Living with Lymphedema: My Experience

Lymphedema is something you may have never heard of unless you or a loved one suffers from it. For long I have been thinking of writing about my Lymphedema journey. I wanted to share all the measures I am taking to handle it, the problems I am facing and the solutions I have found so far. The sole aim of writing this piece is to raise awareness towards this chronic and incurable condition. After all, only a Lymphie (nickname for a person who suffers from lymphedema) knows what it means to live with a chronic and progressive condition — one that is often unrecognized, misdiagnosed, and under-treated.

What is Lymphedema

In simple language, Lymphedema is swelling caused to one of the limbs- either an arm or a leg. On rare occasions, both arms or both legs could be affected. Sometimes the swelling of the arm can extend up to the chest area and swelling can be seen in the chest wall. Similarly, the swelling in the legs extends to the genital area, scrotal area, and also the abdomen. I have lymphedema in my left leg. My swelling goes till the left abdomen area. Just to give you a visualization, my left leg is almost twice the normal size.

The swelling could range from mild to severe as in the case of Lymphatic filariasis in which the swelling may become several times its normal size. Other symptoms may accompany the swelling which include:

• heaviness in leg or arm
• redness, warmth
• pain
• frequent infections

Cause of Lymphemdema

Lymphedema occurs when there is a blockage caused to the lymphatic system and so the lymph fluid is not able to drain well from a particular body part.

Sometimes it is congenital, as in the case of primary Lymphedema. However, Primary lymphedema is rare. Secondary lymphedema is the most common cause of the disease.

Secondary lymphedema occurs when a blockage to the lymphatic system is caused due to damage or removal of the lymph nodes or lymph vessels.

When is the Lymph node damaged or removed?

• As a part of any type of cancer treatment – Breast, ovarian, prostate, bladder, head and neck, penile, melanoma cancer. Almost 60% of cancer patients are at risk of Lymphedema after the treatment.
• During radiation therapy in the pelvic, groin, neck, or underarm areas.
• Any surgery in the pelvic area. ( For example: In my case, the damage was probably caused during kidney transplantation.)
• An infection to the lymph node due to parasite. For example: lymphatic filariasis. (Sometimes this too seems to be the reason in my case.)
• In a surgery which involves blood vessels of your limbs.
• When a tumor on the pelvic or abdominal area exerts pressure on the lymph node.

How did lymphedema occur to me?

I had my kidney transplantation in the year 2003 and I am on immuno-suppression drugs since then. The swelling in the lower limbs was common to me before the transplant, because of water retention. My legs used to develop swelling after transplant too if I used to stand for a long time or if I have kept my legs down for a long time. According to my doctors, it was normal.

In 2013, I observed an abnormality in the swelling. Swelling on my left leg was persistent and it extended to the extreme upper part whereas my right leg was normal in size. I consulted a few doctors and a vascular surgeon. Venous Doppler screening of the left limb and pelvis was done to rule out DVT (Deep Vein Thrombosis). No thrombosis was seen.

One of my doctors said it was Filaria and the other one insisted that it was lymphedema. However, for me, it was all the same because both have the same symptoms and both are said to be incurable. Still, to confirm, I did a Filaria antigen test, which came negative.

I feel (though not sure) that I developed Lymphedema due to one of these reasons.

1. A lymph node might have got damaged during my renal transplant surgery or during a biopsy test done for Tuberculosis after transplant.
2. My profession(Teaching) makes me sit in the same posture for 4-5 hours. I did not do any leg movement exercises intermittently. That might have harmed the leg’s blood circulation.

Common Problems faced and the solutions I have got to overcome each of them.

Lymphedema can cause a range of emotions. It is quite natural to feel angry, depressed, and frustrated sometimes because you know you don’t have any choice. However, Living successfully with lymphedema is a balancing act

– between being happy and feeling depressed,

– between being active without overdoing and making the condition worse.

The following are the common problems faced by lymphies and the ways I have found out to deal with them.

