Recently I have been loking at my diet really carefully after having a bad time with lots of almost constant flares. I had already cut out alcohol because my Gabapentin didn't seem to agree with it, this seemed really easy compared to my recent removal of all caffiene in my diet... Wow the headaches were almost enough to send me back on the coffee train but I persevered and after 3 days the headaches were gone and I'd managed to find a half decent caffiene free coffee to drink. I am now coming to the end of the second week and I've noticed my flares seem to be getting a little less frequent.
Has anybody else noticed that taking something out of your diet has eased some of this hideous pain/flares..?? I would be interseted to know if there is anything further I can do to my diet that would help to improve things.
What I have noticed is that when I reduced my sodium intake, that resulted in immediate improvement. There could be two reasons for this: one, the body retains extra water to compensate for the extra sodium, which results in inflammation. Two, I've read that researchers believe that the "voltage gated sodium 1.7 channel" is primarily responsible for the condition that we suffer from, so possibly reducing sodium may affect this channel in a positive way. Regardless, I've seen a direct and immediate improvement by reducing sodium in my diet.
In general, I have changed my diet to reduce "inflammation"-causing foods, such as dairy and honey/bee products and to increase foods that are considered "anti-inflammatory". Interestingly, caffeine is actually an anti-inflammatory substance, when taken in moderation. You can do a Google search for "anti-inflammatory diet" and there are many good resources there - I've learned a lot from the "Dr. Weil anti-inflammatory food pyramid" - http://www.drweil.com/drw/u/ART02995/Dr-Weil-Anti-Inflammatory-Food-Pyramid.html.
Best of luck and let us know if you have any successes...
We have found that diet does have a huge affect on flares. Processed foods, sugar, caffeine & alcohol are some of the worse offenders. My wife also just got tested for food allergies as well to see if that may play a role, we are still awaiting the full results.
About 6-8 months ago we did a 7 day juice diet and this seemed to help a lot (one of the best 7 day periods that we have had with it), so we are going to look further into some kind of juicing diet to see if they might help or even cure it. This is one article we have found on the Gerson diet, that specifically mentions EM and Curing it (how often do you see that), so I think that once we complete our move we will be giving that a try. Article referencing EM & Juicing.
Many people look at stuff like this a "Quack" Medicine, but as far as I can tell, traditional medicine hasn't found a cure so I am more than willing to look at anything!
Though I am not perfect with keeping up on it, and also post many other things on there as well, I do blog about some of the things that my wife and I have tried for her EM. My blog is www.project-matt.com and I have linked to the EM tag on there!
I'm getting ready to start the Paleo diet. I did the 7 day diet, featured on The Doctor's tv show, not for these reasons; however, I did noticed that while on the diet, I had about 5 flareups in a 30day period. During a normal 30day period, I have at least 5-10 flareups a day.
Rachee> That is awesome that it seems to have helped you, the more I read on diet, the more I know that it has a huge affect on diseases including EM! We are also going to start the Paleo diet (we started it, but are now moving so have not been good with it), please keep us updated on how your continued use of Paleo works!
Whether or not you can cure EM with diet is still to be determined, but we have had more luck with that than really anything else we have tried! Thanks for sharing!
The other day, we had really bad pizza at work ( as a aword for some additional work) - and it was very salty. I washed it down with sprite and believe me that night I was in so much pain - tremendous burning in my feet and throbing pain in my both big toes.
From now on, I know to stay away from salty foods that increase blood preassure. This would all confirm how important is healthy diet. If it is bad for your heart, it is bad for your feet.
My husband mentioned some other foods above but I thought I'd point out another: Dairy. I was never a milk drinker, but cutting cheese out of my diet was so hard. Now I don't eat any type of dairy—including goat or sheep's milk products. When I do slip up and eat something with dairy, I majorly pay for it that night. I think my nerves have made it pretty clear that they're not fans of milk products because OH MY GOODNESS does the pain increase when I eat them.
And don't even get me started on alcohol. That was the easiest thing I cut from my diet because the link between it and flares was undeniable. I should also mention that I don't eat garlic (I never did, but I learned that it dilates the blood vessels) or fish super high in omega-3 fatty acids, which also expand the blood vessels.
