Factor V Leiden Support Community Group

This is a group for anyone who has Factor V Leiden, a clotting disorder. Or people who know someone with this condition.

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Heart, Blood & Circulation
/ Factor V Leiden Support Support Group

Anybody out there?

Urlacher
Urlacher
There haven't been a lot of posts in this group lately so I thought I would put up a post LOLOL . It will be 5 years in in March since my P.E. And I found out I had FVL. I found it has not gotten any easier. I am able to keep my INR stable I eat the right foods, other than fast foods lol. My problem is I really have not felt any better. Even though I made it back to work, went back to doing normal things and never looked back. I just feel like I never got over the hump. Wether it be pain in my side or pain in my legs I just never have felt the same. Maybe it's side effects from Coumadin or other meds and I also have other health issues, but really never have that feeling of peace that it won't happen again. Doctor says it's something I will have to live with. I know it's not much of a topic but anyone else sort of stuck in this mess too. I try to stay positive and pray, that someday I will feel like it's all behind me.
alice68
alice68
Mine was about 5 years ago also. No, you never really are at peace. I forever have to elevate my legs. Put my car seat back and put my legs on the dashboard on trips over an hour. My legs start to get numb. I exercise and need to be careful not to fold my legs, say in a yoga position. My legs are full of bruises, cuts and dead blood that turns black that seeped from my veins when I've had too much blood thinner. So, as a vain woman, I put leg makeup on my ankles and never ever wear shorts anymore,

I have the CoaguCheck machine and my husband checks my INR weekly so I can be sure my blood isn't too thin and can regulate what I eat and if I can have a cocktail. I would do anything not to take the rat poison, that's exactly what it is. Your doctor has to order the machine for you, and at least I know when I can skip a pill.

I've crossed my legs all my life, being a women and its a hard habit to break. I don't worry about clots anymore, I had no warning when it happened originally, no surgery, my leg just swelled up and hurt a lot.

Count your blessings and try not to focus on it. We just have to live with it, not the end of the world. Chin up and enjoy life, it is what it is.
allisonwenger
allisonwenger
My husband was diagnosed 19 years ago when he suffered a life threatening DVT of his left leg, through the groin, an up the venacava vein. He has never really recovered either. He's always complaining about leg, hip, and groin pains. Dr said to lose weight to relieve pressure on the lower blood supply, but he doesn't. He has been taking a daily injectable of LMWH for 19 years. He wears a compression sock on his left leg every day. So I/we can understand your feeling of unwellness!