1

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Fibromyalgia and paleo for a stubborn friend

Answered on August 19, 2014
Created May 30, 2011 at 11:39 PM

I have a friend with fibromyalgia. She's 25 and is on a ton of meds, constantly in pain, was in the ER twice this past month for the pain. She told me she tried gluten free but it didn't help. I suggested to her to to cut out grains, sugar, processed food and possibly dairy and that people have cometely reversed their disease by just doing that, eliminating all symptoms. She flat out ignores me. I've sent her some info, including some threads on here about it but she did t even acknowledge it and I doubt she even looked at it. Shes skinny, and her body composition is sickly looking (skinny-fat) and I don't think she thinks she needs to change her diet because she's not "overweight". And I don't think she wants to give up her digornio frozen pizzas or processed foods. Her 3 year old son has a blood disorder and is lactose intolerant and she's gunna switch him to soymilk. I borderline freaked out and said at least give him almond milk and she brushed me off. So my question is, does anyone know of any books (since she won't read links) about grain/sugar-free diet and fibromyalgia? And/or blood disorders (he has Von willibrand or something like that). I hate seeing her in pain, taking tons of meds that dont even help, and listening to her sick all the time when she won't even listen to changing her/their diet. Her birthday is coming up and I'd like to get her a book on it.

Also anyone else think there should be a paleohacks iPhone app?

31381cfeb5d6da6fc75f80ab68e041ea

(560)

on March 23, 2012
at 09:09 PM

thank you so much, andrea. i don't feel like i need to defend everyone with chronic pain, but i do know how heartbreaking it is when people dismiss you because they see you as "weak willed." fibro patients can be complainers, but there is a difference between being a baby and having an illness. sometimes they overlap and those people get all the attention, but being overly sensitive and having an illness are not synonyms.

58c33847c5b7ecbf6572075df2cdd002

(866)

on March 23, 2012
at 09:00 PM

Awesome, awesome post. So sorry you have to deal with this terrible issue, but thank you for taking the time to explain for many other fibro sufferers. My best friend suffers from fibromyalgia and her last marriage ended because her husband could not accept that it hurt when he jokingly patted her arm or her bottom and basically thought she was either making the whole thing up or way over reacting. (He was a loser anyway and her new man is WAY better, so it all worked out in the end). Great recommendations to bring her Paleo-friendly things without making a big deal of it. Kudos.

21fd060d0796fdb8a4a990441e08eae7

(24543)

on March 23, 2012
at 05:17 PM

Awesome! Did you proceed to a mostly-meat diet?

1d9af5db8833413037be3ac48964714f

(3789)

on June 03, 2011
at 01:55 AM

Diet may well have nothing to do with it. If I had fibro, I'd still give paleo a try as a benign way of reducing potential sources of auto-immunity and improving overall health. I would also take a look at the Jamiet's "Perfect Health Diet," which suggests that chronic illnesses that do no improve with diet may often be related to undiagnosed infections. Best wishes to you.

E7be2ce38158357f5dacae07b43d1b29

on June 02, 2011
at 01:01 AM

Thanks, and good luck finding someone who has had paleo or other diet "cure" or reduce their symptoms of fibro. I see it as very indicative since I don't know of anyone - anyone - who has experienced ANY cure or great relief from fibro, dietary or otherwise, and neither has my excellent, somewhat non-traditional, very experienced, open-minded rheumatologist.

1d9af5db8833413037be3ac48964714f

(3789)

on June 01, 2011
at 11:20 PM

Sorry that a paleo diet hasn't made your fibro better. That sucks. Paleo is something I would recommend people with a very wide range of chronic diseases try--especially those that may have some auto-immune etiology. I firmly believe that, in many cases,they would experience noticeable improvement and, in some cases, virtual cure. Your lack of success is not indicative that paleo could not work for some particular other person--in the same manner that, if you had experienced success, it would not mean that paleo would help this person. Good luck in figuring out what does work for you.

6670b38baf0aae7f4d8ac2463ddc37c0

(3946)

on May 31, 2011
at 02:15 AM

How is her sleep? This is a big one for fibro.

