Some Recent Treatment Findings

TheSqidd

Member
Joined
Oct 10, 2022
Messages
11
Reason
DX FIBRO
Diagnosis
09/2022
Country
US
State
MI
I’m going to keep this short because I tend to ramble. And since some things work for some but not others, I figured I would post this up to “plant seeds” and readers can try them out/ custom tailor them for their needs.

First, a little about me. I’m an absolute nutcase by most people’s standards. If I do something it’s to the extreme. I was a pro Superbike racer for a decade. Then I got into bodybuilding for a decade. I’m now bodybuilding in the winter and mountain biking (MTB) in the summer. I’m an absolute psycho when it comes to eating (it’s a bodybuilding thing). I’ve tried every eating strategy. I keep track of every calorie, macro and some micronutrients that go in my face every day. I have an Excel file with what I ate every day for the past 12yrs. I’m 50 now. I work a LOT and hard. I have my own business so the stress is high. I absolutely refuse to let Fibro beat me down (even though it does from time to time).

Hydration:

This moved the needle a lot for me. Because of bodybuilding/MTB I already stayed pretty hydrated. On a normal day I drank 1-1.5gal of water (more on hot ride days). But I read a few things on Fibro and hydration and decided to go absolutely bonkers on making sure that I knew how to get properly hydrated and then started practicing it. I noticed an immediate difference. I’ve almost eliminated the pain I experience at night that wakes me up and won’t let me get back to sleep. Especially in my legs which frequently felt like they were in fire. It also helped out with the brain fog quite a bit during the day.

To make sure I was hydrated correctly when I started this experiment, I got a bunch of Nuuns electrolyte tabs and started putting them in my water. I upped my water intake to 2-3gal/day. Most importantly I go to bed at 10pm and drink 32oz of water with electrolytes. I have 32oz more ready to go next to my bed and I drink the second bottle about 1:30-2:00am. When I get up at 6:00am I drink another 32oz. Then another 32oz 1.5hrs later. I drink 32oz with every meal. And I’ll slam 32oz between meals too.

One thing of note. You get more effective hydration of you slam at least 20oz of water at a time. It skips your stomach and goes right into your small intestine where it absorbs better/faster. So, get used to chugging.

I no longer use the Nuus tabs. They’re expensive and have carbs in them (more on that later). Plus, they interfere with intermittent fasting. I mixed up sodium and potassium citrate 50/50. Using a 1/8tsp that gives you 250mg of each. I put that in 32oz of water. You can hardly taste it. It gets you your electrolytes and it doesn’t interfere with fasting.

Keto:

I was eating keto before keto was cool. But I stopped when started MTB because I needed the carbs for that. In retrospect when I used to eat keto I was “treating” my Fibro and didn’t know it. Because I didn’t know I had Fibro. I just thought I was getting old and was constantly over trained. Everything hurt all of the time and I got a lot of brain fog from lack of sleep. But I thought that was just because I push my body really hard. Only after I found out what Fibro was did I start to piece things together and start working with my Dr (I had been telling him I felt horrible and it was getting worse every year before then but he brushed it off).

Anyway, after getting diagnosed with Fibro I tried to make carbs work with it. I made some small progress, but nothing significant. I decided about 30 days ago that I may just have to give MTB up and went into keto again for the first time in a long time. The Fibro improvements were profound.

Here is the thing about keto. If you’re going to do it, you can’t straddle the fence. You have to go full bore keto and understand how it works. There is no “keto foods” or “eating keto”. Keto is a state your body goes into. The threshold of what you can eat while being in ketosis is going to be different for everyone. IF YOU ARE NOT DOING FINGER PRICK BLOOD TESTS YOU DO NOT KNOW IF YOU’RE IN KETO. Some people like me can get into keto very easily and tolerate a lot of protein. Some people like my wife doesn’t get in easy, can’t tolerate much protein and looking at a carb will knock her out of ketosis for days. If you want to try keto, don’t half arse it. If you do you will never know if you actually got into keto or not. And if you don’t get in, you don’t get the benefits. Read some books. Watch some YouTube videos. Do some research. Get ready to change your entire eating lifestyle. And most importantly get yourself a keto blood tester and test strips.

Also, if you are not ready to track all of your calories and most importantly macros (protein, carbs, fat, fiber) with precision you will not be able to stay in ketosis. I do it on an Excel sheet. There are all sorts of apps out there for it too.

