GRRRRRRRRR I HATE LE..........
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I am one month out from double mastectomy and L sentinel nodes (4). Having quite a bit of swelling on the left side still and a crap load of throbbing pain into the left arm down to the elbow. My hand and arm have a constant dull throb and my armpits constantly ache. I am switching off between wearing a comp. sleeve and a vest. Both help but the throbbing never really stops. Very hard to maintain happy face when you are in irritating pain all the time.
I am, unfortunately, at the mercy of the VA and waiting for an appointment is like expecting molasses to flow like water. I got my referral for physical therapy and compression garments over a week ago - but had to break down and buy myself a sleeve and a vest ($165 later) just so I could get some sleep. Called the VA and they still haven't "received" the request which is BS. I'm sure its sitting on a desk somewhere collecting coffee stains and dust. I've been doing exercises I found on the internet and am doing lymph massage as best I can on my own. I think I'd pay whatever cash I had to have relief for a day (and a night so I could sleep).
Thanks for the sounding board to complain!!
Hang in there ladies.
Kerrie
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Kake - also recommend this stellar site, created with lots of input & contributions from BCO members. If you decide to pay for at least one visit with a trained therapist, you should be able to get some info here.
https://www.stepup-speakout.org/
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Vargadoll, how are you doing? Anytime there are indications of Inflammation or infection on the LE side the wisest route is to get it seen at once. When you go to ER or urgent care, repeat the words "lymphedema" and "cellulitis" to everyone you see, as they need to be aware of that possibility.
Don't wait!
Binney0 -
Thank you so much Joanne. I will check those titles out.
Peace Sister
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RE: LABS w/ bilateral LE
99% sure I have pancreatitis....possibly from cortisone shot app 3 weeks ago/now worsening.
Went to ER...they want blood!!!!!!!!!!
REFUSED to get from foot as they said I could be diabetic and claimed I'd get diabetic neuroplathy! Dont want that.
Tried VERY hard to bully me, yelling etc ...quite upsetting.
In any case, I was BORDERLINE on last A1c and gusessing cortisone may have pushed me into diabetes.
HELP! They wont help me without blood work. U.S . didnt show much , but US tech said pancreas hides behind the bowel. Symptoms are now severe and quite SIMILAR to my old gallbladder symptoms from 11 yrs ago but they saw no stones.
Also refused chest x ray as they sais they coudl not give me a good reason why they wanted it! ( hello ?)
PLEASE ADVISE.
Thanks so much for always being there.
Im in trouble here,
Laurie
PS Le on the R arm came from a blood draw 2 yrs ago!
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Purple32- so sorry to read your post! There has to be a better way! I'm not much help because I only have LE in one side. I'm sure someone have some good advice! Hope you are feeling better and have some answers for your pain.
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Purple - I live in the city with the 3rd biggest medical center in the nation (or the 2nd depending on who's blowing their horns). Out of 5 or 6 HUGE major research & teaching hospitals, only one place has agreed to do foot draws - the head doc at the Blood Donor & transfusion center. I found him because I cried on the phone any number of times. I expect I could get a foot draw at MD Anderson, but it's like jumping through hoops if you're not already a patient. Anyway - try a major hospital blood donor center.
My friend's husband had a lower GI, then followed up with CT scans w/contrast and a PET/CT to confirm his pancreatic issues. They can also get a hint with a cancer antigen blood test - although a different variety than the BC cancer antigen tests.
It's also difficult to find clinics & hospitals who will do the contrast medium in your foot for the tests. But it can be done.
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cancer antigen blood test - although a different variety than the BC cancer antigen tests.
YEP...but still need the bloodwork! They claim that IF Im diabetic ( NOT UNliklely) it will cause peripheral neuropathy. Dont want that either. TOO risky.HIVES and welts upon waking daily.(Gone overnight!) Bloated belly - Only eating dried toast, tiny amts of benign food . Otherwise I'll have something that *feels like* gallbladder attack,
No good answers.
THX for your reply- very much appreciated.
Laurie
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THX!I actually got the LE on the right FROM a blood draw! ( I had prev broken that arm which was the ' insult" . )
UGH
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Purple32- hope you are feeling better today! LE sure does complicate life!
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Many thanks to all of you...STILL having issues. DAILY hives. Bad swollen belly. Morning edema . VERY LImtedED in foods . SMALL Attacks now and then similar to GB atacks ( mine is out ) but NO stones seen on US .
I dunno but ODLLY enough, all this started within 2 days of a cortsione shot. Before that, my stomach was F I N E :>0( DRs will not get ' creative' on drawing blood
sigh
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Oh yes, IMHO it IS from the cortisine but all of my symptoms easily add up to pancreatitis. AND if you google " can you get pancreatitis from a cortsione shot >" Guess what ? You can!
ALSO...who else has gotten blood drawn from anywhere but the arm and WHERE (on body ) and WHO took it ?The DR at Baystate said she was not qualified to take from groin for example and foot draw no good in case of diabetes. What they hey ? Who can draw ?
Help!THX
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Jo5
My great therapist did VODDER
I think you can find her on youtubeKATHY FLEMING
hth
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New PCP sending me for labs. He took A1 C and said I am just NEAR PRE-diabetes and he cannot imagine why the foot should be an issue- I think they were just trying to scare me into giving my arm!
JUST IN CASE I get someone who has never done it, where in the foot is it generally drawn from please ? ALSO, daily huge hives have caused the need for EpiPen. Need help soon.THX for any reply- anyone.
