Need advice, freaking out.

leg pain, leg bleeding, Farrow Wraps, Compression Stockings, cold feet, Reid Sleeve, Restless Leg Syndrome, Leg Cramps, Compression Pumps, Shoes, lower limb lymphedema, secondary leg lymphedema, leg wrapping, Cold Feet, Compression socks, nerve pain, self leg massage, right leg lymphedema

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Need advice, freaking out.

Postby kymchi » Tue Dec 04, 2012 2:47 am

I've posted here before but I'm still no closer to finding help then I was two years when I got diagnosed. I'm sitting here crying and just about hyperventilating so I feel the need to get it all out.

So two years ago is when I was originally diagnosed. I had these open wounds on my legs that wouldn't heal and would leak fluid. I went to my family doctor and he at the time referred me to a wound care center. I went there, that's where they first mentioned lymphedema. They got my wounds healed and referred me to a physical therapist. I went through the normal I guess 8 week treatment, she got me a lymphedema pump and sort of sent me on my way.

Fast forward to this summer, I start having severe pain in my right leg and it blew up. Later I found out I gained 8" in circumference in my leg. It turned out to be cellulitis and after almost two weeks of oral antibiotics I was checked into the hospital and spent 3 days getting IV antibiotics. After that my family doctor sent me for another round of physical therapy. My physical therapist through all of this has been concerned because they never figured out why I have lymphedema as severe as I do. I've had blood tests, sonograms, ct scans, and everything has come back fine. My family doctor found a specialist in Philadelphia which is about a two hour drive from me which at this point I was willing to do anything. I take a day off work, I drive the two hours to the city, I spend 16$ on tolls and 25$ for parking and a 40$ co-pay for a specialist who says yeah you need to be wrapped all the time. NO REALLY OMG I'M SO GLAD YOU WERE THE FIRST FREAKING DOCTOR TO MENTION THAT. If I was able to stay wrapped two years ago I wouldn't be where I am today. Since I can't wrap my own leg, that hasn't really been an option for me.

Throughout all of this I've always wondered why no one has gotten me a compression garment. I've always been under the impression that my legs are too big for compression garments. My legs are so huge that at this point I no longer have ankles. My legs literally hang down over my foot and touch the ground. I've been confined to flip-flops for the last year or so. If you know anything about Pennsylvania winters you can imagine how awful this is. I can post pictures if anyone is interested or if anyone thinks it'll help give them an idea of what I'm going through. I just don't know what to do. I'm 28 years old and my mobility and independence is seriously in jeopardy. I'm scared and I honestly don't know what to do at this point. I've done everything, I've spent tons of money between all the doctors and the hospital stay, and I'm worse then I was when this all started. I feel like I'm getting sicker by the day. Not to mention the probably 100 or so pounds I've gained on my already over weight body since I can barely walk at this point. The pain I endure day after day is almost too much to take.

Sorry if this seems incoherent. It's almost 2am, and I haven't been sleeping well. Between the pain and how heavily this weighs on my mind I haven't been sleeping well. On top of all this I just saw a garment that looks like it would be perfect for me and then I saw the almost 2,000$ price tag that went along with ONE and realized that I'd need two and that it would probably never happen. Anyway if anyone has any advice or anything that I can do so I don't end up immobile it'll be appreciated. Thank you.
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Re: Need advice, freaking out.

Postby blubrdfrend » Sun Dec 09, 2012 4:06 pm

Kymchi, I am so sorry to hear about your ordeal. It sounds like a nightmare. I am not familiar with PA so I am no help there. I am in Texas and physician's who treat LE are rare in my area. Pat will be back on soon and will probably be able to help you locate some help. The percentage of people with LE is small so that people in the medical field do not treat it. We do have access to more information than we did years ago. I don't know if it will help you, but raising the foot of your bed may help. I try to keep my leg propped on pillows at night. Unfortunately when I go to sleep, I turn over and down goes the leg. If I can keep it up all night I seem to do better the next day. I am uncomfortable during the day but sometimes miserable at night. I guess it is quiet and night and I am not distracted. Don't get discouraged yet. The person that will be most helpful to your condition is you. You will be the one to search for information. You will be the one that knows what works and what is a waste of time. Let us know how you are doing.
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Re: Need advice, freaking out.

Postby patoco » Mon Dec 10, 2012 12:11 pm

Hi Kymchi

For some reason I thought I had responded to a post from you so I didn't respond to this one. My deepest apologies for such a dumb oversight.

While it is good to know why you have lymphedema like you do, right now, the most important thing is what can you do to somehow get some relief. I have nothing but frustration and anger at that moron that called themselves a therapist for NOT getting some type of compression wrap or garment for you. Even wrapping with short stretch bandages would have been a help.

Now, there are even compression products that act like bandages but are not nearly as difficult to put on as the wrap is. I also find the wrap horribly difficult because of severe breathing issues.

Also, this therapist must not even be certified to treat lymphedema. I have seen legs so huge, yo would say "it is impossible to get them smaller" - then a good therapist gets a hold of them and makes them look like a different set of legs. It can be done through manual decongestive therapy.

What was the name of the doctor you went to? What was their specialty?

Also, have you had a lymphoscintigraphy done?

I don't know if you have read our page on leg lymphedema, yet, but it may help with more information as well:

Leg Lymphedema ... lymphedema

Let start with this and see what we can do.

BTW, one thing you will find is that cellulitis does further damage to the lymphatics which will in turn cause worse swelling. I used to get that stuff non stop, but didn't after I was put on a preventative antibiotic regime.

Lymphedema Cellulitis ... ulitis.htm

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