GRRRRRRRRR I HATE LE..........
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I am just glad you found something like this to help you!
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Purple, Oh my... I just want to give you a big bear hug. A gentle one though ...so as not to squeeze your flareups. My husband will not go to dr unless he has run out of meds and when he went for his problem it took about 5 years of convincing him to go. Sounds like DH needs to elevate but before you leave the house hide all the ace bandages. There is no telling what he may do.
GMA. Interesting report on the oils and benefits. Do keep posting with your experiences.
aunt paula, yup, you sound just like me. My pet peeve in this whole le thing is dressing up pretty for a function and then having to wear the ugly, sinful sleeve. I am hoping on not wearing it this summer to my relatives wedding. I will wear it to the ceremony with my plainer clothing, but when I get into my fancy pantcy dancing dress, I will be ditching it.
Proud, Watch the planting. Gardening is so therepuetic that we tend to forget our LE troubles and get carried away. I try to vary my activity when gardening. 5-10 min per activity. My neighbours must think I am a chicken running without a head on because I move all over my yard dropping unfinished tasks to start others but I have to rotate my tasks if I want to keep LE beast at bay. I am able to stay out for 3-5 hours if I am careful and then I do nothing once I get in the house but rest. If I am prunning little branches with the hand cutters, I only do a few at a time because that is really bad for my LE. Drats.... I just want to do the whole thing at once!
Carol, I was relieved that you found your culprit to your knee mystery. Glad it wasn't meniscus or something else dreadful. Arthritis is no walk in the park either. I take a course of AOR brand curecumin which is very bioavailable and good at tamping down the pain and inflamation of arthritis in my hands and knees. I should be on it every day but I take vitamin breaks every so often. When I go on a high doze it improves my pain within a week or so. It is not Tumeric which people think is helpful but it is the curcumoids which lessens imflamation. Expense brand but well worth it. You cannot get the same effect eating tumeric on your meals.
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Carol, I think I missed your post...........it's not a Bakers cyst??? It's arthritis? I think that would be the lesser of two evils no?0 -
Intriguing!
thx0 -
OK < I confess to a hijack, but there are just not enough posts on the LE TX ACT thread. OTOH, someone is always Grrrrring! about LE here :>)
( me lately )
I hope you will indulge me as I want ppl. to know what I think is important info for all:
I'd just like to make you aware and say thank you to Josh Levin ( from LYMPHEDIVAS) for making a trip to Washington mid-May , 2014 to try and see Congressman R. Neal RE: the LE TX Act.Josh had a great meeting with one of his aides and is very hopeful that the Congressman may come to Spfld. where some of us can gather and try to show our support for the Act.
Kudos to Josh!
PLS VISIT www.lymphedematreatmentact.org
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elevate but before you leave the house hide all the ace bandages. There is no telling what he may do.
THX Hugz...made me LOL!
RE: MLD
OK, here I go again kicking myself !
Rash 95% gone yesterday. I even went so far as to go a meeting with a V neck top on , convinced nobody but me could see the ' shadow' of where the rash was. Really almost all gone.Being back on the forum and reading so many threads, I started thinking back to my "MLD days" before this rash started last spring. I never did like the idea of skipping the MLD. I needed to go to the V neck area to open the terminus and then , several times to 'move fluid' from the left LE arm over to the right. This is the way I was taught.
Since the rash was essentially gone, I decided to do it.
Grrrrr! NOW I remember why I had to stop MLD! Rash flared its ugly head again. I *know* the MLD is what flared it. Why ?
Was it just touching' that <rash> area? Was it massaging a place that released histamines ? Call me stupid, but I don't completely understand. Hate when that happens!!!0 -
Purple, since not doing MLD for a year have you noticed any difference in your LE?0 -
I don't really know, marple!
I'm not very objective about it, and I dont have the 'before " measurements. My husband says no, but sometimes I look and think yes so I guess, IF SO, - not very significant. ( but I do worry about the future)edited to add - here is my LE therapist:
https://www.youtube.com/watch?v=_z6VEPPb_fM0 -
GRRRRRRRR. My right wrist (so-far-unaffected side) is killing me, and the top of my arm might feel a little achy. I'm not sure because I think I am heavily in denial about even the remotest chance it could be LE. My left side and I are battling the last few days with the heat here, so I am hoping that it's just that I've been overcompensating with the right side. I am going to get my OT to measure my right arm again Monday just to be sure, but I really want to live in denial. I had her check my right hand last week because it was hurting, but measurements were fine (same as initial visit).
