Fibromyalgia and PB page 2

[emmie]

Interestingly, my primary doctor diagnosed me with fibro some years ago, but he insisted I wasn't hypothyroid. I was, and most aches disappeared with my thyroid meds. However, I also have severe osteoarthritis, and I'm gluten and dairy free, too, and that helpsso that I need no meds at all for my arthritis. But I find the thing that can really bring on pain is sugar--and even artificial sweeteners.

If OP's husband has not yet abandoned sugar, I'd advise him to do that, too.

[cillakat]

S
He also started taking vit D (D3), CoQ10, and he's been taking fish oil and ALIVE! whole food multivitamins for a while. I'm wanting to get him a really good probiotic, which is something I think he's lacking and might make a big difference. (I do lots of probiotic foods here like kraut, kimchi, non-dairy kefir, lacto fermented pickles, etc., but he won't touch them...)

I'm wondering if anyone here has experience w/ fibromyalgia, and what has helped your symptoms. Have you found PB eating to be helpful? (I'm guessing yes!) I believe his problems are due in large part to food sensitivities and leaky gut issues

and the food sensitivities and leaky gut stuff are likely a combination of long term vitamin D deficiency and grain consumption working in concert

i've dealt with markers for lupus (high ANA among other things), bone point, joint paint, several RA markers, depression, anxiety, fibromyalgia, chronic fatigue, psoriasis, celiac, sjogen's symptoms, eczema (extreme, disfiguring during my 20s;/), chronic cystitis, chronic bronchitis (as a kid even!), asthma, allergies, various food intolerances, migraines,

Grain free is huge for me. Even when all other health related factors line up (exercise, vitamin D, lots of veggies), my body doesnt' like chronic grain consumption - no shock there as it's not biologically appropriate for humans. I can do some dairy, but not a lot or my crp goes up.

Interestingly, even gluten, dairy free, eating primally/biologically appropriately, lots of produce etc, my CRP is still very high unless my 25(OH)D levels are at least in the middle of the reference range (60-65 ng/mL US scale which translates as 150-163 nmol/L in the rest of the world).

For most, getting D into the middle of the reference range will require either:
1)midday, full body, unprotected summer sun exposure, to the point just before burning (then cover up, go in, or put on s/s)

OR

2)1000 IU d3 per 25 lbs body weight per day.....

or some combination thereof - some from sun, some from supps.

My D deficiency was discovered in the summer, in atlanta, when I had two young ones and was outside all of the time with them - albeit in the shade and not out midday.

I get virtually all of my D from supps except for a few pool days midsummer. On those days, I don't take the D. All other days, I take it. And if i miss a dose or 10, I make up those doses.

Most of the chronic health stuff mentioned was from age 3-31. Some in more recent years - I'm 40 now and it's essentially all gone. One very serious bout of pneumonia 18 mos ago when my levels inadvertly got low. One very serious bout of reflux when I went binging on gluten free cake a couple of weeks ago.....but otherwise - crp is good, all bloodwork looks great, no bone, muscle pain, no psoriasis or eczema etc etc....

I've completed 20 weeks FairyRae. I had my first pre-natal checkup with my midwife last week and I'm really happy with him. Thanks for all the advice you and the others gave on the homebirth thread.

Sorry to hijack the the thread Fairy Maba, I read about your midwife choice but didn't realize it was for a hb....both of mine were born at home. Pretty much right here where I am now

K

[say_rahhh]

Not to continue the t/j but....

Thanks for your info cillakat. My mom has got horrific Crohn's- to the point of being house-bound. I'm visiting her in about a month and she is totally psyched to try no grains/no sugars while I am home. I've been reading the Crohn's threads on here, and their links, but the SCD looks a little complicated. I want to show my mom a very simple and easy WOE that will return her quality of life to her. Your post makes me hopeful that a simple no grains/no sugars, vit D, O3 WOE will work.

[cillakat]

Not to continue the t/j but....

Thanks for your info cillakat. My mom has got horrific Crohn's- to the point of being house-bound. I'm visiting her in about a month and she is totally psyched to try no grains/no sugars while I am home. I've been reading the Crohn's threads on here, and their links, but the SCD looks a little complicated. I want to show my mom a very simple and easy WOE that will return her quality of life to her. Your post makes me hopeful that a simple no grains/no sugars, vit D, O3 WOE will work.

SCD is a little unnecessarily complicated. I guess the nice thing for some is that it allows them to eat otherwise offlimits foods - but b/c of that, there are also a huge number of people that aren't successful on it.

best to just have her go primal from the start - grain free sugar free - as is your intention.

Note that at first, she might have a problem with most veggies and will need to eat them cooked and very often pureed - Donna Gate's _The Body Ecology Diet_ has some wonderful soups that I still love and eat often......broccoli fennel (making it today), carrot cauliflower and more.

Jordan Rubin's books, while uncomfortably religious for me, are VERY good for inspiring confidence in a person with chron's. He almost diet of crohns his late teens/early 20's. The pictures are physically painful to view. He did recover though...and went on to write multiple books about his experience and nutrition and to found the enormously successful company Garden of Life. When he finally got healthy, not only was he eating primally, but he went to live at the beach.......so he was getting a tremenous amount of D via his skin.

