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Side affects from Lymphedema

PostPosted: Wed Jun 21, 2006 6:37 pm
by patoco
Side affects from Lymphedema

Lymphedema People


Original Post by Joy 09/28/2004

Hi all, Yesterday I was reading a post that Silk had on telling us that we would have gas and I thank her for that now I am asking the wise ones that had this thing longer than use new people (new family members) could you please tell us what else we can expect to get or what really to look at for?????????????






Where do you want to start Everything changes from what you're used to. Anywhere skin touches skin is prone to infection. Any even small scratch/scrape takes forever to heal. Skin itself will feel different: dry,
scally, bumpy, lumpy. Hard underlying fibrosis as LE progresses. You'll swell for no apparent reason, in places you didn't know could swell! You'll develop a very distinct body odor-almost skunk-like-because of the toxins in your system. Urine can develop same odor. Be prepared for a change in you bowels, also, as it progresses-looser/smelly, with gas! Make sure you wear shoes that hold your foot more securely-I haven't been able to wear sandles for years. If I do, I pay with more swelling, and the exposure to infection is just not worth it.

You'll need to take extremely careful care of eyes/teeth/hygiene. My hair even got much thinner as LE has progressed. Be careful around cats. I love them, but one tiny scratch took 5 months to heal-scar still gets inflamed when my legs are bad.

Joyous, I could continue, but I hope you get the idea. Our life is just plain different than other peoples' life. That doesn't mean it's all bad! Just different. We made a game of it for a lot of years. Who could find the latest stange thing about Mom first!

My kids grew up saying "Be careful of Mom's legs", total fear that something would happen and we'd spend weeks trying to get them to heal. Not much fun, but they love me anyway-GO FIGURE! {lease feel free to ask about ANYTHING you can think of, we'll all be willing to answer, if we can.

Just remember, we're not DRS, so these are our experiences-not everyone gets exactly the same things the same way. I have 55 yrs of exerience, but I've learned a great deal from Pat, and the rest of you, my Family.

Keep on keepping on, OK

sadly/gladly anonymous


Hey Joy

Sadly/Gladly summoned up much of it. This stuff can affect your whole body system and how it functions

I would add that the three most problematic side affects are:

The infections that seem to be always hitting us and seem to never go away. The leaking wounds that are so hard to heal. The pain - for me non stop. The fibrosis (tissue hardening) that leads to further infections and complications. Here's also a list from our article.


1. Infections such as cellulitis, lymphangitis, erysipelas. This is due not only to the large accumulation of fluid, but it is well documented that lymphodemous limbs are localized immuno-deficient.

2. Draining wounds that leak lymphorrea which is very caustic to surrounding skin tissue and acts as a port of entry for infections.

3. Increased pain as a result of the compression of nerves usually caused by the development of fibrosis and increased build up of fluids.

4. Loss of Function due to the swelling and limb changes.

5. Depression - Psychological coping as a result of the disfigurement and debilitating effect of lymphedema.

6. Deep venous thrombosis again as a result of the pressure of the swelling and fibrosis against the vascular system. Also, can happen as a result of cellulitis, lymphangitis and infections.

7. Sepsis, Gangrene are possibilities as a result of the infections.

8. Possible amputation of the limb.

9. Pleural effusions may result if the lymphatics in the abdomen or chest are to overwhelmed to clear the lung cavity of fluids.

10. Skin complications such as splitting, plaques, susceptibility to fungus and bacterial infections.

11. Chronic localized inflammations.

12. Angiosarcoma, a cancer of the soft tissues

13. Lymphangiosarcoma which is a rapidly progressive, non curable cancer of long term lymphedema patients.

14. Lymphoma, new research indicates a possibility of this with hereditary lymphedema. I have been diagnosed with two forms of lymphoma.

15. Septic arthritis

Not so good news But if we know what to expect, we can head off trouble by learnign to recognize the complications and deal with them early.

Also with new research being done, I am hopful the the list of complications go down... evenone day finding a cure for this nasty condition.



For further information:

Lymphedema Complications ... ations.htm