Also, also, keto is not a “I’ll try it for a week”. You can get into ketosis in 1-3 days. But it takes at least a month before you transition into a “fat burner”. I’ve also noticed that I seem to take another step at about the 60 day mark.

Keto is a commitment.

Fasting:

I have been intermittent fasting (IM) for just about forever because it’s the way my body likes to eat. I generally eat all of my food in a 8-9 window the fast for the rest of the 24. If I step outside of that window it’s because I went on a long MTB ride and there just isn’t the time to eat that many calories. I’m not sure how much IM helps with Fibro because I always do it anyway. But, long term fasting absolutely helps (30-48hrs). I stop eating Saturday evening about 6-7pm and don’t eat again until 10-11am Monday morning. This is hard to do if you eat carbs because you have to go through the “carb fog” on your way to a fasted state. If you’re in keto it’s easy, you have already been through the carb fog when you went into ketosis so you don’t get the brain fog and feel starved (you’re running on your own fat stores). Yes, you will get hungry. You won’t die, I promise. I’ve fasted for 10 days before. It wasn’t a big deal. Just drink lots of water with electrolytes and don’t do any strenuous physical activity.

I hope this helps some people.
 

sunkacola

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Hi Squid, I am glad that some things worked for you, and it's always heartening to see someone who is really working with their system to manage fibromyalgia. As I mention in my advice post on managing it, every single person with fibro is different, and the things that help one person may make another person's symptoms worse, so there is never anything that works for everyone.

For some people, fasting and going into keto is very damaging, and your promise that it won't lead to death doesn't take into consideration all of the factors that are involved with any one person's health and well being.

Many of us have other disorders alongside fibro which would be greatly exacerbated by going into keto or fasting and it could possibly lead to death in mose individuals.

I think it is dangerous to recommend or promise such things to everyone on an open forum with people from all over the world because it is not a statement anyone can stand behind, applied to everyone.

I encourage everyone to try whatever non-medication medhod they think might help, and find out. But to do so safely, and with a doctor's approval if it is something as serious as keto or fasting.
 
Last edited:

TheSqidd

Member
Joined
Oct 10, 2022
Messages
11
Reason
DX FIBRO
Diagnosis
09/2022
Country
US
State
MI
Many of us have other disorders alongside fibro which would be greatly exacerbated by going into keto or fasting and it could possibly lead to death in mose individuals.
I was not addressing the potential for other disorders. I was clearly talking about Fibro and Fibro only. If a person has other disorders, they know it, and they should adjust accordingly. As you would with every other facet of life that has multiple variables. If I were giving advice on let's say high performance driving I'm clearly not addressing blind people.;)

I did not say that going into Keto can't kill you. Regardless, do you have anything you can link me to that shows specific a disorder(s) that when mixed with Keto will kill them? I'm genuinely curious. I have gone way, way, way down the keto rabbit hole and I have never heard a peep about it's potential to kill someone.

As far as fasting goes, same thing. Do you have anything you can link me to that shows specific a disorder(s) that when mixed with fasting will kill them?
 

cookiebaker

Very helpful member
Joined
Jul 26, 2022
Messages
654
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DX FIBRO
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07/2022
Country
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WI
If a person has other disorders, they know it, and they should adjust accordingly.
not necessarily true... they might suspect something, but have no proof of it.. or are in the processes of finding things out.

While I am happy that these things have helped you, it may not be right for everyone.
 

TheSqidd

Member
Joined
Oct 10, 2022
Messages
11
Reason
DX FIBRO
Diagnosis
09/2022
Country
US
State
MI
not necessarily true... they might suspect something, but have no proof of it.
I'm not sure what argument you're trying to make here. Are you suggesting that people shouldn't try new things because they may have something else going on they don't know about? Wouldn't that prevent all people from every trying something new forever? That seems silly.

it may not be right for everyone.
I never suggested that they were.
 

sunkacola

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@TheSqidd , No one here is trying to argue with you.

And, no one here is going to engage in an argument with you because that is not what we do here.
You stated something that helped you.
Cookiebaker and I responded by noting that such things are not for everyone, and your saying "I promise it won't kill you" is an overstatement, and could be potentially dangerous for some people.

You want links to places that prove what you suggest could be dangerous or fatal.

Outside links are not permitted on this forum, so there will be no link posting.


Now, we have stated our opinions and cautions.
There's no point in continuing with this.
 
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