RA and paleo AIP - How are you progressing?

[memmistubbs]

I have had RA for 34 years.  Have been on Methotrexate for about 20 years.  Would love to decrease pain, increase mobility and function, avoid biologics, and eventually be drug free!  I would also like to clear up skin issues, dental issues, occasional atrial fib, parasites, and klebsiella pneumoniae - sleep better, too.  Began the paleo autoimmune diet 4 weeks ago.  Am still working on the other components. Felt a bit better in just five days -- digestion more comfortable, steady blood sugar and energy, more alert, a little less pain -- but had a relapse last week.  May have been from too much fruit while travelling a lot.  Overall, I like the way I feel eating this way and enjoy less sugar cravings, and am committed to stick with it to reduce inflammation and hopefully learn what what causes me to flare. Sure is a lot to learn!  Would love to hear how others are progressing!  Thanks.  Memmi

[Mary]

Hi Memmi!
I was diagnosed with RA in June 2013 after my first and very severe flare (after the birth of my 1st baby). I started AIP Oct 2nd, so have now been doing it for over 5 months. I noticed very little improvement in my joint pain and swelling initially. The last month or two I've been able to taper down my Prednisone slowly. It feels like slow progress, but at least it's in the right direction. I also noticed that my sugar cravings (and basically cravings of any kind) disappeared very quickly (2 days) after starting AIP. The first two weeks I had very limited fruit and no concentrated natural sugars (maple syrup, dried fruit, honey) as recommended by my nutritionist. Since then I've added other fruit, and in the last week or so started trying out some AIP desserts which use honey and maple syrup.

The only other symptom besides the RA that I'm having issues with is excessive burping. It started during pregnancy, and hasn't stopped since, even with AIP and some supplements. Not sure what's going on with that. I have thought about SIBO, but really don't know if I have it. And, my nutritionist isn't very supportive of trying to do low FODMAPS in addition to AIP. He thinks that it's too limiting of a diet. Otherwise my digestion is pretty good, I think. Occasionally I have heartburn, but it's rare, and maybe stress related? Not sure.

It sure has been a learning process! I gradually try to learn more and more (like how to cook organ meat, how to make fermented drinks, how to make bone broth)...can't tackle everything at once, but little by little it will work!

Mary

[carmz]

I was diagnosed with RA seven years ago, also after the birth of my first child. What an unwelcome baby gift that was!! I have been on several meds, MTX (horrible nausea), sulfasalazine (depression), hydroc..something (no pain relief), Humira & Actemra (didn't work & excessive fatigue). I'm doing so much better now on no meds and eating carefully. However, I have read that diet based "healing" works best for people who haven't had the disease too long so maybe that is why I am able to go med-free. I've also decided that I am better able to deal with occasional flares than to have such chronic fatigue that I struggle to get out of bed.
I'm still working on going full AIP which I think will help me too. I just need to give up chocolate (and my occasional glass of wine)



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[Mary]

carmz, nice to hear that it's helped so much! I've been on Cimzia (didn't do anything), and now Enbrel (helping some). There aren't any other drug options while I'm breastfeeding, anyway!

I've had very little fatigue, though every day I have joints that are swollen and painful. I think the diet has helped decrease the side effects of Prednisone and helped me in other ways, even if I haven't been able to get off the medications yet.

[memmistubbs]

Good to hear from you both!  

Today is the start of my fifth week on AIP.  I try to incorporate something new every week if I can (and maintain the other new good habits).  

The first four weeks were focused on food-related things like starting the AIP diet (whew!), incorporating liver (finding it, learning how to cook with it ...), and finding foods to travel with.  Also got a new OT, got new hand splints, found a better toothpaste, and began oil pulling.  

This week I am adding short walks outside and am shooting for an earlier bedtime. (Shooting for midnight to 12:30 am, believe it or not!  But I do have the freedom of sleeping in as late as I need to, so I usually feel rested.).  Will know by the end of the week which became a habit.  (I sorta let the universe guide me in this.  Less stressful that way.  Sometimes I notice that I am inconsistent with the new thing i intended to add but see that I DID develop some other new habit, so I stick with that one.  There is no shortage of things to try! 

I want to start rotating my foods a bit so I can try to figure out what makes me flare. I prepared a 4-day food rotation chart which I will begin to incorporate very lightly now;  will try it fully some week down the road when I am not travelling as much.  I have three kids.  My daughter is a senior in high school here in Decatur, GA (near Atlanta) and plays soccer.  My younger son is a senior at Centre College in Ky and plays lacrosse.  My older son is married and teaching and lives nearby.  My husband and I go to all the soccer and lax games since this will be the end of their sports careers.  I travel to KY about twice a week, with an overnight or two each time. Living out of coolers, mini-fridges and microwaves while travelling has been super hard but I'm getting better at it, particularly as I find more staples to take along.  (Would love suggestions!) Watching my family eat my old favorite foods was also super hard for the first few weeks but I think I'm over that hump!  Yay!  I am committed to this. I still have lots of the plan to incorporate but am getting there. Am suspicious of sugar, oranges and clementines (joint pain), and bananas (itchy skin around nose), so am skipping those for a little while. Unfortunately I just mastered making plantain chips but those raw plantains i just bought will have to wait. NOTHING is worth joint pain or swelling, is it!

Take care!

