Questions from a new lymphedema sufferer

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Questions from a new lymphedema sufferer

Postby itiswhatitis » Thu Nov 02, 2006 11:50 pm

Hello everyone,

since I have discovered your site, I've spent the last couple of days reading the many suggestions, tips, and help from all your readers. It made me realize that I was stumbling around in the dark. There is so much to know.

My lymphedema is a result from cancer damaging the lymph nodes in my groin and right pelvis area. Anyway, that's where the cancer is, so whatever lymph nodes are in that area are presumed affected.

It started last November, but I didn't realize it. Perhaps because, initially, the symptoms were not that radical -- numbness, just a bit of swelling, not enough to get weirded out over -- but around last April, my right leg balooned to twice the size of my left leg.

Since then, it is still huge, the skin drum-tight, red and tender, tender, tender. It's like my leg is on fire and getting electrocuted at the same time. In the evenings, I get these moments when it seems like the leg is thickening like cement hardening into concrete, and I have to get on my feet and try to move around to "loosen" it up.

It feels like my leg is dying, its circulation slowing down until the toxins simply overwhelm the leg and body.

I take morphine for the cancer, but it isn't having any affect on the pain generated by the edema problem.

I have trouble sitgting or sleeping with my legs up, because it builds up too much pressure, because there's no place for the lymph fluid to go because of the damaged lymph nodes from the cancer. At least that's my experience.

I've wanted to know if there are any remedies that offer relief for this kind of pain. I've tried ice, but worried that the leg was laready sluggish enough to be lowering it's temperature. Same with cool rags. Anyone "out there" have this problem, and if so, have you successfully dealt with it somehow?

Many thanks to all of you for what you've already contributed to this group. I might be a little slow getting back to any of your replies, as I don't always get on the computer every day.

Dale
itiswhatitis
 

Postby silkie » Fri Nov 03, 2006 5:35 am

Hi Dale

When you have any infection you need AB's

the shiny skin pain redness swelling do point to lymphedema and badly ifected to

You need to be reffered to a therapist

Actually you should have been advised of the possibility of lymphedema at your cancer clinic

If you are still in touch with the clinic that might be the best place to contact for help and advice there should be a lymphedema nurse at least there.

If not you need to see your regular doctor for a referal to a therapist

I am sure MLD will help with the swelling and the supports and wrapping can help lots

Print off any information you think might help and take it with you to your doctors many of our members do as some GP's are still unenlightened about lymph


I am sure if this is lymph you will find a therapist and MLD very helpful

Also the removal by MLD of the fluid I have found hels the pain and

done daily once the condition is stable helps us to have a little control over the condition

Hugssssssssssss

lets know how you get on

Silksxxxxxxxxxxxxxxxxx
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Thanks and more

Postby itiswhatitis » Fri Nov 03, 2006 1:51 pm

Silks,

Thanks for your quick reply. It's difficult to know what to include in these posts to give enough information without writing a manuscript. :D

I'm not really in contact with the cancer clinic. This cancer has no cure (and in fact, they won't even try chemo or radiation) except for surgery, which in my situation due to the location of the cancer, offered more problems than solutions. Consequently, I chose to go without surgery rather than bury my family in debt from what would be a very expensive operation and rehab with no certainty that the problem would even be solved.

Is "MLD" an acronym for massage therapy for lymphedema? I see all these acronyms in these posts, but to a newcomer, they aren't always obvious.

Can the MLD actually remove all the edema? Or do they just keep it under control? It would be great to have my leg back -- or at least something that resembles what my leg used to look like!

I have other questions, as well. Is this the appropriate page to ask them?

Thanks again,

Dale
itiswhatitis
 

Postby coyote » Fri Nov 03, 2006 3:35 pm

Hi there,

thought I'd jump in: MLD means manual lymph drainage and is a part of CDT, which is complete decongestive therapy which includes MLD, compression, exercise, diet, etc.

I lost 70 cm total from my calves from having manual lymph drainage and compression wraps...that's the size of a small woman's waist: Yes, it can improve your quality of life by reducing your leg swelling significantly, reduce the incidences of wounds, infection, etc. This all results in less pain.