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They usually draw from the big vein just above my ankle & towards the front of my leg. I expect it will depend on where your best veins lie.
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THX all....hoping to get blood drawn today from foot - will report back just in case it is helpful to anyone else.
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Have any ladies here had the VLNT surgery? If so what were your results? How quickly did you see improvement? I did mine last month and I'm looking for some good news.
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FOLLOW UP on foot draw and Many thanks to all of you.
Just had the foot blood draw.
ADVICE
1. Call ahead and ask of anyone there has experience ( I got a VERY nice lady who had)
2. Maybe take some baby aspirin for a few days prior (daily) as I was wishing I had . ASK your dr if ok.
3. Have your A1C tested prior ( now!) My new PCP did mine in the office as a finger prick to reassure I have no diabetes ( A1C, NOT random glucose)
Soooo, it wasnt bad at all - the initial pinch. She did have a tough time finding a vein and only got app half the blood she wanted, BUT said not to worry becaiuse much is really not needed for each test.
SO glad I got someone who was nice.
HTH someone!
I'll add on from what the OTHERS said and remember the next time to stay hydrated and point the toes! THX to all.
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Purple - I forgot to mention - yes I always call ahead & have a firm appointment.
The doc I use does a small shot of lidocaine (like novocaine at the dentist) before he inserts the needle for the blood draw. No pain at all.
The last time they were having a hard time getting enough blood and I started to 'point & flex" my foot.l As long as I did that, the blood flow was great. The doc said he'll remember that next time.
Mucki - I don't know anyone who has had VLNT, but will in the answers & the discussion.
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Hi purple. Sorry your in another tough patch. I get my foot draw in same place as minus on ankle and also right on top of the foot. Smallest needle is best. I have small viens that run away. We heat the foot up with hot blankets and rub the foot. Also make sure you are hydrated especially if first thing in morn.
Jo how are you doing with LEand family with stroke? Take care.
I can't post much as my extreme dry eye doesn't allow me to read much now.
Edited to add. I’m prediabtic controlled with diet and exercise I do foot but watch for infection and make sure they know that to be clean with me
I always ask for most experienced. Sometimes that works sometimes they claim their good then start fishing around with needle. I give them two strikes then they are out. I only have so many foot veins to play with then it will be neck and no one wants to give you it there. Or if you ask someone from emerg to come to lab or off hospital floor or Dementia ward they are all use to foot draws cause they can’t get at flaying arms.
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Hugz - sorry to hear about your eye. Do you believe it will get better soon?
I never thought about dementia ward nurses. Good idea. For my last surgery, no one in the anesthesia dept of a major hospital was able to start a line. After I said no more, they brought one of the head OR nurses.
Purple - Hugz is right about the needle size. On my last blood draw, I remember the tech saying she planned to use a 'child's size' needle.
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Minus. Thanks for asking about my dry eye disease. I have it a bit control now with many types of spendy drugs and drops. Sheesh I thought le was expensive. This is no cheap hobby, these eyes. Unfortunately it will get worse down the road but I will deal with it one day at a time. On the plus side exercise seems to give me a bit of eye comfort.
I’m so sorry I can’t spend much time reading anymore I do miss your posts and helping when I can. I try to pop in on good eye days.
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Just got stung on my LE arm! I have a small blister and is red around it! What should I do...just watch it ornstart antibiotics?
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Just got stung on my LE arm! I have a small blister and is red around it! What should I do...just watch it ornstart antibiotics?
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Here's what it looks like immediately after it happened. I got straight out of the pool! It was a little black looking bee type bug.
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I am no expert but it looks like you are having an allergic reaction. I would take Benadryl and put cold compresses on it. I wouldn’t be overly worried, but if you are or it gets worse You could at least call your doctor or go to an urgent careOf course I guess it has been hours once you wrote this.
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Mavericksmom- thank you for responding. I am on Tamoxifen and should not take benadryl. The blister is gone now and it's just slightly red. I got stung last year by some little ugly bug and ended up with a bacterial infection. It was horrible! I dont want to do that again!
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You definitely can’t take Benadryl if you are taking Tamoxifen. I checked when I was on Tamoxifen andhad one of my bouts with allergies. I hated they didn’t mix because Benadryl was the only thing that worked for my allergies.
Diane
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You can take Benadryl with Tamoxifen if it is once or twice. Benadryl can lessen the effect of Tamoxifen but only when taken over a long period of time. At least that is my understanding.
You should ask your doctor the next time you have an appointment just in case it happens again
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I think the issue is the LE more than the allergic reaction. Varga - I know you probably have some antibiotics on hand if it gets to cellulitis. I know I always travel with some. But I try really hard not to use them. Be vigilant Varga.
A week ago I was taking pictures out of old picture frames (think 1940s) and got poked twice by tiny, very old nails by the wrist of my LE side. I cleaned w/soap & water, then alcohol, then hydrogen peroxide since one of the punctures was still bleeding. For the next 48 hours I continued to clean twice a day & cover with neosporin. I had a tetanus shot in 2017 so I was clear there. I had unrelated blood work on Wednesday and that doc agreed that if I went to urgent care they would do the same - but of course to watch for red streaks. Puncture wounds have mostly healed but the area has been covered with tiny pustule bumps that really itch. Almost like poison ivy bum but that was impossisble. I couldn't use cortisone due to the open wounds and can't take any OTC antihistamines w/o being totally knocked out. 7 days later, I'm still watching. 1/2 of the bumps are gone. I'm hoping the rest will re-absorb soon.
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