Polymyositis & Dermatomyositis Support Group
Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.
Hi, I am curious to know if changes to diet/lifestyle or taking supplements/herbs have helped anyone with this condition?
It is so hard to change one's diet and lifestyle, but if it offers the possibility of overcoming illness that makes it almost necessary - in my opinion atleast. However, if there is not much evidence to prove it makes a difference (as in getting off meds/going into remission... Or even just symptom management), that makes it all the more difficult to give up good food!
There is this documentary Fat, Sick and Nearly Dead that makes me want to make drastic changes. But I live in New Orleans and food is such a huge part of our culture! But these meds are so terrible and my health is more important than a happy belly....
Also, any supplements/herbs that help with energy levels and other undesirable symptoms? Please share.
It is so hard to change one's diet and lifestyle, but if it offers the possibility of overcoming illness that makes it almost necessary - in my opinion atleast. However, if there is not much evidence to prove it makes a difference (as in getting off meds/going into remission... Or even just symptom management), that makes it all the more difficult to give up good food!
There is this documentary Fat, Sick and Nearly Dead that makes me want to make drastic changes. But I live in New Orleans and food is such a huge part of our culture! But these meds are so terrible and my health is more important than a happy belly....
Also, any supplements/herbs that help with energy levels and other undesirable symptoms? Please share.
I love food and am a huge foodie. Mostly driven from the changes to my food tolerance from my medications, I have modified my diet to be "closer to the source" meaning I don't eat processed or packaged food. I can't seem to tolerate much fried food anymore. Most meat seems rancid to me so I don't eat a bunch of meat. I have tried to up my veggie and fruit consumption. Althought I haven't gone gluten free, I do try to monitor my gluten/carb intake. I do feel better if I eat less of those items then a huge pasta dinner or something.
As far as supplements, my doctor told me not to take any besides what what requested. I take calcium with vitamin D daily to counteract the Prednisone side effect. I also take Folic Acid once a week to counteract the side effect of Methotrexate. I also have Lymphoma so my immune system is whacked anyway. (Don't worry, I got that before Myositis.) It is my oncologist that said I shouldn't take any other supplements since it is counterproductive to my cancer treatments.
I hope you are able to figure out a plan that works for you. New Orleans is a foodie's playground. I love your city!
I love food especially bread and butter, and carbs. I do better when I avoid gluten (it helps the rash and fatigue) but my tests have never shown that I was intolerant. Each day I try to eat zero carbs until dinner. Then I eat what I want in moderation for dinner. Like Lexisgirl I don't do well with fried foods now and the meat that tastes best to me is chicken. After dinner I close the kitchen until 9 and then have a diet root beer float with sugar free ice cream.
I hope this helps some - I think this disease is individualize with each of us. From reading all the posts we all vary in the degree it hits and what it does to our bodies.. Keep reading and educating yourself on DM/PM and you will find little things that help your life style. HUGS!
I love food especially bread and butter, and carbs. I do better when I avoid gluten (it helps the rash and fatigue) but my tests have never shown that I was intolerant. Each day I try to eat zero carbs until dinner. Then I eat what I want in moderation for dinner. Like Lexisgirl I don't do well with fried foods now and the meat that tastes best to me is chicken. After dinner I close the kitchen until 9 and then have a diet root beer float with sugar free ice cream.
I hope this helps some - I think this disease is individualize with each of us. From reading all the posts we all vary in the degree it hits and what it does to our bodies.. Keep reading and educating yourself on DM/PM and you will find little things that help your life style. HUGS!
As for supplements, I take several. Prednisone (and possibly gluten) gave me osteoporosis, for which I take calcium, magnesium, vitamin d3, vitamin k2, and strontium (per doctor). I also take omega 3 in the form of krill oil, astaxanthin for my eyes (cataract from prednisone), CoQ10 (for muscles), a vitamin b complex, colostrum (a natural form of IVIg), and extra vitamin c (good for connective tissue). Lastly, my doctor recommended Lauricidin to help keep my chronic Epstein-Barr Virus in check.
As has been mentioned, we are all different. My doctor helped me wean off prednisone, so I am prescription free, except for a natural thyroid medication. She is aware of my supplements and approves of them. I hate taking so many pills, but it's far better than prednisone, and without the side effects. The Lord and this routine have me living a near-normal life.
The best test is to go gluten free for 30 days and see how you feel. You will notice a drastic difference. I always thought it was so hard to go gluten free. It is actually simple because there are so many options out there. You can even order gluten free pizza (make sure the meat is GF) I know get ill if I eat something with gluten.
I Juiced once a day after seeing Fat Sick and nearly Dead on Netflix. Good movie about a guy with a rash disease. Also Auto Immune. Then in Jan i started Eat to Live by Dr. Joel Fuhrman. a few weeks into that, i read his book Super Immunity and went VEGAN and kept on that for the now 6 months. He will be having a special on PBS in the next two weeks in many places. But the book is really good and it is a gluten free diet. It was hard the first 4 weeks or so finding new things to eat, but all my doctors are amazed with my progress. They are saying that this disease is not supposed to turn around like this. The STanford group yesterday said i had only one finger with the Cappilary changes at the base of the nail and i had all 10 previously.
This disease is really awful. I figure what do i have to loose by trying a new diet, even a really strick one?? I was not getting better on the Cellcept and i gained 45 lbs. My labs have turned around as well.
Message me if you want any more info. I have reduced my supplements quite a bit. My Osteopenia went away, I got off my GERD meds and my digestion is just transformed. I do take Pro-biotics and Vit D, and B12, but not much else.
My best to you. Shawna
I thing you don't have to expect too much from this Gluten free Diet. The good thing about this diet is loosing weight.
The protocol how and what medcine to treat this disease is mostly trial and error.
If you are on Prednisone you have to be on a low sodium diet, and take Calcium and Vitamine D. If you on methotrexate you should not drink Alcohol.
Michael PM
I now have Secondary Pulmonary Hypertension. I eat a low sodium diet with a lot of antioxidant type foods. Coffee and dark chocolate are high in good antioxidants. Most berries are loaded with antioxidants too. I must have an occasional steak & potato anyway but you only live once. I know for you that gumbo is probably important. I do try to go gluten free and I do feel better. I notice that I now have an underlying nausea that is daily and on going. I like to eat several lite small meals and this is helpful.
I have learned a lot on this website about diet and things that work. I do want to suggest to be careful with juicing because that is a fast way to gain weight. Watch the sugar and calories if you decide to juice.
Keep us posted and thanks for your post.