Social dilemma

“What’s wrong with your leg?” Relatives, friends, and even strangers may ask about the swelling. People approach all the time, asking questions, and making comments about the swollen limb. It is dependent on you how you feel about this swelling and how you want to react.

I remember one of the patients told me that she chided a person on the road saying it was none of his business when he asked her why one of her legs was swollen. Your health is your own business, so if you want to keep things private, you have every right to do so.

I generally turn these interactions into teachable moments, telling in brief about my disease. It is a small step from my side to raise awareness towards Lymphedema.

Clothing

I am sure most Lymphedema patients know about the frustration of trying to find clothes to fit/hide the affected limb. You spend the whole day at the mall only to come home in tears of disappointment and sadness.

There are many dresses in my closet that I can no longer wear. Even with compression socks on, my left leg is too wide to fit into normal-sized pants. I am too conscious to wear above ankle dresses or short tops over pants because swelling on my leg and the difference between the girth of both the legs will be clearly visible then.

Now I only buy clothes that cover my legs, which are loose enough not to pressure the lymph vessels. Palazzo pants, Cargo pants, Harem pants, legging-Kurti, long skirts, loose track pants are some of the most comfortable outfits for me now.

I am honestly trying to come over this consciousness and would soon start wearing the other outfits too.

Shoes

Shoe shopping, when you have lower limb lymphedema, is an annoying experience and sometimes traumatic too. I have to make myself mentally strong enough whenever I step out to shop for shoes because the same-sized shoes do not fit me and I have not found any store selling odd-sized shoes.

Facing and ignoring the glances of shopkeepers is also depressing. Sometimes, the salesman is so pissed off that he straightaway says “madam aapko jaisa chahiye waisa shoes yahan nahi milega”.(Madam, we can’t provide the type of shoes you want.)

Lymphies often have to purchase a pair of shoes bigger than the normal size or two pairs of shoes in two different sizes depending on how their feet swell. While in the former option the healthy leg has to suffer from the oversized shoe, the second option is a costly affair.

How I fixed my problem with shoes

• With trial and error, I have understood that the shoes/chappals/sandals with adjustable front straps are very comfortable. You can buy the same sized shoes for both the legs and loosen the strap of the swollen foot for optimal fit.
• Back-open footwear is also comfortable because the swelling on the ankle is not constant. It can increase or decrease according to the activity.
• I also make sure to wear Doctor sole footwear. Extra Soft, Padded, and cushioned foot-bed enhances the comfort of the swollen foot.
• I have already compromised on the style and design. Now I don’t compromise on the comfort and quality.

Pain

Sometimes the tingling pain in the whole limb is quite irritating. However, in my case, pain seldom occurs (once in a month or two).

To ease this pain I use some of the following methods.

• Elevate my lymphie leg above the heart level for half an hour by keeping one or two cushions.
• Massage gently with a pain reliever oil, such as mustard oil, sesame oil.
• Walk to increase blood circulation in the leg, if I have been sitting for long.
• Sometimes removing the compression socks and massaging only with a gentle pressure of your hands is quite relieving.

Difficulty in wearing compression socks

Compression socks are indispensable for lymphedema patients. Generally, the recommended compression level of socks for Lymphedema patients is between 20-50 mmHg, depending upon the lymphedema stage. It has to be worn every single day, but the socks can be hard to put on. This creates frustration, and it causes some people to give up on wearing compression hosiery.

Earlier it took around 7-10 minutes for me to wear the stockings but now with daily practice and some prep, I can wear it fast. You can also follow these tips:

• Wear the socks early in the morning because the leg is least swollen or inflamed in the morning.
• I wear it after taking a bath so that I don’t have to remove it until bedtime.
• Sit with your legs stretched straight while wearing socks.
• I apply a generous amount of moisturizing lotion all over the limb. Let it absorb the lotion and then wear socks. You can also apply talcum powder in the hot season.

• I wear gloves to pull the socks. Rubber grip gloves can make it much easier to put on compression stockings without damaging them. You can get it from any medical store. Nowadays in Covid times, it has become even easier to get these gloves in almost all general stores. The gloves save a lot of time, energy, and of course frustration. It saves a lot of money too because you don’t have to buy any of those costly gadgets such as stocking donner.

