Lymphedema Improvements

I have dealt with swollen legs and a radiation ulcer for the past two years. Two months ago, I was diagnosed with stage 4 Lymphedema. I was given a choice to go to the clinic every day for massage therapy on my legs, get my legs wrapped, or have a home health nurse and therapist come to me. I chose the latter based on a great experience with home health two years ago. 

I was frustrated that the two dozen doctors, including a wound specialist, a dermatologist, and a vascular surgeon I saw previously, didn’t know anything about Lymphedema. But a physician’s assistant did recognize it and referred me to an occupational therapist specializing in Lymphedema. And she referred me to a home health therapist who also specializes in Lymphedema and Lipoedema. The medical nurse takes care of the wound.

This is what has worked to help treat and heal these ailments:

The number one item that I have that I wouldn’t trade for anything is a zero-gravity automatic lift recliner. This has made all the difference for me, as I can sit here with my feet up while I watch TV and work on my laptop. I even sleep in it will my feet elevated up higher than my heart. The chair has helped the most… when I wake up, the swelling is gone in my feet and legs. This chair is a little expensive ($2,000) but so worth it.

Before I even get up, we put on my CircAid velcro compression wraps and CircAid PAC band foot wraps. The compression helps to keep the swelling down.

My Lymphedema therapist comes twice a week and does LDM (Lymphatic Drainage Massage) on both legs and then massages with two kinds of cream and then put my compression wraps back on.

I do self-massage for LDM twice a day and special leg exercises.

I do pneumatic pumping 2-4 times a week with air compression boots.

I eat a low salt diet.

I take 900 mg of Gabapentin for neuropathy.

I’m at stage four and didn’t think I’d ever find relief. It’s so exciting to see my little “normal” sized wrinkled feet each morning. The stretched skin became discolored, and now that is drying up and flaking off, and it’s exciting to see pink skin under it.

I am finally at a point of having very little pain after two years of constant pain. 

I am disabled, so I have to use a wheelchair when I’m away from the house, but I can use a walker to get around the house.

My Lymphedema was caused by a combination of cancer treatment (radiation and chemo), RA, and injury to my leg from a car accident.

Today was a good news day…

The radiation ulcer wound is finally healing after a 2-year battle. It’s closing up, barely bleeding or leaking, and has new skin growing over it.

I am finally without pain most of the time. Before this, I was in agony from six different kinds of pain, and those are either controlled or gone. The RA medication is helping better and better all the time.

The Lymphedema is now more under control. Between my recliner, compression wraps, home health care, and massages (self and from my therapist), my legs spend more time unswollen rather than swollen. There is no cure for Lymphedema, so I will have to do this from now on.

The new foot wraps feel wonderful and help more than anything else other than elevation.

An occupational therapist came out twice this week to teach new ways to get in and out of the car, so Tim and I both feel more confident about that. This was my number one goal. I had intense pain in my upper leg that was so bad; it was hard to get in and out of bed, in and out of the shower, and in and out of the car. The PA who recognized the Lymphedema also diagnosed that the muscles in my upper leg had become inflamed, and she prescribed Prednisone and helped it almost immediately. But the muscles are now very weak, which made it hard to lift my leg up to get in and out of things.

I can walk further and more effortless; still, with my walker, it’s an improvement.

My blood tests for the blood thinner are finally consistently at the acceptable level.

Progress!!!

There are cases of stage 4 Lymphedema that are so much worse than mine, and I know they suffer badly from it. I hope they will find some relief someday too.

Lymphedema symptoms, which typically occur in the arm and/or leg, include: 

  • Swelling of part or all of your arm or leg, including fingers and toes
  • A feeling of heaviness or tightness
  • Discomfort or aching
  • Restricted range of motion
  • Recurring infections (such as lymphangitis or cellulitis)
  • Hardening and thickening of the skin (fibrosis)

Swelling can vary from mild with hardly noticeable changes in the size of your arm or leg to severe changes that make use of the limb difficult.

There is a bill in congress, and if it passes, it will help pay for treatment supplies like compression garments. We need to contact our local senators and representatives and encourage them to vote yes for the Lymphedema Treatment Act bill. 

There is no cure for Lymphedema, but treatment options can make a considerable difference for Lymphedema patients. But these options are often costly.

Lymphedema occurs mainly in the limbs, such as arms, for breast cancer patients. But it can happen in other parts of the body too.

https://www.mayoclinic.org/diseases-conditions/lymphedema/symptoms-causes/syc-20374682

https://www.cdc.gov/cancer/survivors/patients/lymphedema.htm

https://www.lymphedemaproducts.com/

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