21fd060d0796fdb8a4a990441e08eae7

(24543)

on May 31, 2011
at 01:01 AM

Sucky! Also sucky is how expensive d-ribose is.

0bc6cbb653cdc5e82400f6da920f11eb

(19245)

on May 31, 2011
at 12:50 AM

"the ONLY people have insisted to me that there is some dietary cure to fibro are people who DON'T HAVE IT" Good point, that can be very annoying.

0bc6cbb653cdc5e82400f6da920f11eb

(19245)

on May 31, 2011
at 12:48 AM

"the ONLY people have insisted to me that there is some dietary cure to fibro are people who DON'T HAVE IT" Good point, that can be vary annoying.

0bc6cbb653cdc5e82400f6da920f11eb

(19245)

on May 31, 2011
at 12:35 AM

Sucks when you try everything that should work with little effect.

65430e39d7e9e9322718d016fe668051

(2944)

on May 31, 2011
at 12:29 AM

Awesome. She has bad back pain too, I'm going to get her grokhale's book too.

21fd060d0796fdb8a4a990441e08eae7

(24543)

on May 31, 2011
at 12:27 AM

I haven't read it, but I think it's a mix of nutrition/supplements/sleep/etc. With fibro, things like sleep and posture might be equally as important as nutrition.

65430e39d7e9e9322718d016fe668051

(2944)

on May 31, 2011
at 12:25 AM

Hey Patrik- maybe even a mobile version of the site.... I'm not a huge tech person so I don't have many suggestions, but I'll start a thread to get some ideas!

93f44e8673d3ea2294cce085ebc96e13

(10502)

on May 31, 2011
at 12:19 AM

Hey Danielle -- what would you want to see for a PaleoHacks iPhone app?

65430e39d7e9e9322718d016fe668051

(2944)

on May 31, 2011
at 12:18 AM

Thanks for the info and links, Kamal. Does From Fatigued to Fantastic focus on diet as primary/necessary?

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5 Answers

3
1d9af5db8833413037be3ac48964714f

on May 31, 2011
at 12:24 AM

I know so many people with serious health problems who would almost certainly do better on paleo--but who have no interest in anything I have to say about the topic. Like trying to fix someone's love life when you know that person is not right for someone you know and love, fixing someone's diet is usually not possible. Pushing too hard will simply drive away people you love.

SAD will, sooner or later, doom most of the people you know to years of unnecessary illness and an early death. I wish that were not true, but I see no way to fix it.

3
21fd060d0796fdb8a4a990441e08eae7

(24543)

on May 30, 2011
at 11:57 PM

Hi Danielle,

I'm like a combination of your friend and her son. I've got von Willebrand (minor) and a chronic pain issues (major), and am regularly in crisis mode.

There is one book that many fibro people read, by Jacob Teitlebaum. It is here.

In addition, I will be starting a website to synthesize evidence on non-pharmacological approaches to chronic pain. My day job is reviewing clinical trial quality, I'm in school for nutrition, and I love paleo and have pain issues. So I figure it's time to contribute something!

The two things that seem most interesting as fibro therapies are d-ribose supplementation and trigger point massage. Of course, a paleo diet is another interesting therapy, but requires way more stick-to-it-iveness.

21fd060d0796fdb8a4a990441e08eae7

(24543)

on May 31, 2011
at 12:27 AM

I haven't read it, but I think it's a mix of nutrition/supplements/sleep/etc. With fibro, things like sleep and posture might be equally as important as nutrition.

6670b38baf0aae7f4d8ac2463ddc37c0

(3946)

on May 31, 2011
at 02:15 AM

How is her sleep? This is a big one for fibro.

65430e39d7e9e9322718d016fe668051

(2944)

on May 31, 2011
at 12:29 AM

Awesome. She has bad back pain too, I'm going to get her grokhale's book too.

65430e39d7e9e9322718d016fe668051

(2944)

on May 31, 2011
at 12:18 AM

Thanks for the info and links, Kamal. Does From Fatigued to Fantastic focus on diet as primary/necessary?

