questions about lymphedema

[mickeym]

For any who might be able to answer, or direct me toward answers.

If you have lymphedema, who diagnosed it? Do I need to see a specialist, or start with my PCP?

If it was a specialist, what sort of specialist?

If you've been dx'd, are you receiving treatment? What kind of treatment, and by whom? Have you noticed an improvement in the swelling? Has it worsened?

I've been doing some reading on lymphedema, and a lot of the articles have talked about pain management/control -- and I was puzzled at first, because what pain? Except lately, probably in the last month or so, I've noticed some recurring pain in the area where the swelling is the worst (about midway between my groin and my knee). The swelling has increased, as well, which I'm pretty sure is NOT a good thing.

So. Any suggestions, information, advice anyone might care to offer, please feel free :) And if you're not comfortable discussing it in comments, feel free to PM me or email me at ohmickeym at gmail dot com.

Comments

[leighm.livejournal.com]

How do you know it's lymphedema?

[mickeym.livejournal.com]

Well I don't, per se. But there's definitely abnormal swelling/fluid retention -- more so than anywhere else in my legs or feet. My right leg/thigh is nearly twice the size of my left, and the skin feels... different. Heavier, thicker, something like that. So there's definitely something going on. I'm just not sure where/how to start, with figuring it out.

[leighm.livejournal.com]

Is it red? I wonder if you don't have some cellulitis. Hmmm.

Yes, I agree with you having your PCP to check it out.

Also, see my email I just sent you. My thoughts are similar to the person below me. Possible DVT? Lymphedema is indicative of something abnormal.

[umbo.livejournal.com]

Anything that could cause symptoms like lymphedema isn't something to mess around with. Could be venous insufficiency, cellulitis (although that would likely hurt), etc., as well as lymphedema. Where I've heard most about lymphedema is after breast cancer/mastectomy. I'd definitely see your PCP, and soon.

*hugs*

ETA: And it could also be from a DVT, and that's definitely not something to mess around with. If the swelling is getting worse and you're having pain, it's probably time to go to urgent care at the least.

*more hugs*

[mickeym.livejournal.com]

Well, I do have some pain. And back earlier in the year there was a part of the area that was hot(ter) to the touch than the rest of the leg, almost like a localized fever. And then it stopped being so hot. I still have pitting, if I press anywhere on the area, and now I'm thinking about it, Trish gave me some antibiotics to take, for a possible infection...and I don't think I did. I'd just finished up antibx for a sinus infection and just. Didn't. Argh.

What is a DVT?

I'll call her office Monday morning; I can probably get in to see her either that afternoon, or Tuesday morning. I really don't want to do the Urgent Care, because that's a $75 copay, whereas just seeing Trish is $20 and much more affordable. Especially if I'm going to have to end up buying meds.

[umbo.livejournal.com]

A DVT is a deep vein thrombosis, or a blood clot. It's really dangerous because if it comes loose it can travel to your lungs (pulmonary embolism), heart (myocardial infarction) or brain (stroke). Can you call the office and talk to whoever's on call to get authorized to go to urgent care or ER?

ETA: Also, if it's an infection, it could turn into cellulitis and then get into the blood. Seriously, I am concerned!

*tons of hugs*

[leighm.livejournal.com]

Sounds like cellulitis. The skin can get hot, red and a thickening appearance. I agree...get it checked out soon.

[mickeym.livejournal.com]

I'll stay off my feet and keep them up for the duration of the weekend, and I'll call Trish first thing Monday morning, and get in to see her.

[mickeym.livejournal.com]

I'm not going to go to the ER, because that would turn into a replay of last month, trying to keep Matthew calm (which in turn stresses ME out) and figure out what to do with him, etc. But I will stay off my feet this weekend, keep my legs up, and call Trish first thing Monday morning, okay?

*hugs you lots*

[umbo.livejournal.com]

I understand that you're concerned about Matthew, but please know I am concerned about you first and foremost. Please, if it gets even a little bit worse, go to the ER. I paypaled you a little to help out with the co-pay.

[mickeym.livejournal.com]

If it gets worse, I promise I'll go to the ER. Mostly it seems to hurt after I've been sitting a while, with more fluid building up everywhere. I'm in bed right now, off my feet, and with my feet NOT hanging down, and there's no pain or anything.

[janissa11.livejournal.com]

Babe, you know I've had lymphedema ever since the surgery, right? Email me? *fierce hugs*

[rainbow.livejournal.com]

Re worries about possible infection, there are a couple non-toxic things you can eat to help prevent that until you can get in to see Trish: garlic (chopped, raw, let it sit 10 minutes after chopping before washing it down with water or eating it on something; don't cook it) and turmeric (it has a strong taste but girding your loins to drink 1 tsp in a cup of warm water ever 4 hours really makes a huge difference). Turmeric is also excellent as an antiinflammatory (I ahve chronic low level inflammation from autoimmune issues; turmeric 3/day makes a HUGE difference in functionality and pain)

And afaik neither will cause side effects unless you're alelrgic to them, but both will target bacteria.

(I buy turmeric from the bulk section -- lots cheaper than in a little bottle when one takes 3 tsp/day.)

If you can, I'd avoid processed foods til you've seen Trish, since the pure sodium in them can cause increased fluid issues. And eat foods that are good sources of potassium (raisins, fresh apricots, meat/fish/poultry, melons, oranges, prunes, rasp and blackberries, carrots, peaches, pears, squash, sweet potatoes). I'd avoid caffeine, too.

*fierce hugs*

[turps33.livejournal.com]

I've got bad lymphedema in both lower legs. It was a nurse at my doctors who first suggested it was that and I got referred to the lympedema nurse specialist after that. I see her every 6 months or so just for skin care as they're unwilling to do active treatment just yet as it would mean pushing fluid into my body which could affect my heart, a bad thing when I was so heavy. Fingers crossed they'll start treatment next appointment after dropping weight.

If you want to know more feel free to email/ask, I've dealt with this for a long time.

[tealin.livejournal.com]

You haven't mentioned anything else about this. Is it any better? (Sorry for the late response and sending hugs your way.)