GRRRRRRRRR I HATE LE..........
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GmaFoley I've had that feeling before too a couple of times. Even sometimes when I'm doing my MLD, and/or lay with my arm up, I swear I feel the lymph moving. Kind of weird. And I also have to pee after I have that feeling.
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I dunno' kitty. I'm afraid to try anything new just yet. Have never ever ever had a yeast infection and eat yogurt daily.
I was just getting ready for bed, when my neck started to sting a tad. I looked in the mirror , and I cannot be certain but it looks like a small mosquito bite! Quite possible as my DH opened the back door for a few mins to get dogs in and out before bed. (I am a mosq. MAGNET) I cannot believe all this crap. Whatever this bite/bump is, it is sure to muddy the waters even more. And now I will also have the worry of cellulitis all over again.
Hugz
I have used a free and clear detergent ever since I was DX with lung disease 14 yrs . ago. Thx for all the help in the detective dept. I dont really want a needle (blood draw) right now -ESP. since I am feeling they know nothing.
UGH ....
I HATE lymphedema !
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I no longer swell from the bag that fell..... haaha...
Thats one line done, and three to go
to make a four line poem grow
Carol you tell your story so well ...for
You no longer swell from the bag that fell!!!0 -
MLD and thyroid
Anyone curious to help me figure this little one paragraph out ( I am hyperthyroid and have a goiter)? Wondering if MLD + poblem thyoid = rash there.
So sorry I cannot cut copy the paragraph. It is 82.4 and not long.
THX
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Lessons learned this week:
One hot dog = Swollen arm
over working with no stretching = scapula pain
No sleep -= cranky and depression.
How to fix it:
MLD, stretching, lebed, sleeves, gloves, compression bra/pad and a visit to my LE T.
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burnt LE finger w. curling iron. 1 inch of blisters. grrrrr. using non dominant hand to keyboard today. grrrrrrr. drinking lots of water. elevating, flamazine cream on it. any other ideaz?
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Hugz
I swear by Vitamin E oil for burns. Take Care
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thanks purple
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I always used aloe from my plant on burns or other skin issues that are minor. But then nothing is minor with LE.
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I used fresh alone for my rad burns. slatered it on all day for weeks. i liked it. need to get a plant again.
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Can I just vent, and say I HATE this disease! We are just back from our first flight with my sleeve. I HATED the thing. I was almost in tears with frustration and uncomfortableness! I was constantly worried it would swell as soon as I took the thing off(which it didn't). I have a very mild case, and only wear the sleeve minimally. I feel like such a baby complaining, but I just am so done with it.
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I feel like such a baby complaining,
NEVER feel like a baby !Don't let LE do that to you - it does enough to us. Vent and vent and vent some more. We all understand. It sucks !
(((hugs)))0 -
It seems like everyone's different but it all stinks. For me it is a musical LE I get one thing down the it pops up somewhere else. Anyway, RJ, vent all you want!!!!
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Hello
After almost 1 yr. it seems that my trunkel LE stage 0 is acting up.I have been doing my daily stretches and wearing the bra my PT told me to wear but I'm in pain and Im not sure what to do.And yes it is swollen.Also my PT gave me this huge pad to put inside my bra that I'm also using.
Any suggestions?0 -
Granny, I remember Binney reminding me that pain causes swell, so get the pain in control but it is a viscous cycle because then the swell causes more pain. Drink lots of water, deep (belly) breathing and pain meds is what I do..Have you learned how to do the Lymphatic drainage?? ... I hope this helps... Miss you Granny!
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Thanks GmaF...I do those exercises but lately I have been slacking off.
I do those deep breathing a few times a day..every day.
Just wondering if it could be stress related.
As u know I'm totally stressed out.
I slept last nite with the arm elevated but ended up with this huge headache.
When does this crap end?????
