ME/CFS & PCOS - AIP?

[discoveringmyultimate]

Back Story:

 

I'm 26 and I have had Myalgic Encephalopathy/Chronic Fatigue Syndrome and PCOS for 14 years. Recently, I've also had chronic headaches and high blood pressure. I have absolutely no desire to spend time and money going to the doctor or taking medications with side effects. I would like to get off the blood pressure medications and birth control (for PCOS) I'm currently taking and I really want to see a difference with my headaches (unaffected by medication and, sometimes, so bad all I want to do is cry).

 

I did a whole30, which turned into a whole45. I lost a little weight and was told my skin looked clearer, but unfortunately didn't see any other benefits (no energy increase, didn't sleep well, pain didn't go away, etc.). After reintroduction (after a fashion) and quickly gaining some weight back due to too much dairy, I am now eating fairly strict paleo.

 

Question:

 

Somehow I did not realize until yesterday that PCOS may be considered an autoimmune condition (and according to Practical Paleo, ME/CFS and other chronic inflammatory conditions may also be helped by AIP)! Should I do another W30, but on AIP?

 

To be honest, the W45 was horribly difficult for me physically. I found it very draining on my limited energy stores and very emotionally draining to be putting so much effort in without seeing results. I also LOVE tomatoes, peppers, nuts, seed-based spices, etc. and used them a great deal during my W45. I believe I could eat eggs without an issue - I've been eating lots of them without any adverse effects, plus I don't have any of the symptoms of an egg allergy. However, maybe I missed the reason eggs are not allowed. If all of you wonderful experts think I should eliminate eggs, I will try for as long as I can.

 

Basically, the thought of doing an AIP W30 is incredibly daunting. I am willing to consider just about anything to improve my health and energy levels, but wanted to ask for some expert advice! Is it a good idea for me to try and do AIP? Is there any point in doing a shorter version - i.e. a 7 or 10 day AIP - to get a sense of which items (eggs vs nightshades vs nuts vs seeds) I might be sensitive to? If I don't do any kind of AIP right now, do you have any other suggestions for my diet?

[missmary]

 

To be honest, the W45 was horribly difficult for me physically. I found it very draining on my limited energy stores and very emotionally draining to be putting so much effort in without seeing results. 

So, you've been struggling since age 12 with these health issues? I'm sorry to say it just isn't realistic to expect results so quickly. Having the mindset that this is "so much effort without results" is bound to leave you disapointed.

 

Why did the whole30 feel ike so much effort? Was is cooking that was new for you? Or did feel you weren't getting as much energy from food as you were used to having? If it's the later, you might want to post some typical days meals for us to critique. Lots of people go too low calorie or too low carb during their 30 days, and that can impact energy levels quite a bit. If it is the cooking, we can help with some ideas to make that easier too. 

 

On AIP, yes, it might help, but my gut feeling is that you just need more time. If you found regular whole30 daunting, I would suggest to stay there--keep whole30ing on until it seems easy before you start tweaking and adding AIP restrictions. Also I want to be perfectly clear on this point: this way of eating only helps for as long as you keep doing it. If you think you will be able to do just 30 days of one or 30 days of the other, then go back to how you were eating before you will lose any progress you have made. 

[discoveringmyultimate]

So, you've been struggling since age 12 with these health issues? I'm sorry to say it just isn't realistic to expect results so quickly. Having the mindset that this is "so much effort without results" is bound to leave you disapointed.

 

Why did the whole30 feel ike so much effort? Was is cooking that was new for you? Or did feel you weren't getting as much energy from food as you were used to having? If it's the later, you might want to post some typical days meals for us to critique. Lots of people go too low calorie or too low carb during their 30 days, and that can impact energy levels quite a bit. If it is the cooking, we can help with some ideas to make that easier too. 

 

On AIP, yes, it might help, but my gut feeling is that you just need more time. If you found regular whole30 daunting, I would suggest to stay there--keep whole30ing on until it seems easy before you start tweaking and adding AIP restrictions. Also I want to be perfectly clear on this point: this way of eating only helps for as long as you keep doing it. If you think you will be able to do just 30 days of one or 30 days of the other, then go back to how you were eating before you will lose any progress you have made. 

 

That was not my mindset going into or during the W30. Unfortunately, as I did the W30 and my ME/CFS seemed to be getting worse, that was the overall effect. As I continued with it, it got easier in some ways, thankfully, but my energy got lower and lower. I'm in the middle of an ME/CFS crash, from what I can tell, which is making everything difficult (these days, I can't even brush my hair without resting my arm several times). I'm not blaming the W30 for that. There's at least one thing I mentioned below that I should have realized sooner to help myself. But it did happen during the W30 and contributed to the final result - a few positive notes, and no other changes. I'm aware we can't pick and choose what will happen during a W30, but my comment simply had to do with the fact that this is a drastic undertaking for me and it was very emotional that, for example, my 3 months of daily headaches refused to budge.

