Sorry I did not see this sooner. I am about 1 year into this. I tend to have a lot more bad days then good. I was beginning to think that it was just me. I am starting to feel it must the Coumadin? I recently asked me doctor for a anti depressant/anti anxiety med. It has actually seemed to help a little bit. I find myself getting very stressed every time I feel bad or feel a pain wondering if it might be another clot. I keep hoping they will come up with another medication. There really are not a lot of options out there to treat this! Hope your doing well. Hang in there! I am glad to know that I am not the only one feeling this way too! :)

Thank you for responding . It is hard to find any feed back anywhere on this disorder. Iam coming up to my four year anniversary of the P.E. and finding out about FVL. It has been the most difficult four years I have ever had health wise. Even on the good days I still feel like shit if that makes any sense. Since finding out I have never felt the same. My levels drop down everyonce in awhile doctor says cut down on vitamin K . But I believe it has a lot more to do with just keeping our INR ok. The P.E. set me back physically and I still have never recovered . I try to stay positive and eat the right foods and be thankful for each and everyday god gives me. I hope things are going well thanks.

Hi there, I'm 18 months post PE and must admit to mixed feelings on discovery that I had FVL homozygote (two copies of gene). After being annoyed and "why me" for a while (as you know, hainvg a PE is bad, then just when getting used to it you find out you're FVL), I took it as good news - hey, I know why I had a PE and I know how to avoid future ones (via Warfarin (I'm in UK)). I'm back to training now (cycling and running) and I've adjusted to FVL. My advice is as follows:
1) Work out your lifestyle changes to try to ensure you don't clot again (e.g. I drink much more, I break up long journies, I avoid crossing legs, if I'm in a > 1 hour meeting I'll get up to go to the loo to stretch my legs) etc.
2) Keep diet consistent, but don't fixate on INR - mine wanders, but provided it's over 1.5 and under 3.5 I don't let it worry me (my target range is 2 to 3, but I've cut it some slack so I don't worry about it)
3) Remove "stupid" and unnecessary risks from life (e.g. don't jump red lights in car, wear gloves when using a saw) to try to cut down the bleed risk (as we know, we used to be good at clotting, but now we bleed lots)
4) Then, focus on other stuff - e.g. I'm trying to raise money for charity, I make videos, I try to do a good job at work, I'm there for my daughter, etc.
5) Don't worry about it too much - With the above we've done what's sensible and reasonable, there are plenty of risks in life - it's best not to worry about them too much, try to ave some fun

Yes, there are bad days, but let's enjoy the good ones and make every day count.

My very best wishes to you. Good luck. Andrew.

Thanks Andrew I have pretty much have tried all of the above and continue to do so. You hit the nail on the head with all your suggestions. I don't rarely think to much about the INR and and I keep my diet pretty consistent. I have had six back surgerys before I had my P.E. and found out about the FVL I was really just starting to get back in the swing of things. It's been a lot of ups and downs physically, mentally and financially over the last 18 years and somehow I still have a job, a beautiful wife and 3 great kids. The best thing is just waking up another day and being lucky for everyday. There are stretches where everything is going great and then I hit another setback. I believe it's how you react to those setbacks that make you the person you are. Your suggestions are words to live by very well put. My INR stays between 1.9 and 2.5 so iam all good there. I think I have some side effects from the Coumadin over the years, iam taking 7mg a day. I also have gout so my diet is very important. Thanks for the feedback and I hope all is well.

I can relate to some of your problems, but not all. My DVT and PE was back in 2002. I find it interesting that you have joint pain. I experience severe joint pain in my fingers from time to time. I had not thought it could be related to a PE, or DVT. But, after thinking back, I realize this started shortly after My DVT & PE. I always figured it was arthritis. I also developed gout and asthma shortly afterwards. Wonder if there could be a connection to those as well? My main problem though, is shortness of breath. This has gotten ony slightly better with the astma inhaler I take. I tried working out at the gym for about a year. The whole time I would be breathing so hard that people would look at me like, "Is he going to be OK"? Guess I'll always be SOB. Don't get too down. You're not alone. There are many of us that can relate to you and your situtation.

Randy

Thanks Randy I have been able to control my gout for a period of time now. Watching your diet is important with both FVL and Gout. I haven't had any breathing issues. I hope you are ok with that. While working out your breathing is very important while doing reps with weights and cardio. A lot of people don't realize how important it is to breath correctly while working out. I have had chronic pain for a long time now and at one point had a pacemaker hooked into my spine for a pain blocker. I have been getting joint pain for awhile.I don't know gout is related to it. My foot and toes usually swell up. Everyone is different with that I know.i haven't felt the same since the PE, and taking anticaugulants. Even after 6 back surgerys I was able to feel normal again but after the PE it's sort of been down hill for me. I just try to stay positive and be happy for each day. Thanks for the support Iam so glad that I know there are other people that understand and that can relate. Very grateful for this group and all the discussions that we are all able to read and comment on it really makes a difference ! Thanks again!