My concern for you is that you really need to consult with your cancer doctor and make sure that Manual lymph Drainage is okay for you. Since cancer can spread through the lymph nodes/lymph system, you don't want to cause yourself anymore problems than what you already have by doing this treatment. You also want to get any infection under control.

Most people that do manual lymph drainage here in the US are occupational or physical therapists, though some other medical people do to. It is really good to get one that is LANA-certified, if you can. You need a doctor's script to "treat and evaluate" in hand when you go. So, if your doctor isn't aware of a an LE (lymphedema) therapist, contact the OT (occupational) or PT (physical therapy) department of your local hospital and ask if they have any on staff.

In the meantime, you might consider doing regularly some ankle and foot exercises, like ankle circles, write the alphabet out with your big toe, ankle pumps (move foot up and down). This will help increase circulation. I think it has helped me tremendously with the kinds of symptoms you described. I was taught them by a physical therapist.

You do not want your swelling condition to get any worse, it CAN get worse, more painful and fibrotic tissue can form which means you can be even more prone to infection and other forms of pain like peripheral neuropathy (from nerve compression from all of the swelling). Been there, done that: It's not pretty.

I was at risk of losing my legs and my LE therapist said that if I had gone untreated, I would have eventually lost my life, so while I know you have a lot on your plate already with the cancer, I feel it is important that you know how important it is to try to manage this condition. It can rob you of whatever quality of life you have...and you deserve to be as comfortable as possible while you battle your cancer.

This is just my humble lay person's opinion. Consulting your doctor would be the next step.

Ask away here or anywhere else in the forum.....its what it is here for. I'm not here consistently, but silks or Pat O' Connor, the owner of LE People usually are nearby and will reply to your posts.

I wish you luck....and relief!!!!

Julie E
aka coyote
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Postby coyote » Fri Nov 03, 2006 3:40 pm

Dale,

I have a theory...have you tried to sleep on your side, with your legs up? I cannot bear to sleep, even now, on my back because it feels like it cuts off the circulation in my legs and weakens my muscles and builds up pressure in my legs. Of course, I do have CVI (chronic venous insufficiency), too, so that may play a role in it for me.

Just curious.

Julie E.
coyote
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Postby silkie » Fri Nov 03, 2006 4:32 pm

Hi Dale Hi Jules

Always see a doctor and ask there advice Jules

you cancer specialist would be a good place to start as jules said


Im not sure if this article relates to you Dale but its well worth reading

and the link isd to Pub med article



http://www.lymphedemapeople.com/phpBB2/ ... ing+cancer


hope it helps

Hugssssssss

Silksxxxxxxxxxxx
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Thanks to everyone

Postby itiswhatitis » Fri Nov 03, 2006 7:21 pm

Many thanks to everyone's contribution.

Until I started reading this forum, I really had no idea how dangerous this condition is. I don't have a cancer doctor, because I chose to not have surgery, and am working mostly with a GP for pain management. I'm starting to realize that my GP doctor doesn't really understand this illness as well as he probably shoud. He prescribed diuretics, which, it seems, should be avoided, according to what I have read in this forum. Plus, I've described my skin condition and accompanying fever, and he's not seemed overly concerned.

I've been wondering if anyone has used ice and/or cold washcloths to minimize the pain and burning that accompanies this condition. I've been concerned that cold will aggravate the condition, and I've read that heat should be avoided.

I'm not suggesting these in lieu of other therapies -- only because I've used both ice and washcloths for temporary relief when it has occasionally been unbearable, and at the time could have cared less about the long term consequences. I've not used either of late because of my concerns. Mostly, the compression hose provides some relief, but it is not enough.

I am thankful that I stumbled across this forum and appreciate all the posts and help available here.

Thanks again,

Dale
itiswhatitis
 

Postby silkie » Fri Nov 03, 2006 8:17 pm

Hi Again Dale

hot or cold are not good for lymph

check the infections section in the information

All infections need AB's Dale

I actually take one a day to help my emmune system

then if something flares up i increase the dosage this is with consultation with doctor and therapist it was felt i needed to take these precautions

I printed of the lymphedema section MLD and the infections section to

anyone else got any suggestions for Dale as to what to print off to help?


