View Full Version : Does this sound like lymphedema?
Feb 4, 2010, 04:14 AM
Hey everyone. Well, I guess I should tell story.
I used to cross my legs at my desk and I stay at my desk A LOT. 18-20 hours a day when I wasn't in school. I would always press the top of my left foot against a leg of the desk. It just felt comfortable me.
Well in September, the top of this foot began to swell. I got so worried, thinking I had developed a blood clot. I felt my foot go "numb" and it often felt cold. The swelling got worse and I was scared everyday the clot would move. I also got very bad leg cramps at that point.
Eventually, I realized my foot wasn't numb. It was "tight". There was a tight feeling, I guess from it becoming so large. I was so excited to go to sleep everynight cause when I woke up, my foot would be very less swollen (in the beginning it would go away completely).
I figured if it was a blood clot it wouldn't get much better simply because I laid down for 8 hours.
Since then, the swelling has moved to my calf. It's a "pitting" swelling...I can push in and it will stay dented a bit. It's also moved to my other leg, although not near as bad yet.
I'm so scared and don't know what to do. I'm in college full time now, and do not have medical insurance. I'm not eligible for Medicaid. I'm putting this off as long as I can.
It sounds like lymphedema for me, but I wish I could get it checked out.
I know nobody can tell me if I have it, but do these symptoms seem familiar to those of you who do have it?
I never even knew what lyphemdema was until I searched something along the lines of "foot swelling disappears after sleeping". Reading this forum has helped me a lot, and given me hope maybe I have something that can be helped and won't kill me.
Also, diuertics didn't help at all.
I feel great and normal otherwise. I still exercise, and walk around a lot. Having this...whatever it is...has actually improved my health. I got so scared I started eating healthy and drinking lots of water, and exercising more. I've lost weight.
Feb 4, 2010, 06:19 AM
Wow, you've learned alot about lymphedema already. You mentioned being in school. Is there a student health facility? A doctor (as opposed to a specialist) is usually the one who diagnoses lymphedema and getting a diagnosis is a very good idea.
What you are already doing sounds good. Walking, exercising, using the pool, gets the leg muscles moving and this stimulates the movement of excess lymph out of that area -- but the condition won't go away.
Having said all that, I'll settle for one piece of advice. If you develop any sign of infection in that area it is serious and can quickly become very serious. So at the first sign of infection (redness, heat, pain) you need to see a doctor!
It sounds as if you are going all of the right things in a tough situation, and I wish you well.
Feb 4, 2010, 09:45 AM
Hi Sanmari -
You are doing a lot of positive things. Without medical treatment the two key things will be to keep the swelling from getting worse and keep the leg / foot from getting infected as Trish states.
Here are some things you might want to try:
Elevate your leg when you are not using it as much as possible. (For example if you are in the library studying, put your leg up on the chair next to you.) If you can sleep with your leg elevated that will help keep the swelling down.
Stay away from hot tubs or having your leg submersed in hot water for a long period of time. This could make the swelling worse.
Diuertics won't work and I was told are not good because it can leave the proteins in your system. Lemon and parsley are natural diuertics that could be used. I don't know how much they will help though.
Stay away from salt and processed foods and they will worsen the swelling.
Swimming is probably the best excercise because the water provides a natural compression against the skin.
Losing weight will improve the situation ... less pressure on your lower extremities. But be careful of too much exercise because excercise (without compression) could possibly make the swelling worse. Being in school, I realize that you are probably walking a lot on campus and that is ok. Just don't get into any extreme excercise regimes.
I hope this helps and wish you all of the best.
Feb 4, 2010, 10:05 AM
Thanks for the replies. :)
I do low-impact exercising like walking and lifting some weights. I never thought about using the pool, I'll look into it.
My foot/leg usually feels the tightest when I sit at my desk, like I'm doing now. When I'm walking, I can feel the skin start to loosen and I can wiggle my toes more freely. Also, when I elevate my leg I feel as if something "opens up" and I can feel my foot start to throb. As it does that, the swelling goes down and it starts to feel normal.
Originally I thought that was blood flowing, but now I realize it would also make sense for other fluids.
Thank you guys again for responding, it means a lot to me.
Feb 9, 2010, 04:15 PM
Hi Sanmari -
I had some more ideas over the week.
Make sure you don't wear any socks that are tight at the top. This will bind around your leg and cause the area beneath the tight top to swell.
After I shave my legs, I've started wiping my legs down with Witch Hazel. It doesn't sting as much as rubbing alcohol and it helps ensure that you won't get an infection from a shaving nick.
You might want to see if you can find some kind of compression panty hose or stocking right in your local drug store. Just buy whatever the lowest compression is.
Also, L'Eggs used to make a sheer energy pantyhose that actually felt like it had a little bit of compression in them. That might even work for you.
Feb 9, 2010, 05:14 PM
I like your suggestions -- all but one.
