This is a collection of Q and As about lymphoedema that I did on social media during March 2023 for Lymphoedema Awareness Month.
Q1: What is lymphoedema and why is it different from other types of swelling?·
Lymphoedema is a type of swelling caused by damage to/removal of lymphatics or faulty lymphatics.
· It is not caused by inflammation (although it can lead to inflammation in your skin layers)
· It is not improved by water tablets ( diuretics) because lymphatics are separate from your blood stream.
· It contains more protein than other types of swelling and therefore is more prone to infection
· Lymphoedema improves with treatments to the lymphatic system, other swellings do not ( at least not significantly)
Q2: What exactly is the lymphatic system?
· The lymphatic system is AMAZING!
· It removes excess fluid from your body and delivers it back to the bloddstream so that your kidneys can excrete it – about 4L returned each day
· It delivers the waste products from your cells and organs back to your bloodstream to be recycled or excreted.
· It delivers fats from your gut to the bloodstream to be used as fuel.
· It detects viruses and bacteria and starts your immune response to fight infection ( hence swollen glands)
· Without it, we would be toxic, hugely bloated and full of viruses and bacteria. Quite the unsung hero….
Q3: How does the lymphatic system work?
· It has two main systems: the deep lymphatic vessels and the superficial system ( lying within your skin layers). These are connected to each other.
· The deep lymphatics consist of vein-like vessels and lymph nodes
· The nodes are concentrated around your armpit, groin, neck and organs.
· They are like filtration and recycling plants, filtering your waste for bacteria and viruses.
· The waste is shunted against gravity towards and then into the veins of your neck, using muscle activity and deep breathing to pump it upwards.
· Even your brain has lymphatics, but this was only discovered recently. Think of all the waste that our brain activity must cause!
· Your surface lymphatics become very important when the deep system is damaged.
Q4: What happens when the lymphatics are damaged??
· Well, the lymphatic system, being the hero that it is, spreads out the work load and tries to compensate for the damage.
· If nodes are damaged/removed/blocked the surface(skin) lymphatics move excess fluid and waste past the damaged area and to the nearest healthy nodes.
· The deep vessels, like a system of pipes, shunts the lymph through the remaining system and up towards the neck, like before.
· If you’ve got robust lymphatics genetically, are a normal weight and keep fairly active, then your system usually compensates with no ill-effects
· If your system can’t compensate, your lymphatic system gets congested and the result is, you’ve guessed it, lymphoedema.
Q5: Where in your body does lymphoedema occur??
· Lymphoedema occurs near the area where the lymphatics have been damaged and also downstream of it.
· Removal of armpit nodes can cause lymphoedema in the arm (same side)
· If you have damage/removal of nodes in the groin/pelvis, it can occur in the leg(s) or genitals.
· Damage to the nodes in your neck can cause lymphoedema in the face and neck.
· If you have damage/removal of lymphatics near the collarbone and breast, you may get breast lymphoedema
Q6: Why can lymphoedema happen years after my treatment?
· Lymphoedema occurs when your lymphatic system gets overloaded and can’t clear excess fluid. This doesn’t happen right away….
· Imagine a pipe system where some pipes were removed and the rest had to compensate. It may be months/years later when they get congested.
· If you put on excess weight or become sedentary it will add to the overload on your lymphatics.
· Ageing also makes your lymphatics more sluggish ( like most other body systems)
· Only a small number of new lymphoedema is due to cancer recurring.
· If you have a severe illness/infection, it stresses your immune system ( your lymphatics) and may contribute to overload and congestion.
Q7: If I drink lots of water, will it make my lymphoedema worse?
· Erm…it doesn’t have any direct effect at all, at least in most people.
· When you drink water, it enters your bloodstream and any excess is excreted by your kidneys.
· Remember that the lymphatics are a drainage system that is (for the most part) separate from your bloodstream. So drinking lots of water is not going to make your lymphoedema swelling worse.
· However, I have had one patient tell me that drinking water makes their swelling worse, so there may be outliers like her, who have stronger links between lymphatics and bloodstream. But that is very rare.
Q8: How does dry brushing your skin help?
· Dry brushing (using a skin brush on dry skin) really helps your surface (skin) lymphatics.
· If you have had nodes removed, you can use the brush to assist the fluid flow past the affected area (groin/armpit) to the nearest nodes.
· Don’t do on frail or broken skin, mind you.
· Dry-brushing is also good for orange-peel skin by the way….just saying!
· Dry brushing does not affect the deeper lymphatics, they need other techniques
Q9: Can lymphoedema be prevented?
· Yes it can
· The first thing you need to know is your risk level – this determines how much effort you need to do to prevent it.
· If you are low risk and had no lymhoedema in the first year after treatment, you can continue life as normal. Just keep your normal and exercise regularly.
