Inclusion body myositis

Posted by dexter651 @dexter651, Jun 4, 2017

Food to eat if you have ibm

Hi @dexter651, welcome to Connect. If you feel comfortable, would you mind sharing a bit more about your situation so members have a bit more to share with you as well?

How long have you known about having inclusion body myositis? What sort of treatments does it require? What sorts of foods do you currently eat and are you looking for foods that help manage your condition better? We look forward to learning more about you so we can help Connect you with members who may be able to offer some recipes or foods to help.

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@JustinMcClanahan

Hi @dexter651, welcome to Connect. If you feel comfortable, would you mind sharing a bit more about your situation so members have a bit more to share with you as well?

How long have you known about having inclusion body myositis? What sort of treatments does it require? What sorts of foods do you currently eat and are you looking for foods that help manage your condition better? We look forward to learning more about you so we can help Connect you with members who may be able to offer some recipes or foods to help.

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Well I was just recently diagnosed with my condition in March tried prednisone it did not work for me going to try a new medication starting Friday .but I want to know what kind of diet is best for me

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Hi @dexter651,

Here is some information from Mayo Clinic about IBM, muscular dystrophy, including diet, coping and support: http://mayocl.in/2taBIXg

We also have a few discussions on Connect which might interest you:

Inclusion Body Myositis: http://mayocl.in/2s0RGUu
inclusion body myositis: http://mayocl.in/2taj7dx
regarding chronic polymyositis treatment: http://mayocl.in/2rg6K36

I’m tagging @rama, @tonyc55 @jamesthee @awhall75 @splinte @dk @bonnieh @jmbjar @mklam @gailfaith who have posted about IBM or other forms of muscular dystrophy in the past, and will hopefully join this conversation to provide some support and insights.

@dexter65, have you started the new medication? How is that working for you?

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@kanaazpereira

Hi @dexter651,

Here is some information from Mayo Clinic about IBM, muscular dystrophy, including diet, coping and support: http://mayocl.in/2taBIXg

We also have a few discussions on Connect which might interest you:

Inclusion Body Myositis: http://mayocl.in/2s0RGUu
inclusion body myositis: http://mayocl.in/2taj7dx
regarding chronic polymyositis treatment: http://mayocl.in/2rg6K36

I’m tagging @rama, @tonyc55 @jamesthee @awhall75 @splinte @dk @bonnieh @jmbjar @mklam @gailfaith who have posted about IBM or other forms of muscular dystrophy in the past, and will hopefully join this conversation to provide some support and insights.

@dexter65, have you started the new medication? How is that working for you?

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My husband who has been recently diagnosed with IBM has started a program with physiotherapist, occupational therapist and gym trainer. In just two weeks he is steadier on his feet, walking better and feels more balanced. Miracle? No I don't think so but any little improvement that may delay further muscle weakness is worth celebrating. A small improvement makes a big difference in mood and hope to keep walking longer. There seems to be wisdom in using your muscles. Merle in Montreal

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@kanaazpereira

Hi @dexter651,

Here is some information from Mayo Clinic about IBM, muscular dystrophy, including diet, coping and support: http://mayocl.in/2taBIXg

We also have a few discussions on Connect which might interest you:

Inclusion Body Myositis: http://mayocl.in/2s0RGUu
inclusion body myositis: http://mayocl.in/2taj7dx
regarding chronic polymyositis treatment: http://mayocl.in/2rg6K36

I’m tagging @rama, @tonyc55 @jamesthee @awhall75 @splinte @dk @bonnieh @jmbjar @mklam @gailfaith who have posted about IBM or other forms of muscular dystrophy in the past, and will hopefully join this conversation to provide some support and insights.

@dexter65, have you started the new medication? How is that working for you?

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What are the symptoms?

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Why don’t you tell us what foods to eat? I want some good news. I don’t need to hear more stories of what does not work.

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@brentdan67

Why don’t you tell us what foods to eat? I want some good news. I don’t need to hear more stories of what does not work.

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@brentdan67 – I wished I had a black and white answer for you on what to eat and what not to eat for IBM but I’m not sure there is one. Here is a PDF document on “Nutrition and Myositis: What we know (and still need to learn)” by Renee Lantner, an MD with DM at
The Myositis Association Annual Conference, September 2016, New Orleans, LA:

http://www.myositis.org/storage/documents/2016_APC_Presentations/new/TMA_2016_Nutrition_sans_photos.pdf

Hopefully this will help…

John

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I have recently been diagnosed with sIBM and would love to talk about any effective activities/choices to mitigate the problems living with this untreatable Autoimmune disease. Certainly there is the push for non-stop workouts to build muscle. Are there diets, supplements, vitamins, specific "dos and don'ts", weather, etc. that make any difference? It would be great to share experiences.

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Hi @kentyunker you may have noticed I moved your post to this existing discussion on Inclusion body myositis. I did this so that you can see what others have posted about this disease.

I am tagging fellow Connect members @brentdan67 @darlia and @dexter651 in hopes that they will come back and continue this discussion with you.