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I feel your pain. I have been dealing with this for ten years. I wear my sleeve for about 1/2 of the day and I have dealt with it. This year I started weight machines at the gym for upper body strength. I have also done a lot of housework recently. I also spend less than five minutes in the hot tub and in the sauna. I am 65 and I am proud that I have built up my upper body strength. Well this week my hand blew up terribly. It looked horrible. I could not see my knuckles. I called my lymphedema massage therapist and went for a visit. This is what she said. No more hot tub or sauna. This is a small sacrifice. No more upper body machines. This is a real let down for me since I spent the past three months working hard on these machines and have gotten to the point where I really enjoy it. Wear a gauntlet. I tried this ten years ago and HATED IT. I bought one yesterday and find it uncomfortable and it seems to make the situation even worse. I am starting physical therapy at the hospital next week and I will see what they have to say about the size, etc. She also said to wear a UV protection shirt in the sun. I live in NC and love the beach. It is HOT in NC. Hello!!!!! Anyway, my hand is sore and my arm as always feels heavy and slightly weak. I cried this week and I have not done so in a long time. I try to have a positive outlook on life. I am blessed to have survived cancer but like you I resent and hate this condition.
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I really want to live in denial.
Aunt Paula
I daresay we ALL have been there at sime time. We DO undertsnand!
Some ppl. on this forum have achiness or pain in an arm , but no measureable signs of LE so you are doing the right thing by consulting PT. Still, dont overdo on either arm. I still do all the grocery shopping, but I ask for light bags- no big deal.joannc
YIKES...no hot tubs or saunas. ( I miss my hot showers too :>(
Wait a bit on the exercise and may I say, pls use your gantlet. I UNDERSTAND as I wear a GLOVE /ugh) and actually would like to wear a gauntlet...just sayin' LE in the hand is a B**ch. You dont want to have to wear a gloove yr round. There are some pretty gauntlets that match the sleeves at Lymphedivas if you can wear those. Good Luck.
When your therpaist says you are ready to RE start exercise check out the LE EX guidelines on www.stepup-speakout.org for a safer workout.
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Hey Purple, how are you doing?0 -
relatively new to lymphadema and already fed up!!! My hand and fingers swelled about a month ago and up until now I've been up beat and feeling as though I could beat this but now I'm feeling like it is never going to go away. I've been in tears several times this week mostly out of frustration. I just can't seem to figure this thing out. I'm seeing a pt that specializes in lymphadema management 2x/wk. I've been wrapping daily which sometimes helps and sometimes not so much. It has been recommended that I wear a compression sleeve too but this seems to make it worse!! Is this possible??? Any words of wisdom or encouragement would be greatly appreciated. Thanks ladies!!
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ejlj, I feel your frustration in your note. I had worsening of swelling with some wrapping and some garments. It took about 6 months of wrapping and experimentation, nearly a year of experimentation with garments, some episodes of out-and-out rebellion and neglect, mostly persistent and meticulous adherence to MLD, use of Flexitouch, and complete obsession about what I could and could not do, and here is what I finally learned (the hard way, of course!): yes, garments can make things worse. I finally got my fitter to have my custom sleeves relaxed at the wrist and just above the wrist and the hand swelling went down so that I can go without a glove for much of the day. Some nights I get a good wrap if I am wrapping or using the Farrow alternative, some nights I don't get them adjusted just right but things settle down the next day a little. It seems that when I quit beating myself up and obsessing about every little thing, the swelling started to ease up. I still do a little MLD, wear my sleeve daily (something that I swore to my BS that I would NEVER do and that I better not get LE from her surgery!), occasionally go without sleeve & glove and wear a little bling to go out to dinner. I have skipped a night here and there, but usually use bandaging alternatives each night. My forearm is softer and I can see my knuckles most of the time. Probably the fact that I have had progression of the cancer itself has distracted me from the LE more than anything, but it is still frustrating when I want to just go out and garden for hours but limit myself to 10-15 minutes. You are at the beginning of a very steep learning curve, and I hope you love yourself enough to make some mistakes, learn from them, try again, and find something of beauty in each day, something for which you have gratitude. This is not the end of the world (although I certainly thought so initially) and you CAN make it through it. There is a forum for All things Gloves and Sleeves which I will bump for you - lots of good information on it regarding what works and doesn't work for many women.
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hugz, I've been taking curcumin with piperine for two years, and tart cherry juice daily too--both should reduce arthritis-related pain and inflammation, so perhaps I'm lucky that it's not worse.