· If you are high risk e.g.axillary clearance or groin dissection, then you need to take plenty of preventative action.
· See the HSE lymphoedema risk charts (see Q22 for links)
Q10: How do I reduce my risk?
· Lose weight: If you are carrying extra body weight , it puts extra pressure on your lymphatic system.
· Sometimes losing weight alone can reverse low-grade lymphoedema.
· Exercise is really good for your lymphatic system: remember the ‘muscle pump’ we spoke of? Lymphatics use this muscle activity to pump the lymph fluid towards your neck.
· Exercise makes you breathe deeply too, which adds to the muscle pump.
· Deep (belly) breaths in their own right are good for your lymphatics. As the diaphragm is a really strong ‘pump’
· Lymphatics are part of your immune system so if nodes are removed/damaged you are more prone to getting an infection, therefore avoid getting cuts and burns on the affected body part, within reason. Don't change your whole life because of this!
· If you DO get a cut/burn, don’t panic, just apply antiseptic or burn cream.
· Massage surgical scars, as directed by your medical team, so that they don’t stick to underlying tissue
· Do regular skin and lymphatic massages. I Know! I Know! But you brush your teeth every day a few times so why not 5 minutes for this?? It is good for general health ( once disease-free) AND is a great way to monitor for early signs of lymphoedema.
· Since we know lymphoedema is preventable, it’s well worth monitoring for early signs, so it can then be reversed.
· The HSE has really good risk reduction leaflets. See Q22 for links.
Q11: What are the early signs of lymphoedema? ( Will constantly checking be a bit OTT?)
· Look, you don’t want to get obsessive about the possibility of getting lymphoedema…but….
· If you are high risk, put 5 minutes of daily massage and monitoring in the same category as hair-washing or teeth brushing: we do this every day to prevent tooth decay and no one complains.
· If you catch lymphoedema early, it can be reversed…and by yourself too…PEOPLE POWER!
· The early signs are often there before it turns up in measurements. You can treat it yourself with massage…No Panic
HERE’S WHAT TO LOOK FOR:
· Congestion or thickening of the skin at the top of your limb is usually the first sign, which you will pick up with daily massage.
· Watch/rings/clothes get tight (arm)
· A feeling of something under your arm
· Shoes and pants tight (legs)
· Bra ill-fitting and tight ( breast)
· Veins or hollows on skin surface not as obvious as on other side
· A feeling of heaviness/tightness/tingling in the limb or body part ( this last one can have other causes too)
Q12: If exercise is good, why do I hear of people getting lymphoedema after exercise??
· Yes, exercise is good for your lymphatics, remember the ‘muscle pump?
· But exercise also causes cellular waste, which can stress your lymphatics system IF IT IS ALREADY OVERLOADED and can result in or worsen swelling.
· This is not a reason to avoid exercise, but you may have to modify it by wearing a compression garment or doing extra massage afterwards.
· Get advice from a lymphatic therapist because treatment helps this.
· If you are trying some new or heavy exercise for the first time, take it easy, assess how you go and build up gradually.
Q13: Why can’t I get blood tests of blood pressure checks done on my affected arm?
· Firstly, this advice is really only for people who are at high-risk of getting lymphoedema in their arm e.g. axillary clearance.
· The reason blood tests are a risk is that they break the skin and are a potential source of infection or bleeding, which then causes inflammation and swelling.
· If you really HAVE to get a blood test done on your arm, don’t panic. Just be vigilant for signs of infection of bleeding/swelling and get treatment for this if it occurs ( most likely not)
· Getting BP taken causes a squeezing in your arm, which can cause swelling below the cuff IF YOUR ARM IS ALREADY CONGESTED. If your affected arm MUST be used, just do extra massage after it.
· Try not get repeated BPs done on the arm e.g.during a surgical procedure.
Q14: Will flying put me at risk of swelling and lymphoedema?
· Here’s the thing – flying puts ALL of us at risk of swelling. The change in atmospheric pressure changes the hydraulics all around our system, resulting in puffy ankles, hands or face.
· People with naturally sluggish lymphatics suffer the most or those with damaged lymphatic systems.
· If you already have lymphoedema, you need to wear your garment for the entire day of travel.
· If you are in a high-risk group, you don’t need to wear a garments for short flights, but it is advisable to wear one for long-haul flights.
Q15: Can Lymphoedema be cured??
OOH …this is the big one….
· Yes and No
· The lymphoedema itself can be reversed in certain circumstances but the CAUSE of it often cannot, so you need to do a bit of maintenance to keep it at bay.
· Reversing it (putting it into remission, if you like) is easiest if caught early…hence the need to monitor and prevent – see above!
