Polls

[Nancyw]

Has anyone put together a series of polls to get a better idea of total symptoms. I would like to see the difference in any between primary and secondary, but in each group see the number of say ... ok, don't know how to phrase this but some of the things I would like to know are did you get toximia or preeclampsia with your first birth, do women get worse premenstral, has the type of exercise seem to help or hurt more, and indiviual symptoms that might not even be assosiated with this. How many have diabetes, tourettes, ADHD, high or low cholestorol, bood types, etc etc. I would have no idea how any one would even put such a plan into action. I don't even know how to make a poll. Just wondering if this was ever tried or thought of?Well, just wondering, thanks, Nanc

[dbaird]

Nancy,

I think that is a great idea. Like you, I don't know how to do it either. I will think on that. Maybe start a questionaire or something.

I also wish there was a way to start a Lymphedema Fund to have money for those who need stockings, etc. Not give the person cash but maybe their local Pharmacy/Dr. I know that is way out of reach, but MIRACLES DO HAPPEN. It breaks my heart to read the stories about people who can't afford to get help.

Take care

[Nancyw]

That would be a great idea also Denise of helping those who need things. It is scary just thinking of how expensive it will be with insurance. The worst part is usually those who need the help the most are those that can't work enough because of the lymphedema and treatment is what would help them get back to work. It's a viscious cycle. I read in the paper about a girl who has collected all kinds of money and wheel chairs for those who can not afford wheel chairs. She is homeschool and only an elementary to middle school age girl. Amazing what can be done.

If polls were made they would have to be divided into primary and secondary lines of questions. some things like treatments might over lap but other things are obviously different . It might be to complicated to even figure out who that would be organized or put together. It was an idea that had me very excited though. Why are there not more hours in the day! Ugh!
Thanks for your response and ideas too.
Nanc

[dbaird]

Hi Nancy, I guess you and I can share a little about our lymphedema, maybe others will read and tell if theirs is like ours.

For instance:

Pre period - I do notice my leg swelling more

High Blood pressure - Nope, actually it is lower, it runs in my family

Cholesterol - Good as well

When I eat pizza and stuff like that my leg also swells more.

My one pregnancy was good, no problems at all, I was in my early 20s.

I have never had infections or problems relating to my LE. Thank the good Lord for that. I didn't know it was an issue until I read about it on these forums. I also go to the lymphedemapeople.com
(it is being restructured right now, or atleast last I checked)

Didn't know about the risk of infections by shaving my leg with a razor, I knew I was prone to cut it vs my good one, but not the seriousness of it.

How about you, what have I missed that you can think of?

Let me know, I am really interested in your experience.

[trisha]

I am new to this forum thing-but lymphedema does interest me and bother me. Given that here in the UK obesity in men and women is increasing at an alarming rate..i havn't read all the postings but it seems that the majority of you who comment are focusing on lymphedema after surgery. This i know very little about, i am not a medical doctor, but i have studied A & P and massage.

The lymphatic system becomes compromised for a multitude of reasons but inevitably it all boils down, in my opinion, to acidosis..this is particularly borne out in the instance of cancer and surgery since these are conditions whereby the body is already in a state of dis-ease!

Obesity is caused by the body laying down fat cells to store all the toxins that the body cannot rid itself of quickly enough. This leads to an acid environment in the body. This means that the body is struggling to mainatain is optimum ph balance. We know that the ph of blood has to stay at 7.365 or basically we die. The body goes to extreme lengths to maintain this level even to the extent of compromising other organs and systems in the body.

All this leads me to the fact that instead of talking about stockings and drugs, why is nobody suggesting we look at our diet, our lifestyle and exercise program.

I would love everybody in the world to own and use daily a rebounder (mini Trampoline) this is the most effective way to stimulate and strengthen you immune system and the whole of your body-every one of those 100 trillion cells.
Comments please!!!
Trisha

[Chuck]

Trisha, I'm glad to hear that you have studied anatomy & physiology and I suggest that you continue your studies.

Your description of acidosis and obesity do not match anything that I've seen in the medical literature. Research does show that obesity and lymphedema frequently occur together.

Diet, adequate fluid intake, and exercise are important parts of lymphedema care as explained in Living Well With Lymphedema and many of the articles on this site.

Best wishes, Chuck

[trisha]

Chuck hi
This is good i have a response!

The BMA describes acidosis thus - a disturbance of the body's acid-base balance.

I think i have described just that!

I agree Lymphedema and obesity of course, frequently go together, i'm not sure i suggested otherwise.

Here is my point:

* dis-ease = acidosis )

* obesity = acidosis ) = a disturbance of the bodys
acid-base balance
* lymphedema = acidosis )

So we need to restore balance and i dont think stockings are going to do that.