I saw him at whole foods a few years ago - 6 years ago I guess (my youngest was 2) - and he is the picture of health.

Your mom will have difficulty with fat absorption. If she hasn't been getting vitamin D daily, and if she doesn't live in miami, sandiego or similar, she'll likely need very high supplemental levels of D (think 4,000 IU per 25 lbs body weight) for a 6 weeks or so then down to 1,000 IUD/25 lbs body weight. The addition of digestive enzymes *with every meal* and probiotics first thing in the am and last thing at night would be very beneficial for the time being.

If she's been on the heavy steroids that are part and parcel of tx'ing crohn's, vitamin K will also be very helpful for trying to maintain and even rebuild bone mass.

NTBCAMA......consult your hcp etc


k

[AppalachianMatt]

FairyRae. i understand your husbands pain all too well. I was diagnosed with PTSD and Fibro after my last deployment and it took me years to get where I am now. Mostly b/c my docs took so long to figure it out and I just let it get the best of me before figuring out what was actually going on. The knots, burning sensations on the inside of your elbows, knees down your sides suck worse then anyone can ever know. The pain can be unbearable if you let it but I have found ways to cope without meds. I was on Savella for about 6 months (Euro version of Lyrica) and it did okay but the pain and sleepless nights were still there. When I found Primal I really started to re-evaluate the way I workout, handle stress, the foods I eat, etc.

Exercise- great for staying i shape but also to get rid of stress
Yoga/Pilates is great for Fibro. It strengthens the core and releases a lot of the pressure in the back. Most guys will shy away but I can promise you with every fiber of my being that this has been the greatest thing for me since I took charge of this annoyance.
Swimming is another great tool.
I still lift weights but not as much 2-3 days per week depending. Living with Fibro has changed me from wanting to bulk up to staying in phenomenal shape. I treat my body as a machine and put only the highest quality foods to fuel it. I know it sounds completely asinine but it helps.

Foods
I now eat a lot of dark greens (Swiss Chard, Romaine, Kale) and cleaner protein sources (Hormone free, anti-biotic free). Fish oil supplements work great along with a strong multi-vitamin. Another important thing to do is cut way back on sugar intake. Insulin is the devil of Fibromyalgia. The body is already inflamed on a consistent basis and adding a high insulin responses only worsens the problem. I cut out soft drinks, fast food, most fried foods- an occasional piece here and there isn't too bad.

He also needs to focus on posture. When you have this afflicition it's far too easy to let yourself go and create bad habits. When you're back hurts you just want to sit down and relax. Well sitting down in a chair, lazy z boy recliner aren't the best things. Puts too much stress on your back causing more inflammation. Walk around a lot without shoes, stand up straight and just try to relax. I have friends who swear by meditating or breathing exercises as well.

Does he have any stress factors? A lto of cases of Fibro are related to traumatic events. If so the confront those head on. If he does than the best way is to not try to forget them but to face them and move on. Again it worked wonders for me.

Hope this helps somewhat.

[say_rahhh]

Thanks, cillakat. I appreciate the information, a lot.

[Nicole]

I've been reading this tread with lots of interest. I do not have Fibro, I was diagnosed with Lupus (SLE) some years ago, after this I switched to FitForLive livestyle. Inflamation was no longer so severe but by times I got so dizzy, probably due to lack of protein, wich was very minimal, I was mainly veggie. After a search I came upon this Primal livestyle wich sounded better to me, after reading the book I started some month ago. To early to say if it works but anyhow I dident get dizzy since I started. I lost some weight and have lots of energy, so thats a positive start.
Nicole

[FairyRae]

Awesome info all! I'm so grateful you are all sharing. I will reply to some of your posts later and prob. ask more questions. Can't wait to share some of this info w/ my dh--he has had some wicked sugar cravings (given into them) and is feeling shitty (I thought b/c of the sugar, and now am sure of it after what you wrote App.Matt!

I'd love to talk more about what you've posted cillikat too about SCD etc. I came to primal through GAPS/SCD, along w/ some BED stuff, so I'd love to pick your brain on those methods!

Thanks again all!

[FairyRae]

Oh, and speaking of garden of life, any thoughts to share on Primal Defense probiotic? Thanks again!!

[trigirl85]

This is really great thread! I was DX with Lupus about a year ago, started really suffering 1.5 years from it and I dropped gluten, cow's milk dairy, sugar, caffeine etc. and eat all natural- organic, free-range, grass-fed, etc.. I got tested for Candida- free and clear. I've been Primal for 5 weeks and the one great thing I noticed was that I was able to finally get off prednisone (I was on a low dose, 10 mg, but for 8 months) but I am still having lot of bouts of pains, fatigue, brain fog, etc. and I am just wondering about the Vitamin D connection. I have had mine tested numerous times and seem to be round the middle of the range. Should I take more anyways? I've been off prednisone for 1.5 weeks now and I lost the great energy/mood/increased endurance I had the first 2 weeks primal on 1 mg prednisone. I'm still eating occasional goat's milk butter, but have considered dropping that as well just to see.