Our May Women on Wellness group discussion focused on a topic that is always a big concern, fatigue. This is a group of women who meet monthly on Zoom and share a common bond of having FSHD. “We speak openly with each other, however we maintain confidentiality of who shares what, as this is a request of the group members,” say moderators and scribe Ranae Beeker and Helen Cave. “Notes are taken and de-identified, so that others may benefit from the collective intellect and experience of the group members.” We thank WOW for their outstanding work!
Disclaimer: The information provided below is for educational purposes only. Always consult your healthcare provider if you are interested in trying any of the approaches described below.
Our members shared the use of medications prescribed by a provider or a Telehealth site (not available in every state) to help with fatigue and/or ADHD.
- Stimulants such as Provigil/Modafinil or Adderall were mentioned. They are noted by members to improve focus and ability to get things done (more energy)
- Importance noted to take only as prescribed.
- ○ Be sure the prescribing provider is aware of all of your illness/diseases/comorbidities, to assure it is prescribed as safely as possible.
- We discussed cutting pills to titrate dosages.
- PLEASE NOTE: Only cut pills in half that are scored (have an distinguished indentation in the pill). If the pill is not scored, ALWAYS consult a pharmacist prior to cutting the pill. Many pills are not designed to be cut, you won’t know this unless you consult your pharmacist. Your local pharmacist is a great resource for all medications, over the counter (OTC) as well as prescribed.
- Many medications have cross reactions that we may not be aware of.
- Check out all new meds and their compatibility with what you are already taking, with your pharmacist.
Food and supplements
- Assuring enough protein in our diet helps with energy.
- Consider having your Vitamin B levels checked.
- Vitamin B complex may help increase energy levels.
- One member notes it helps with brain function for her, helps with being more alert.
- One member gets a Vitamin B12 injection 2x/month.
- One member drinks a tea with an Adaptogen Mushroom complex. These are not the same as hallucinogenic mushrooms. They do help reduce stress, anxiety and fatigue. She purchases from : https://www.malamamushrooms.com/
- Avoiding sugar and inflammatory promoting foods (white flour, white rice, white potatoes, preservative filled foods, pre-prepared foods are a few examples) has helped many in the group.
- Importance of reading labels, sugar is hidden in many packaged foods.
- Doing our best to keep our weight to an optimal level. Knowing this is challenging with our limited mobility. Less weight on the muscles is less for them to mobilize.
- We need to ingest enough protein to promote and preserve our muscles. Generally this is 1gm / 1kg of weight per day. The type of protein is also important,
- We heard from a couple of members that organic protein sources were the most helpful for them.
- We heard that many of us have a protein shake at different times of the day (breakfast, lunch, mid-afternoon)
- We heard of delicious shakes with different sources of protein (i.e. whey, greek yogurt, chia seeds, milk etc…) and berries, spinach, and different forms of chocolate!.
- Some were able to get a protein shake with 42 g of protein.
- Coffee can be helpful with its caffeine.
- Take an afternoon break, enjoy a cup of coffee
- We heard that some have reached out to a nutritionist/health coach or an endocrinologist with positive results.
- The Society had a nutritionist speak at a University educational session in 2021, who provided great information. This presentation can be viewed on the YouTube channel at this link: Nutrition and FSHD
- We heard from several members that listening to our bodies is very important.
- “Horizontal days” are important. Alternating between sitting and lying down… canceling everything and resting.
- Staying hydrated is very important.
- Don’t give in to the expectation of others, be aware of your own limitations.
We know that fatigue can be mentally and physically draining. Working on promoting our mental health will also benefit our physical health.
- One member shares that she has a gratitude journal… She looks for at least one positive thing that happened in each day. It has been helpful to her on challenging days, to read over it, and see how other tough days brought a source of gratitude.
- It has also helped her to recognize that these are the feelings of today, tomorrow is a new day, with new opportunities.
- We talked about thoughts of our bodies, and the connotations we have of our own body. It can be hard to separate feeling good about ourselves and how we view for example- mobility and weight.
- And societal pressures and expectations.
- Our bodies, as challenging as they are, are the vessels that get us through each and every day. It is important that we offer gratitude to these vessels.
We heard of a well recommended book: The body is not an apology