The root cause is most important, why did that person become obese, have cancer or lymphedema? - often we address the current symptoms and become too focused on allaying those symptoms,fine we need to do that too, but lets not forget to go back to the root cause-this is 'lifestyle' something in that persons lifestyle has caused that person to become ill in the first place...to change the internal environment of your body and bring you back to health you will agree you need to do some serious work?! and i want people to focus on that.

Often we get entangled in being tagged with a label of this or that 'condition' - hey it all boils down to the same thing!

'imbalance' of your internal environment.

love to hear others thoughts on this too..

[Shautru]

Hey Trisha,

I'm going to try and give you an insight via my own experiences here.

I'm a 41 year old female, live in the US. I have always been a mostly healthy person, but also somewhat heavy set, not obese, but not a twig either. For those of you who are skinny you'll need to forgive my use of the term 'twig' please

Anyway. when I hit 40, I was feeling very run down and was suddenly heavier than I'd ever been. But now, I had to add ontop of that my back, hips and knees were screaming pain at me ALL the time; and I had NO energy. I was doing good to get up and go to work.

So, yeah I go to the doctor, they want me to lose weight; I want me to lose weight, but I can't stand for more than 2 mins before my back starts feeling like it's going to snap in two. Add to that swollen extremeties adding to the weight to lift and it becomes cyclical.

At any rate; personally, my past year has been ...

1) Finding I'm anemic and cannot absorb B12 naturally so therefore am not making enough red blood cells and the ones I do make are sick.

2) I have sleep apnea, which results in not enough restorative sleep and therefore lessened oxygenation happening which doesn't help circulation either.

3) Degenerative disc and joint disease which is the pain with standing and requires physical therapy to learn how to live with that uncurable condition

4) Finally, Lymphedema and getting that treatment.

Now that sounds like a lot, and maybe it is - but more importantly it's what it does to a person's overall outlook on life. One can become quite depressed under all that and really not even realise just how low they've got until they start fighting their way back up.

So, yes, I realize I need to lose weight. That's what started this road over a year ago; it's just I have no choice but to focus on these symtoms to clear a path to the root, which is the weight.

Please also realise that weight isn't the issue for all the people here. Loads of people have LE and they are those "twigs" I was talking about at the beginning.

[Emily P. Bees]

Trisha:

I think what you have is a “theory.” Nothing intrinsically wrong with theories, but the fact is they are not the same as proven fact. We need theories because it’s when we test theories that we learn whether they are true or not – which gives makes us more informed about our conditions.

Until someone carefully tests our theories in a controlled scientific way, we don’t really know whether they hold up or not. Unfortunately there isn’t money, time or personnel enough to study all the theories out there. So, sometimes folks determine which to study based on what seems to be working for people trying out theories.

I’ve had various reasons to follow medical sciences over the last few years, and one thing I’ve learned is that MOST theories DON’T prove out when tested. So when trying out a theory, or promoting one to other people, it’s important to remember that most likely there’s going to be some hitch to it in real life. Some theories do work out, some work out only partially, some point us in new directions we never would have thought to look otherwise, and many just plain turn out to be dead wrong.

For the most part, it can’t hurt to try out our theories as long as they don’t somehow interfere with our prescribed treatment plans. However, we have to be careful about not assuming that what seems to work for us is the answer. For instance I might be on the verge of a major improvement for some reason and then I start drinking goat milk. The improvement takes place. I could legitimately say that when I started drinking goat milk I improved vastly – but really the improvement would have happened with or without the goat milk. The old saying is “correlation is not causation” – or just because things happen together doesn’t mean one caused another to happen.

I think it’s very important when we try things to carefully sort out in our heads which are theories and which are tried and true scientifically proven fact (and, of course, it’s also important to evaluate the scientific evidence carefully). If we are trying out something that’s theoretical, we should recognize that – rather than assuming that it is a fact. Even when based upon an assortment of known facts, it isn’t a fact. There may be other considerations that weren’t taken into account, or the pieces of the puzzle simply may not fit together the way it appears they might.

That said, I believe diet and exercise and other forms of good self-care are always important. When you eat, exercise and sleep well you’re going to feel better no matter what condition you happen to have. When you feel better, you feel better – regardless.

[guit30]

I just read an article today about Lymphadema and it was saying that Lymphadema and obesity go together
Jim
PS- Since this is about the only site, everything on here is right? Don't get me wrong, I really appreciate this site, but it goes against alot of what I have been told by my doc and therapist
Jim

[dbaird]

Hi, I believe we have to really watch our weight more because of LE. We can't excercise like others but we can watch what we eat and do the best we can. I joined Weight Watchers and the pounds did come off, did I stay with the program? No, but I know my added weight is from what I eat. Sure with the swelling etc, it does cause us to weigh more but being disciplined on our diet is the main key. I need to start the WW program again because it does work.
Good luck all and God Bless..