Myelodysplastic syndromes (MDS) are a group of disorders that affect bone marrow – the spongy tissue inside your bones where new blood cells are made. Bone marrow contains stem cells, or parent cells that divide and make new cells. MDS prevents new blood cells from becoming mature; MDS also causes the bone marrow to make abnormal stem cells that crowd the bone marrow so you don’t make enough normal blood cells. If you don’t have enough healthy blood cells, it can lead to symptoms like shortness of breath, tiredness, and bruising.
MDS is a chronic disease. That means you can't cure it, but you can manage its symptoms and live better with it. Your doctor can prescribe medications and other treatments to slow the disease and relieve symptoms.
You'll feel better if you also take good care of yourself during treatment. Eat healthy foods, get enough rest, and protect yourself from infections.
What Causes MDS Symptoms?
You need mature blood cells to do different jobs around your body:
- White blood cells fight germs to keep you healthy.
- Red blood cells carry oxygen to your organs and tissues.
- Platelets form clots to stop you from bleeding too much when you cut yourself.
Having too few healthy blood cells causes MDS symptoms like these:
- Shortness of breath and tiredness from too few red blood cells (anemia)
- Bleeding or bruising easily from a lack of platelets
- More infections than usual because of low white blood cells
It may be harder to work and do other activities when you feel tired, sick, or short of breath. Here are a few things you can do to get these symptoms under control.
Follow Your Treatment Plan
There's no cure for MDS, but there are a few treatments to help manage your symptoms. Your doctor can tell you which of these treatments might be best for you:
- Growth factors that stimulate your bone marrow to make more healthy blood cells
- Medicines to help your blood cells grow more quickly
- A blood transfusion to boost the number of healthy blood cells you have
- Antibiotics to treat infections
- Immunosuppressive therapies to help your bone marrow recover and rebuild
Follow your doctor's directions for taking your medicines. If you have side effects or other problems, don't just stop taking the drug. Your symptoms may come back. See your doctor for next steps.
Get Palliative Care
Palliative care isn't the same as the hospice care that's given at the end of life. It's a program designed to help you feel better during treatment for MDS and support you and your family through the process.
You'll see a group of health care providers for palliative care, including a:
- Doctor
- Nurse
- Pain specialist
- Dietitian
- Physical therapist
- Social worker
Your palliative care team will create a plan to manage both the emotional and physical symptoms of MDS. Palliative care may help to improve quality of life and prevent depression in people with chronic illnesses.
Avoid Infections
Having fewer white blood cells increases your risk for both mild infections, like colds, and more serious infections.
To stay healthy, avoid anyone who is coughing or sneezing. Don't visit crowded places like malls and movie theaters. If you need to go somewhere busy, wear a well-fitting mask.
Wash your hands often with warm water and soap, especially before you eat or touch your face. If you can't find a sink, clean your hands with an alcohol-based hand sanitizer.
Some foods contain bacteria that could make you sick. Cook meat and poultry all the way through – until there's no pink inside. Avoid unpasteurized dairy products. Peel fruits and vegetables like apples, squash, and cucumbers before you eat them. Wash any fruits and vegetables that don't have a peel.
Track Your Symptoms
Keep a record of your symptoms. It will help your doctor follow your progress and know when to adjust your treatment. Use a paper or digital diary to track your blood counts from blood tests, and your symptoms.
Every day, write down symptoms if you have:
- A fever
- Chills
- Bruising
- Bleeding
- Tiredness
- Side effects such as nausea, vomiting, diarrhea, or constipation from your medicine
Get Enough Rest
MDS can leave you very tired. Don't try to do more than you can handle.
Break your day into small chunks of time. Alternate periods of activity with rest. Ask friends and family to help with tasks like laundry or grocery shopping to give you time to relax.
Drink Extra Fluids
Diarrhea is caused by infections or medicines to manage MDS. Constipation can be a side effect of MDS medicines.
Drinking extra water will prevent you from becoming dehydrated if you have diarrhea. Extra fluid helps your bowels start moving again if you're constipated. Ask your doctor about other ways to manage these side effects, such as taking probiotics – good bacteria that keep your gut healthy.
Avoid Injuries
MDS can leave you low in the platelets that help your blood clot when you're injured. Be very careful when you shave or use a knife while cooking so you don’t cut yourself. Wear a helmet, knee pads, and other protective gear when you play sports or ride a bike to prevent injuries.
Take Care of Yourself – Body and Mind
A chronic condition like MDS can take a toll on your physical and emotional health. It's common for people with MDS to feel stressed or depressed. Take time to care for yourself.
Eat a well-balanced diet with lots of fruits, vegetables, and fiber. Stay active by doing activities you enjoy.
Relax in whatever way feels right to you. You might practice meditation or yoga, listen to music, or take a warm bath to wind down.
You may also consider joining a support group. You'll meet other people with MDS who can offer tips to cope with your symptoms. You can find both online and in-person support groups for MDS through an organization like the Aplastic Anemia & MDS International Foundation (AAMDS).
If you still feel stressed or overwhelmed, see a therapist, psychologist, or other mental health professional for advice.
When to Call Your Doctor
You may already have visits scheduled with your doctor to stay on top of your symptoms. Call your doctor in between appointments if your symptoms get worse or you have new symptoms like these:
- A fever higher than 100.4 F that lasts for more than an hour
- Shaking chills
- New bruises, tiny red spots on your skin, or a rash
- A very painful headache
- Sudden vision changes
- Blood in your poop or vomit
Call 911 or go to an emergency room right away for:
- Shortness of breath that comes on suddenly
- Chest pain
- Bleeding that you can't control