Hugssssssssss

Silksxxxxxxxxxxxxxxx
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Postby XrayGirl » Fri Nov 03, 2006 8:43 pm

Just a wuck question from another fellow newbie..what are AB's???

thaks!
Nancy
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Postby silkie » Sat Nov 04, 2006 12:16 am

Hi Nancy

Godd Qestion Nancy I am Sorry for it took me a while to know the shortening of words

So i should remember how it was for me i will try in future


AB = Anti biotics


Hugsssssssssssssss

Silks xxxxxxxxxxxxxx


i must do a list i'll try get a moment after weekend
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Postby XrayGirl » Sat Nov 04, 2006 9:41 am

Thanks for the prompt reply, Silks! :) Yes, I believe an "explanation of abbreviations" would be a wonderful list to post! I am looking forward to seeing it some day. Don't rush...only do this when you have some extra time (ha ha,...like we ever do!).

also, can you tell me when your chat room is, and how does one get into it? This would be for EST in America!

Hugggsssss back to you!

Nancy
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Postby silkie » Sat Nov 04, 2006 12:14 pm

Hiya Nancy

its on our sister group from here

It is msn They recently stopped all chat rooms but we have managed to get a chat bot in to replace the room

http://gabbly.com/groups.msn.com/LetsTa ... ientsGroup

this is the chat bot we are open Every Sunday Evening from 8pm British time to midnight or after if there are chatters in
I beleive you are 5 hours behind us eastern time

but if you ever need to chat please male me i am on msn aol and yahoo
s i can get on pretty quick most days

the link for the group is slightly different but the chat link will get you in there There are photos to of a few of the members (Pat to )
just hit the picture article on the site or the left hand side
on the main page

take a look round

hugssssssss

Silks xxxxxxxxxxxxx
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Postby Lynora » Sun Nov 05, 2006 7:36 am

Hi everyone
I am a lymphoedema therapist working in Scotland - quick mention about antibiotics..... many of my clients/patients are on daily (long term) antibiotics, due to prolonged and regular bouts of cellulitis - this is definately something worth discussing with your doctors. If any of my people should suffer a 'breakthrough' incidence of cellulitis, then the dosage is upped to around three times normal, for around 10 or 14 days, or until the infection has diminished.

Dale - your MD/GP should be advised to 'read up' on lymphoedema - from the symptoms you describe, it sounds very much like you are suffering with cellulitis. Diuretics are definately NOT the order of the day - they may momentarily reduce lymphoedema, but taken long-term they make the condition far worse, as the swelling is caused by proteins left in the tissue, not fluid (which the diuretics will remove via the venous system) and the lymphoedema can become thick and fibrotic. Hot and cold compresses, are not recommended - you could try draping a cold compress on your forehead, and looking pale and interesting, like a Victorian Lady - you may get sympathy!!!!

MLD (manual lymph drainage) does not promote the spread of metasteses (cancer). The lymph system, in particular individual nodes, will 'hold on' to anything it doesn't understand, but allow lymph fluid to pass for drainage purposes. If MLD did do any harm, we would have been prevented from doing it long ago. The lymph system is completely reliant on muscle pump, arterial 'pump' and breathing to keep in functioning - no one has told any of my clients to stand still, hold their breath or cut off their blood supply - yet!!!!!!

Lynora xx
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Thanks again...

Postby itiswhatitis » Sun Nov 05, 2006 4:48 pm

Thanks for all the help and advice -- again!

Coyote, I can't sleep on my side, because I can't find a way to position my right leg (the worst of the two). The skin is too sensitive to rest against the other leg, or the mattress. I've tried putting a pillow between my legs, but that doesn't work, either. I am most comfortable on my back.

Another question, if anyone could be so kind as to answer it. I don't have anything like the reid sleeve. I've just been using compression hose, which gives me some relief -- enough that I prefer them over nothing.

I typically wear the compression hose from the time I get up until bedtime, but take them off to put skin cream on them, then sleep without the hose (with my legs up). Should I be sleeping WITH the compression hose on?

Thanks,

Dale
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