 

I love to cook, so that's not new, but the load of cooking on a weekly and/or daily basis was much more than I expected. I realized (very slowly aka it only clicked by week 5 or 6!) that I was bankrupting myself of energy on the weekends between grocery shopping (multiple stores) and my weekly cookup. That meant that I was going into the next week at a deficit, which just kept getting worse. Since week 5/6 of my W30, I've mostly stopped doing a weekly cookup and have instead taken a few times throughout the week to do a little advance prep (boiling a dozen eggs, etc.). I've also simplified what I eat. More raw veggies and salad rather than having to cook a protein and a veg. I'm happy to post meal plans if you think it will help (For a late breakfast this morning, I had 2 eggs, 3 slices of bacon, grape tomatoes, cucumber, a banana, almond butter, and guacamole).

Cooking ahead I'd love some ideas for. I think the idea of a weekly cookup is great, but unfortunately my energy levels can't support that right now. Grocery shopping usually wipes me out for the rest of the day and possibly the whole weekend.

I think by the end of W30 and with eating paleo now, I have figured out the amount of food to get from meal to meal without starving - I'm eating at least the minimum requirement of fat with every meal and usually double. I've cut down to 1 palm sized serving of protein rather than 2, and I think that's working for me as well.

 

I have no intention of going back to how I was eating before (mostly healthy, lots of home cooked meals and veg, but including dairy, grains, etc. and with a french fry addiction). I've already changed that drastically by going from w45 to paleo. And I'm interested in doing another W30 at some point. I just have to pick a moment when I will better be able to handle the challenge of the W30 than my previous one and hopefully when I will have a little less on my plate.

 

I hope I answered all of your questions. Sorry for the length - Let me know if I can clarify anything else!

[missmary]

the example meal you give isn't really enough to know if there are major tweaks we could offer, so yes, post more if you want more feedback on that. Just looking at that meal alone I would say increase protein. 1 or 2 more eggs or a different protein source in addition to the eggs (bacon is pretty much a fat source). I would skip the banana and almond butter to make room for the protein, but these are small adjustments. I do still think you might just need a good long time eating this way before things will start to turn around.

 

I think simplifying your food can be a good approach, but I don't agree with limiting your protein. If simple means salad without meat that is a mistake for lots of reasons. You need food that will support your activities and your healing, and salad isn't enough. Toss a few sweet potatoes in the oven and cook some meat that you can easily grab for each meal, but don't skimp on that. I make baked meatballs a lot, but sometimes just cook a patty of ground meat without seasonings (just sea salt) when I'm feeling rushed. Roasted chicken thighs, and beef or pork in the crockpot are also pretty low effort and easily added to a meal of whatever veggies you have on hand.

[SarahInParis]

You might want to check out Sarah Ballantyne's new book.  Her AIP program (The Paleo Approach) is now considered the most thorough of all the AIPs out there - the book is mammoth, but the advice is sound.  I did check in here while doing a month of AIP (her rules, not the W30 ones) but in the end I think her approach is a little more flexible in some ways and since AIP is so very strict anyway I'm not sure I'd advocate for overlapping the two approaches (unless like me you just want here for the community support and less for the "rules").  

 

What might be interesting (though scary) for you about her approach is the belief that most autoimmune conditions take a long time (many months) to get under control and heal - so the 30 days is usually just a starting point for most people, not the end of the goal.  

 

I too like to cook and have always enjoyed the planning, shopping, prep and was still overwhelmed by the advance planning and thought needed to succeed in this way of eating (I'm in the process of transitioning from AIP to Wahls Paleo Plus, another demanding eating plan).  But actually it's getting easier, I've decided to sacrifice variety in exchange for home-made freezer meals a few times a week, and I eat the same thing for a couple of days.  It was harder at first because I was still in the mindset of cooking for my whole family, but now I basically plan and cook my food for me, and the family is frankly eating easier/faster stuff (less healthy overall) than they were.  So now that I've worked out the rhythm of foods I need over the course of a few days and have identified the foods I like, recipes that work, variations on those, it's going pretty smoothly - but it's taken about 2 months to reach this point.   