· Treatment can also reverse established lymphoedema if it is done frequently, and is accompanied by lots and lots of self-treatment and patience.
· There are now surgical treatments available in some countries (not Ireland, yet), but you still need to wear garments and put in maintenance to maintain the improvement. See guidelines in Q22 for details.
· So you can see why prevention and self-monitoring is the easiest option
· You must become your own expert on lymphoedema – without letting it take over your life, I might add.
· Knowledge is power and being in control will reduce your stress.
· There are now All-Ireland National Guidelines on Lymphoedema 2022. These are for health professionals but answer all the questions you or your doctor might have. See Q22 for links.
Q16: What are the best treatments for lymphoedema?
· Most important thing is to lose excess weight and start exercising – this takes care of a lot.
· Manual Lymphatic Drainage or MLD, is a massage regime for your lymphatics. It stimulates your healthy lymphatics and moves excess fluid from your swollen limb to the nearest healthy nodes. See resources Q22.
· YOU NEED TO LEARN THIS YOURSELF and not be depending on a therapist all the time. (This will save money too)
· Some people use a vibrating massager on stubborn areas that are thickened or hard….but don’t overdo it.
· Bandaging the swollen limb softens it and squeezes out the excess fluid, Everyone with lymphoedema should be able to self-bandage. No excuses.
· This allows you to take control of the situation and self-treat at any time.
· Compression garments are used to help squish fluid from the swollen limb or body part ( even face garments available)
· There are great night-time garments available nowadays too.
· You may even be able to wean off your garments if your lymphoedema reverses ( let your therapist guide you on this)
Q17: Do alternative therapies work?
· Whatever your opinion on them, at least alternative therapies do not ignore the lymphatics the way that Western Medicine does. Just saying.
· Acupuncture and Chinese Medicie, Ayurveda, homeopathy and reflexology all have treatment regimes for the lymphatics.
· However, strong scientific evidence to support these is not there….To be accepted as evidence, very rigorous standards of research have to be used, and sadly (for the most part) alternative therapies don’t do this.
· If you wish to try alternative therapies, be scientific about it: take measurements of your limb before and after your course of treatment and then judge for yourself.
· Remember that you are treating 2 things: your general lymphatic system and then the swollen limb itself. You may improve your general lymphatic system but the limb may need a different approach.
· Regardless of what works for you, remember if you are high risk, you will still need a maintenance programme to keep it at bay.
Q18: Does Food Affect Lymphoedema?
· There is no evidence that certain food affect lymphoedema HOWEVER, clinically we see that it seems to in some people, in the same way that certain foods can kick off your sinuses or bloat your tummy.
· Remember that your lymphatics are your immune system. Therefore, if you eat food that your body reacts negatively to, you put your lymphatic system under pressure.
· I know one person who reduced her lymphoedema significantly, just by giving up red wine….
· Keep a food diary and see for yourself if eating or drinking certain foods affects the degree of your lymphoedema.
Q19: Does taking Anti-inflammatories (NSAIDS) help my lymphoedema?
· Not usually
· NSAIDS are used to reduce inflammation and therefore they reduce any swelling that is DUE to inflammation.
· Remember that lymphoedema is a different type of swelling. It is not caused by inflammation or injury but by overload of your lymphatic system. Having said that, lymphoedema can actually cause inflammation of your skin layers, so taking the occasional NSAID night help this aspect a little, if you have a sudden worsening of your lymphoedema. But not to be used regularly.
Q20: Does using Kinesiotherapy tape help?
· Sure does.
· Remember that when the deep lymphatics are damaged, we use our skin lymphatics to compensate.
· K-tape, when applied in certain ways, causes extra movement of your skin layers and therefore increased flow through your skin.
· There are lots of videos showing how to do this for lymphoedema.
Q21: Does stress make my lymphoedema worse?
· There is no evidence showing that stress affects lymphoedema
· However, in some people, this is in fact the case.
· This is likely because stress causes your body to secrete stress hormones, such as adrenaline and cortisol. These causes your cells to become more active, and therefore creates more cellular waste.
· Remember that the lymphatics help clear our cellular waste? Well, it follows that if stress causes more cellular waste, then stress MAY cause lymphoedema to get worse in some people.
· Another good reason to do good stress management and take some time to chill…..
Q22: What are some good lymphoedema resources??
· Lymphoedema Pocket Medic if you already have lymphoedema
· All Ireland Lymphoedema Guidelines for your doctor or health provider, but also worth a snoop yourself.
· HSE lymphoedema prevention leaflets (scroll down to cancer patients information leaflets)
· My own videos for are: Midwest Physiotherapy Lymphoedema DIY and Yogaphysiozone Youtube for lymphatics and lymphoedema
THE END (whew!)