What guidance has your doctor given you at this time? How are you feeling, and what led you to this diagnosis?

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@ethanmcconkey

Hi @kentyunker you may have noticed I moved your post to this existing discussion on Inclusion body myositis. I did this so that you can see what others have posted about this disease.

I am tagging fellow Connect members @brentdan67 @darlia and @dexter651 in hopes that they will come back and continue this discussion with you.

What guidance has your doctor given you at this time? How are you feeling, and what led you to this diagnosis?

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Hi Everyone!. I have not posted in a long while. Too busy or tired or both!. Anyway, I was tagged in this post but I do not have IBM so not sure where the Moderator is going with this. I am sorry that I don't have any info on this autoimmune disorder even though I have plenty others. Take it easy ~ Darlia

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I am 68 years old and was just very recently actually diagnosed with IBM thru a muscle biopsy. However, I have been dealing with the disease for about 16 years. I attributed my issues to old age or arthritis. My Dr. says the disease has progressed very slowly in me. It all started out years ago as mild issues when climbing stairs and slight balance issues. I am one of the lucky ones who also has dysphagia and it is my real issue. It has gotten pretty severe and I have lots of prbs getting some foods down. I am learning what to eat and how to deal so that I don't end up with aspiration pneumonia (twice already) I am ready to learn as much as I can about how others deal with this disease.

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@darlia

What are the symptoms?

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the main one I had was a gradual progressive problem going up stairs, or stepping up onto a curb, et. later on my balance was affected but not greatly I just have to pay attention to what im doing.

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@monicasue

I am 68 years old and was just very recently actually diagnosed with IBM thru a muscle biopsy. However, I have been dealing with the disease for about 16 years. I attributed my issues to old age or arthritis. My Dr. says the disease has progressed very slowly in me. It all started out years ago as mild issues when climbing stairs and slight balance issues. I am one of the lucky ones who also has dysphagia and it is my real issue. It has gotten pretty severe and I have lots of prbs getting some foods down. I am learning what to eat and how to deal so that I don't end up with aspiration pneumonia (twice already) I am ready to learn as much as I can about how others deal with this disease.

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Hello @monicasue, Welcome to Connect. You mentioned that dysphagia is your real issue and it's hard to getting some foods down. Are you able to share a little more about what you've learned that helps you? Maybe you've seen some of these but I thought I would share them just in case.

NIH — Dysphagia
https://www.nidcd.nih.gov/health/dysphagia

5 Easy Swallow Strengthening Exercises for Dysphagia
https://www.napacenter.org/swallow-strengthening-exercises/

Swallowing Exercises: How to Do Tongue-Strengthening Exercises
https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/swallowing-exercises-how-to-do-tonguestrengthening-exercises

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@monicasue

I am 68 years old and was just very recently actually diagnosed with IBM thru a muscle biopsy. However, I have been dealing with the disease for about 16 years. I attributed my issues to old age or arthritis. My Dr. says the disease has progressed very slowly in me. It all started out years ago as mild issues when climbing stairs and slight balance issues. I am one of the lucky ones who also has dysphagia and it is my real issue. It has gotten pretty severe and I have lots of prbs getting some foods down. I am learning what to eat and how to deal so that I don't end up with aspiration pneumonia (twice already) I am ready to learn as much as I can about how others deal with this disease.

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@monicasue. Welcome to Connect! I have a couple of suggestions for you. Check with a recreation center near you to see what they offer for seniors. I found a strength and balance class that mostly focuses on balance issues. I have severe osteoporosis from steroid use trying to control my autoimmune disease. I also use yaks tracks on my shoes when it is snowy or icy. They are a system of sharp cleats that you can pull on over your shoes. Just great! Also, if there is a hospital nearby, you can ask your doctor for a referral to a speech therapist. They were able to help me speak and swallow again. And Medicare paid. 🤗. I certainly hope you’ll stay in contact with us and let us know your progress!

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Hi John and Monicasue,
It has been a very long time since I have been on the blog. Monicasue. I experienced similar symptoms you shared with us. Steps, tripping, getting out of chairs, into and out of bed, weakness in my hands, etc. I thought it was my arthritis. My Rheumatologist diagnosed me in July of 2018 with Poly Myositis and started me on 80 MG of Prednisone weekly. Nothing changed. Then in December, Mayo re-diagnosed me with IBM Myositis. The reason for the re-diagnosis was that Mayo used different dyes to test the muscle biopsies. I was told that there is no treatment yet for IMB except exercise. I have been moving towards an all plant based diet (albeit difficult with family not being on board). I am convinced that diet and exercise will make a big difference in my quality of life. There is the "Annual Myositis Patient Conference" scheduled for September 5th – 8th in Minneapolis. Are you planning on attending? I hope to find more information on issues such as the best diet, exercises and mobility support devices, progress on treatments, studies, etc. It will be my first conference. Also, the Myositis Association itself is a big source of information. Many states have local chapters that you can join. I highly recommend it if you have not already.

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