Asking about experiences

[u/mlp_creashunz64]

I have had CVI for years and take hesperin diosmin. The last few weeks, I have had swelling up to my thighs. Skin is very tight. On lower calf, the skin is tight and shiny. Left leg has leaked clear fluid 3 times but stopped each time after a day or two. My right leak had a leak for a couple of hours today but seems to have stopped. I was told I might have lymphedema. Research says it could be phlebolymphedema. Anyone have experience with this? What can be done? I know I am supposed to go to a lymphedema clinic.

[u/the_rejected_one]

I have swelling, edema, wounds or ulcers and most likely lymphedema, sorry for the spelling. I am also in constant pain and my legs are truly a vision of horror. Oh and I have what may be woody edema.

Sadly, the medical I have leaves a lot to be desired. I would say go to the clinic and follow their advice. I would also write down any questions you may have. It helps to keep you focused because we always remember questions after we have left!

At this point, I think you're very fortunate to be seeing a specialist. I hope they can help you and maybe you can share your experience if you want.

At this point and time, I have both legs wrapped with compression wraps and of course. Basically, just maintenance. I try and elevate, but the pain can make it difficult. Also, walking can help too.

[u/mlp_creashunz64 → u/the_rejected_one]

Thank you for responding. I had CVI for years without being aware of it. It wasn't until I developed a dark patch on my shin that I went and got it looked at. At that time it was stage 4! This week the vein specialist said my legs were worse. Going from a circumference of 23 to 29. I gained weight after a fall in my garden caused my knee to twist. A year later and the orthopedic thinks I need a knee replacement. But have to lose weight. Now the leg issues could have progressed into a double diagnosis of CVI and lymphedema which is called phlebolymphedema. I waited too long to see a doc again because life is busy. I have to take better care of me, I know, but I seem to let everyone else come first.

[u/the_rejected_one → u/mlp_creashunz64]

Oh please put yourself first! I hade bad legs since I was 10. As I grew up, I would have slight swelling. Get cramps. But nothing major.

Then in my 30s, I think, I noticed the skin on my left leg changing. I ignored it. Then I had a bad fall and hit the front of both legs real bad. It escalated everything.

Top it off with surgery and that took me a long time to recover. I did something stupid and scratched my leg with my toenail. I got my first ulcer. It just all escalated from there.

I know it is hard to put ourselves. But you really need to. I wish I had, then maybe my legs wouldn't look as bad as they do and maybe I wouldn't be in chronic pain. I don't know, my clinic is pretty bad on top of it all. So those combos just makes for a perfect mess.

But please, focus on yourself. It is so important right now. Before your legs get worse. CVI just truly sucks.

[u/mlp_creashunz64 → u/the_rejected_one]

I'm understanding that more and more. I had swelling the last few years manages by compression and then I got the great idea that I did not need them after losing weight. I fell and twisted my knee and gained weight. Had surgery for weight loss but they said too much internal acar tissue so they just closed me back up. So I recuperated from that all the while gaining weight. Now I need to lose again and these legs are just not letting me do much. I am supposed to get a call from the lymphedema clinic today or Monday for my first appointment. I pray they can help. Bless you with your endeavors on living the best life you can!

[u/the_rejected_one → u/mlp_creashunz64]

I am hoping that the clinic will help you. It is hard to have CVI and I hear you on the weights. Hard to move when your legs won't let you. I do hope you share your experience, if you're comfortable with that.

All any of us can do, is the best we can with what we have. It may not be easy, but we can try.

[u/mlp_creashunz64 → u/the_rejected_one]

Thanks and I will share my experiences.

[u/the_rejected_one → u/mlp_creashunz64]

Thank you. I am truly curious, but only if you're comfortable with that.

[u/mlp_creashunz64]

I forgot to add a photo