Managing Lymphedema

[panther73]

Hello, I apologize if this is not the correct forum for this post. The amount of information here is sort of overwhelming. Anyway, to make a long story short I was recently diagnosed with Lymphedema by a vascular surgeon after a year and a half of battling a very sore and swollen foot while going to 8 different doctors. I have gone through the initial phase of wrapping my legs to get the swelling down and I now have my custom garments. It is still not to where I want it to be so I have some questions for those living with lymphedema in their feet:

1. Diet: How much does diet play a part in getting the swelling down? They told me no sodium or caffeine and I have done an excellent job with getting rid of the caffeine in my diet. However; it is very hard to find low sodium foods these days. Do fatty foods cause swelling?

2. I used to play sports 3 or 4 times a week until I developed the problem and I am finally getting back to playing again after being off for a while. Any tips for playing with the garments?

3. I received a pump and comfort sleeves to use at night. Does anyone find the comfort sleeves helpful? I do not see how they can work as they are not very tight.

4. Is there any place that makes nice looking custom garments? The ones they gave me are really, really ugly. The black pair is OK but the tan ones are bad.

I really appreciate any help....

Thanks,
Tim

[patoco]

Hey Tim

Welcome and I very much appreciated your post...some super super questions there.

I'll try to answer running down the list.

(1) Diet - despite all the so-called gurus out there, there really is no clinically proven diet that helps lymphedema.
The diet that is best is a generally good diet - right types of food, fruit, meats, carbs etc. It makes absolutely no difference about caffeine. I don't even know where they got that from, except that coffee (caffeine) can act as a diuretic. But, a normal amount is simply not a problem. I love that mug of coffee in the morning and don't see any valid medical reason to not enjot it.

Salt of course may be different. it is generally wise to not use a lot of salt in anyone's diet as they have pretty much shown how an excess of salt can cause significant medical problems anyway. That was a tough one for me because I used to enjoy a little food with my salt. I really really slashed it down when I started the all over lymphedema. Surprisingly, I've done quite well. LOL...ok...amazingly well. I also find that adding a few spices can help on the flavor too. Not pepeprs and stuff that is going to burn you stomach out, but other spices I enjoy...and of course onions and garlic. Fat is also something that we don't need much of so a regular diet with the average amount is just fine.

It frustrates me so much because these wanna be guru's have all these crazy diet ideas and I'll tell you if I had to narrow my diet to what many of these quacks say...yuck...who wants to live/eat like that, especially if there is no need.

The one thing that is critical though is weight control. Obesity and especially morbid obesity can in and of itself cause lymphedema as it literally crushes the lymphatics and overwhelms the system. So, if you are over weight or obese, it is important to loose that weight.

(2) Sports - wearing compression garments and doing exercise is something you'll kinda need to work out for yorself and your situation. Generally, I would simply say that any garment should not cause you pain while doing sports. Neither should the compression bandages. If they do start causing pain, then you'll need to make adjustments, again based on your own lymphedema situation. I am really glad to hear you are getting back into them too. That is going to actually be better for your lymphedema and over all health then just sitting around. Until the disaster of this last couple years I was always very very active and did tons of stuff. Kudos to you on this

(3) Sleeves at night. Again, what I would suggest is having your LE therapist work with you for the correct compression you need. Too loose and yo're right they won't do much good. But, too tight and they can cause other problems such as potentially getting a blood clot. You also don't want them so tight that they bunch up or get twisted in some way.

Because of extensive lung fluid I can't wear any type of compression garment or sleeve and have to stick to bandage wrapping. But, I do know that most other people think their sleeves really help. I would also say be very wise with the use of a pump. You didn't mention the one you use, but compression pumps can cause serious damage and in one study about 35% of the people (male and female) that used it came down with genital lymphedema.

(4) The LympheDivas are the only company I know of that makes more fashionable attire. I've heard you have to be careful about the compression as sometimes it isn't high enough.

http://lymphedivas.com/

You might try them. Thing is that they make studd for the ladies and I'm not sure if they make anything for we gents. Hmmm..... a missing market potential here.

