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?
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.
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.
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.
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.
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.
Paleo and Fibromyalgia? 18 Answers