GRRRRRRRRR I HATE LE..........
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THX Marple.
That's my concern of course. Lasted all summer long and off and on flared last time. Too " mind consuming" for sure. Will be calling DRS today.
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Good morning Purple. If it's pool/exercise related, you've only gone once. Maybe it won't be as bad this time. When you said you stopped MLD, did you do so because it made it worse?
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Marple
Yes, it seemed to . If you think about it , the rash is right where you begin: opening the terminus area. I stopped the MLD thinking it would be gone soon, and I would resume. I never did. You have to keep going across that area and y skin was very compromised. Even over the winter, when the rash was gone, I could still see ' the shadow' of where it was (VERY subtle) and my skin was different there... lines.
I have done QIgong since then, and for me, I feel it is my " Lebed"., Up until this, my LE pretty much seemed to be in check.
I exercised only the lower body which I only began in FEB 2014 due to my patella femoral syndrome ( knees misaligned) It started as PT and progressed to ' fast walking" in the house by DVD and there was no * noticeable* impact on my LE.
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UPDATE RE THIS May 1, 2014 post :
http://www.strengthandcourage.net/dvd/testimonials.aspx
On the website, The DR who helped develop the PAL program promotes this DVD. Fine.
I looked at testimonials for the DVD,and this one really bothered me :
“Even though, lumpectomy patients don't need to worry about their arm, research based evidence tells us, all breast cancer patients should exercise to decrease the chance of recurrence. I have not received any negative comments about the DVD. Usually it is very appreciated. Thank you so much for providing these CDs for my patients.”
-Lee Ann Dobson,Clinical Coordinator, West Penn Allegheny Health System==============================================================
I was sent a very nice email thanking me for pointing the error out, and I was told they immediately removed this misinformation for their website.
Good for them!
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Purple, I am no doctor but I have a red rash on my chest and elsewhere that comes and goes. It was Dx'd as excema by my Derm. When the redness goes, it sometimes leaves a rough area with lines. Just putting it out there, not sure it relates.
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Thanks, Jeannie.
I am pretty sure I uncovered the cause ! I believe it is that COLD pool with my low BP and poor circulation as well as the load on lymphatics. I found a site on the web that described it to a "T"! I cut, copied and pasted----must go back and find link.
Before I found the site, I called the PCP office and asked for an anti B because my skin is compromised and I have lE.
Pharm. just called and said he ordered me Doxycycline
Have any of you ever taken this ? Any comments , please ?
I DO have keflex on hand in case of cellulitis ( RX by an onco dr app 1 yr ago, but I dont see the need.)
Many thanks!Here it is ! It's right on webmd! http://en.wikipedia.org/wiki/Urticaria SEE CAPTION:
Cold-induced Further information: Chronic cold urticaria
To add to that, I found this on rosacea (what it now looks just like, on my chest as my GYN DR said today!) another site:
Excess fluid and proteins
leak out of the blood vessels and eventually overwhelm the lymphatic system
that cannot drain the leakage away fast enough. This results in fluid buildup
in the facial skin.I hope this may help someone else who has low BP, poor circulation.
It IS that cold pool with MY circulation, low BP, and lymphatic system...now to find a derm dr. who is willing to treat in accordance with the internet (UGH)
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Purple!!!!!!!!!! OMG, well, that IS good news. Great news. I can't believe the mystery is solved. Hugs galore. Chocolate for everyone, on the house. My DH gets cold urticarial but he doesn't have LE. It does present with welt like things.
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Purple, Wow...When I saw the pic of your chest I couldn't believe it. Its true a pic is worth a thousand words. It is just so awesome that you found the culprit. I really do think that we know our bodies better than our docs and doctor google is pretty good to. Of course to have a MD confirm and treat it is the best and final phase for you. Now you won't be tearing your hair in frustration and can go out and treat yourself. Flowers? Yummies.... anything to celebrate the dreaded rash unveiling!
Hum my non le sis has reynauds and low bp and use to welt up. Interesting.
I wonder what a 86 degree plus pool would do to you? That is pretty warm. Once you get rid of the dang rash you maybe scared to ever dip in again.
