New Here

[Ladyhills]

Hi All,
I am new here. Confused, concerned and darn frustrated! One year ago, I blew up like a balloon, going from 119 to 160+, my legs were huge, the skin hurt, I went to my GP and the first thing he did was hand me a Rx for Lasix, well, I took that for 1 year, during the last year I have recurred and remitted but I never got the weight back down, and my legs never were the same.

Two Sundays ago, I wore a pair of tights to church and all of a sudden I had "water" flowing down my legs from the groin and knees and my legs were huge, so I went home, called a friend of mine who is a nurse and found our she has PL, and we discussed what was going on with me, and she suggested that I may have PSL due to surgery. I went to my Rhuematologist and he thinks she is right, gave me a referral to the clinic at the hospital. I have called there two times, left messages and of course no one has called me back.

So, now I am having a pity party. I found some heavy duty compression garments that I had from a previous groin/gastric surgery, boy is this thing heavy! But I hope it will help a bit! I just don't understand why in the h*ll, I already have all of the other things wrong with me (the list is long so I won't bore you)
But how does this happen, why and how do I get rid of it. Because I honestly at this moment do not accept this in my life.
I guess this is not a real good introduction, I really am a nice person, I am just tired of being sick, I was finally getting my pain under control and then I get hit with this once again.
Sorry to be such a sad sack, I promise my next post will be much more jovial.
LadyHills

[Trees]

Hi Ladyhills,
Pity parties are what happens sometimes when we feel alone....
I am "new here" too.. Lymph notes... how cleaver...
I don't have answers, that is why I signed up to the site,today, to see if I could find new information and See other stories that related to mine, because I never met anyone else that had lymphedema... and just to feel like I wasn't alone... and maybe I could get off my duff and look at this "thing" as a work in progress... instead of something a dr told me to Live with. Which is what I have been doing for the past 15 years.



Funny sitting at a computer does not help in the lest.. LOL




trees

[cpthomas]

Dear LadyHils,

I am a physical therapist as well as a lymphedema therapist, and seeing your post I just wanted to touch base with you to offer you some support and see if there is anything I can do to help with the situation you are in.

It sounds as if you may have lymphedema, although of course it is difficult to say for sure without having seen you and without knowing your medical history. It sounds as if your medical team is trying to get you the help you need. Unfortunately, compression alone can not comfortably help with lymphedema. You need to undergo Combined Decongestive Therapy (CDT), which is the combination of massage and compression, in order to first remove the excess fluid that you have...after that, you can wear compressive stockings to MAINTAIN the loss you get. Until you get that initial loss, wearing compression is likely to just make your legs hurt more.

You can find excellent information that covers CDT here on this site, and in addition I would be happy to help with any specific questions you may have. I would also like to help you investigate finding a qualified treatment center or therapist near you. Please feel free to email me directly...you can find a link to email me under my username on the members page.

I'd also like to echo the words of "Trees" in the last post, in that managing lymphedema is absolutely a "work in progress"...it does require ongoing attention, but with the proper tools it becomes easier and easier to maintain...I promise! I have seen the results time and time again...we just need to get you headed in the right direction. I am so glad that you found this site, because here you can get quality information as well as connect with others who are coping with lymphedema. You are not alone!

I hope this post helps a little, and I look forward to helping address any questions you have.

Christine

[Ladyhills]

Thank you to everyone who has taken the time to reply to me via the BB and in private. I really appreciate your time and empathy. My medical history makes me a bit of a puzzle within a conundrum as my Physicians say. In other words, long, complicated and most things fighting one another. Now we get to add one more thing to the house of cards. LOL

I finally have a referral to the Lymphedmea Clinic at the major hospital here in Anchorage, just waiting for a call back for an appointment. In the mean time, I have been pushing fluids, dropped my coffee intake to less than 1 1/2 cups per day, if that, keep my legs up over my heart as much as possible, and when I have to go out which is usually 3 times per week (I try to keep it down to about 4 hours max) I put on my heaviest compression garment, which goes from my mid calf to mid breast and is very heavy, hook and eye closure, zips up and has about 7 inches of heavy duty elastic around my mid section. (This is a two person job, just think of Gone with the Wind, holding onto the bedpost for support and thinking if I did not need you to help me get this blasted corset off, I would have you whipped! Not too CP, so I apologize, but it is the only description I have, so please forgive me.) The rest of the week I am back in bed with my legs up doing as little as possible, but as much as possible via telephone, laptop, fax etc...

My pain levels have really gone up this past week, I am unsure if it from the swelling or what. I think I will contact my pain doctor tomorrow in the AM and see what we can do. It is around 5:30AM here, I have been up for a couple of hours, the pain is so bad, so I have been in a too cool jacuzzi trying to get the swelling down, my feet look like swollen duck feet, and I am oozing liquid, so I have old towels around my legs held on with ace bandages. I am quite the sight for sure! All I need to do is pull out my High School tiara and scepter and I can rule from my bedroom....my own little lymphedema kingdom!

Well, I am going to take my morning meds, to see if I can get some shut eye. I think I need to increase my topamax in the evening. Maybe up the durgesic patch as well for the time being, I will keep you posted on what happens with the pain doc. As well as when I can get into the Lymphedema clinic at the hospital.

Thankyou all again, I really appreciate your kindness.
Sylvia Holan

[joyous66]

I just saw a post from Ladyhill and she is right, about why are we always sick and can't get any better, I am overweight, I have diabetic; RA & OA and other problems and now I have LE.

what is wrong with us - can someone help