You mentioned to buy the cheapest, lightest compression hose possible in the drugstore. My therapist always emphasized the importance of getting a garment that is the right size for me -- and she took lots of measurements to be certain that the size was right. She also stressed the importance of getting a garment that is the correct compression to meet my needs.
So far she has been right!
Jun 18, 2010, 02:18 PM
Hi everyone, I haven't posted in a while. The swelling is getting worse for me (going further up my leg) and I've decided I have to see a Dr. :( I don't have any insurance but I don't qualify for Medcicaid in my state, so I'm not sure what to do.
I just thought I'd include some pictures of my foot/leg. Don't look if you're easily grossed out.
The skin still pits when I push it in, so maybe they can reverse it. I hope. :( The skins getting worse though, dryer and so itchy.
I live in West Virginia and there are no lymphedema specialists that I can see. What Dr. should I visit first? A family Dr? I need to try to find one now. My friend suggested a clinic but I think a clinic would just probably give me diuertics and send me home.
Thank you guys for reading.
Jun 18, 2010, 04:00 PM
I can't provide specific information about your condition; however, here is some information that may help.
Start by visiting a physician. This is necessary because, in order to see a Lymphedema Therapist, you need a written referral from a physician. This referral usually reads ". .. for evaluation and treatment as necessary."
If the doctor cannot suggest a therapist, send an e-mail to ann@lymphnotes and request a list of treatment facilities in West Virginia. This should help you find appropriate treatment.
Ann, from Lymph Notes
Jun 18, 2010, 05:37 PM
Thanks Ann, I may see a family Dr. first. I'm really nervous about it, but I guess it's better than ignoring the problem! :)
Aug 7, 2010, 12:59 AM
So what's the news? have you found out yet?
Aug 12, 2010, 12:57 PM
Well, I ended up going to a free clinic. The Dr. seem baffled at first...my blood pressure was normal, and sugar levels were normal, which I guess ruled out some things which I'm happy about. He eventually said that he thinks it's lymph-edema. :) Which I'm not thrilled about, but at least I have a diagnosis and know what I'm up against.
He referred me to a vascular medicine specialist. I'm not sure if that's the kind of Dr. I need, but I don't think there's a lymphedema specialist in my state. But at least it's a step in the right direction.
I'm really hoping weight loss helps. I've put on a ton of weight in a little over a year, and I think that may have been I got this. I actually have scoliosis too so my left leg is a little shorter than my right, and I shift more weight onto it. It would make since that being so heavy would crush or clog up things.
That's where I was referred to. I go later this month. I don't see anything about lymphedema on there, but I guess I'll find out when I go!
Aug 12, 2010, 01:45 PM
Since you have symptoms that might indicate a condition beyond lymphedema, it is possible that your doctor has referred you to this physician for further evaluation.
I visited the website you posted and I did not find any reference to lymphedema treatment. Two suggestions for you: (1) Telephone the facility and ask if there is a trained lymphedema therapist on the staff. (2) If there is not a lymphedema therapist, ask about the background and training of the physician you are scheduled to see. This may give you some peace of mind --or help you develop a list of questions that you want to ask this specialist.
Ann, from Lymph Notes
Feb 16, 2012, 10:21 PM
What you've described sounds a lot like primary lymphedema. This means you were born with a lymphatic system that doesn't work quite right and the swelling catches up with us in our 20s and 30s.
I was frightened of blood clots too after a dermatologist told me that the spot on my leg was "stasis dermatitis." I googled that and found an article that said 2 kinds of people get that, old people and those with venous insufficiency. So I think a vascular specialist is a good step, but it shouldn't be your last one. Ask your local hospital if they have a lymphedema clinic.
My specialist measured me for something that is open ended and doubles over the foot. They measure my legs all the time and have "graduated" me to bandages. I only wear the bandages at night, and only when I get to bed at a decent hour. Right now I'm sitting at my desk at work with the bio-hose off my leg. They were digging into my foot something awful.
Oh and you may have to fight for the lympho clinic referral. My clueless doc at first said, "That's an option. Of course you'd probably have the mildest case there ..."
Feb 22, 2012, 11:02 AM
Sanmari, I only saw this thread now – your description sounds very much like how my leg lymphedema started and the pictures looks very much like my foot did in the beginning. I have Primary Lymphedema. How are you doing, what's new?
I really do hope you have gotten some help by now, the longer you wait, the worse it can (but might not) get. Please let us know how you are doing.
At www.lymphedemapeople.com you can see a list of lymphedemaspecialists in America.
As mentioned by another, don't do hot tubs if it is Lymphedema! Lots of toxins are set free by the hot water and can make you feel sick or even pass out like I did until I learnt that lymphedema patients should stay below 40°C - some even say 34. For me warm baths doesn't make the swelling worse, infact I feel more circulation when I take Epsom salt baths in warm, not hot, water.
A Lymphscintigraphy [spelling] can determine whether it is Lymphedema.
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