2
31381cfeb5d6da6fc75f80ab68e041ea

(560)

on March 23, 2012
at 08:48 PM

hey danielle! as someone who is also young (22) and has fibro (diagnosed 4 years ago), may i contribue my perspective?

i know you feel so strongly about this because you love your friend, but having a pain disorder HUGELY impacts your emotions. your friend is most likely overwhelmed with dealing with this, and she probably feels like she is doing all that she can right now just to keep her head above water. even though you just KNOW paleo/primal could help her and believe that as a good friend it's your job to help her change, please know that it's just not that simple for someone with chronic pain.

people tell me ALL THE TIME how they just know if i did X, Y, or Z, that i wouldn't have to deal with it anymore, if "i'd just be open minded and try." while well meaning, it's absolutely exhausting to constantly hear how i should change my life. having fibro already changes your life so much! this is probably a big reason your friend is resistant, imho.

i'm sure your friend has been on so many rounds of meds, therapy, etc., that one more thing seems terrifying to her. also, fibro sometimes steals the energy to cook, so her pizza might be the best she believes she can do. you guys with pain disorders understand what i mean when i say the incredible amount of mental energy it takes just to go throughout the day, and sometimes cooking is the straw that breaks the camel's back. also, sometimes comfort foods are the only way they know they can comfort themselves. have you ever eaten something from your childhood when you are lonely, or turned to sweets when you are sad? imagine dealing with that all day. it's not an excuse to eat like crap, it's just reality. for most, food is comfort and fibro patients have very little naturally.

i guess what i mean is, please don't be so quick to dismiss the emotions of someone with a pain issue. plenty of their lives is spent just hanging on by a thread, and paleo is a HUGE lifestyle change even without fibro. also, people are so guarded with their diet, add that to conventional wisdom and it's a nearly impossible task for someone to see the light, so to speak. would it be helpful for her to cut out gluten? possibly so! but she has to be ready to undertake it, emotionally.

my suggestion? don't question her choices, just help her as much as you can. bring her paleo friendly snacks, like mac nuts and coconut butter, or make her a delicious paleo meal. tell her you were thinking of her, and that you made her something that always makes you feel good so you knew she'd appreciate it. trust me, she will value it. share your favorite things with her, but don't focus on how "terrible" of a job she is doing with her diet. lead by example. gentleness in your approach may change her perspective, but either way, she will definitely see you as a great friend.

58c33847c5b7ecbf6572075df2cdd002

(866)

on March 23, 2012
at 09:00 PM

Awesome, awesome post. So sorry you have to deal with this terrible issue, but thank you for taking the time to explain for many other fibro sufferers. My best friend suffers from fibromyalgia and her last marriage ended because her husband could not accept that it hurt when he jokingly patted her arm or her bottom and basically thought she was either making the whole thing up or way over reacting. (He was a loser anyway and her new man is WAY better, so it all worked out in the end). Great recommendations to bring her Paleo-friendly things without making a big deal of it. Kudos.

31381cfeb5d6da6fc75f80ab68e041ea

(560)

on March 23, 2012
at 09:09 PM

thank you so much, andrea. i don't feel like i need to defend everyone with chronic pain, but i do know how heartbreaking it is when people dismiss you because they see you as "weak willed." fibro patients can be complainers, but there is a difference between being a baby and having an illness. sometimes they overlap and those people get all the attention, but being overly sensitive and having an illness are not synonyms.

2
Dc7d270495f8c568350b4333dc5756e1

on March 23, 2012
at 04:38 PM

I have a pretty bad case of fibro and have also tried countless diets, supplements etc over many years. My understanding is that there are many roads that lead to fibro and that one size does not fit all. So here's another idea to play with. It turns out that my fibro is affected by salicylate and amines and oxalates in the diet. Most fruit and some vegetables have these things in them. Try reducing them and see if you feel better. My initial response was overnight. You can find lists of salicylates and amines, oxalates on the internet. I also am starting the paleo diet to see if grains caused my inability to digest these substances in fruit and vegetables.

21fd060d0796fdb8a4a990441e08eae7

(24543)

on March 23, 2012
at 05:17 PM

Awesome! Did you proceed to a mostly-meat diet?