Purple, mysteriously, an ultrasound found a baker's cyst, but a follow-up MRI did not. But at least no meniscus tear, but I'm finding that the knee is unstable and I can't find equilibrium activity that keeps things in check without turning me into a total couch potato. I DID get the knee exercise DVD you suggested--it arrived yesterday and I didn't work with it today, but definitely tomorrow. Thanks for the great suggestion! And as your you, well I sure hope you figure things out sooner than later!
ejlj, I'm so sorry you've joined our ranks, but I'm glad you found us. LE can feel so random, and most of us bumble around a bit before figuring out what works for us. Some women here find that less compression is better --not zero compression, but light compression. Can you talk to your LE therapist about that?
joannnc, you may find that you can indeed use the upper body machines in the gym--but smartly and aware of certain LE precautions. Here's a link to the exercise document purple mentioned: http://stepup-speakout.org/Handout%20doc%20for%20SUSO-040113.pdf If you can get in touch with your patience gene, it's often possible to work up slowly and in tiny increments when lifting weights. It's actually a very good idea, because one risk factor for LE flare-ups is lifting more than you're accustomed to, which signals stress to the lymphatic system. Weight lifting can help insulate you from the stress response by getting your arm and torso accustomed to hefting more weight. The document I linked to explains more, and it gives specific strategies to help you.
Linda, I always benefit from your perspectives and especially the kindness that infuses your posts. You are always so inspiring!
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Thought I would update you on my acupuncture. - and a Curiosity question:
My neck pain has totally gone at this point. I am a bit stiff in the mornings but as soon as I'm moving, that part is better. I do have more energy, which gets me in trouble, because more activity seems to bring swell easier especially with the warmer weather. Acupuncturist is working on my nerve pain in the breast from the opposing side, but so far it hasn't helped the actual nerve pain in the breast but has helped with the rib pain in the same area. I gave her permission to try the LE side but she said no. (At least someone is watching out for my bad choices
).As for the curiosity question - I was just wondering if any of you all have or have more lipomas than before Cancer/treatments?
Since my cancer treatment (rads), I have had a major growth in fatty cysts (lipomas) all over my body. The acupuncturist gave me a supplement that helps with these lipomas but also should help with the LE... I talked to my PCP about it and she gave me permission to try it we just have to watch my thyroid count as it has iodine from the seaweed and kelp. It's called Lamanaria - 4. I have only taken smaller doses than prescribed to see how my body reacts to it. I have been on it for about 1.5 weeks. So far so good.
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GMA, it sounds like good progress on your pain, for that, so glad for you. Never tried acupuncture but will keep in mind.
Stay better and do not do too much stuff!
Carol, sounds like you are making progress as well.
Me, holding on although my feet are achie and not happy these days. Just tried new shoes but thinking they may go back to the store today
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Hey Marple
I was nearly rash free for several days. Flared out of nowhere yesterday! (It was a nice sunny day and I was out a bit/maybe it is photosensitive?) Wore eucerin sunscreen and was out walking grandgirl down the street back and forth ( 20 mins ?) Not a hot brilliant sun either.
I dunno. It's baaaaack, but I am seeing a derm dr. TOMORROW! Yay----fingers crossed pl.Thanks , Marple!!!!
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GMA
supplement that helps with these lipomas but also should help with the LE..
With LE????!
Did you look at DR GOOGLE?
Tread carefully, my friend! I never play with my thyroid when it cokes to kelp, iodine etc... I would ask my endo dr.
I do not see that helping lipomas of LE, but ??>>>>Carol
I had a v. good friend who had trouble with a baker's cyst. I am going to ask her what relieved it. If I forget and you are interested, pls PM me within the week if you like.
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gmafoleu, who are you seeing, it sounds like we're going to the same place. Peppermint oil and neuro plastics, except I'm going to Eugene
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gmafoleu, who are you seeing, it sounds like we're going to the same place. Peppermint oil and neuro plastics, except I'm going to Eugene
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Nope - I found a wonderful Acupuncturist right in Roseburg.
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Seeing a "NEW" dr. " Rash" flared again yesterday. ugh ugh ugh...must show pic<below>. Sure which I knew how to get smaller pic.
Naturally, rash was 95% gone today whn I got to DR ( but may be 10 x worse 3 days from now ...GRRRR!) Starting to think this has NOTHING to do with LE. I changed strategies and INTENTIONALLY looked for an old dr. - someone who has seen a lot.