And like my husband said, I've never had fewer flares than when I was on a juice diet. I couldn't sustain it for long because my weight was too low, but if weight weren't a factor I'd do it nonstop. It's not the most satisfying diet, but it beats flaring more often.
Thank you for posting this discussion topic, Laura! I don't have a lot of experience to share, except that I have had flares prompted by spicy food. (I don't drink alcohol or eat sugar.) The responses from others have given me some hope, though, as I would much rather make dietary changes than become addicted to pain medication.
Thanks for all the advice, I will certainly be giving some more serious thought to my diet.
I have had a bad couple of days but foolishly gave in and had a couple of drinks at a friends Birthday celebrations plus had to drive long distance Thursday and Friday and succummed to a diet coke in the services to keep me alert once I started to tire. This might not be the whole reason but even if it played a part I don't want to be risking making the flares worse in future... Thanks again :)
After reading all of the above "offenders", I am trying to find foods that we can eat while living with this monster of disease. Any help will be appreciated. LoveKat
I would also love to see a list of the foods safest to eat since we mostly see what not to eat. I also have GERD, so I pretty much can't eat anything without causing SOME bodily problem!
I think you would probably be better off getting advice from a doctor about diet Libby as GERD will cause different problems to the EM.
I would also love to see a list of the foods safest to eat since we mostly see what not to eat. I also have GERD, so I pretty much can't eat anything without causing SOME bodily problem!
I am trying to be as natural as possible when it comes to food for a while, this does mean no 'cheat' foods so will have to spend a little more time in the kitchen I guess.!
KatBaskin said:
After reading all of the above "offenders", I am trying to find foods that we can eat while living with this monster of disease. Any help will be appreciated. LoveKat
I have quit many things for health reasons, The ones I quit specifically for EM:
********* alcohol********* I drink, I flair, no question. Jack Daniel's nearly shut down because of me quitting.
spicy food - usually flair
salt - I'm no rocket surgeon but salt is about as anti anti-inflammatory as it gets.
And that's good news about the coffee Don, Ima be buried with my coffee mug. Matt is right on with the processed foods thing, if it doesn't look like it grew in the ground, don't buy it! This rule was instrumental in my losing weight.
I went non a gluten free diet and that didn't help nor hurt. In fact I had come to the conclusion that food type didn't affect my EM. Somehow I developed a theory that eating a little salsa helped my EM. Well. Some of you are going to laugh at me (go ahead). Well if a little helps a little a lot will help a lot. Guess what? I was wrong. It did NOT help. In fact...Yes you are right. I had a 24 hour hard stiff toe flair and then back to normal flaring. What a day. So I know the culprit and know what to avoid. But is the culprit the tomatoes, the pepper hot sauce, the acid solution or the extra salt? Or all of above?
I have to eat a low sodium diet (1200 mg or less/day). I have celiac disease and I have always been dairy intolerant. I noticed that when I eat more sugars, EM causes me more pain. I also noticed that if I eat high starch foods, I am in extreme pain. I have been a list of foods that will affect me by one of my previous doctors and it has been very true and pain causing foods as we can call them. I know thatany legumes, peanuts, watermelons, cantelope, dairy and high sodium foods will cause great pain for me. It is not fun but the pain is not worth it!
Thank you all for your input. I have tried lots of your suggestions. I am now taking 10X 300mg gabapentin a day but now have the added stress of the medication causing weight gain even though I manage to exercise most days. I've been putting on 2lb a week for the last 3 weeks on top of the 7lbs in the 4 months before that.
I gained 25 pounds in the last year and a half. Before that I carried the correct weight (all my life). This weight gain is because of the medication and no exercise. I am almost 100% housebound. I used to walk 2 miles a day plus all the normal things you do to get exercise. I really dislike this weight gain. Soooooooooooooo, I went on a HCG diet. You take these HCG drops a couple times day and eat lots of vegetables and100 g of lean meat or beans (also 2 fruit and one tiny melba toast. In six days I have lost 10.0 pounds. This gives me incentive to continue. AND I am not hungry. I still miss the chips and ice cream. Because of the EM I can not do any exercise that uses the feet. Even a rowing machine would be too much on the feet. Maybe something with a stationary bicycle where I use my hands? Is there something like that? Jim