that true? Or is that an urban legend?

And if it is true, why would it be true? What's the correlation?

I've never heard it. If there is any truth to it, perhaps overeating something builds some element of it up in a person's system to the point where an allergic reaction happens. Plus, if you were allergic to something you disliked the taste of, you'd be far less likely to find out, unless the allergic reaction was so severe as to be triggered by only a taste of the substance.

 

[fls]

Please note that it isn't the potassium in the orange juice which is having an effect. Most of the potassium in your body is stored in your cells, so to actually affect potassium stores through supplementation in the face of low potassium takes hours to days. Even if the potassium in the orange juice would somehow magically get immediately distributed into your muscle cells, the amount is too trivial to make a difference. Diets low in potassium aren't usually a problem because the kidney simply holds on to potassium. Some drugs specifically interfere with that process, causing you to fail to hold on to potassium (a kind of drug which is often used to treat hypertension). And some medical conditions can lead to increased losses of potassium.

While you wondered about the nature of the effects from your ritual of taking orange juice, I didn't get the impression that this meant you wanted to perform experiments...once you had a routine which was sufficient to keep your problems tolerable, you were mostly curious about why. If I gave you the impression that I wanted you to stop taking the OJ, I apologize. If you have a ritual that gives you satisfaction, why bother changing? I was just pointing out that trying to figure out whether a particular routine has a specific effect is difficult under circumstances where most anything will be found to "work" anyway. The advice you are getting to try various things simply plays into that.