Wednesday, May 25, 2011

Complications of Lymphedema

As I have said before, there are good days and bad with Lymphedema. On occasion, there are not just bad days but bad weeks. It becomes frustrating and then disappointing as you feel attacked by the Lymphedema-as though it is taking over all aspects of your life due to the both physical and mental problems it can cause.

I felt like I was getting back to the old me before the Lymphedema about a few weeks ago. I was doing 4 miles at the gym on the elliptical and walking on the treadmill and I was weight lifting. I was at the gym 4 times a week and loved it. My leg started to feel much better. Then what seemed to come out of nowhere, my hip, abdomen, and thigh became incredibly swollen that sitting was painful and I was walking with a limp again. The Lymphedema seemed to take over my life last week. Pain set in and by Friday, I was exhausted from the pain that could not be alleviated with IB Profen. I wasn't myself because I was so tired and in so much pain. I was irritable and no matter what I did; elevate, MLD, etc. the pain and swelling would not minimize.

Today, I feel better but went to the doctor to get checked out. I may have an infection but it may be something else so I am getting prepared for another witch hunt as I am referred form doctor to doctor as each scratch their head at my condition. It took nearly a year to get a correct diagnosis for Lymphedema but now that I have the diagnosis, when a complication arises, they still don't know. There is just too much that doctors don't know about Lymphedema and the complications that occur as a result of the condition.

I try to stay optimistic about it all because honestly there is no choice, I cannot choose to wake up tomorrow and not have Lymphedema. The swelling, discomfort, pain, complications, tiredness, limited physical ability etc. will be with me for a lifetime. So I could either whine about it or just ignore it and that usually works. Usually. But as I felt worthless over the weekend, tired and in pain, unable to do the things I usually do on weekends, I spent the time lying in bed and on the couch and I absolutely hate wasting my weekends like that.

I am not even sure what is the point of this post other than to say how frustrating and upsetting it is to have this condition and that sometimes are harder than others. I am just hoping that whatever is wrong with me will improve soon so I can get back to feeling like myself again.


Kelsi said...


I am a 25 year old who was "diagnosed" with lymphedema when I was around 22. Ok, So i haven't officially been "diagnosed" but you know how that process goes. Years of doctors, bills, questions, repetivie story telling, and a freaking swollen leg/ankle later this is the response I get.. "you'll just have to live with it." Most horrid words of my life. I feel your pain. I am the most self concious with this disease that I feel the more I exercise the more it would go away, not the case. I'd love to talk to you more about methods you're using to help reduce the swelling. I'm tired of people asking why my ankle looks like that, or why I don't like to wear certain shoes or shorts. Suggestions? I need help!!

Lindsay Nichols said...

Hi Kelsi!

You sound just like I did. It took forever to get that darn diagnosis and lots of doctors scratching their heads referring me to other doctors...

It sounds like you may not have had treatment yet for your leg which is imperative. I would speak with a doctor about seeing a licensed and specially trained physical or occupational therapist for treatment. They will teach you so much like how to wrap your leg to improve the swelling and minimize fibrosis, how to massage your leg manually etc. Let me know if you have had this already but if not, let's try to find you a group that your insurance accepts and are trained to treat Lymphedema. Doctors can be really cold about Lymphedema and I think that comes from ignorance on the severity of the condition. Sure, it isn’t life threatening but if you don’t get correct treatment, you could lose your limb and develop a cancer associated with the condition so in a way, it is a bigger deal than doctors let on. There needs to be more research and awareness in the medical community about the condition, how to treat it and not just by individuals taking care of it, but actual medical treatment that could cure the condition.

Exercise is super tricky with Lymphedema. At first I thought it was a lose, lose situation. If you do too much on your leg with exercise, the swelling will no doubt increase. If you do too little, your leg swelling will increase in addition to muscle atrophy and limited mobility (i.e. you won't be able to move as well as you used to--it will be stiff, possibly cause you to limp). The key is to being able to read your body and incorporate exercise at a pace that your leg and body can adjust to. Start small with exercise like walking a mile outside, on the treadmill or doing a mile on the elliptical. Make sure you have the right shoes that are not too tight and offer a lot of support. Then gradually build up your exercise based on how you feel. I would be happy to let you know my workout plan and how I have progressed. I was afraid of leaving my email before but I don’t think my blog gets that many hits…lol. I think the exercise should be based on the individual and how they are feeling that day. We all have good days and bad with Lymphedema and some days I can 4 miles, even more and others, I am struggling to get to that 2 mile mark.

And the self-esteem issues, I get you there 100%. I was so embarrassed when it started getting so bad. People, rude people would ask “what’s wrong with your leg?” They didn’t mean it in a bad way but I didn’t really want to get into the whole, I have a medical condition/disability and I look like a swollen weirdo. I think learning how to dress for your swelling is key and most of all, acceptance is huge. I would have temper tantrums trying to fit into my skinny jeans to go out but that wasn’t really the best clothing option for me so once I started wearing trouser pants, I felt better about how I looked and felt. We may never be able to wear cute jean short, skirts and mini dresses but we can still look good and be comfortable in our own skin.

Anonymous said...

Honestly, I think the older you get the easier it gets in some ways..people in the community seem to take it easy with their rude questions and stares. Maybe this is because there is a societal rule to not openly judge the clothing of the old (haha) or because it is expected that aged have health problems? Whatever it is, I'm thankful for this phenomenon. Kelsi, if you get a diagnoses, great! In the meantime, get into compression garments and search out the internet - even the library - for lymphedema research. There are lots of things you need to do that doctors apparently haven't told you about... You can do it!