Feeling down

[dnj1234]

After so many years of searching for an answer I was told I have 2nd level lymphedema. I went through the lymph therapy and had several layers of bandages and foam. It did reduce my swelling and although I wear stockings my foot is still quite swollen again. Also I have problem with numb toes

[cinthiaalbu]

I understand how you feel. I was diagnosed with lymphedema approx 7 years ago. I went through some bandaging and MLD but was still in disbelief because it was mild. For years afterwards I went to several vascular doctors getting different opinions while my leg increased in size. After ruling out May-Thurner Syndrome, I have come to accept what I have had all along is indeed lymphedema (primary). Unfortunately I am somewhere between stage 2 and 3. I bandage 90% of the time, and when I'm not bandaged I wear compression garments. I try not to think about it for too long, because aside from that, my life has been good. Although my right leg is sometimes a third larger than my left, I walk and exercise to keep my flexibility. None of us are happy about what we have, but we cannot let it define who we are. I have bad nights, but I try my best to snap out of it and keep my head up!

[PenelopeW]

I have same problem with my right foot even though I always wear compression socks during the day. Many years ago I dropped something heavy on the toe-nail of that foot, the nail went black and came off. It eventually grew again but splits into two. I wondered if that had something to do with it, perhaps infection in the nail bed.

[cinthiaalbu]

My feet and toes are ALWAYS swollen. I was advised to wrap my feet. Here is a link to a great video on wrapping your toes:

youtu.be/SkkZl__RHoM(Not working as expected?)

do not wrap tightly. i can tell you from my own experience, that wrapping has helped keep my skin from getting fibrosis.

[daniv79 in reply to cinthiaalbu]

Thanks for sharing the video. I've never managed to wrap successfully myself. Will give the video a try.

[Lynne-byn in reply to daniv79]

Thanks for sharing video x

[Snaomi]

Are you wearing open toe or closed toe garments? There is a toe cap and my therapist said that many people have success with ot. I started swelling in my ankle in 2004. It increased up my leg. Took about 1e years to get a real diagnosis. By then I was stage 3 and the fluid had progressed to solid protein. I had the SAPL surgery about 1w weeks ago. Am 20 pounds lighter. My energy has increased. I wear my garment 23. 5 hours a day bit my foot and ankle are still swollen a bit. It will take months for those to decrease since they are at bottom. My therapist recommend I wear a toe cap. I also use foam inside my garment in those areas to help break up in scar tissue or protein. Hopefully find a solution. Best of luck to you.

Snaomi

[ulverin in reply to Snaomi]

What is this foam you talk about? How is it put under garment? I wonder if I could find it useful because my leg size changes and sometimes my garment feels too big in some parts.

[Snaomi in reply to ulverin]

It is the same type of foam that is used under wraps. And your therapist about it. It is supposed to help with moving out the stubborn fluid/protein that doesn't want to move. It does help.

[Lynne-byn in reply to Snaomi]

Hi snaomi hun I'm glad your recovery is going well 20lbs lighter holy shit hun that's a lot nearly a stone & a half right? Ru feeling skinny mini? 😀 xxx

[Snaomi in reply to Lynne-byn]

Lynne-byn yes I am feeling lighter and have more energy.

[Lynne-byn in reply to Snaomi]

That's great to hear huni x

[dnj1234 in reply to Snaomi]

Thank you Snaomi could you tell me where to get the toe cap from?

[Snaomi in reply to dnj1234]

My PT was ordering it for me. It is my understanding anywhere you but garments such as Brightlife online. If that doesn't work let me know and I will ask my PT.

[Chocolate-e-clare]

Hi dnj1234 - I understand your frustration with not being able to keep the swelling down. Make sure you use your therapist and problem-solve along the way. I'm a therapist. I've seen a lady who has had great results with her night garment (she's using Jovi - there's also Tribute). She reduces quite a bit overnight - her garment does not hold the swelling by the end of the day. Throughout the day, try to elevate your feet as much as possible. With the numb toes - the level of compression needs to be balanced with your level of circulation - if your garment is stopping blood flow to your foot, the compression may be too high. Numb toes can also be caused by nerve damage (in foot, leg or spine).

[dnj1234 in reply to Chocolate-e-clare]

Thank you ever so much Chocolate-e-clare I like the advice you have given. Could you elaborate more on Jovi and tribute please

[Chocolate-e-clare in reply to dnj1234]

m.youtube.com/watch?v=dRUQh...(Not working as expected?)

[Chocolate-e-clare in reply to dnj1234]

Just for a visual (something has happened to her voice!):

m.youtube.com/watch?v=06RdX...(Not working as expected?)

[dnj1234 in reply to Chocolate-e-clare]

Thank you chocolate-e-clare. Not been on here for awhile. I think you are right about the circulation. I also was wondering about a problem I have noticed. When I am in the UK my swelling reduced but when I am in Iran it gets really bad. Can it be climate or difference in water?!!!

[Chocolate-e-clare in reply to dnj1234]

Climate can have a big effect on lymphedema. Hot and humid weather can make people swell more (along with making it harder to wear garments). Plus, long haul air travel can increase swelling - many people wrap or wear extra compression when flying. Check in with your doctor if you swell more for no apparent reason.

[Lynne-byn]

Hi dnj1234 I'm glad you've had some success & hope things continue in the right direction. I'm sorry but unfortunately I am not in a position to offer any advice as I'm still waiting on appointment for scan & to get measured for compressions. I have to say that you'll find lots of people here that relate to you, and offer exc advice, Lynne

[dnj1234 in reply to Lynne-byn]

Thank you and I hope everything goes well for you. Jeanette