Life Changes: A Double Diagnosis of Lipedema & Lymphedema

About a month ago, I learned that I may have lymphedema, which means your lymphatic system is compromised or blocked in some way. Earlier this week, after visiting a local outpatient rehab lymphedema clinic, I learned that I have both lipedema *and* lymphedema.

Both manifested later in life; I’ll be 50 in December and so I didn’t notice any problems/symptoms until I was middle-aged. Up till then, nothing seemed amiss and everything looked and felt normal. In effect, I received unexpected news and it was a double whammy; not just one issue with my lymphatic and vascular system, but two. Neither can be cured, only managed.

I am just now learning about these diseases and they will be a part of my daily routine for the rest of my life. Since most people haven’t heard of them and don’t understand them, I wanted to share the experience with friends, family, and whoever else may find themselves in the situation I am now.

A friend of mine wanted to know more so she could understand, so I wrote the below-posted information to help explain it as best I could. Then I realized I might as well post this info on my blog to let people know about this new development in my life and to also inform those who may want to know or may need to know more about lipedema and lymphedema.

As I told my friend Mari on Facebook, “Lipedema is rare and it’s not caused by what you eat or how much you weigh. Overeating or improper nutrition do not cause it; therefore, losing weight or restricting calories will not affect the diseased tissue/fluid. In fact, I can attest to this, since I’ve lost well over 50 lbs over the past few years. It does not matter at all. Anorexics can get lipedema, in fact. So when you say ‘care for your body,’ that care means keeping the skin moisturized and protected so bacteria can’t get in dry or cracked skin or feet. Otherwise you can get cellulitis, and that can be deadly. About 27,000 people a year die from that.
Second, the lymphatic system only moves one way—up. That means blockages or a compromised system can’t move the lymphatic fluid properly, and that’s a big problem! So, care also includes getting the fluid moving through special massage techniques, as well as compression to keep the lymph from settling in the lower limbs where infection can develop.

Manual lymph drainage is necessary (for a person like me who has lipedema and lymphedema as well.) The vascular system and lymphatics are compromised or damaged. Penrose rehab wants me to come in for manual drainage twice a week, but they aren’t sure if our health insurance will cover it. They recommend twice a week for that, and compression garments and bandaging daily, from the time I get up to the time I go to bed (at least 12 hours a day). If insurance doesn’t cover the therapy, then it’s likely I’ll have to try and learn how to do it myself (and I’d prefer an expert with years of training do it instead, if possible.)

Neither conditions can be cured or treated with diuretics or medicine. It will only become more severe. There’s no way to completely stop it. So, no, I will not be completely healthy in this regard, regardless of what I do. I can only hope to delay it from advancing to a more severe stage. It already affects my mobility right now, so I just do the best I can and go from there.

Bruising is common, and these conditions can worsen with activity and warm weather. Vigorous exercise—especially without compression stockings—will exacerbate the problem and make things worse. So, as you can see, these are tricky conditions that become progressively worse. The best hope is to try and manage them as best as possible. I know this is a lot of info, but there’s a lack of knowledge about these conditions, and it’s important (at least for me and others suffering from these conditions) that people are educated and don’t make assumptions or think it’s simply, “Well, lose weight and exercise more.” Nope! If it were only that simple! I can get down to a size 1 and I’d still have it. That’s why one physician I read called it a “rare and devastating disease,” with the psycho-social aspects particularly hard for patients. I was recently diagnosed, but I’m already having issues with it. Having understanding and supportive friends—such as yourself—makes a huge difference for patients dealing with lipedema/lymphedema.

As I said, doctors and researchers don’t know what causes it, but they believe it’s genetic (hereditary) and also hormonal. It cannot be cured, and it’s the same for lymphedema. Both affect your mobility and can result, in severe cases, in being wheelchair-bound or, in the extreme case, amputation of the legs. Because I’ve been pro-active in getting a diagnosis and treatment, I don’t expect the latter two to happen. The person affected must follow meticulous treatment. It’s not something that can be ignored, because you cannot reverse it; it can only get worse. About 11% of women have lipedema, and rarely do men get it (only 2, I believe, from the articles I read from Dr Karen Herbst, who is a doctor in Arizona and an expert in this field). It’s classified as a rare disease, as I mentioned before. For men, almost unheard of!

Paul, sorry I hijacked the thread, but I needed to write this up for my page and my blogs anyway. Might as well explain quite a bit of it now! Thanks for asking, Mari. I went way beyond what you asked, but now you know the gist of it all.”

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