[mtnerak]

Also if you are following the AIP it is not just following it for 30 days and then starting a reintro process-- especially if you are suffering from daily headaches.  You may be following it strictly for for several months before things calm down enough that you can start to reintroduce things.  I have been on it for 7 weeks now have tried to reintroduce 2 items but because of my daily headaches I have not gotten very far and don't know if those foods are okay or not because weather, other foods--histamine, hormones, lights-- pretty much anything can set off one of my headaches and I do take meds for mine.   The  positive thing for me is that my headaches have calmed down enough for me have a better idea of triggers and my periods are no longer so painful.  So at this point I am not worrying about doing the reintro but if I have a day where my head feels really good I will try to reintroduce something then keep notes and see how the next few days go. While the two things I have reintroduced I think were ok, I think there were other things that caused my headaches I am not going to chance it and I am going to reintroduce again later on.  

[mtnerak]

 

 

 

 

 

I'm 26 and I have had Myalgic Encephalopathy/Chronic Fatigue Syndrome and PCOS for 14 years. Recently, I've also had chronic headaches and high 

To be honest, the W45 was horribly difficult for me physically. I found it very draining on my limited energy stores and very emotionally draining to be putting so much effort in without seeing results. I also LOVE tomatoes, peppers, nuts, seed-based spices, etc. and used them a great deal during my W45. I believe I could eat eggs without an issue - I've been eating lots of them without any adverse effects, plus I don't have any of the symptoms of an egg allergy. However, maybe I missed the reason eggs are not allowed. If all of you wonderful experts think I should eliminate eggs, I will try for as long as I can.

 

 

 

 

You are not necessarily looking for an immune mediated allergy, but more for an adverse effect from them.  For some people eggs trigger migraines or headaches, but you don't know until you stay away from thing for several months and then reintroduce.  You want to take all the potential triggers away long enough to give your intestines time to heal and the mucous layer time to thin out so you will more easily see a reaction too.  

[Bet]

Hi, I did AIP. I also have several AI diseases (Hashi's, Chrohn's Celiac) I was eating pretty clean before I found W30, so I thought doing AIP would be a good idea. Like you, I was eating eggs (a lot since I gave up grains) and thought I didn't have a problem with them. But after 5 days with no eggs, the sharp pain I always had in my elbow disappeared and has not come back. Now I will occasionally eat something that has eggs in it, but I no longer eat eggs. I've always had a nightshade sensitivity, but I used to have cooked tomato sauce a lot. I have eliminated that. It does make a difference. The effects can be almost invisible if you eat these foods all the time, that's why you need to eliminate them.

 

It will take awhile to reverse years of damage. I get the cooking issues. All I can tell you is that with time, you find short cuts that can help. Like this weekend, I had a lot to do and didn't feel like cooking all day. So I bought a rotisserie chicken at Whole Foods for my lunches for the week. I added in some good frozen green beans and that's my lunch. I bring a little bottle of olive oil to work and put that on the green beans for my fat.

[SarahInParis]

Apparently egg intolerance is pretty common (in particular to the whites).  

 

I agree about often needing a longer time frame for AIP healing, but I also think we need to be careful about that advice, because it can feel way too overwhelming to "try" a really extreme diet for many months, and a great many people won't even consider it because of that.

 

My thinking was that I could do anything for 30 days, and that if after 30 days I didn't see any benefit at all that itself would be good information.  In fact, I felt a huge surge of energy/feeling great about 3 weeks in. No major symptoms changes, but then again I wasn't suffering from an AI condition to begin with.  In the end I decided to start reintroductions following a very slow, methodical and strict approach after my one month full AIP, knowing it would take several months to work through all the eliminated foods in controlled testing.  

 

I'm trying egg yolk tomorrow! Hoping it works & that I'll be able to welcome mayonnaise back to my life!  

[praxisproject]

I found an improvement when I reduced my nightshade load, but after reduction, I didn't seem to get any improvmeent when completely eliminating them. I did however discover that dosage of some of these things can be a factor, if I had a meal with eggplant, tomato, chilli, capsicum, etc then it was incredibly high in nightshades. When I eat too many now, I can tell, as my inflammation level goes up. Taking me back to a lower baseline also seems to have let my body be able to recognise when it's too much, it simply couldn't do that before.

 

It seems daunting, but keep in mind the reward could be elimination of headaches. The quality of life improvements I've had since my first Whole30 are many, but some of them have taken a long time to show up.

 

If you're not ready for an AIP, some things to consider eliminating:

eggs - or even just egg whites to start with (if you take those out, must increase protein)

nuts

nightshades

 

Some things to think about adding and consume as mandatory:

Bone broth

Liver & organ meats

Enough protein

 

If you body isn't getting enough of something, it may struggling in fixing things internally. I've recently discovered I have a number of serious vitamin deficiencies, but they aren't detected via blood test. Bones, organ meats and protein contain many essential building blocks for all kinds of functions in the body.

[Bet]

Yes, what you add in can be just as important as what you take out. I use bone broth in most of my meals and I feel it has helped me heal.