Hope this helps Tim. Don't hesitate to post any question or concern and again, a super welcome to the family!

Best to you

Pat

[panther73]

Thanks, Pat. I was curious about the food as the caeffine does not seem to bother me at all but they said to stay away from it. I am using the Lympha Press as my pump. I have not heard that it can cause damage. They told me to use it every night so I have been doing it and have not noticed any issues but it has only been two weeks.

[panther73]

It's been about 6 months since I've been wearing the garments and doing the compression thing at night. I have seen no change. It hasn't gotten worse but it hasn't gotten better. I play a lot of sports so it does tend to be sore. I've noticed salty foods really cause me a lot of problems. Do you know if there is any kind of surgery or drainage techniques out there to reduce the swelling? There wasn't a lot under the treatment board. It's kind of annoying to always have a swollen foot. lol. Also, I was looking at the list of doctors and didn't see any in the Pittsburgh area. Does anyone know of a way to find a good doctor? I've been to 8 different doctors and they all told me something different.

[patoco]

Hey Tim

There are some surgeries, but frankly they can wind up causing a lot more problems then they solve. I don't know of a single lympher who has had them and who is glad they did (me included).

You can find out moe info on our surgery page:

Surgery for Lymphedema

http://www.lymphedemapeople.com/wiki/do ... lymphedema

BTW...the University of Pittsburg has a great genetics study program for lymphedema patients, they may know of a doctor in the Pittsburg area.

Pat

[panther73]

Thanks, Pat. I will contact them. I get discouraged that everything I read simply says there is nothing I can do about my condition other than compression management. I also get really upset that it took the doctors in my area over a year to figure out that I had lymphedema. I went to 7 doctors before one of them thought I may have lymphedema. I wonder if it wouldn't have gotten this bad if they diagnosed me earlier. I went to a few podiatrists, my family doctor, a vascular surgeon and a couple of orthopaedic surgeons. You would think they would have been taught to recognise the condition in medical school. Anyway, enough venting. I actually had to go to the ER recently and found out I had celulitis. They said it is common among people with Lymphedema. After I got the celulitis I noticed my foot started to harden a little bit and it was never like this before I got the celuitis as I always wear my wraps. Do you know if others have seen this happen with celulitis? I do my best to keep the swelling down. I try the self massages but I am not sure I am doing it the correct way. Going to the therapist is way too expensive. I cannot afford to pay for it and my insurance only covers about 15 a year.

[patoco]

Hey again Panter

That tissue hardening is called fibrosis and is a complication on not only lymphedema, more in particularly cellulitis.

Each infection damages the lymph system further and even more impairs its ability to function - leading to increased swelling and fibrosis.

This page should help provide some tips on self-massage:

Lymphedema Self Massage Therapy

viewtopic.php?t=227

Also, this page gives details on the fibrosis:

Lymphedema and Fibrosis

http://www.lymphedemapeople.com/thesite ... brosis.htm

The one thing that continually mystifies me is why doctors are so unable to recognize and/or diagnose lymphedema. Do you know I was actually first diagnosed by a small town family doctor in 1959. If this guy knew enough to recognize it, what's up with the doctors today?????/ There is so much info out there now about lymphedema, there really (in my opinion) just is no excuse for this. Grrrrrrrrrrr

LOL...don't get me started on this issue

Pat

[panther73]

I agree. I was amazed it took all of those doctors to figure out what was going on with my foot. They would look at it and I could see they had no idea. I wish I would have found out earlier as I could have prevented a lot of what I have now. However; it didn't happend and it is what it is..... I have been throughout your site and I did try the manaul massage techniques. However; I can't tell if I'm doing them correctly. Are there any guides out there with pictures? lol. I'd hate to have to pay again.

[patoco]

Hey Panter

I would recommend a couple spots that provide some good info and where you can get self mld videos:

This is our page on leg lymphedema and when you scroll down the page it gives a good description of self mld for the leg.

