Case study
I am 70 years old and have advanced MS with an EDSS of 7. I can’t lift my legs, so I can only walk a few metres backwards with a Zimmer frame, dragging my feet. I’ve got very swollen feet (see photo below) due to spending all but a few minutes of the day seated. I have had Doppler scans of my feet, and there’s no blockage. Also, I have no heart issues. To try and reduce the swelling, I have a lymphatic massage of the lower legs and feet done by a physio, which was successful but is no longer having any effect. In the last few weeks, I’ve been doing 20-30 minute sessions three times a week on a recumbent, Medi motion type exercise machine, but that doesn’t seem to have an effect. I’ve tried compression socks in the past, and they aggravated the swelling.
Prof G’s response
This patient illustrates a problem that people with multiple sclerosis (pwMS) who have reduced mobility commonly experience. It is called dependency oedema and typically causes swelling of the feet, ankles and legs. Dependency oedema is common among pwMS who are less mobile, typically those who have to use wheelchairs. It is characterised by swelling in the lower limbs (feet, ankles and legs) due to fluid accumulation.
Dependency oedema resulting from prolonged sitting and lack of leg movements impedes blood and lymph fluid circulation. The veins in the lower limbs have veins that allow one-way blood flow, i.e. away from the legs towards the heart. When standing or sitting, this flow is upwards and against gravity. To achieve flow against gravity, the calf muscles act as a pump; when the calf muscles contract, the veins are compressed, and blood flows upwards. Without calf muscle contraction, the blood and fluid accumulate in the tissues, manifesting as foot and ankle swelling.
Dependency oedema is not unique to pwMS limited mobility—people with normal mobility experience it when sitting for long periods, for example, on long-haul flights, other forms of long-distance travel, or just sitting at a desk all day.
Please be aware that foot swelling or pedal oedema (the medical term for foot swelling) is also a sign of heart, renal or kidney disease and can be a sign of deep vein thrombosis. It can be a side effect of specific medications (e.g. anti-hypertensives, steroids, DDAVP, ...) and can be part of a normal physiological state; for example, it is quite common in pregnancy. This is why, without a medical assessment and investigations, it is difficult for someone with MS to exclude these other causes of foot and leg swelling. This is why it is important to have a medical assessment when you first develop foot swelling. All these other causes of foot swelling have additional symptoms that can act as pointers towards a specific cause other than mobility-related dependency oedema.
For this discussion, I will assume this patient has been fully investigated, and all of these other causes of foot swelling have been excluded. He has simple dependency oedema due to poor mobility.
Managing dependency oedema effectively is part of the holistic management of MS to improve the comfort and quality of life for pwMS with reduced mobility. The following are some simple strategies to manage and mitigate dependency oedema:
1. Elevation of legs: elevating the legs above the level of the heart several times a day helps to promote venous return and fluid drainage, thereby reducing swelling. This can be achieved by using a footrest or pillow. Even short periods of elevation can make a significant difference over time. If you are a wheelchair user, some of the more expensive larger wheelchairs have this feature built into them
2. Regular exercise and movement: regular movement and exercise within an individual's capability is important. Leg stretches, foot rotations, and other gentle exercises can help stimulate blood flow and prevent fluid from pooling in the lower extremities. Consulting a physiotherapist to tailor an exercise plan is advisable. You can purchase electrical nerve stimulators that contract the calf muscles. The latter is called electrical muscle stimulation (EMS), which repeatedly contracts and relaxes the lower legs and feet muscles, activating the calf muscle pump to help increase blood flow.
3. Compression garments: wearing graduated compression stockings or wraps can aid in preventing fluid accumulation in the legs by applying gentle pressure to promote blood and lymph flow. Getting this via your HCP for the appropriate compression level is important. In the NHS, there are specialist lymphoedema clinics that do this. The ideal pressure is 30-40 mmHg. If the stockings are too tight, they can reduce blood flow to the feet and cause ischaemia, resulting in foot ulceration. As a general rule, stockings should not feel uncomfortable. Put them on and wait 10 minutes to get used to them. If, after 10 minutes, they feel too tight or cause pain or your toes change colour and become blue and/or cold, the stockings are likely too tight.
4. Proper nutrition and hydration: maintaining a good balanced diet and staying well-hydrated can also aid in managing oedema. Reducing salt intake helps prevent fluid retention. Please avoid diuretics. I have seen many patients being prescribed diuretics to treat foot swelling. Diuretics result in dehydration and hypovolaemia (reduced blood volume) and don’t deal with the problem of foot swelling due to fluid in the tissues and not inside blood vessels.
5. Positioning and seating adjustments: ensuring your wheelchair and seating are properly fitted and offer adequate support can prevent unnecessary strain contributing to swelling. Adjustments to the wheelchair for optimal leg positioning and specialised cushions can distribute pressure evenly and improve circulation.
6. Manual lymphatic drainage: a gentle foot and leg massage can encourage the movement of lymph fluids out of the affected limbs and can be performed by a certified lymphoedema therapist. It is a therapeutic option for reducing swelling and improving comfort. You can also purchase a mechanical massager or compression boot to do this. These are relatively inexpensive, but it is best to ask your HCP for advice on which one to purchase.
Things to look out for. PwMS with dependency oedema are at risk of deep vein thrombosis (DVT). If you develop calf pain and leg and foot swelling worsening in the leg with pain, you must seek medical attention urgently. The danger of a DVT is potentially life-threatening pulmonary embolism.
When leg swelling becomes extreme, it can cause skin tightness, increasing pressure in the lower leg compartments. This form of compartment syndrome results in reduced blood supply to the skin. If this occurs, you can get ischaemic or venous leg ulcers and break down to the skin with a superimposed infection that can spread and cause cellulitis or lymphangitis (infections in the lymphatics). If this occurs, you will need antibiotics and dressings for the ulcer.
While dependency oedema is a common issue for pwMS who have reduced mobility, adopting a multi-faceted approach to its management can significantly reduce its impact. Incorporating leg elevation, movement and exercise, compression therapy, dietary adjustments, proper seating, lymphatic drainage, and consistent medical oversight can help manage symptoms and improve overall well-being for pwMS with dependency oedema.
For this patient, I recommend using a combination of the above, and he may need to purchase an electrical muscle stimulation (EMS) device to help keep his calf muscle pump working.
I assume many of you have dependency oedema and have developed your self-management hacks to manage the problem. Please share them with us. Anything that can help this patient beyond what I have said here would be much appreciated. Thank you.
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General Disclaimer
Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Queen Mary University of London or Barts Health NHS Trust. The advice is intended as general and should not be interpreted as personal clinical advice. If you have problems, please tell your healthcare professional, who will be able to help you.
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