Anyone diagnosed with Lipedema as well as Lymphedema?

2ndGenBCA
2ndGenBCA Member Posts: 40
edited July 2019 in Lymphedema

Hello, 

I'm wondering if anyone has been diagnosed with "Lipedema" as well as "lymphedema?"  Or perhaps "lipolymphedema?"

https://rarediseases.info.nih.gov/diseases/10542/lipedema

https://www.lipedema.org/about-lipedema

https://www.degruyter.com/view/j/hmbci.ahead-of-print/hmbci-2017-0076/hmbci-2017-0076.xml

Just wondering if your doctors are versed in the condition, if you have learned of any connection with breast cancer or autoimmune conditions such as Hashimotos or thyroid disorders or high calcium levels. 

Thanks.

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited June 2019

    This has not been my experience so I did a quick search on the StepUp-SpeakUp.org site which has comprehensive info on breast cancer related LE. Only a couple mentions there but perhaps there are some women with both conditions. Most of us have issues due to the surgeries we’ve had...

    I see you found the thread on parathyroid disease which is what I usually think of when hypercalcemia occurs (unless there is known bone metastasis). I would not expect an oncologist to treat or follow these concerns when there are endocrinology experts available!

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  • BeckySharp
    BeckySharp Member Posts: 935
    edited June 2019

    Hi,

    I have secondary LE in arm, breast, and trunk due to breast cancer treatment and secondary LE in right foot and leg secondary to lipedema, or lipolymphedema.

    I am fortunate in that my CLT knew about lipedema so when LE started in my foot she knew it was LE. I am on self care for my upper body LE and it is fairly well controlled. Since my lipolymphedema is more recent I am getting CDT from her on a weekly basis. It has been harder to control and self MLD is more difficult on the foot and leg as I can only do it sitting up.

    My PCP has been great about learning about LE and lipedema with all of the materials I have given him. I gave him The Clinicians Guide to Lipedema from The Fat Disorders Research Society (FDRS). He has it prominently displayed in his office. They have a FB site. I think you can get a copy free on their site until June 30.

    I have a support group and some are learning they also have lipedema. Plus there are FB sites for lipo. Many suspect they have it but are not formally diagnosed.

    As for the other conditions you mentioned, since LE is an inflammatory condition I am sure some of the others are also and there probably is some correlation.




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  • 2ndGenBCA
    2ndGenBCA Member Posts: 40
    edited July 2019

    Thanks Becky. I was able to download the Clinicians Guide.

    I am learning as much as I can and find the connection between Lymphedema and Lipedema quite interesting.

    This video is very informative as well: Lipedema - The Disease They Call FAT documentary

    https://www.facebook.com/lipedemasimplified/videos/1158031244376405/

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