Leg Lymphedema

http://www.lymphedemapeople.com/wiki/do ... lymphedema

Take a look at this page:

Manual Lymphatic Drainage

http://www.stepup-speakout.org/manual_l ... hedema.htm

These pages from my blog Lymphedemaville also give illustrations on self lymph node stimulation

http://lymphedemaville.wordpress.com/20 ... lustrated/

Leg Self MLD

http://lymphedemaville.wordpress.com/20 ... -patterns/

Hopes this helps

Pat

Step Up - Speak Out is a great site started by lymphers and one that provides excellent evidence based medicine and info. I have a great respect for their work too.

[annelicious]

Hi
I am new

My name is Annie. I am 28. I have been living with lymphedema for the past 13 years. It took such a long time before doctors could figure out what was wrong with me. My condition was only diagonised 5 years. It has been frustrating years of my teen hood. Knowing your feet and legs are swollen yet no doctor can tell you what is wrong. Finally when i was correctly diagonised it was even harder, it is when the depression real hit hard. I felt this condition has taken away my life. I still feel that way many times. It is a sad feeling i try to fight all the time, but i dont win all the time. After graduating with my first degree in Chemistry. I got a job as a Chemist. My job required me to stand all day and then i realised that i was actual putting a strain on my feet and legs and the swelling increased. So i quit my job and came back to university at the age of 26 to do another degree. It was a very difficult choice to make . I am now doing Computer science and i do not real have passion for it. On top of that my heart got broken(three years ago and i never dated again) and it is all because of lymphedema.I find it hard to go through the days and depression gets to me so badly. My performance has been affected since i am worried most of the times. I am now doing my last year at varsity. Instead of being excited about my last year in varsity. Now it is like i am so scrared of life out there. Getting a job, cant dress up, when you are young you do want to look good. I am not real into what i do and that also adds to the depression. But what worries me the most is ending up alone. I dont want to be alone, it is so scary. On top of that all my sisters are married and have kids. Even my young sister is married. All my friends are either married or in a serious relationship. How do i trust again when lymphedema was the cause of the last break up.Besides i dont feel good enough about my self. It is so hard, i think depression gets to me as i get older.Starting a family scares the hell out of me. When i was in my early 20s i never thought about it so much but now it hurts so bad. I feel like i have this void in me. Most of the times i feel like life is not worth living, what do you live for when you have a chronic condition, no one to love you. I feel so helpless. Sorry but i just had to get it out of my chest.
Thank you for listening.

[Cassie]

Hello, Annie, and welcome!
I read your three posts here, and I'm so sorry it's taken so long to be diagnosed and it's so hard to deal with this. Have you been treated for your lymphedema by a well-qualified lymphedema therapist? Wrapping with short-stretch bandages and Manual Lymph Drainage massage, as part of a Therapy Intensive, can do so much to reduce the swelling and keep you looking and feeling well. After good therapy, self-care can be time-consuming and sometimes frustrating, but we're all here for you and really glad you've found us.

Grieving is a big part of learning to cope with this chronic condition, and it's hard work! I hope by posting here you'll know you're not alone in the sadness and sense of loss you feel. It's dispiriting to think about getting a job you're not really interested in. Have you spoken to a good Occupational Therapist with lymphedema experience about ways to adjust your workplace so that you could continue to do the work you love? No doubt your new computer skills would be of good use in a Chemistry career, so for goodness sake don't give up on that just yet!

As for that one special person to love you and walk with you for the rest of your life, it's a two-way street. It's easy for us to want to be loved, but opening yourself to love another is just as important. After your earlier disappointment that can sure be difficult, but when you're ready, a whole world of possibilities lies open to you. If he left because of lymphedema, he was Mr. Wrong. No one deserves a mate who demands physical perfection, and the kind of long-term companionship and comfort you want is made of other values than that: mutual warmth, affection, encouragement, protection, patience, forgiveness. You need to find a person as sensitive and special as you are -- hang in there!

I hope you'll feel good enough about yourself to seek out the care you need in order to get and keep your lymphedema under control, and to move back toward the goals you can feel passionate about. You're really worth it!

Gentle hugs,
Cassie