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See below regarding possible relief. I have bee using acupuncture now for six weeks (hot flashes) and it has been the only true relief I have found in five years. I am convenience my doctor /acupuncturist is a genius. To say I was skeptical was a profound understatement. He didn't say "I think acupuncture can help with you" he said, "I know this will help you" I seriously thought he maybe a bit crazy. Well..... I can tell you he was right. I don't suffer from lymphedema, but if I did I would certainly give acupuncture a try. My medical insurance paid for some of it.....
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Lissee i think this study was questionable to many, but the acupuncturist didn't use needles on the LE side.
BUT I started with an acupuncturist 2 weeks ago for nerve damage/pain in the breast from rads. So far she has avoided the main LE side (i'm bilateral). I think this week she is going to try a few points on that side. We shall see.
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to have a MD confirm and treat it is the best and final phase for you.
Now things may get tricky!Drs. are delicare creatures and often don't like hints or suggestions.
I can promise you this- pools are totally crossed off my list of things I can still do ... along with about a dozen others :>(
Never even heard of this before Marple! I too have Raynauds as well.
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RE: ACUPUNCTURE
I tried it last yr. for frozen shoulder - never thouht I would let anyone pin prick me with LE ! I told him left side was totally OFF LIMITS. I must say it did not help at all. Many yrs , ago though, I had it for my knee app 1 yr after I broke it and it helped TREMENDOUSLY. I think it may have something to do w/ indiv. practioner. Not sure.
In any case, I will say it did my LE side no harm at all, but I never let him anywhere near ' that side" Be careful and
good luck!
As for the link, I must say .............I personally WOULD try that for LE ... AT MEM . SLOAN *with* an acupuncturist specifically trained to do this. I hope they continue studies , and if it does help, I sure hope we get some well trained acupuncturists. Then, the battle will only be our INS!
The bottom of that article reads :
"Dr. Cassileth cautions patients who might seek acupuncture for lymphedema on their own. “Because of the potential for complications,” she concludes, “it’s important that acupuncture treatment is received only from licensed practitioners who are also specifically trained to work with cancer patients.”0 -
ACUPUNCTURE again.
I looked up that study . Looks like they are now conducting a larger one In NY , NY.To get the opposing view, peek at :
I have to say, there was one thing that this person said that bothered me a lot : " Why even bother ..." ( Was refferring to a small decrease in LE) Hmmm... thank Goodness someone is bothering! I will take a small decrease rather than an increase any day. Which one of you would not ?
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Agreed
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Doxycycline
Is an antibiotic in the tetracycline family. Do use sunscreen if going outside. You are more prone to burn while taking it. I find it hard on the stomach. It's my Dr.'s new favorite one to use since I am now allergic to three classes of antibiotics. Thanks Chemo.
I have Raynord's...a warn bath or being in the sun makes me splotchy red. Never thought about it being from the poor circulation. Just try to take a very quick shower and an occasional hot bath since it does make me swell.
Glad you figured it out.
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Doxycycline
Is an antibiotic in the tetracycline family.
Thx kittyI called my DR since tetracycline gave me arash many yrs ago. Thats all I need is a rash on a rash
! He called in some bactrium.Many thanks.
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Update: One full week on meds (another 7 days to go) and I'm doing well. That "2nd outbreak" area didn't get any larger, still not sure why it came out 2 days later. Arm getting better - slowly but surely. Each day sees improvement. I'm not used to the "slow and steady" healing. I'm very lucky that up to now, I've healed quickly from anything thrown at me. A humbling experience!
Thank you so much for your answers to my questions. I won't be following this particular thread, but wish all of you healthy lives for years to come.
Hugs sistahs.
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Just an FYI Purple - my acupuncturist is working on my pain from the non LE side. It is also the opposite side from the pain. I have no clue how this is going to work, but we are trying it. She said there was no need to chance going to the LE side. I think she must know something about LE..
I'm glad you found out what that antibiotic was before you took it!
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Gma, glad to hear you have a new plan and hoping it all works out for you, you do deserve some calm in your life~
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She said there was no need to chance going to the LE side. I think she must know something about LE.
