Hello everyone, I got some questions

[AndyB]

Hello,
My name is Andy and I have lymphedema. I am 33 years old and have always been active with excercising and weight training. I have some questions and I am hoping and would really appreciate whatever answers I can get.
I was diagnosed with lymphedema in my lower right leg about 8 years ago. I was told it was caused by a bug bite. I was given the compression stocking to wear and was given antibiotics to get rid of the infection that had set in. Once the infection and swelling went away, I stopped elevating my foot and stopped wearing the garments and for about 4 years, had very little or no swelling. Since then, Ive had a few flare ups were the leg would get infected and swell up and just recently happend again last week. The vascular dr that is treating me told me that I will always be prone to infections and even blood clots. When he says blood clots, is he talking about when the leg is swollen? Will I always be prone to blood clots even if there is no swelling? I told him that I am on HRT and he told me to stop it, he said the slightest amount of testosterone can cause blood clots. I have been on HRT for about 4 years now and if I dont get my injections, I feel miserable and tired all the time. Does anyone here have any knowledge about this?
I have now resigned myself to following a strict regimen on preventing swelling, no matter how well my leg feels and looks I am always going to treat it like it should be. I really kick myself for not being as diligent as I should have, but no Dr ever told me that this problem would cause me to be suspectible to infections. The two Drs that Ive talked to acted all nonchalant about it and just told me to wear the garments and keep my leg elevated whenever possible and to raise the foot of my bed so I can sleep with my leg elevated above my heart.
In short, here are the questions that I have guys and girls
1. IF I follow a strict regimen and keep my weight inder control, can I expect this problem to appear in another limb that is currently not prone to swelling?
2. Will I have to be careful about what medications I take?
3. Will I have to stop my hormonal injections? I only take a supplemental dose. I dont want to worry about blood clots.
4. Can I always expect to be fighting off fevers and infections over the slightest things?
5. Can I still expect to be able to excercise reguarly? Ive been into body building since I was 14 years old and I have no plans on quitting at all.
6. Is there any natural supplements that I can take that will help with this problem? Like natural compounds, herbs, and vitamins?
Thanks alot for your help and comments people.
Andy

[patoco]

Hey Andy

Super welcome to our family here . glad you found us.

Excellent questions and I answered them below. If you have any further questions don't hesitate for a second to ask. That's what we are here for.

1. IF I follow a strict regimen and keep my weight inder control, can I expect this problem to appear in another limb that is currently not prone to swelling?

More then likely you will not have to be concerned about this. Generally, with secondary lymphedema, it will stay in the limb that it first effects.

2. Will I have to be careful about what medications I take?

Yes. Some medications have an effect on the lymph system. NSAID's for example cause the contractions of the lymph system (one way it moves fluid) to slow down and almost stop. Therefore, NSAID's cause addtional swelling.

Other drugs like steroids, cortizone tend to supress the immune system. Because of that I urge people not to use them.

3. Will I have to stop my hormonal injections? I only take a supplemental dose. I dont want to worry about blood clots.

This is something you will need to discuss at length with your doctors. I come down on the side of saying that you should stop the tesetosterone. Here's a good brief info sheet from Harvard Health:

http://www.health.harvard.edu/newsweek/ ... terone.htm

Because blood clots can be a complication of lymphedema, you add tremendously to your risk of developing one when you combine the two (LE and testosterone)

Here is a page that briefly goes over the possible compilcation of lymphedema:

LYMPHEDEMA COMPLICATIONS

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

4. Can I always expect to be fighting off fevers and infections over the slightest things?

A lot of that will depend on your susceptibility to these infections. From what you said, you are more prone to them. I am as well and always seem to be battling infection. One other thing to remember is that any limb with lymphedema is immuno-compromised. This page will explain that:

LYMPHEDEMA IMMUNODEFICIENT LIMB

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

by the way here is a good info page on infections:

LYMPHEDEMA CELLULITIS

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

and prevention:

LYMPHEDEMA PREVENTION OF CELLULITIS

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

5. Can I still expect to be able to excercise reguarly? Ive been into body building since I was 14 years old and I have no plans on quitting at all.

Here's the good part. Yes, absolutely you can regularly exercise. Infact, you should, especially since your body is used to it. New studies are indicating that good exercise can actually help maintain the over-all health of the lymphedema patient and does not necessarily contribute to worsening of the swelling.

I was always incredibly active with bi-lateral lymphedema. Loved gardening (raised bed method); hiking, walking, swimming....even other things like bowling.

6. Is there any natural supplements that I can take that will help with this problem? Like natural compounds, herbs, and vitamins?

