I am scared..so scared

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I am scared..so scared

Postby cherie22001 » Sun Jun 08, 2008 3:44 pm

Hi Everyone
I think this is a wonderful forum. I have learnt so much here and hope to learn more. At 55 years of age I am not new to illness and pain but my legs became very swollen about 8 months ago and very heavy and painful. I press them and massage them and they feel like puffy cotton. The doctors have not helped me except to tell me to elevate them, I began 4 hours of excercise a week which helps a bit but is very hard for me. I was measured for suppression stockings a dew days ago and waiting for them to arrive. I am also a juvenile diabetic and terrified that maybe I am losing my legs. Can anyone tell me me if my fears are realistic? I feel like crying all the time because no matter what I do it doesnt go away. Thank you for anything you can tell me. Also near the ankle of one leg the skin is very tight and a bit warm..thank you for any help you can give me....cherie
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Re: I am scared..so scared

Postby patoco » Sun Jun 08, 2008 8:48 pm

Hi Cherie :)

Super welcome to our family here :!: :!: :!:

There are very very few of us that wind up loosing any of our legs. So, don't wear yourself out with that worry now.

I've had lymphedema in my legs for 55 years - still got both of them. My grandmother had LE all her life and passed away at 80 with both legs still there.

What we do need to do though, is get you to a certified lymphedema therapist. These people are especially trained and licensed to treat lymphedema. They would be able to give you an evaluation and set up a treatment program to get the lymphedema under management.

You can locate one close to you using the links and tools on this page:

LYMPHEDEMA THERAPISTS - SCHOOLS OF THERAPY

http://www.lymphedemapeople.com/thesite ... herapy.htm

First, let me give you a few pages to look over.

Leg Lymphedema

http://www.lymphedemapeople.com/wiki/do ... lymphedema

This page is on the standard protocol treament:

MANUAL LYMPHATIC DRAINAGE (MLD) and COMPLEX DECONGESTIVE THERAPY

http://www.lymphedemapeople.com/wiki/do ... herapy_cdt

Is that warm spot tender? Any fever, strange aches? I would watch it very closely and if you start running a temp, or start feeling achy and drained, if it spreads (gets larger), please get to the doctor. One of the biggest risks we face is something called cellulitis:

http://www.lymphedemapeople.com/thesite ... ulitis.htm

This is a bacterial infection that can be quite serious and damages the lymphatic system even more.

You mentioned exercise, swimming is the absolute best exercise there is for us. The gentle pressure of the water against the leg helps move that fluid out - it always amazes me how the swelling goes down from swimming.

Look over these and if you have any questions, please don't hesitate to ask. Remember, your not alone and we are all here for you.

Again, welcome, look over that info and, I look forward to hearing back from you :wink:

Pat
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Re: I am scared..so scared

Postby cherie22001 » Sun Jun 08, 2008 11:33 pm

Dear Pat
What a wonderful person you are and I thank you so much for your reply. I have been seen by an internal specialist and he did not seem concerned. He asked me what I take for pain and I told him that on bad days I take codeine. Sometimes my legs hurt so badly and I feel guilty that I cannot be fun and pleasant to my family. I just cannot. The excercise I do is upper body workouts and walking. The trainer works with people with medical issues and I alwasy feel better afterwards. I was fitted for stockings which will only arrive in 2 weeks. When she measured me she said my lower leg was warm to touch and may be cellulitis. That was the first time I heard that word so I will see the doctor to make sure that I do not need any other meds. I will check out the sites you sent to me and I thank you with all my heart. My skin is as tight as a drum...is that the way it usually is? I use creams and massage my legs all the time. I did have the drainage massage a few times but I found myself feeling a bit ill afterwards, I don't know why. Thank you again for all your help and I will keep reading the posts and the sites you sent to me. cherie
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Posts: 19
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Location: canada

Re: I am scared..so scared

Postby kathyl » Mon Jun 23, 2008 12:29 am

I am 54 years old and have had symptoms of lymphedema in my left leg for 1 year now since my ovarian cancer surgery. I am no stranger to pain either but this lymphedema is uncomfortable and changes every day. I was down about it but I am getting used to it now. I go to Lymphedema therapy at my local hospital once or twice a month, The massages help my leg and keeps the fluid moving so my leg doesn't get so stiff. I suffer from recurring ingrown toenails because my toes swell up. I wear a compression stocking to the groin and it helps so much. I wear open toe because it is summer and I feel more comfortable but closed toe actually keeps my toes from swelling. My left leg is much bigger that my right , especially the ankle, It hurts a lot but I truely am lucky to be alive after cancer so I can't complain. I finally gave away all my high heels and wear crocs and comfortable shoe. Excercise, walking and yoga have helped me so much. When I don't walk my leg feels worse. My doctors really didn't know that much about it so I researched it myself. Don't be scared. You are in good company. I would say if you keep massaging it and wear the stockings you will be ok.
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Re: I am scared..so scared

Postby cherie22001 » Mon Jun 23, 2008 3:17 pm

Dear Kathy
Thank you for your kind reply. I am so happy to hear that you are doing well. We seem to have so much in common with our knowlege of pain and illness. Your attitude is wonderful. I am supposed to get my stockings this week. My doctor advised me against the massages but I would really like to have them. I also a diabetic from a young age (I am 56 today) and I have numbness in my feet which adds to my problems. I am trying to think positive and to do the best I can. I also work out 4 times a week and he is better for me than any doctor ever was as the excercise helps me to feel better. Keep on staying well and thank you again for replying to me. It means so much...cherie
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Location: canada

Re: I am scared..so scared

Postby kathyl » Mon Jun 23, 2008 9:28 pm

Dear Cherie,
I am so sorry to give you incorrect advice about massage. I didn't realize that diabetics should deal with it differently than someone like me who has secondary lymphedema due to cancer. I have burning but not numbness.Well anyway we are still in the same boat. Uncomfortable either way you look at it. I see you are in Canada. It must be cooler than Florida. Atleast that helps. Good luck with the stockings, Kathyl
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Re: I am scared..so scared

Postby patoco » Mon Jun 23, 2008 9:29 pm

Hi Cherie :)

Just wanted to jump in and say a super duper Happy Birthday :D :D :!: :!: :!:

I'm just a few months behind ya :wink:

Pat
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Re: I am scared..so scared

Postby cherie22001 » Mon Jun 23, 2008 10:11 pm

hahahah then you are still a baby Pat...enjoy your childhood a bit more...thanks Pat..birthday is in January...and yours is? cherie
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Location: canada


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