Some initial research as shown that some fatty acids may help, read this brief summary.
Proper nutrition is even more important than usual for those of us with IBMPFD. With weakened muscles, keeping extra weight off is even more important. A proper diet, i.e., correct amounts and ratios of protein, carbohydrates, etc. are thoroughly discussed in a number of locations, so will not be repeated here. While eating the correct foods in the proper balance is important, the main concern is how to reduce the total intake. My lunch size is ~ 1/10 (yes, one tenth) of the amount I used to eat 40 years ago. The most important step is to reduce the total quantity of food ingested, not only reducing or eliminating snacks, but significantly reducing the portions during each meal.
Some of the locations discussing a healthy diet include:
The MDA has prepared a document for meals and preparation/recipes of foods that help those with trouble swallowing (a common problem with IBMPFD). This document can also be downloaded from the MDA website.
I now have to take prescription medication for high blood pressure, caused by being confined to a power wheelchair. I also take a prescription medication for an enlarged prostate (old age and sitting in a wheelchair). The prescription medications may interfere with some supplements or require taking of additional supplements. Do the research once prescription medications are required.
Supplements, e.g., minerals and vitamins, appeared to have helped me. Not only to degenerate more slowly than what is typical in my family, but also to have better general health, e.g., fewer colds. The following is a list of the supplements that I take and the reasons. Many were suggestions from a variety of health care professionals, although not necessarily AMA approved. Each person needs to verify for them self the efficacy of each supplement, both by taking to see if one improves and to stop taking to see if one feels worse.
Name Daily Dose Each Primary Reason Secondary Reason Notes ~Year Started/Stopped
Aspirin 4 ea 325 mg arthritis heart enteric coated 1975-2007
1 ea 81 mg 2013
C 1 ea 1000 mg arthritis antioxidant counter effects of aspirin 1986-2012
D 1 ea 2000 IU bone, teeth immune system high potency D3 2010
E 1 ea 1000 IU arthritis antioxidant counter effects of aspirin 1986
Centrum 1 ea health generic multi-vitamin 1988
B-100 1 ea health generic multi-B vitamins 1988
Coenzyme Q-10 2 ea 200 mg IBMPFD antioxidant 1997
Magnesium 1 ea 133 mg IBMPFD nervous system 1997
Calcium 1 ea 333 mg IBMPFD bone 1997
Zinc 1 ea 5 mg health combo Ca/Mg/Zn 1997
Ginkgo Biloba 1 ea 120 mg mental alertness 1999
MSM 1 ea 1000 mg arthritis 2000
Selenium 1 ea 20 mg health 2000
Flax seed oil 4 ea 1200 mg cardio-vascular immune system 2000
Lutein 1 ea 20 mg eyes antioxidant 2000
L-carnitine 1 ea 500 mg IBMPFD L-tartrate 2003
Tumeric 1 ea 60 mg mental alertness 2007
Resveratrol 1 ea 100 mg anti-oxidant 2009
Colostrum 1 ea 650 mg muscle health 2010-2012
ProBiotic 1 ea digestive/elimination 2010-2012
Potassium 1 ea 99 mg loss from blood pressure medication 2013
Quercetin 2 ea 250 mg anti-oxidant Bioflavonoid (with 700 mg Vitamin C) 2012
I split items up between after lunch and after dinner. An example of how dosages change: the original recommendation for aspirin was 8/day; I later found that 6/day was effective; and after I started the MSM I only need 2 or 4/day. I adjusted the dosage based on amount of joint inflammation (pain) that was steady over a week or two. I had to stop taking the aspirin in 2007 due to internal bleeding. Since I move less now the arthritis is not as bad, I have taken ibuprofen for a few days (up to a week) for reoccurring arthritis problems, to reduce the inflammation (no pain relief at all). I take generic Tylenol for reoccurring pain, often 1 or 2 each 500 mg tablets at night to allow sleeping.
Some items are in the same pill, i.e., can get one pill that contains Calcium/Magnesium/Zinc; so do not have to swallow so many items at one time. The pills should be only taken with a meal or within an hour after a meal. Some items I do not take at the frequency noted above when other problems occur, i.e., stop for a few days when tumeric causes bowel issues.
I do take prescription medications for blood pressure (high) and prostate issues (starting in 2012). So far, there appears to be no interaction with the supplements.