There are no clinically proven supplements that are going to help lymphedema itself. However (and this is my own belief) that a person with lymphedema is less able to rid the body of waste products such as radical free agents. This is because the lymph system is basically our bodies sewer system. If it is impaired, then the body cannot cleanse itself as it should. This particular point has actually been demonstrated clinically.

So, I take a vitamin regime. This includes the usual daily, but also anti-oxidant vitamin therapy. Andy, one other thing is that the healthier your basic life-style is, the better it is going to be for managing and controlling the lymphedema.

BTW, I do take a protein supplement as well. Protein powder made from
whey not soy.

People that exercise regularly, eat a healthy diet, and maintain proper weight are going to have a much better time dealing with this.

Also, with proper treatment such as the manual decongestive therapy; proper use of compression bandages and garments, the lymphedem is going to be easier to manage.

All this is the real key to how bad the lymphedema is going to get and how many of the possible complications you will experience.

Best to You

Pat

[AndyB]

Thanks for answering my post Pat. Ive tried to respond earlier but for some reason my post didnt appear so I am going to try this again.
I really appreciate your answers but could you clarify a few things for me?
When you say that you come donw on the side of me stopping the testosterone injections, are you saying I should stop? Ive been taking test now for 4 years and never had any problems, why stop now? If I dont take the injections, I feel miserable and tired all the time plus Im just asking for more medical problems as time goes on. You got to remember, I only take a supplemental dose, nothing more. You also got to remember, here in the states, all Drs except endocronologists, think taking test for any reason is bad. Here in the states, if you dont have a script for testosterone and the police catch you with it, it falls in the same category as heroin. Pretty stupid huh?
When you say that it looks like Im prone to infections, what are you basing this off of? Ive had 4 infections in the past 8 years since my diagnoses and thats with me not following a regimen, which Im definetly going to do now. My last infection was a little over 2 years ago, and the one before that, 2 years as well.
I really appreciate your help Pat and I look foward to picking your brain in the near future!!
Andy

[silkie]

Hi Andy
Welcome to our LE family

Have been watching your postings with much interest.
learning a lot

Firstly my posting went and got lost in the computor highways for some reason

Infections grrrrrrrrrrrrrr personal experience of mine and thankfully
i was pre warned you might say by my therapist

I was lucky all I was taught by my therapist i did never missed and my lymph responded brilliantly i was so disaplined didnt alter my daily
routine looked after those limbs and it worked wonderfully
I had elephantitus and my skin i think is brilliant my lymph soft no infections I was so lucky

Then out of the blue for no reason (i was on an antibiotic a day to help the immune system) i got cellulitis it took months to clear it properly
and after there was more damage to my lymphatics and my mobility went back to how it was at the worse stage of the elephantitus and has only got to about half of what it was before

I am great now

But infections can happen even when you are doing everything right hun
What the daily care we give ourselves does is help prevent infection
but there is still some that hit us no matter how much we do our daily care

Just remember when it happens if it had not have been for all the care you have spent on those limbs it could be a lot worse and more frequent

huggggggggggggggggg


Silks xxxxxxxxxxxxxx

[patoco]

Hey Andy

Thanks for your note, helps me understand a bit more on where you are.

I was under the impression that you had constant infections and was thinking from that perspective.

If your infections have been that limited and if your physcian thinks you need the testosterone shots, then discuss this with him. If you only get the shots periodically, it may well be safe for you to continue.

Just be sure to read over the info on cellulitis and infections so that you will be able to recognize immediately should one start.

Andy, these infections can cause serious worsening of the lymphedema and need to be avoided at all costs. Silkie was absolutely correct when she said they can come out of no where.

BTW...since you like exercise and working out, swimming is the best exercise possible for lymphedema. The gentle pressure of the water actually acts much like the decongestive therapy is helping to move fluid.

Hope this helps!

Pat

[AndyB]

Thanks for replying Pat and thanks for your coments Silkie
Is there anything you can do to avoid infections? Does this mean every cold I get should be treated as an infection? I know when I get a bona fide infection, my leg turns red and gets swollen and usually, bot not always, I get a very bad fever with severe chills. Can you avoid the infections by simply elevating your leg and preventing the fluid from building up and keeping the leg clean?

[silkie]

Hi Andy

one of the signs of an infection coming on are the flu like signs

I take one ab a day which i find helps a little and as soon as i get the redness and the flu like symptoms i have ab's at the ready to increase to the dosage pescribed by my doctor all this is done with the docs approval

when red and swollen (that soreness like sunburn) i stop the massage wrapping and supports elivate as much as you can the legs will swell but it certainly helps the infection (i think) clear faster also lots and lots of water sounds crazy when lymph fluid is our problem but it does really help

get the infection early and help with the little things and sometimes you can get it back under some control

huggggggggggggg

Silks xxxxxxxxxxxxxxx