When graft vs. host disease (GVHD) affects the joints, fascia, and muscles throughout the body, movement becomes harder. Joint stiffness, muscle pain, and weakness are common, and can make carrying out daily activities difficult.
Imagine a bicycle for a moment… the wheels only work with the help of supportive spokes, and chains and gears that make rotation possible. Our musculoskeletal system isn’t so different. Bending our knees to walk, for example, not only requires functional knee joints but supportive connective tissue (fascia) and muscles to make the motion happen. It’s an interconnected system that relies on each part to pull its weight (literally and figuratively) to make the end result — movement — happen. A disruption in one or more parts of the system throws everything off-kilter.
A Crash Course on the Musculoskeletal System
Most of us are familiar with joints and muscles. Our joints — like our ankles, knees, and elbows — are where our bones come together. We have hundreds of joints in our bodies. Some of our joints don’t move and simply provide us with structural support, while others are moveable in different ways that allow us to bend, straighten, twist, pivot, etc.
Our muscles are soft tissues throughout our bodies that not only play an important role in movement but automatic bodily functions, too. We can move some of our muscles voluntarily — meaning we can control them to hold still or move different parts of our body, to walk or throw a ball, for instance — while others are tasked with involuntary, automatic movements we don’t control, like keeping our heart beating or lungs moving in and out to breathe.
Fascia, on the other hand, isn’t necessarily something that gets talked about a lot, but it’s equally important — you can think of it as the glue that holds everything together, a layer of connective tissue that wraps around and stabilizes every bodily structure we have…we’re talking every muscle, bone, nerve, blood vessel, organ, joint…you name it! If it’s inside our body, it’s just about guaranteed that fascia surrounds it.
When our joints, fascia, and muscles are healthy, they allow us to move freely and live our lives unencumbered by pain. When inflammation and disease attack these areas of the body, as is the case with chronic GVHD, the exact opposite is true.
Symptoms of GVHD of the Joints, Fascia, and Muscles
Symptoms that arise from GVHD of the musculoskeletal system — our joints, fascia, and muscles — are the result of an overactive immune response that leads to inflammation in these areas of the body. Each one has its own medical terminology: joint inflammation is known as arthritis; fasciitis is the medical term used to describe inflammation of fascia; and myositis, or more specifically polymyositis, refers to inflammation of muscles.
When one or more of those inflammatory responses is happening, symptoms may include:
- Muscle pain, cramping, or spasms
- Joint pain and stiffness
- Swelling, called edema
- Tight or weak muscles, meaning your muscles may feel “tired,” like you’ve just worked out
- Restrictions to range of motion, meaning you have trouble moving your arms, legs, feet, wrists, neck, etc.
- Contractures, or tightening or shortening of muscles that leaves them in a “fixed” position
- Sclerosis, or hardening / thickening of the skin
If you’re experiencing any of these symptoms, it’s important to talk to your doctors to determine the cause.
Diagnosing Musculoskeletal GVHD
There’s not one definitive test to confirm GVHD of the joints, muscles, and fascia. Rather, doctors will utilize a variety of different tests — in combination with a physical exam — to make the diagnosis. These may include blood tests (measuring creatinine phosphokinase and aldolase), imaging tests (like X-rays or MRI’s), muscle biopsies, and an electromyography (EMG) assessment, to test muscular reactions to nerve impulses.
Doctors also use several “scales” to assess the health of the joints, fascia, and muscles in someone with GVHD, to help determine the severity of symptoms and their impact on activities of daily living. The National Institutes of Health (NIH) joint/fascia scale and Photographic Range of Motion (P-ROM) scale are common examples.
Treatment and Rehabilitation
For any manifestation of chronic GVHD — including GVHD of the muscles, fascia, and joints — corticosteroids are the first-line treatment, either alone or in combination with other immunosuppressive drugs. This helps bring the overactive immune response fueling GVHD under control.
Physical (PT) and occupational therapy (OT) also play an important role in managing GVHD of the musculoskeletal system. Deep tissue massage, strength building exercises, stretching, adaptive equipment, splints or casts, and activity modifications are all ways PT or OT can help.
Sustained, low intensity stretching exercises, for example, can be especially helpful in relieving joint stiffness and contractures, and improving range of motion. Sustained stretching simply means that you hold the stretches for 30 to 60 seconds each, to give your fascia and muscles time to fully release.
If you’d like to try sustained stretching at home, here’s a few tips to help you get the most out of it:
- If your skin is dry or tight, be sure to moisturize before beginning to avoid cracks.
- Try to stretch each of your joints (i.e. neck, shoulders, elbows, wrists, hips, knees, and ankles/feet) one or two times a day, holding each stretch for at least 30 to 60 seconds or longer — the longer the better!
- Stretching should always be smooth without bouncing or jerky movements.
- If you have trouble maintaining balance while standing, find stretches that can be done seated or lying down.
- Discomfort is normal and to be expected when performing a deep stretch, but it should never be painful. If you experience pain back off, it’s a sign you’re pushing too far!
Here’s a great website with stretches to try:
https://www.mskcc.org/cancer-care/patient-education/stretching-exercises-gvhd
And be sure to check out this presentation on BMTinfonet.org to learn more about the exercises, stretches, and devices physical and occupational therapists recommend for patients with GVHD: https://bmtinfonet.org/video/2022-GVHD-rehab-exercises-and-devices.
Just remember…always talk to your doctor before beginning a new exercise program to ensure it’s safe for you!
The Bottom Line
GVHD of the joints, fascia, and muscles can limit activities of daily living significantly. The joint pain, stiffness, and muscle weakness that results can make it difficult to function normally. Talk to your doctor immediately if you’ve had a bone marrow or stem cell transplant and develop musculoskeletal symptoms — they’ll decide what treatments will be most helpful, often a combination of corticosteroids and other immunosuppressive medications in conjunction with physical and occupational therapy. There are numerous exercises, stretches, and adaptive equipment/devices that can help!
Sources
- https://bmtinfonet.org/transplant-article/chronic-gvhd-joints-fascia-and-muscles
- https://my.clevelandclinic.org/health/body/25137-joints
- https://my.clevelandclinic.org/health/body/21887-muscle
- https://my.clevelandclinic.org/health/body/23251-fascia
- https://www.hopkinsmedicine.org/health/wellness-and-prevention/anatomy-of-a-joint
- https://ashpublications.org/bloodadvances/article/4/1/40/430034/Refined-National-Institutes-of-Health-response
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4014356/
- https://bmtinfonet.org/video/2022-GVHD-rehab-exercises-and-devices
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9689675/
- https://network.nmdp.org/services-support/hematology-oncology/post-transplant-care/gvhd-screening/screening-muscles-fascia-and-joints-for-chronic-gvhd
- https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/electromyography-emg#:~:text=Neurology%20Diagnosis%20and%20Screening%20for,slight%20contraction%20and%20forceful%20contraction
- https://www.mskcc.org/cancer-care/patient-education/stretching-exercises-gvhd