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PostPosted: Sun Jul 27, 2008 3:50 pm
by Pamela
Hi. I am new here. I have had lymphedema in my left arm for 5 years. I had 24 lymph nodes removed due to breast cancer. My breast cancer has not come back and quite honestly, was a piece of cake compared to lymphedema.

I have had therapy 5 different times, the last time being for 9 weeks from Dec of 07 to Feb of 08. I got new garments at that time. I told them I didn't think they fit well, but the two therapists insisted they were to the correct measurements and fit fine. I have them custome made in Germany.

I became very discouraged the other day. My arm hurt and some of my fingers kept falling asleep. Then I got to thinking how everyone talks about how many folks have lymphedema, yet in the past five years I have yet to see even one other person with a sleeve and glove on. I have even spent many hours at a cancer center. I decided to take my garments off and it feels so great I don't ever want to put them back on. I will, because I don't want my arm getting out of control again, but seriously, does anyone else wonder where everyone who has lymphedema is? Do most people just give up and stop wearing garments? Just wondering.

The breast surgeon I had started her own hospital for breast cancer and said they were going to have a lymphedema support group. Two years later and still no group. :(

Re: Garments

PostPosted: Sun Jul 27, 2008 11:21 pm
by patoco
Hey Pamela

Super welcome :!: :!: :!: :)

I think we all get totally frustrated at having to constantly do things day after day after day. LOL...for some of us, decades after decades :roll:

But, the alternatives are worse. So everyday, I put that lotion on, wrap and roll, do what I can do to keep things manageable.

I've actually ran into quite a number of people with lymphedema - even had this guy at work that was temporarily in our office from another location. It's funny too, we were talking one day and it was obvious he was in pain so I ask what was wrong. he started talking about his leg being swollen - and - how his om had that problem and the doctors never culd figure out what was wrong.

OMG.....being the bashful sort, I blurted out, let me see your leg. It was a perfect example of a early stage 3 lymphedema leg. Amazing.

I've ran into people at grocery stores too. Once at a store called Kroger, this guy came in - huge huge guy - and I don't mean obese either. The guy looked like a Dallas Cowboy linebacker. He had bermuda shorts on and his left lag was so swollen. I ask him if anyone had ever said what was wrong with his leg. I was surprised, he did know it was lymphedema, but said his doctor told him there was nothing that could be, I gave hime some names of LE clinics in our area.

The only time I ever ran into someone at a cancer clinic was a couple years ago. I had sat down in my recliner, waiting for chemo to start and this lady comes in. After she had sat down, she says to the nurse "I need to talk to someone about my arm. It's doing these wierd things."

Bingo - she was experiencing some of those early signs of arm LE.

Ya need to give that nurse a nudge on starting a group.

We do have a couple pages that may help with ides too:

How To Start a Lymphedema Support Group ... port_group

How To Plan a Local Lymphedema Event ... dema_event

Pat 8)

Re: Garments

PostPosted: Mon Jul 28, 2008 9:12 pm
by Cassie
Wow, Pamela, I hear you! Where are all these fellow lymphers?! Hding out, most likely. Good for you for hanging in there with the garments. If it's any help, you've encouraged me, at least. :)

Onward anyhow! :D

Re: Garments

PostPosted: Mon Aug 18, 2008 4:00 pm
by Pamela
Thanks Pat and Cassie for your comments. I almost forgot to come back to look to see if anyone responded and then it took me a long time to find the folder I posted on! But I found it and I thank you. I have an appointment on Thurs. to get fitted for new sleeves and gloves and I am hoping that they fit better than my current ones do. I am getting measured by the woman who ownes the store where I order my garments from. She always did the measuring before and I never had problems. The last time I was measured by my therapists and as much as I loved them for therapy, these garments do not fit me properly. They always order me one set first, then have me try them and then if they are OK, they order the second set. Well, the first set didn't feel right to me at all, but my therapist remeasured me and insisted that the correct measurments were given so both sets ended up fitting me poorly. I need to get them custom made from Germany. Anyway, I am psyched to get new garments and hope they fit.

Still kind of bummed that I feel so alone with this condition, but I guess things could be worse.

Re: Garments

PostPosted: Tue Aug 19, 2008 3:45 pm
by Cassie
Hi, Pamela,
Glad you found your way back! I had to grin when I read your post. How nuts are we, getting psyched over new compression garments?!! :D But I too really look forward to getting new ones -- mine get pretty grubby and rasty looking by the time fitting-time rolls around. I sure hope the poor fit hasn't made the LE harder to manage, and I'll look forward with you to your new ones as they make their way across the world to you!

Re: Garments

PostPosted: Wed Jan 07, 2009 8:24 pm
by Pamela
Not sure if anyone will read this.
I did get fitted for new garments in August. The sleeve was tight but after wearing it a number of times I it was OK. The glove on the other hand was way too tight, so much so that it caused my fingers to go numb. It just didn't seem to fit right so I called the place I ordered them from and went in to be measured a second time. They returned my glove to Germany and a few weeks later I got a "new" glove. Problem is, this one was no better than the first. The fingers on my old gloves only went up to the second joint but the new one went up to my finger nails. The wrist is way too small. It hurt when I put it on and cut off my circulation. I tried stretching it out, washing it and stretching it, but nothing worked. I couldn't handle the hassle of going back to get fitted yet another time so I decided to wear my old garments a bit longer. My next fitting would be in February as my insurance pays for two sets twice a year.