2
E7be2ce38158357f5dacae07b43d1b29

on May 31, 2011
at 12:27 AM

I have fibromyalgia, and diet DOES NOT make a difference. I'm 40, have been off SAD for a VERY long time, very self-aware, diagnosed with celiac disease last year (soabsolutely no gluten, little/no grains at all, and I'd stopped being a carb junky a very, very long time ago), I have kept numerous food journals, etc. It doesn't make a difference. She may see some results if she cuts out uncultured dairy or at least adds lactase enzyme to her diet, but seriously... I've tried about everything and haven't seen any effect on fibro (and it's been pretty bad the last month or so, most likely weather related), and the ONLY people have insisted to me that there is some dietary cure to fibro are people who DON'T HAVE IT.

On another note, I can tell you this: it's likely her son will like the almond milk better than the soy milk. She'll find that out fast. And Lactaid milk is an easy substitute, and many grocery chains are carrying their own brand of it which is cheaper. I've also noticed it keep much longer in the frig than regular milk. LI (not allergy) is a very easy issue to deal with these days. Fibro is not.

It doesn't sound like she's interested in trying a diet that is a dramatic change from her routine. If she were to decide to go completely paleo, she'd probably end up being less willing to stick with it, less willing to try other ideas or lifestyle changes, etc., because I believe it is very unlikely she's going to get any relief from it.

I seem to have some improvement by taking d-ribose, but going through my journals, the results are very anecdotal and would probably show lousy p-values. I still take it, as it does no harm that I can tell, but it doesn't seem to make a radical difference.

Also, sublingual B vitamins, raw dessicated adrenal and pituitary glands supplements seem to help with the brain fog and energy levels more than anything else, but I'm already long-term low carb which also helps. The pain comes and goes as it pleases or the day after heavy physical activity.

0bc6cbb653cdc5e82400f6da920f11eb

(19245)

on May 31, 2011
at 12:48 AM

"the ONLY people have insisted to me that there is some dietary cure to fibro are people who DON'T HAVE IT" Good point, that can be vary annoying.

0bc6cbb653cdc5e82400f6da920f11eb

(19245)

on May 31, 2011
at 12:35 AM

Sucks when you try everything that should work with little effect.

21fd060d0796fdb8a4a990441e08eae7

(24543)

on May 31, 2011
at 01:01 AM

Sucky! Also sucky is how expensive d-ribose is.

0bc6cbb653cdc5e82400f6da920f11eb

(19245)

on May 31, 2011
at 12:50 AM

"the ONLY people have insisted to me that there is some dietary cure to fibro are people who DON'T HAVE IT" Good point, that can be very annoying.

1d9af5db8833413037be3ac48964714f

(3789)

on June 01, 2011
at 11:20 PM

Sorry that a paleo diet hasn't made your fibro better. That sucks. Paleo is something I would recommend people with a very wide range of chronic diseases try--especially those that may have some auto-immune etiology. I firmly believe that, in many cases,they would experience noticeable improvement and, in some cases, virtual cure. Your lack of success is not indicative that paleo could not work for some particular other person--in the same manner that, if you had experienced success, it would not mean that paleo would help this person. Good luck in figuring out what does work for you.

E7be2ce38158357f5dacae07b43d1b29

on June 02, 2011
at 01:01 AM

Thanks, and good luck finding someone who has had paleo or other diet "cure" or reduce their symptoms of fibro. I see it as very indicative since I don't know of anyone - anyone - who has experienced ANY cure or great relief from fibro, dietary or otherwise, and neither has my excellent, somewhat non-traditional, very experienced, open-minded rheumatologist.

1d9af5db8833413037be3ac48964714f

(3789)

on June 03, 2011
at 01:55 AM

Diet may well have nothing to do with it. If I had fibro, I'd still give paleo a try as a benign way of reducing potential sources of auto-immunity and improving overall health. I would also take a look at the Jamiet's "Perfect Health Diet," which suggests that chronic illnesses that do no improve with diet may often be related to undiagnosed infections. Best wishes to you.

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