For many, a diagnosis of sarcoidosis leaves more questions than answers. Some of these questions need to be answered by a medical professional, which is why we host Q&A sessions with our experts physician panels at FSR Patient Conferences. However, there are questions that doctors can’t answer, about experiences they can’t fully understand. These questions have answers that you can only know if you’ve been personally affected by sarcoidosis. We wanted to answer some of those questions for you, so we rallied our team of 73 awesome FSR Patient Ambassadors to help us out.

A while back we reached out for questions, and you answered! We received over 200 questions from people asking about a variety of related to life with sarcoidosis. All of the questions were reviewed and the most commonly asked ones were shared with our ambassadors to weigh in on based on their own experiences.

Since there was such a wide variety of questions, we categorized them into three overarching topics: hard conversations with friends and family, developing a healthy lifestyle, and how to navigate medical expenses. We’ll be tackling each of these three topics in a blog post and sharing them over the course of the next few months, so be sure to check back for more answered questions!

 

Working Towards a Healthier Lifestyle

Developing a healthy lifestyle that works for you can be hard. This week our patient ambassadors share tips on how to deal with bad pain/fatigue days and explain how they have improved their quality of life through holistic medicine and lifestyle changes. Let us know if you have had any similar successes and make sure to see who your local ambassador is!

 

What lifestyle changes or recommendations do you have for sarcoidosis patients?

“I searched for more than a year to find a diet that would help with the side effects of prednisone: the hunger cravings, weight gain, bloating. A ketogenic diet is a lifestyle that works for me and has helped with medication side effects. Not all diets are for everyone; it’s trial and error. I’ve been on it for more than two years and I feel so much better. It was hard to make the change, but it was worth it.”

“I have found that some mild exercises, walking and/or swimming pool exercises, have helped me stay more mobile. I have also found that eliminating wheat gluten and as much refined sugar as possible have greatly helped with GI issues. An anti-inflammatory diet can also greatly help and is simply a diet that is high in vegetables, lean meats and fruits.”

 

“Being diagnosed with neuro-sarcoidosis and gaining 80+ pounds from prednisone, I knew I had to make some lifestyle changes to remain as physically active as possible. This has consisted of omitting all processed and refined sugars from my diet, drinking plenty of water and eating more fruits and vegetables, especially smoothies!

A good exercise to start with for fatigue is brisk walking maybe 1-2 days per week and if tolerable, add one day per week. The key is to listen to your body and rest when needed.”

 

“For me the lifestyle change that has made the most significant impact to my life is my decision to go on disability. I was a successful network engineer in a top Fortune 500 company where I was highly valued. Deciding to apply for disability felt like succumbing to the disease at first. Now, I know that my decision to stop working has been the best choice for my quality of life. I now do not stress over ‘how will I get through the day?’ or ‘how will I be able to work those 14 hour days again?’ Today I just find joy in each moment.”

What holistic approaches have you tried and found worked?

“One of my favorite holistic treatments is acupuncture. Though you might not expect it, it’s actually incredibly relaxing. I always feel somewhat better afterwards, and the more often I get it done, the longer that relief lasts. Of course, the big drawback is the cost (it’s usually not cheap, and it’s usually not covered).

Another non-drug therapy that I live for is heat pads and patches. I often wake up with such severe back pain that I can barely move, and my neck/traps are almost always sore. I keep a constant supply of heat wraps of varying sizes in the closet (and 1 or 2 in my bag when I go out). They feel really good. I usually leave them for a couple hours because they offer both relief and relaxation.

One more drug-free approach that has been very helpful for me is TENS (transcutaneous electric nerve stimulation). It’s a device with wires that attach to electrodes that get stuck on various parts of your body. It feels like a vibration but that vibration takes the place of the pain that I’m feeling. Sometimes it’s a strong beat, so it kind of forces your muscles to contract, which then forces them to relax.”

Is there a lot of overlap between sarcoidosis and other diseases, including immune-related illnesses?

“I’ll start with a YES, but it’s not that simple. I don’t think I know anyone who only has sarcoidosis, most have a number of other conditions. That said, most of us have also had a number of misdiagnoses along the way, usually before they figured out it was sarcoidosis.

Also, many of the symptoms we experience can be a result of the medication we’ve been given to treat the disease, too. That’s why it’s so important to really pay attention to your body, and to address anything that causes you concern. Don’t be afraid to go back to the doctor (or at least call/email them) – their job is to monitor you.  But, they can only do that if you communicate openly and honestly.”

 

“Yes, and for this reason it is important to have all medical providers work together and be seen by a provider at the first sign of new symptom(s). For example, PCP (primary care physician) should communicate with all specialists, including test results and vice versa. Do not be afraid to advocate for your health and speed things up if necessary!”

What tips do you have for bad fatigue or pain days?

“Be compassionate to yourself. Don’t let others dictate what you should and shouldn’t do and respect your limitations. For bad pain days, have the firm belief that it is going to get better. Let it out, journal about the pain and describe everything about it. I find that it helps to just get it out of my head and it’s helpful to have those notes for your next doctor’s appointment.”

“Keep moving! Incorporate stretching as a daily routine and stay hydrated.”

 

“One of the most important things is to be patient with yourself. Don’t try to force yourself into your normal routine when your body is not cooperating. Even if you can get through the day, you’ll likely be paying for it for days to come, so it may not be worth it. See if you can take a nap, work from home, or get a late start (or early finish) to the day, or see what you can skip or reschedule.”

 

“Rest, rest, rest. Learn to be content with resting your mind, body and soul to get through the day(s). It is key that they are all in balance if possible. It does not happen overnight but with practice every day, it becomes much easier. For example, I learned the hard way how to say ‘No, I do not feel like doing that today.’”

If, after reading through our patient ambassadors responses you still have questions, feel free to submit them at our Ask the Ambassador page and if you would like to answer similar questions about your own experience, click here!

 

We would like to thank our patient ambassadors for all of their hard work, and specifically thank Robin Thomas, Heidi Junk, Robert Gross, Kerry Wong, Jessica Reid, Lisa McHale, Jackie Ploudre, Deborah Rice, Jeanne Fershleiser, Cathleen Terrano and Sharon Stewart for sharing their advice!