Factors that strain your lymphatic system – what you should avoid

• sitting or standing for prolonged periods: raise your legs and arms as often as possible.
• tight clothing: wear comfortable clothes to let the skin breathe.
• being overweight: puts additional strain on the lymph vessels.
• too much salt in the diet: holds the water in the body.
• long periods of sunbathing: heat dilates the vessels.
• Extreme cold: It will constrict the vessels.

Preventive measures to be taken in Lymphedema

The only question which every lymphie seeks an answer to, is Can Lymphedema be cured?

Although treatment can help control lymphedema, it currently does not have a cure. Stage 1 lymphedema may get reversed but the condition in other stages needs to be maintained so as not to worsen the condition.

The preventive measures which I follow/have followed are:

1. Exercise:

Certain exercises can play a role in reducing lymphedema flare-ups. It will increase the flow of lymph fluid and helps move it away from the swollen area, but care should be taken not to overstress the lymphie limb.

I do the following exercises religiously.

• Simple exercises with stretching such as neck rolls, pelvic tilts, leg and arm circles, ankle and wrist circles, hip and knee flexion, static glutes, and quads to stimulate lymph flow.

• Asanas like Tadasana(Mountain Pose), Viprit Karani(legs up to the wall), Sarvangasana(shoulder stand) to reduce swelling of the leg and increasing circulation in the lower body.

• Pranayam i.e. all the deep breathing exercises such as Anulom vilom kriya (Diaphgramatic breathing), Kapal Bhati (Cleansing breath), bhramri (bee breathing) to stimulate lymph nodes in deep tissue and for the elimination of toxins.

2. Compression socks:

Wearing compression stockings every day helps relieve fluid retention. Compression sleeves for arms, compression socks for legs are available in different sizes and different compression. One should consult the doctor for the correct compression stockings. Some people may require custom made compression garments.

Compression bandages also help increase the lymph drainage and reduce the swelling.

3. Dry brushing

It is a technique of using small, soft stroking movements with a body brush to stimulate the lymph flow. The brush should be made up of high-quality natural fiber.

It is important to know the proper direction of the stroking movement to guide the lymph fluid toward active lymph nodes for drainage. Your lymphatic therapist will help you in explaining the proper technique.

4. Pneumatic Compression device

An intermittent pneumatic compression (IPC) pump, is a machine that has an inflatable sleeve or stocking attached to it, with multiple chambers (like balloons) to stimulate the flow of lymph in the right direction.

I had purchased this machine(Lymphopress) and tried it for a few months under supervision. It helps relieve pain and maintain the condition. However, it should only be used according to a therapist’s advice. These pumps cannot be used in conditions like heart failure, deep venous thrombosis, or certain infections.

The next two treatments are also done on many patients. However, I have not tried any of them. These treatments include:

• Manual lymphatic drainage (MLD):

It is a gentle skin massage technique done by a certified lymphedema therapist (CLT) to drain out the accumulated fluid from the affected area by gently pushing and directing the fluid toward a working lymph node. It can be useful for some people with Lymphedema.

• Surgery:

In certain cases where the drainage is not at all possible and the skin of the affected area has also hardened, surgery (Liposuction, Lymphatic Bypass, lymphovenous transplant) is performed to drain out the fluid and remove fibrous tissue.

An important note to all my Lymphie friends:

I know this disease is said to be incurable, but I have not lost hope. Science has a lot to discover. Besides, there is something beyond science that can and has done wonders.

Why do some people with incurable diseases suddenly heal? This phenomenon has been ignored by medicine rather than investigated. I feel this is because of the power of our mind and faith in divine blessings which can activate the healing system of any human body.

The same power gives me the hope that one day I would be able to cure my Lymphedema and have both my legs in perfect symmetry once again. Science seems so small when it is compared to the omnipresent supreme power.

On that positive note, I would like you to share this with someone who needs to know about this disease. If you know anyone suffering from Lymphedema, do comment below and tell about his/her story.

Simply myself