Let's hope so :>)You are wise and caitious ...just keep being both. Dont let anyone do anything to you that raises a red flag. Even yesterday at my GYN office , I did not let them take my BP which is always very low anyhow. They debated me and finally, I said : " What will you do if it is 80/50?" (nothing) Nurse said
" Well, we would want to know .' ( not a good enough reason)
Then they just wanted to finger prick for iron. I said : " That's ok. My iron has been fine since I went thru meno,. age 41." She was upset and said :" Do you want me to write 'patient refused' on these lines ? I said : " Patient declined would be okay. Thank you."
The DR didnt seem to care, but if he had - I wouldnt have.Dont let her put needles on your LE side if you are not feeling ok about it. I *personally* would not, but .............. I'm, cautious, as you saw with that anti B :>)
"Welted hives' now look far worse and like a third degree burn spreading. Following same course it took last yr. ugh.0 -
Glad I replied Purple. I hope you aren't allergic to sulfur because that is what you have now. I can't take that one either. My child says it is nasty on the tummy. Hope something calms it down soon.
I had a scare this past week. I was clipping dog nails and my dog got me good on my chest. Two days later it started itching bad and a little red. I made hubby look at it good. Redness did go down later on that day and we could see something bit me but it scared me being it was where the dog scratched me.
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me but it scared me being it was where the dog scratched me.
Yep- that was the worse thing all last summer/ worrying that rash would break or get scratched, get a bug bite etc .. Felt like I wanted a bubble- only I didnt .
I've taken the bactrium before...just dont know if it would prevent cellulitis and I dont know if my DR knows either ! THAT'S the scary part of LE. Okay, there are lots of scary parts :>) !
Take Care !0 -
As much as I feared cellulitis before I'm even more scared of it now as I seem to be allergic or have a terrible reaction to any antibiotic I've been on. My fear of antibiotics is right up there on the scale.
Purple, I hope the bactrium does the trick AND it very well might not be cellulitis anyway.
Kitty, good to hear the dog scratch/bug bite event turned out ok.
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You are wise and cautious ...just keep being both. Dont let anyone do anything to you that raises a red flag.
I tell you, when I have this constant nerve pain, I am at the point my Red Flag doesn't seem to fly as well as it did in the beginning. I gave the acupuncturist permission to do the LE side yesterday, but she won't. I guess her red flag was flying higher than mine. The ribs, do feel better today but the "shooting pain" in the breast seems to be enhanced? Maybe because she has taken some of the other pain away? I am not as strong in my beliefs [of no acupuncture on the LE side] as I was in the beginning.
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I suspect constant pain can trump thoughts of caution.
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Wow, I'm allergic to most antibiotics, too, which includes antibiotic creams. I always felt alone in this, so although I'm sorry some of you share this, it does help to know I'm not alone. Yes, cellulitis is mucho scary to think about since I can't take much. I do know that I tolerated the big gun, vancomycin, during reconstruction surgery. Of course, that could change at any time. I just put that fear in a box and sit on it so it can't pop out! I do have an antibiotic cream, mupiricin (sp?) for hangnails, cuts, etc. that works for me.
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Marple is right, GMA ...PLS be careful.I wanted to exercise sooo badly , I went into that pool even though I felt it had " soemthing" to do with this horrible rash. It made no sense though because I didnt think it could be a localized chlorine reaction, but even still , I went with heart instead of my head.
On anothert note, do any of you take singulair ? My DR is prescribing ( for the rash!) I have taken before (yrs ago-for cold) with no issues, BUT not since LE.
So I have googled, but I ask you- anyone know of any issues ar all with LE and singulair ?
I also asked him for areferal to Boston for my low low BP issues P.O.T.S. and he said he will get me one. Not sure what they can do since most remedies involves (LOTS) of salt and water, but my feet are like 2 ice blocks, I'm dizzy and my heat is on in May!
THX or any advice on the singulair!0 -
Purple, I have taken it for my asthma - it is a steroid. Edit: Steroids seem to make me gain weight but I have no clue about swell.
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I have taken singulair since 2002, since after my first sinus surgery. I take it at night ands consider it a requirement for my breathing! Steroid, guess so but asthma needs meds to be stabilized and I have always felt it the lesser of the devils.
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Yes, Proudtospin. Breathing seems to be a necessity doesn't it
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Just as an FYI - Singulair is not a steroid, but good to know nobody has noticed any impact on LE!
http://www.merck.com/product/usa/pi_circulars/s/si...THX
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