Lymphedema Pain

Hello @marchelle, I'm sorry to hear your lymphedema is a result of chemo treatments. I haven't had chemo but do have lymphedema in my legs. I don't have any pain but I definitely can relate to the heaviness and legs sometimes feeling like bricks. I wear knee high compression socks to control the swelling during the day which help with the swelling but add another dimension of feeling the squeeze all day long until I take them off at night.

While you wait for other members to respond, I wonder if you might find some suggestions in this related discussion on chemo side effects and lymphedema.
--- Metastatic Breast Cancer (MBC): Help for Lymphedema and Cellulitis: https://connect.mayoclinic.org/discussion/mbc-help-for-lymphodema-and-cellulits/

Have your doctor or care team had any suggestions to help with the pain?

pray, Pray, and PRAY. I was told that the pressure caused by the lymphedema results in the soft muscle tissue surrounding the vessels to break off into fragments that irritates the Hell out of nearby nerves,; that there was no possible pharmaceutical treatment. Therefore, with hope and a pray: Tei Chi meditation and movement; Yoga but with toleration; abdominal breathing to move lymph - the abdominal region controls the lymph flow - obese, Lose the Weight; obesity counter productive to any and all means of pain control. See a vein doctor for Compression socks - will need exact correct measurements and pressure amount of mgH - wear them as instructed - requires adjustment(s). Lastly, a God Send, ZERO Gravity Chair with full body air bags - not cheap - go Amazon to break cost up into reasonable payments; make sure that it can be shipped to your address! For me, no luck. I live in Alaska, but I am determined. A zero gravity chair makes sense in that the lymph flow is redistributed to level off, plus the chair comes with built in Bluetooth which will help with relaxation / refousing away from the pain (Taibetan singing bowels, Hand pan drum, ect.). Any suggestion(s) for me. Mine is chronic, relentless, and at times unbearable pain. Hana, Anchorage, AK

@marchelle I have had lymphodema pain and issues myself, and understand how uncomfortable it can be. Has it been ruled out that a medication is not causing this issue to get worse? I had to change one because it was causing issues, and that really helped!

As @johnbishop mentioned, compression socks can help many times. Getting out to do moderate walking and exercise when you are able will also be beneficial. And for me, the best thing was getting a local massage therapist to come to my house and do lymphatic massage. She then taught me how I could do this myself and it really made a difference! Also, watch your diet for sodium, and be sure you are hydrating enough.

Please let us know if any of the suggestions you have read here sound like something you could do, okay? I'd like to read your success story!
Ginger

Knock on wood, this is one symptom l have not experienced. But l have fibromyalgia which causes pain all over. The miracle of aqua therapy gives me great release all over. I take my noodle and slowly move my legs till they relax and feel lighter. Also, my arms l float with the noodle. It is all relaxation, it might help release some of the fluid built up. I actually cry when my body let's go of the stiffness, the heaviness. Make sure to go to a pool that has a chair to lower and getting you out.!!!! Also, fyi. They have great leg swim wear, like tights which help out pressure on the fluid in your legs. Also, tops l have seen on Lands end. It is like compression stockings, but helps with your confidence to go out to a pool. Let the pool supervisor why you are there, also Insurance might pay, it could fall under Physical therapy. Good luck. Blessings

Hi @johnbishop
Thank you for your response and information. The doctor has me on tramadol which is a temporary fix. The physical therapist saw me twice and gave me exercises to do at home, but it's to painful to do at times.

Thank you. I find that prayer helps, and rubbing my legs, and elevating them helps, but the pain is chronic also. I am still researching and will share my findings with you as I get them. I will for sure look into the chair...I will also say a prayer for all who are suffering with this.

Thank you. I am working on my sodium intake and staying hydrated. I will look into the lymphatic massage, it sounds great for me. I will keep you updated.

I have lymphedema and I have never had cancer or lymph nodes removed. I have been through physical therapy and have a pump for my legs. The Rheumatologist I did have did nothing for me but send me to the vein guy where I found out I have lymphedema. I just went today and got a vein mapping done and waiting for the results. I am in search of a new rheumatologist so I can get the pain in check if possible. I've also noticed that I may have lymphedema in my arms now and that is very painful and I hate it. My question is how can you get Lymphedema without having cancer or lymph nodes removed? Just need some answers on how I have this. Thank you and have a nice day.

So sorry to hear that you are dealing with lymphedema pain after chemo. I had lymphedema after having a 3-level fusion in my lower lumbar. My physical therapist did the lymphatic massage and it helped tremendously. She also taught me how to perform the massage on myself so I could continually move the fluid. Very helpful. God bless you as you move along with your journey. Prayers are being said for you.

@ladyq Welcome to Mayo Clinic Connect! It's not easy to be dealing with lymphedema, as you are finding out.

Here is what Mayo Clinic has to say about lymphedema: https://www.mayoclinic.org/diseases-conditions/lymphedema/symptoms-causes/syc-20374682 As you can see, there are different causes for it.

I hope you are able to get a different doctor and get the results you are looking for. Will you come back and let us know, please?
Ginger