Then last Friday I got some upsetting news. The breast surgeon I see for follow up visits is leaving the hospital I go to. There are no other breast surgeons there although they said they are looking for a replacement.

I had such a bad experience with doctors during my breast cancer treatment that I have little trust in doctors. I was devastated that just when I found someone I could trust, she is leaving! Since she is the only doctor I have that understands about lymphedema, I decided to stop wearing the garments.

Surprisingly my arm looks good with no signs of new swelling in the 5 days without garments. I even moved my wedding ring back on to my left hand again and it isn't at all tight.

Yesterday the breast coordinator from the hospital called me. We talked a long time and I told her I took my garments off. She said I should put the back on, that I don't want my arm swelling up again and needing PT again. Truth is, I spent 9 weeks with my arm wrapped the last time I had PT and I don't think I could ever go for PT again. I had 5 sessions of PT, basically once a year, since I got lymphedema.

Even so, I couldn't bring myself to put the garments back on! It feels so great not to wear them! I told the breast coordinator that I have never seen another woman with garments on in the 5 1/2 years since I have had lymphedema. She said that they are out there, but that many don't wear the garments even though they should.

I have a feeling I will need to wear the garments again when the weather gets warm, but as long as I don't see my arm swelling, I am not putting them back on.

I often wonder if people really do have complications from lymphedema and if so, what they are. I once heard one could get cellulitis, but I never had any problems like that. I had times where my arm really swelled up, almost always during the summer months, but my skin never got red and I never developed infection in that arm. Maybe I have just been lucky so far, but I have a feeling that some people are more prone to infection than others.

Anyone here ever take off their garments for a spell?

Re: Garments

PostPosted: Sat Jan 10, 2009 8:28 am
by Pamela
No one need reply to my last comment. Sadly this message board is dead as a doorknob, there just aren't enough people with lymphedema who care to post on a message board. It doesn't matter to me, I can deal with my lymphedema myself, I have for the past 5 1/2 years. I do feel bad for those newly diagnosed, or those who have serious problems and need support. One only needs to look at the main forum page and the dates to see how rarely anyone posts anything here. Too bad. :(

Re: Garments

PostPosted: Fri Jul 24, 2009 11:49 am
by Pamela
Hi everyone, or anyone who reads this. Not sure anyone does, LOL.

Well it has been 7 months since I said good-bye to my lymphedema garments and I have to say I am doing just fine! I know some folks are sensitive to the lymphedema and need garments to keep their conditon under control. Some also get many infections, I am lucky to be neither. I did wonder if I might regret my decision to ditch the garments but I am happy to say I am so glad I did! My arm is no larger than it was the first time I went for therapy 6 years ago. Yes it is larger than my right arm, but not so much that people notice. I think the garments were actually doing more harm then good for me, putting constant pressure on delicate lymph vessels.

Sometimes we need to educate ourselves on our medical conditions, but then apply what we know to OUR bodies. We are all different. Just because I am doing well without garments doesn't mean everyone will, just because some need garments doesn't mean everyone does. We must learn that we, not doctors, are in charge of our own bodies and we should do what we feel is best. I learned to think of doctors the way I think about anyone I go to for a service. I listen to what they say, then I decide what is best to do. I won't ever put so much trust in a doctor that I fail to make my own decisions about my health.

I learned the hard way not to trust doctors unconditionally! Also, I get the REAL reports from any tests I have done now. I don't want the "fluff" reports .....mammogram normal, etc, I want the real radiologist's reports. I keep them in a fireproof box at home. Taking charge of my own health has allowed me to be happier than I have been in 6 years and I might add that this is the first summer since my cancer surgery in July of 03, that I am stress free and enjoying every minute of!

Re: Garments

PostPosted: Wed Mar 24, 2010 1:48 pm
by pammitch
hi pamela i too am called pamela and have lymp in my right hand and forarm. i have the horrible sleeve, i hate and wear it most days but not all day as i cant do any housework, cooking etc unless i wear a plastic glove, and when im cookin i hate that. you are right about nobody talking about lymp, i did originally go on the macmillan site and there were few who posts on there about this condition.. like u say its a dam horrible condition and it is painfull. i go to the clinic, and the nurse is good but she says it shouldnt hurt but it does somtimes and gets really hot and sweaty loverly lol. the fit of the sleeves are not good but i find the one with the hand bit attached to the sleeve is best for me. i think that if i wear it most of the day it keeps the swellin down but i can get no nswellin for a few days and then it flares up, so i just do what i think best. i did get an infection once and went to the docs for antbiotics and that cleared it it was through a tiny cut so skin care need to be watched. hope u get to c this as im not too good at doing posts pammitch