Lymphedema University | support, health, nutrition, self advocacy, management & confidence
Lymphedema University is a support group for those who are dealing with lymphedema in any area of the body. It's a place where we can share information with one another, ask question and to get more insight on this long-term chronic condition. I want us to be able to share health and nutritional tips along with self advocacy and self management
June 1992
Hello, my name is Paméla Campbell. I have been living with lymphedema for 29+ years. . In the beginning I notice my feet swelling so much that family members said they looked like ham hocks. I just assumed it was water retention from being pregnant. After having my 1st child the swelling went away. A few years later I had my 2nd child and the swelling never went away in my left foot. Not only did it not go away, I started having pain in it. For the next 6 to 8 years I had gone to several doctors to see exactly what was going on with my lower extremities. At the time no one could tell me exactly what was going on. I even had a doctor to put me on water pills. The only thing it did was to keep me frequently urinating. This become so frustrating. Somewhere only this timeline my right lower extremities began to swell up as well, (not as much as the left side but it was noticeable).
Finally I came across a doctor who told me that I had lymphedema. "Lympha...what?" "What is lymphedema?" I asked. The doctor said the best way he could explain it was like this. We have these valves throughout our bodies and there are caps that keeps the fluids from flowing backwards. He said that my valves had collapse. "What does that mean for me?" "Is there a cure?". He told me that there were no cure. He said if I lost weight I could loose some of the swelling but it will never go away. He gave me nothing really to work with. I left his office with more questions than answers. It was as if it was a lifetime sentence.
I went on for several more years trying to ignore it,
whenever it was time to shop for shoes it was obvious I needed two different sizes. This was so discouraging. Whenever I would find a pair of shoes I could fit, I would buy them in every color they had. Payless became my go-to for shoes because they carried wide-size. It was devastating to see them close their doors.
About 10 years ago I stubbled across an outpatient physical therapy and rehabilitation centers that happen to work with Lymphedema. I was being treated for knee pain at the time. I explain to them that I had lymphedema and asked if they could help me. I was really excited that I was finally getting real help for my diagnosis. They began with wrapping my legs in layers of bandages and I had to wear this for about a week or two. At the end of my 2 weeks my legs and feet looked normal. I was so pleased. They prescribed me compressions socks and told me I had to wear them from the time I get up in the morning until I go to bed. I was like WHATTTT, ALL DAY, REALLY??? My insurance would pay for them so I had to pay out of pocket. It was ok because whatever I needed I was willing to get.
I wore the compression socks for about a month until they became unbearable to wear. Physically, they were painful to wear. I had a hard time putting them on and a hard time taking them off. My husband had to help me on a daily basis. Mentally I also struggled with the idea of wearing compression socks in my 30's. Keep in mind this was in the middle of summer. With all this going on, I decided that I rather just deal with the swelling than to deal with the pain of wearing them and the mental shame I felt from having to have to wear them.
It was no real education on my lymphedema. They got the swelling down, slapped some compression socks on me and sent me on my way. I was back at point A. Now what do I do?????
Let's fast forward to April 8th, 2021, I had a partial knee replacement on my right knee. On August 12, 2021, I had a partial knee replacement on my left knee. I had been in physical therapy since 2018 because of the different ailments I had going on with my knees. In the fall of 2021 I began to have pain in the bottom of my feet. I thought it was an after affect from my knee surgery. I was referred to a foot doctor. The podiatrist told me, after the x-rays, that I had planter fasciitis. He also said that if we could get the lymphedema down that it would help with the pain. Here we go AGAIN....
I was given a list of PT to call but none of them worked with Lymphedema. I though about going back to the outpatient physical therapy and rehabilitation centers I went to 10 years ago but I didn't want the same results. I called my medical insurance company to see if they could find anyone. They actually found a lymphedema clinic. I researched this clinic and I was extremely excited about what they had to offer.
Manual lymphatic drainage. A physical therapist will provide a type of massage that uses gentle pressure to help move lymph out of the areas where it's collecting and move the excess fluid into the correct drainage areas. They will also teach you how to do it so you can continue at home.
Intermittent pneumatic compression. This uses a device to apply and relieve pressure to the arms or legs. Sleeves are put over the arms or legs. A pump fills the sleeves with air. Then the air is let out. This happens many times in a row.
Compression bandages. These are stretchy, padded fabric bandages worn on the parts of the body with lymphedema. This may include bandages, tape, or other types of compression wraps. They help support your tissues so lymph can flow more freely. And they help keep lymph fluid from building up and to direct fluid away from the effected area(s).
Therapeutic exercises. They educate you on the best type of exercise to do you assist in moving the lymphatic fluids. These may include aerobic exercise, such as brisk walking. They may also include range of motion exercises or weight-lifting exercises that build muscle. Exercises are tailored to each person and depend on the kind of lymphedema.
Skin and nail care. Proper care of your skin and nails can help prevent infection.
Compression garments. These are worn as often as needed and often for life. These include sleeves, gloves, stockings, undershirt, or other types of special clothes. They squeeze or compress parts of the body to help prevent lymph buildup. You may wear these during the day or at night when you’re asleep. They're carefully fitted for each person.
All of this they educate you on. I stayed in this program for 8 weeks....