r/Lymphedema

I took brand name zepbound .5 weekly injections for about 6 weeks, then stopped due to side effects. The purpose was to lessen my lymphedema symptoms, swelling tightnes, etc. My symptoms did minimize while on zepbound. It’s been about 6 weeks since my last injection and my symptoms seem worse now. I’ve seen a few posts about “rebounding” after stopping. Has anyone else experienced this?

Hello, all. I have been diagnosed with lipedema and lymphedema. Elsewhere, I’ve read that Tirzepatide is beneficial for us lucky ladies. I’ve been on compounded Tirz off and on for about 6 mos — the last three months continuously.

Have any of you found that your (private/employer) insurance will cover it as treatment for lipedema? It’s not covered for me as a weight loss treatment, and I am not diabetic.

If you are paying out of pocket, do you recommend a plan? I’ve done Ro, and just recently went through the initial steps with a variety of providers who advertise lower prices, but once it comes time to pay, the prices are inflated.

If this is not the place to ask, I apologize. It’s a different situation for those of us seeking relief for our condition vs. general weight loss.

https://preview.redd.it/kic7qw6sh52h1.jpg?width=3024&format=pjpg&auto=webp&s=e8a68586cfc8ae2bdd5b49dcb7cea85b27499211

https://preview.redd.it/5bjik37sh52h1.jpg?width=3024&format=pjpg&auto=webp&s=1729aad10ebea49991fe8b4f9854c8dad311be51

This photos are taken after I hastily took off my bandages. I believe my autoimmune issues at play here. Should I ask for switching to garments?

Hello- Did any if you participate in the Acebilustat research study at Stanford with Dr Rockson?

If you were a participant, can you please share your drug experience such as negative side effects and any positive changes to your lymphedema limb like volume reduction (what percentage), limb softening, skin texture changes, reduced infection. Can you please share how long ago you ended the trial and if you still need to wear compression. If your lymphedema symptoms returned, please share the details. Thank you!

I claw at my legs. It's terrible. The itch feels like it's under my skin and I just itch till I reach it.... It generally opens up my skin and causes me to bleed. I must apply lotion at least 2 times a day. I use CeraVe healing ointment and it works great but leaves me greasy. Not to mention I have weeping on my legs. Every time I scratch open my legs it generally causes moisture to seep through and becomes a healing issue.

Are you itchy? What do you do to stop?

I have secondary lymphedema in my arm hand and breast from lymph node removal during my lumpectomy for cancer. Do those of you who use a vibration plate keep your compression wear on while using it or remove it ?

Looking to buy compression tights, sleeves & something for my tummy. I am in Canada & a size 5-6x I am having trouble finding anything big enough to fit around my stomach & hips.

Hi all, I have fibroids and I think they are making my lymphedema worse. I'm pretty sure I'm going to need a hysterectomy for one large fibroid in particular. But I am concerned because I have primary lymphedema which mainly affects my left foot/ankle.

I do think the fibroids in general are making my swelling worse, but it's more generalised swelling rather than the pitting edema I have in my foot, if that makes sense.

I wondered if anyone with primary or secondary lymphedema has had a hysterectomy and whether they found that made their lymphedema worsen or their swelling improve - maybe that's a long shot!

Or if you've had any pelvic or abdominal surgery, did you find it caused any problems with lymph vessels or healing time? Any advice you can give would be great. Thanks.

I am an ovarian cancer survivor (stage 2). I manage mild lymphedema in both legs and abdomen. I had lymph nodes and my Omentum removed. The Omentum is part of the immune system and the lymphatic system and often removed in ovarian cancer- studies show higher survival rates when it is removed.

I think many ovarian cancer survivors may be living with undiagnosed lymphedema. Ovarian cancer patients are not routinely screened for lymphedema.

If there are any ovarian cancer survivors who see this post and have been diagnosed with lymphedema I would love to know about your journey to diagnosis. Please share as you are comfortable.

Trigger

I have lymphedema in my arm and hands post BC

I have worked so hard on it but there is a visible difference

One thing I don’t think people talk about enough with hand lymphedema is how mentally exhausting social situations can become.

I get triggered during meals because people naturally look at your hands when you eat. Even if they don’t mean harm, the staring or noticing makes me intensely self-conscious. There were times I would literally stop eating or avoid eating around people just so I wouldn’t have to feel watched.

It sounds small to people who haven’t experienced it, but when a visible difference constantly pulls attention to a part of your body you struggle with emotionally, it can really affect you

I’m trying to work through it, but some days it still gets to me more than I’d like to admit.

I could not eat or sleep yesterday from my mental pain

Hi I recently started following “Matt” at Lily Clinic in Roanoke VA. I got this from FB. Do not know if he is on other social media. But he’s very good, informative, sharing, and is trying to bring the therapist community, the patient community, and the medical community together, so that the RIGHT lymphedema treatments can become more known and accessible.

Sharing in case it may be useful to any on the sub.

https://www.facebook.com/share/v/18m86rLwp9/?mibextid=wwXIfr

Hi! I was diagnosed with “severe late stage lymphedema” ln my right hand and wrist after over a year of dealing with chronic swelling that got progressively worse. It’s now been two years since the swelling randomly started, still not sure what the cause was. I don’t have any history of lymphedema in the family and there was no injury that caused the swelling to start. I now go to physical therapy often and have custom compression garments + pump. The doc I was seeing tried a lymph angiogram and determined there were no In tact lymphatic veins to do the vein bypass surgery. My only hope for things to get better is a lymph node transfer surgery which I haven’t been able to find much info or success stories and know it can put other extremities at risk.

I have a consultation with the surgeon for LNT surgery in July. She was really hard to get an appointment with because she only works with recovering cancer patients. Because there was no injuries or family history, it’s been incredibly hard to get answers or treatment. I have a physically laborious job and it makes the swelling much worse and causes pain if I don’t wear my compression glove all day. My garments are so uncomfortable and still don’t help much with the swelling. I can’t imagine having to do this for the rest of my life. I’m only in my twenties. I really hope this surgery can be something that I’m a candidate for and improves the quality of my life, does anyone have any more information or experiences with the LNT surgery?

Also I’m having a hard time with my self esteem because of my hand. I have been made fun of quite a bit for it, whether it’s the fact that it’s swollen and looks deformed or because my compression garment looks stupid. A lot of people point it out and ask me questions about it. I have been dating someone new and have been trying my best to hide the swelling but it’s pretty exhausting. I feel like it could be a big deal breaker for people, but idk how to feel more secure with the condition. My hands are pretty small so the swelling looks so weird. I’d really appreciate any help or advice.

I have heard people say walking, pilates, yoga, trampolines, using vibration plates and swimming. Have any of these worked for you?

Has anyone still been able to lift weights, use more of the gym and do spin or kickboxing without making lymphedema worse?