lower extremities - how far to push?

[fineline888]

Hi, I am new here and relieved to find others living with lymphodema. Mine was misdiagnosed for 4 years and doctors are still uncertain if it is primary or secondary. In any case, most of the fluid is retained in my left knee into my calf and hip. I have been defying recommendations by continuing to work but the fatigue is increasing. My recent wake up call came when I tipped my pelvic bone and had to be put in traction from dragging around my fat leg. I have two questions and would appreciate your input....

It seems every time I have a large flux of fluid (either up or down) it is followed by a period of emotional stuff, usually crying and sometimes some mild frustration. Thats my best description. One lady from my clinic says shes heard of that but doesn't find anything documented. Anyone else have these reactions? Or am I just weak? I have irregular cycles that can also have some nasty mood swings attached to them but I assume that comes from the thyroid condition that started all this in the first place.

Second, in my commitment to staying at work I have cut out most of my social life and home life activities. I am just exhausted at the end of the day. Does this ever get better? Should I give in and stop working so that I can spend some time with my family? I am having more exhaustion than anything else. I am still having more "good control" days than bad because I tape and follow a pretty strong regimen that was developed at the local clinic. I haven't been able to find anyone to help bandage (my husband is willing but not always in town and if you are doing that you know how hard it is to keep asking and scheduling it in...I think it freaks him out a little because it looks so much worse than it feels and then he worries....I'd like to find a way to bandage that doesn't involve him--he's got enough to worry about. Thanks for listening and being here. If you have any suggestions, they are muchly appreciated. Thank you for sharing your stories and your strength. today was my first day here and I wept for an hour after leaving the site. Lynn

my direct email if you want it is: roland31xtra@yahoo.com
instant message me on yahoo messenger: roland31usa

[cpthomas]

Dear Lynn,

I am a lymphedema therapist, and when I first read your post I had to do a double-take to make sure it wasn't from a patient of mine...over the past two months she and I have literally been dealing with the exact two issues you mentioned! I am posting a general reply with my thoughts here, but please feel free to email me personally through this web site if you'd like to talk more specifically.

Your first question asks if others have experienced increased emotions and/or emotional upsets along with fluid exacerbations...I have seen this very often in patients, regardless of whether the lymphedema is primary or secondary, in the arms or legs. There is no postulated mechanicsm to explain why this might happen, but to me it seems to make a lot of sense that one would affect the other.

Your lymphatic system runs throughout your entire body and is controlled by your autonomic nervous system (which means that it operates totally independently of your control, sort of like breathing, you don't have to consciously think about it for the system to work). The autonomic nervous system is also intimately involved with your body's "fight or flight" responses...in other words, it's working non-stop to keep everything on an even keel...if something tips the scales of balance within the body, it will automatically kick into gear to get the situation back to normal.

When something happens to your body that creates excess lymphatic fluid, the body senses that it is out of equilibrium...it doesn't know what the threat is or where it's coming from, but it knows that it wants to do something to return to balance. Your "fight or flight" response kicks in, and lots of adrenaline and other hormones are released to be used if you need them. Since your lymphatic system is compromised, it can't use any of these hormones to "kick into overdrive"...it can only operate at the same pace it normally does...so these hormones and the extra energy they create need to go somewhere. It HAS been researched and documented that when these types of hormones are present, they can create a feeling of intense emotions within the body, which can result in feeling tearful, stressed, wired, etc.

Another phenomenon I have noticed anecdotally in my patients is that some of them have a definite increase in fluid during the time around their menses. I know a woman who has lymphedema in both legs and who can stay beautifully maintained for three weeks out of every month...she works, exercises, takes care of her family, no problem. But every month in the week just before her period starts, she experiences increased swelling in both legs, and it becomes painful for her to wear any type of compression. So she simply cannot work during that week because she cannot wear her compression stockings. Right now she is experiementing with a low-dose birth control pill to see if it helps to control the problem. Some people have also experimented with taking a light diuretic during this week to help with increased "congestion" in the lymphatic system. It helps to have a good family or lymphedema doctor who is willing to experiment with you.

This same patient eventually decided that she needed to leave her job, as she was feeling like you described, that it was taking all of her drive and energy, and she had nothing left to devote to the other areas of her life. This decision was made after a lot of deliberation and lots of experiments with different things to try to make work easier. In the end, she decided her body was trying to tell her that it was all too much, and she has changed careers. But at least she felt like we had exhausted all options to try to make it work...she felt like she'd tried everything possible and knowing that made it a little easier for her to quit.

The best tool you can have in helping to problem-solve work issues is a good lymphedema therapist, who is open to trying different combintations of things to see what works for you. There are also different alternatives to bandaging available that your therapist might be able to provide...if you have specific questions about this, please email me.

I guess my main purpose in posting this LONG reply is to let you know that you are definitely not alone...thank you for sharing your questions as I'm sure there are others reading these boards who are working through the same issues. I hope this info helps a little bit.

Christine

[fineline888]

Thank you Christine and everyone who responded directly to my email. Your time, compassion and input were a God send. I have been feeling so very alone. I am hard on myself; but my family and my job are also filled with people who get frustrated because yesterday I could and today I can't. I have to learn to be more gracious about my days when "I can't". Instead I push and try to prove something and then we all get frustrated. I think, for a long time, I believed that ignoring it was making it better. In a couple of hours or a couple of days I would be strong again. Learning to roll with this with a happy heart is working a heck of a lot better.... I would not have guessed how much pride and ego would work me over. I need glasses. I wouldn't think about walking around bumping into walls...but somehow this hit me where I live. I resent not being able to buy or wear heels (hell not even women's shoes). I want to dance again. And, I have learned that I need to be more gracious when I CAN. My family keeps trying to make accommodations for me and it is hard to have them move cars, change plans when its a day I can walk. I see the pain and perplexed look on their faces. Please keep up the posts. I need the strength that is evident here. I found out my insurance is no go today....but I put in the papers for the appeal. Prayers to all of you. Thank you for listening and sharing. Lynn