Tracey Iraca, MDS advocate and Executive Director of the MDS Foundation, discusses the effect of fatigue and how to manage it.

Myelodysplastic syndromes (MDS) are a group of conditions in which blood cells do not mature or become healthy cells. Depending on the type of MDS, a person might have a low count of healthy red blood cells, white blood cells, or platelets.

Fatigue is one of the most common symptoms of MDS. A 2015 study of 280 newly diagnosed, higher risk people with MDS reported that 92% had chronic fatigue.

A 2020 review also cited earlier research on the immense effect of fatigue on quality of life, with people reporting an inability to perform activities of daily living and reduced ability to socialize. These experiences led to feelings of frustration and depression.

Healthline spoke with Tracey Iraca, Executive Director of the MDS Foundation, about fatigue in MDS and strategies to help manage it.

This interview has been edited for brevity, length, and clarity.

Fatigue is very common in MDS. One of the most common symptoms in MDS is anemia, so low red blood cells. The anemia is what causes the fatigue. [Note: Anemia occurs when your blood doesn’t have enough healthy red blood cells to carry oxygen throughout your body.]

Without oxygen, you don’t have the same amount of energy compared to people who have a normal production of red blood cells.

The treatments for MDS are not always easy treatments. Bone marrow transplant is the only curative treatment for MDS right now, but it can be very difficult on the body. So it’s more like pure exhaustion than just fatigue.

It can be tough while you are trying to recover and your body is trying to build back all of those blood cells that you had to deplete for your transplant. And with the chemotherapy, it can be an exhausting time.

With MDS, all three bloodlines can be affected. So you can be anemic. You can also have low platelets or low white cell count. And in those cases, you may also have a low immune system. So if your white blood cells aren’t where they should be and you get sick or you are more open to infection, that can bring you down and make you feel really tired.

In general, MDS can affect your whole body physically and mentally. Until you find a treatment that works for you and helps those blood cells to produce properly, there’s a good chance that you’re going to be pretty tired.

Fatigue can have a huge impact on MDS patients, both emotionally and physically.

Emotionally, MDS can be frustrating because you may not look sick. So if you’ve got fatigue and you say you feel tired, you’ve got people who are just like, “Oh, I know, I’m tired too,” and it’s not the same.

There’s a really big difference between being tired and having fatigue. Fatigue is when you sleep all night, but you wake up and you are still tired. Fatigue isn’t something you can sleep off. It’s something that is happening to your body that is very different from just being tired.

So I know that can be frustrating for patients — that people don’t understand the difference between the two.

If you are a patient who’s still working, fatigue can really get in the way. It can absolutely keep you from being able to do your job.

If you are expected to be keeping up with family events and parties, you just don’t have the energy you had before. It can get in the way of your social life. Maybe you’re not able to go out with friends or do the things that you used to do.

I know people who have exercised regularly their whole life and all of a sudden now they can’t swim the laps they could swim or they can’t walk the same amount of steps as they did before. And that can be upsetting both in a mental and physical way.

One of the ways that you can feel better with fatigue is being able to rest when you need to rest. And sometimes if you are raising a family or if you’re expected to work, you don’t get to do that.

Resting is a funny balance. So you want to rest, but you also don’t want to sleep so much that you make your fatigue worse.

Obviously if you’re not feeling well, if you’re short of breath, if there are any physical symptoms, you don’t want to push it. You want to take the short naps or the time that you need. If you’re getting eight to nine hours of sleep at night, that’s a good amount of sleep.

Try to remain awake or active during the day. Even though it may seem the opposite of what you need, exercising actually really does help with fatigue. Taking a short walk, spending some time on your feet, and doing things can help with your fatigue.

The most important thing to do, I think, is to communicate with friends and family.

Many people who are diagnosed with MDS have never met anyone else who’s been diagnosed with it or have never heard of it. So I think your family most likely doesn’t really understand what you’re going through.

One of the better ways, I think, to cope with that is to make sure that you communicate. Especially as soon as you’ve been diagnosed, I think it’s really important to learn everything you can about MDS and to empower yourself with that information.

And when you do that, you may feel more comfortable sharing that with your colleagues and your friends and family. You’ve got a support system around you that tells you it’s OK to take a break. They’ll understand that it’s time for you to go take a walk because you’re feeling really sluggish, but you need that walk to pick you back up again.

Also, definitely reach out to other people who have MDS. We have live patient and family forums where people get the opportunity to meet and chat with people who have MDS.

It’s nice because MDS come in so many different shapes and sizes. Forums can give people the opportunity to meet someone who’s sharing some similar symptoms or even having a similar family or work situation. So they have the opportunity to meet and to talk that through.

The support groups are also wonderful. We’ve got patient-led support groups that are more frequent than our patient and family forums, and you can get in touch with those folks.

I think it’s always important to mention all of your symptoms to a healthcare provider. I know writing down everything that you feel and making sure that you’ve got your list of questions can help.

After reporting your fatigue to your doctor, you may also want to discuss warning signs that this may not just be fatigue.

Make sure that you talk with your doctor and you say that we’ve already discussed how I’m exhausted when I wake up, how I can no longer do the things I used to do. I can’t keep up with my children or my spouse, and we know that that’s fatigue due to anemia, but what are some warning signs of what could happen? And I should know that when that happens, I need to call somebody or I need to go see someone.

There may also be tools and tricks that your healthcare team has to manage your fatigue that they’ve heard from other patients.

There are support groups who do nothing but talk about fatigue. There are webinars that discuss different ways that you can manage your fatigue. You can hear from other patients ways that they manage it, or even just talk with them about validating your feelings.

In general, it’s that balance of not giving into the fatigue, but also not pushing yourself so hard that you fall or that you get hurt or that you make your situation worse. So move when you can and rest when you can, but don’t completely give into it every time.

Tracey joined the MDS Foundation in 2004 as a part-time Patient Coordinator, assisting with patient education programs. As Executive Director, Tracey now oversees all daily business activities, including finances, staffing, and projects to support the mission of MDSF. She works with the MDSF Board of Directors on strategic planning for meeting the ongoing needs of MDS patients and healthcare professionals. Tracey manages the corporate grants program and is responsible for all corporate relations, organizational partnerships, and new business development.

To contact the MDS Foundation, call 1-(800)-637-0839.