Memmi

[memmistubbs]

carmz - How long have you been eating better? How soon did you notice a difference? Regarding chocolate ... I finally gave that up by subbing carob. Definitely not the same but still very helpful. I keep little treats in the freezer made of carob, coconut oil and coconut flakes (and sometimes vanilla, cinnamon or turmeric) to help with cravings. Rarely reach for them now but may need some on Easter day .

[Mary]

Apr 15, 2014 23:52:28 GMT -5 memmistubbs said:

carmz - How long have you been eating better? How soon did you notice a difference? Regarding chocolate ... I finally gave that up by subbing carob. Definitely not the same but still very helpful. I keep little treats in the freezer made of carob, coconut oil and coconut flakes (and sometimes vanilla, cinnamon or turmeric) to help with cravings. Rarely reach for them now but may need some on Easter day .

Do you have a recipes for your treats? I might just try it! I used to love chocolate, and recently bought some carob to try, but haven't made anything with it yet. For the first months on AIP I didn't even attempt to make treats -- just ate lots of fruit! (And my sister-in-law loaned me a machine that you can use to make something close to fruit sorbet. That's been great since I used to love to eat ice cream.)

[jillh]

I was diagnosed 17 years ago and put on Methotrexate.I took it for awhile but was so tired that I had to stop (it was that or drop out of college). My next Rheumatologist decided I actually had Fibromyalgia because my RF had normalized. I was officially diagnosed with RA again with a bone scan in 2012. I'm not currently on any conventional medication because we are trying to conceive and I don't want to chance it. I started the Paleo diet last summer because I was having a flare and was trying everything I could to avoid medication. Initially just the paleo diet with no nightshade or nsaids seemed to do it for me (biggest indicator I have is tingly hands and feet from carpal tunnel and tarsal tunnel). This February I started to have increased inflammation and tested with a high sed rate in March so I decided to do the full AIP. I am into it 3 weeks now and have also been taking curcumin that my Naturopath prescribed. I'm not sure if it is the AIP or the curcumin, or a combination, but I feel like my inflammation has really gone down in the last week. I have some minimal tingling and sensation changes still and I'm hoping that that will go away soon!

[emilyannw]

Hi all! So good to hear from folks with RA on the same AIP/Paleo path. I was diagnosed a little over two years ago, and have been doing the AIP for RA for 9 months. This way of life has helped me wean off prednisone and sulfasalazine, leaving me just taking Plaquenil (also called hydroxychloroquine), which is a pretty mild drug comparatively (but still with scary side effects). My improvement using AIP has not been linear - meaning that I have had ups and downs, times with more inflammation, flares, etc. These flares have always coincided with trying to wean off birth control. As in my body/RA seemed to like the constant estrogen from the BC, and goes into a flare when I take it away. I want to come off it for gut-healing reasons - not because I want to get pregnant. I am just now getting over the BC-associated flare, hoping that my hormones are leveling out and that I will be feeling less inflamed soon. But overall I really like AIP - have found it helpful, have been able to decrease medication - and plan to continue indefinitely.

[leighbra]

So great to talk to others with the same issues. I first started having autoimmune issues after the birth of my first son. I developed uvietis (inflammation) in my eyes and after going on daily prednisone drops it normalized. After trying to conceive #2, went on fertility drugs and the muscle aches and inflammation started. The drugs helped and we Had my second son. Again at the three month mark, the autoimmune issues returned and I developed widespread inflammation. Researched daily and came across SCD. Went on it and weaned myself off of it and remained gluten free. I ate very cleanly, worked out and had more energy that ever before. So much so, that we conceived my third son:). Ate pretty cleanly during my pregnancy and afterward. With a move cross country and the stresses of daily life with three kids, I stopped taking care of myself and the widespread inflammation returned. I had been tested before, but my RA factor came in as negative. I am convinced that I do have RA and will do my best to control it on my on. I have been on AIP for three weeks and have had highs and lows. I have followed if strictly and am beginning to climb the stairs and get our of bed without being in agony. Anyone have any tips for exercise? I try to walk daily and do some starching and yoga poses.

[jillh]

Apr 17, 2014 14:05:17 GMT -5 leighbra said:

So great to talk to others with the same issues. I first started having autoimmune issues after the birth of my first son. I developed uvietis (inflammation) in my eyes and after going on daily prednisone drops it normalized. After trying to conceive #2, went on fertility drugs and the muscle aches and inflammation started. The drugs helped and we Had my second son. Again at the three month mark, the autoimmune issues returned and I developed widespread inflammation. Researched daily and came across SCD. Went on it and weaned myself off of it and remained gluten free. I ate very cleanly, worked out and had more energy that ever before. So much so, that we conceived my third son:). Ate pretty cleanly during my pregnancy and afterward. With a move cross country and the stresses of daily life with three kids, I stopped taking care of myself and the widespread inflammation returned. I had been tested before, but my RA factor came in as negative. I am convinced that I do have RA and will do my best to control it on my on. I have been on AIP for three weeks and have had highs and lows. I have followed if strictly and am beginning to climb the stairs and get our of bed without being in agony. Anyone have any tips for exercise? I try to walk daily and do some starching and yoga poses.

I try to walk on the treadmill everyday and do some minor strength training with free weights- nothing too taxing. I've been trying to increase the intensity a little bit as it feels good. I don't exercise if I didn't sleep well because I find I can't function for the rest of the day. I always exercise in the morning because there are too many excuses if I wait and it tends not to get done!

[memmistubbs]

Is anyone hear from the Atlanta area? Would love to meet others with RA-type stuff who are also doing paleo AIP.