Hi, my name is DeeAnna. I was 14 when lymphedema took up permanent residence in my left foot and ankle but I didn’t know what was wrong with me until my mid-40’s. When I was finally properly diagnosed the lymphedema had moved into the calf area leaving a permanent “bruise” on my shin where the lymph fluid had pooled. I was told that I had Primary Lymphedema, meaning I was born with the disorder even though it did not show up until puberty. This is the case for many people who have late onset of lymphedema. Lymphedema occurs when your lymph vessels are unable to adequately drain lymph fluid, usually from an arm or leg and it can either be primary (congenital) or secondary (caused by injury or surgery such as mastectomy).
Lymphedema symptoms include severe swelling and consequent pain to the effected area. In my case, the lymphedema is now on my entire left side, including my face and torso. I also have some involvement in my right elbow and it seems the older I get, more areas of my body swell up. The other symptom? Lymphedema causes fatigue, sometimes extreme.
On a daily basis I manage my lymphedema with a proper food and nutrition. I do not eat processed foods or foods high in sodium. I do not eat sugar, gluten, or nightshades (tomatoes, potatoes, peppers) and I eat as many anti-inflammatory foods as possible such as cabbage, cucumbers and watermelon. Oh, and water is my friend!
I also stay out of the extreme temperatures and I wear comfortable shoes and clothes that do not bind me. I am careful not to get any bug bites or cuts because the affected area can become infected very easily. I also receive manual lymphatic drainage massage (MLD) every 2 weeks and this helps the lymph fluid flow better. I can also do self-MLD at home.
Some people wear wraps and compression garments but I have not had success with these interventions so I do not. I can’t ever fly again because I am grossly affected by the air cabin pressure on the plane. I have to say it was a hard day for me when I realized my dreams of future travel were put to bed.
Despite all of this, AND acquiring Sarcoidosis (an autoimmune disorder effecting my lymphatic system) 20 years ago, I live a full life. I recognize my limitations and I am no longer shy about asking for help. I can party with the best of them, it’s just that my party starts midday and wraps up early afternoon! No late nights for me. I am in bed by 10 and up at 6. My wellness lifestyle is based on consistency and routine, encompassing mind, body and spirt. This offers me the opportunity to be as healthy as I can be.
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DeeAnna Nagel
Is there a connection between the sarcoidosis and lymphedema? I was diagnosed with both within the past few years and nothing seems to help. I also have diabetes and had DKA. Any pointers that you can give would be amazing. Everyone here just says,
“Interesting! Let me know what you find out.”
Hi! I wish I knew the answer to that. I have lupus and am not well educated on sarcoidosis or lymphedema. What I do know is most autoimmune diseases come in multiples, so most people have more than one.
There may be a correlation for the 2. Like with lupus, most of us also have something called antiphospholipid antibody syndrome.
Have you tried removing inflammatory foods from your diet?
You can message me privately through Instagram and we can talk more. My Instagram is @ketolupie