Topic: Undiagnosed-- Seeking tips on how to manage Lymphedema symptoms

Forum: Lymphedema — Talk with other about how to lower your risk of lymphedema and how to manage it if you've been diagnosed.

Posted on: Sep 23, 2022 08:24PM

Posted on: Sep 23, 2022 08:24PM

baltimorebaby wrote:

Hello lovelies! What're you gals/guys taking or doing for pain relief outside of compression/elevation for lymphedema? Does Prednisone help?? Other meds?? Tips? Tricks? Is icing ok? Is it safe to wear pharmacy compression when I await testing?? I have to wait 2 1/2 weeks to be seen by vascular doctor for evaluation/tests and then treatment. I've not yet been diagnosed and am undergoing various breast cancer tests. My left breast started swelling in April '22. I am elevating and currently only taking Tylenol and an antihistamine for skin irritation. Most of my entire left side is affected. I am generally a very upbeat, positive person, but it's got me really down and feeling desperate. It's been a living hell. I cannot sit upright for more than 20 minutes at a time and don't know how I can manage for weeks in this way. Walking has helped with pain, but it seems to increase swelling. Hugs. Thank you for any kind tips or tricks to help in meantime!

Hugs!!

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Sep 24, 2022 02:16AM alicebastable wrote:

Lymphedema happens as a result of cancer surgery or treatment, in the area affected - arms and sometimes torso for breast cancer patients. Since you haven't had surgery or treatment, and it's also occurring in your leg, it may be an infection somewhere in your system, or a non-lymph problem. Please talk to your primary care doctor.

From the Mayo Clinic: "Lymphedema happens when your lymph vessels cannot adequately drain lymph fluid. That usually happens because of damage to or removal of lymph nodes from an infection, trauma, cancer treatment or surgery. When lymph fluid doesn't drain normally, the excess fluid builds up and causes swelling, most often in an arm or leg. If it's not promptly and properly treated, the accumulation of lymph fluid eventually can lead to solid deposits of fat and fiber in the areas affected by lymphedema."

Good luck.


Ignore treatment info (below) which is a BCO glitch. Do not enter personal information on this site since they grossly mishandled a data breach.
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Sep 24, 2022 08:13AM - edited Sep 24, 2022 08:26AM by baltimorebaby

Thanks so much, alicebastable. I've been checked out by both my Primary/ER though they could be missing something. Noone suggested infection as I've no fever. Can you have syatemic infection without fever? I just recovered from bad COVID about 6 wks ago... don't know if that could've started up or exacerbated something preexisting? I will certainly be back in touch with Primary on this. Thank you. Vascular consult did suggest CT scan and lymphscintography suspected for lymphedema with no cause clear. I have back issues that limit my activity and caused recent weight gain which I've read among those things is also a risk factor for lymphedema. ER seemed to rule out other issues like heart, liver and kidneys with blood tests, chest x-rays and ultrasound of left leg and arm. It's a puzzle. I go for diagnostic breast mammogram with ultrasound next week. Earlier mammogram from months back- after much deliberation as it was difficult to read- ended up clear. I noticed swelling first in breast back then. In meantime, between tests and appts., I really need tips on getting swelling and symptoms under some kind of reasonable control in order to just cope. Doctors aren't adequately treating symptoms yet. I cannot sleep or sit up to work. It's all very overwhelming. I appreciate all of your feedback and any other insights and tips! Thank you kindly.

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Sep 25, 2022 01:08PM parakeetsrule wrote:

Get seen by a physical therapist who has been specially trained to treat lymphedema. It's possible that you have primary lymphedema, which is lymphedema that develops for no apparent reason and can be gene-related: pubmed.ncbi.nlm.nih.gov/33502936/
Stage 2 at 37, Stage 4 at 41. Cancer is dumb. Cookies are good. Dx 3/21/2017, IDC, Left, Grade 2, ER+/PR-, HER2- Radiation Therapy 11/6/2017 Whole breast: Lymph nodes, Chest wall Hormonal Therapy 12/8/2021 Faslodex (fulvestrant) Targeted Therapy 12/13/2021 Piqray (alpelisib) Dx IDC, Other, Stage IV, ER+, HER2- Chemotherapy AC + T (Taxol) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal (Left); Mastectomy (Left)
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Sep 25, 2022 01:26PM baltimorebaby wrote:

Thank you, parakeets rule. I could have this primary form. My brother has edema only in his feet and ankles - is it related to lymphedema? He acquired it after weight gain. I tried to self-refer to Burlington Lahey Lymphedema clinic here in Boston, but was told I need doctor's order/referral, so they had diagnosis. Kind of at my wits,' end and suffering tremendously until I can be seen by this vascular doctor. I'm not sure how to help symptoms on my own. :(

Hugs,

L.

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