Miss u too.0 -
Stress is like pain - they can both cause swell. Drink lots of water too!!! that also helps with the headaches.. Dehydration is a big factor.. Hope you feel better soon...
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I drink tons of water including coconut water every day.
How do you control the stress?
I tried everything but I'm still very nervous.
Just cannot control it.....
Thanks for tryin to figure this out.
I do have pain killers but I'm weening off the prednisone and I would not want to mix all this along with the Valium I take for the TMJ.
Grrrrrrr.0 -
Granny, summer heat can affect LE. If it's hot out we need to plan out outdoor excursions early in the day or after the sun heads down. Other weather conditions (storms, say) can also affect our LE.
Also consider if you've eaten anything unusually salty lately--ham, pizza, chips, etc.
The trouble with LE flares is that they make the stress even worse--grrrrrrrrrrr!
Hugs,
Binney0 -
Thanks Binney...I don't go out in the summer heat...I'm very alert with this LE.When I first came here I remember someone saying stage 0 is the worst because you really don't worry about it but I really do...I'm on prednisone so I have to stay out of the sun.
The weather has been crazy for quite some time now...why now?
I don't eat any of the above foods either.
I had /have a Huge amount of stress since the beginning of the year.huge.
Why now?
I'm baffled.
did you see the thread relating to allergy????
Could that be the trigger?????
I really thought I was doin a great job with this LE...
Big hug to you for always being there
Xo grannydukes0 -
Can't predisone cause swelling? Could that be part of the issue?
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...I'm on prednisone so ...
and there you have it . Notorious for swelling, granny! Well known SE of pred. even without LE. Can you wean off ? Call your DR.
THE MYSTERY RASH UPDATE
I need your help!You think the bold caps are bad ? I was considering a new thread! <tongue in cheek>
I really need help here , ladies. This rash started getting much lighter for a day or 2. Yesterday it was 95% gone, but the SLIGHTEST thing triggers it. Incl. but not limited to- drs. steroidal RX cream even makes the pink go to red. MLD will surely flare it because just lightly touching it for a few mins does. In any case, it happened to be all but gone on ' pool night', What to do ?>! Hmmm.I went!
Yep- went to that pool last night, showered and put A & D Ointment on neck/chest area as a barrier. I DID go in up to my neck because i want my arms submerged for some resistance. Otherwise, I simply would have went waist high. The pool is low chlorine PLUS salt.OK, after the swim? Rash was GONE- nothing but a memory. I surmised the coldness of the water helped the little tiny bit of whatever 5% was left. Still, showered in cool water and put the OTC cortisone on. I was up for 2 more hours. Checked it good. Just a memory of a nightmare.
Woke 4 hrs later to go to the bathroom. Nice and red again.STILL dont think it was the pool! Nope, I really think it would have turned red in the pool or immediately after the ointment was showered off. Besides, just about anything flares this sucker up.
Had once gotten ' more pink' after Tai Chi. Is exercise flaring it ? Who knows anymore.
The main thing I know for sure is that this darn thing will not allow me to do MLD.GRRRRRRRRR!!!!! (help ?)
*EDITED TO ADD: My own post got me thinking( even more : ) I was upping my exercise when all this began. It may well BE exercise related !http://articles.orlandosentinel.com/2008-09-30/news/hives_1_hives-food-allergy-urticaria Anybosy ever hear of this ? I also took acetaminophen after the pool in case of DOMS. One link said NSAIDS and aspirin etc ... could contribute. Grasping at straws now. Just always seems like anything good for me, makes my issues worse. so odd.
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When I have a hot flash it's often that area that gets hot. More exercise=more heat?? I have no idea if this might be significant in your case Purple but just a thought I'm throwing out there.
