Frustrated with my condition

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Frustrated with my condition

Postby patoco » Thu Apr 01, 2010 8:55 am

**Mgmnt: This was previously posted in an area reserved for administrative use only.**

Frustrated with my condition...
by GingerLee » 31 Mar 2010 02:47 pm

Hi I was diagnosed with primary about two years ago, after going to the hospitol for a staph infection. My doctor thought that I had edema so they had me on a water pill. I have very large legs and have been wrapping just to keep them from getting worse it seems. I have seen a little progress. I have seen a person in the local physical therapy group in our local hospitol, learned how to wrap and massage but now i just feel like Im on my own... I would love to get some help and advice and was wondering if anyone knew any good therapists in the Rochester NY area where I live that may have better training. I feel like there is no one that has alot of knowledge near me and I am so frustrated right now. I am a very heavy girl, and really always have been, but the additional weight of these legs is taking its toll. I now have sleep apnea, and my heart was out of rhythm for which I have to take medicine now. I used to be a person who played sports, and never went to the doctor, and was very active and this takes a big emotional toll on me. I would love to lose weight, but by the time I work(overnights) and clean my house I have no energy for exercise. I want to thank you for listening... Its hard for me to talk about because I am not a complainer usually, and normally otimistic. I also saw on someones post that there is a good clinic in Duluth Georgia, and strange but my brother just moved there two weeks ago. Hope you all have a Good Day! :D
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Re: Frustrated with my condition

Postby pinkbear » Tue Apr 27, 2010 12:35 pm

Hi Ginger,

I too am frustrated by my PLE. I have gone through 36 treatments of MLD last year, wrapping 24/6 for 4 months then to a custom compression garment last July. While my legs are looking good from the knees down and my thighs are more pliable, the fluid has mostly moved into my upper body. I was always small in my upper body and too large in my legs & butt. I also have lipedema to complicate things. :roll:

I began MLD again this year as my insurance allows only limited PT per year. We've been concentrating on my arms as I have become a plus size girl in a short period of time. I was always a small-medium girl and am now XL-1X! And that's my upper body. My lower body was always a 8-10 but now I'm a 18-20! :shock: I hate it!

The MLD just isn't getting my fluid out. It has only moved it. I'm not having trouble breathing, exercising and even just walking. There is concern I may have pulmonary hypertension due to the fluid sqeezing my lungs and the arteries that go to them. It sucks!

I too came here hoping for suggestions and finding someone like me. Is there anyone out there that has had such a difficult time getting the fluid out? My LE specialist is top notch and tells me I"m as compliant as she's ever seen. I just want to get the fluid out of me and then maintain. I'd be happy to go back to a size 14 at this point.

If anyone is like me please, respond. :|
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