He said this is no rash...flushing , pute and simple.
Possibly vascular. He spent over an hr with me and was interrupted by his asst. 2 x.
Ordered bloodwork for mastocytosis , systemic lupus, carcinoids of all differnet kinds
serum tryptase levels , ANA tests for autoimmune diseases and Graves.UGH.
He said we cannot know if the sun truly affects it or if it is the bactrium my PCP gave me but he too wanted to avoid doxycline because tetracycline gave me a rash many yrs ago.
He was perplexed by the pool catalyst and interested in the ' walking/exertion' theory. He was looking through giant books ...... what internet>?!
FINALLY, his asst inssited he leave me and go to the next pt.
Ordered a ton of lab work and will see me in 2 weeks.
Already wrote him a thank you card for spending all that time with me. Almost made me want to cry to think of his generosity and how blown off I have been with 3 mins here and 3 mins there. Kind old soul- last of a dying breed.
Almost hoping he doesnt find out what it is.
Not sure I can deal with it!
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linda and carol...thanks for your great advice!!! I really appreciate it! I'm in better spirits today as my swelling seems to b a bit better. I'm thinking about looking into purchasing a pump...do u think it is worth it?
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Purple, I hope you finally get some answers! What a kind doctor! Well, to you at least, not his waiting patients...but you deserve it after all this time.
GMAFoley, I'm glad you have at least seen some pain improvement. As a hypothy. person, I would be careful with supplements, too.
Here's a grrrrr....I had a colonoscopy yesterday and wore my bad-ass tattoo sleeves. The nurses set to work finding a vein in my foot. One of them asked me if I ever considered getting a port. Hello! Had one for a year! Oh, she says, we really love them here. You can't really see them on your body. Hello! I could see and feel mine! I told her that cancer survivors need to move on and not feel like patients anymore. I wanted to say a lot more...like, so sorry you have to work so hard...would you like to have LE??...just find my f'ing foot vein. I'll get a port when there are no more veins to find. This isn't the first time I have been asked the port question but she kept pushing me, not a good idea. Colonoscopy was fine.
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Jeannie, grrrrrrrrr is right! It's almost as if they think we LIKE foot IVs and blood draws. Last time I had a blood test I got a disgruntled phlebotomist who greeted me with, "Why do you want a blood test in your foot?" I said, "I don't want it in my foot, but I have LE in both arms." I waved my sleeve/gloves around in front of her for emphasis, but she just said, "Well, it won't be accurate, you know -- too far from your heart."
Hello?!!!
At least it's never boring…
Binney0 -
Purple, I think you may have really hit on something, going with an older Dr. It sounds like he may get to the bottom of this. It's hard to not 'fret' about the outcome but maybe it won't be so bad. He sounds really intrigued by this. That's good! He sounds like he wants to solve it. Hang in there. Hugs.
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Well, to you at least, not his waiting patients...but you deserve it after all this time.
hahahhahaha! I read his reviews online before I went, and it said something like:" You may have a long wait, but he will spend just as much time with you when it;s your turn ..." so hopefully, it all works out in the end.
Glad your colonoscopy was ok.
Binney that cracked me up! OH ..you don't "want' it in the foot?! DOH!
The DR I went to today could not imagine I got LE from " just a LX" and SNB. He asked me why I did not allow my BP taken. I told him I dont see the need since it is always low, and if he wanted bloodwork to order a ton <which he did >because he only had one shot at it. He said :" But you can' t get it in the right arm!!"
Right .... until you do! :>)thx marple /hugs
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oh purple,I had that rash all over my body
And
Not the bad boob but the good one,bright red,down my legs and all over my back
Mine was allergy or so they told me
I had many tests and I came up positive for most essential oils.
I'm goin to a holistic dr.on June 4 th..was told by lots of different ppl including a midwife that she will find out why I still get the rash occasionally but I have problems with my stomach.I never thought it had anything to do with stage0 LE...although I. Do take VERY good care of that arm
I see lots of friends here
I do feel ur pain
If I find anything that my interest any of u I will let u no.
Ugggg FireKracker who used to be Grannydukes...
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How come I always end up on a thread with FK..............I too have LE, got another new sleeve, and guess what............does not fit.............got a night garment..called Solaris Redi-wrap......you guessed it.........too short............I am so fed up........this is 2 1/2 years of bullshit.........
Now they are sending me more stuff.......different sizes........we shall see...............it is so depressing..............
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