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My LE flares with just walking and I have the same chest area rash bumpies since radiation. I just figured it will be sensitive forever. My pain creams the doc gave me for my breast - will turn it red and itchy too if it gets on my chest area. Hydrocortisone cream is the only thing that seems to help on the radiated skin. Its been 2 years in July. LE therapist and I talked about the costochondritis in the sternum/rib area and I just put 2 and 2 together.... I wonder if that has something to do with my rash??? I just never mentioned it Purple... sorry...I've been trying to ignore it until you mentioned yours. Is your chest painful underneath it??? or just the red burning rash?
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So sorry. None of us like this whatsoever. I'm a major fitness and fashion snob by personality. Prior to cancer there was definitely no place for my swollen saggy arm in my world. I prided myself on showing up for road races totally "dialed" and looking hot. It motivated me to live my life in a fun and healthy manner. But now...the sleeve and gauntlet - I must wear them for every race. I feel some level of shame I can't totally control. I did recently when running with peers and superiors on a business trip. I went from being the untouchable powerhouse to feeling like the "weak one." Same goes for my long luscious locks that are no more. BUT, honestly and I do feel this way, as a nurse told me "you can live with it." and she meant literally. It is not cancer. We are alive. I know we all need to complain and it really sucks but I just think focusing on that we don't have cancer is pretty much the way to go with all of this stuff - uneven reconstruction, scars, getting out of shape, etc. I wear x-small in everything and my arm size has impacted my ability to wear clothes that would fit me otherwise. It just is. The good news is that exercise, good eating habits, and self-massage along with compression and elevation do keep mine under control. Another important thing I have found to be critical is no tight bras. Nothing makes my arm swell more than alcohol. 2 glasses of wine and the next morning the swelling is noticably worse. Sorry we are all dealing with this. Underneath my carefully selected stylish shirt today is a beige sleeve - which sticks out under my shirt cuff. But I'm happy to be alive and not going to let this beat me or take my spirit. All I need to do is look to Wounded Warriors who don't have arms and it pretty much makes me totally shut my mouth or any and all lymphedema vanity complaints.
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Marple
I dunno anymore. The exercise I am doing is in chilly chilly water and the rash was gone for HOURS after I got out.
ALSO- its not a chlorine pool, Its salt. So I just looked it up and it says the salt is much much easier on your skin.
I give up.
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Purple, what you need now is to not give up, but start writing down what makes it worse and things that help. Then you just work with what you have.
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Purple, I think Gma's idea is excellent. Keep a "diary" and write down how food / creams / exercise etc affects you with dates and all. Maybe you (with or without the help of professionals) can then figure out what's going on. It must be so frustrating for you, so I hope you'll get to the bottom of it.
Mariasnow - You are 100% correct. We need to vent, but bottomline is that we are alive and we got to keep that in mind and be grateful. Would have loved to not have LE, but then I would have loved not have CA and chemo etc. just like all of us.
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I have 3 siblings who have also had malignant cancer (all of us stage II) and we are all still here! I also have 2 siblings with MS and a dad who died of cancer and a mom with advanced Alzheimer's. We also lived and ate healthy - no smoking in our family or obesity or drinking. I have only one sibling who has not had any serious health issues. In our family we have learned to balance letting eachother complain with getting grateful and helping eachother to do the same. Right now my sister just had her 6th stomach surgery due to post-radiation issues. She can complain ALL she wants for like 2 months (minimum). Then it will be tough love time again and we will start kicking her in the butt a bit. It's just a balance. I actually "perform" better at life when I get grateful and dig myself out than when I feel sorry for myself. But I am also extremely low about all of it at times and really REALLY scared a lot. I tend to look to people who have it worse and are getting the most from their lives for inspiration.
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Purple, this must be so confusing and frustrating for you. I'm hoping you can discover the solution to the mystery. There MUST be a logical reason for the rash. Would you consider returning to your former exercise routine and stay out of the pool for a bit. I'm sure you don't want to give up the pool but maybe just for a short time. If you can get this rash settled down and then slowly introduce things that may have triggered it.
Edit to add~GRRRRRRRRRRR I HATE LE..........
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