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Topic: What Does Lymphedema Pain Feel Like?

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Apr 20, 2010 10:26AM

CAW wrote:

My arm has been hurting for a few weeks and not getting much better.  It hurts from my shoulder to my hand and I have the full feeling in my armpit with soreness in the top part of my breast for the last couple of weeks.  My Chiropractor says I have a pinched nerve in my shoulder/neck which I don't disagree with because I have had lots of muscle problems in my neck/shoulders areas for years.  I know when he works on a certain area beween my shoulder and shoulder blade, it will send pain down the entire arm (to which he says is from the pinched nerve).  I have no arm swelling but am scared that this could be lymphedema instead of the pinched nerve which is why I would like to find out what lymphedema pain is like.  I've gone on websites to read about it but I always get better answers from the discussion board since the women here have "been there and done that"!  I had posted a few days ago and sorry to post again but I'm getting worried and just looking for answers.  I mentioned it to my surgeon but she didn't seem too concerned.  I also have upcoming dental work for a crown and I've read that dental work can trigger infection/lymphedema.  Geeeez!  Thanks for any help.....

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Posts 1 - 16 (16 total)

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Apr 20, 2010 10:57AM dreamwriter wrote:

Yes I take an antibiotic before dental work.

I have lymphedema... my right arm is twice the size of my left arm.  Yet no one notices unless I point it out and put my hands together. I dont actually have pain in the LE arm.  It is more of a heavy feeling.  You have to drag that extra poundage about.  If you can get it to drain some you may have a little swelling under the arm, just below the armpit (auxilla I think is the medical term for it).  Swelling is a good thing, The fluid can be moved to an area where it will flush out.

Laugh until it really IS funny.

Dx 12/20/2005, 6cm+, Stage IV, Grade 3, 18/18 nodes, mets, ER+/PR+, HER2-
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Apr 20, 2010 11:08AM NatsFan wrote:

Like dream, I didn't have pain in my LE arm, but more like a heavy feeling.  However, when my LE therapist did her initial exam, she also found I had a shoulder impingement in that same shoulder - she said that's not unusual in b/c patients, especially those who have had mx or other extensive surgery as we get in the habit of hunching to minimize pain.  That did give me some shoulder pain, but the pain was from the shoulder impingement, not the LE.

Also, neurogenic thoracic outlet syndrome can cause shoulder/arm pain - it occurs when the nerves that run between the clavicle and the first rib get pinched between the two bones, causing pain.  TOS is not b/c related - I just happen to know about it because my dh was diagnosed with venous TOS last year and needed surgery. Neurogenic TOS usually doesn't require surgery, and proper PT can give a lot of relief. 

As for LE, just to be on the safe side, you may want to get a referral to a qualified LE therapist who can give you a thorough exam.  Even if you don't have LE, the therapist can fit you with a sleeve and can give you info on steps you can take to prevent LE. 

Good luck!

Mary

Dx 12/31/2007, IDC, 2cm, Stage IIb, Grade 3, 1/15 nodes, ER+/PR+, HER2-Surgery 01/30/2008 Mastectomy (Both); Lymph Node Removal: Axillary Lymph Node Dissection (Right); Reconstruction: Tissue expander placement (Both)Chemotherapy 03/04/2008 Adriamycin, Cytoxan, TaxotereHormonal Therapy 07/01/2008 FemaraSurgery 10/09/2008 Reconstruction: DIEP flap (Both)
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Apr 20, 2010 12:12PM CAW wrote:

Thanks for the replies.  I have put a call into my BC Surgeon and hope to hear back from her by tomorrow since today is her surgery day.  Since I had a SNB and 5 nodes removed that were negative during my lumpectomy....does the SNB help to reduce the risk of Lymphedema or am I still just as much at risk?

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Apr 20, 2010 01:00PM NatsFan wrote:

Node removal of any sort disrupts your lymphatic system and the flow of the lymphatic fluids, increasing the risk of LE, so getting checked out is a good idea.  My guess is, however, that the more nodes you have removed, the greater your risk because of the greater disruption to your lymphatic system.  So you  may be at a lesser risk than those of us who needed a full axillary node dissection.  But it never hurts to be prepared - even b/c women with no nodes removed have developed LE, so getting checked out and getting an education from an LE expert is a good thing to do. 

Let us know how it goes!

Mary

Dx 12/31/2007, IDC, 2cm, Stage IIb, Grade 3, 1/15 nodes, ER+/PR+, HER2-Surgery 01/30/2008 Mastectomy (Both); Lymph Node Removal: Axillary Lymph Node Dissection (Right); Reconstruction: Tissue expander placement (Both)Chemotherapy 03/04/2008 Adriamycin, Cytoxan, TaxotereHormonal Therapy 07/01/2008 FemaraSurgery 10/09/2008 Reconstruction: DIEP flap (Both)
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Apr 22, 2010 12:31AM o2bhealthy wrote:

CAW - I would describe my pain as more of a discomfort then pain...like the others, my arm does feel heavy/'full'.  I also have a dull achy feeling with 'pins and needles' sensation, like my arm fell asleep and is starting to wake up.  It's the truncal LE in my breast/back give me the most discomfort (a constant ache, heavy, 'full', burning sensation and occasional shooting pains). I second NatsFan, find a qualified LE therapist who can properly exam you, get baseline measurements, etc... My LE in my arm is sub clinical, stage 0, so there is no obvious swelling but I can definitely feel when I am having a flare up.   

Michelle ~ DCIS and IDC - Thyroid Cancer dx 10-27-10, partial thyroidectomy 11-23-10

Dx 5/15/2009, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR-, HER2+Surgery 06/23/2009 Mastectomy (Both); Reconstruction: Tissue expander placement (Both)Chemotherapy 07/19/2009 Cytoxan, TaxotereTargeted Therapy 07/19/2009 HerceptinSurgery 11/12/2009 Reconstruction: Breast implants (permanent) (Both)Hormonal Therapy 12/01/2009 Tamoxifen
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Apr 22, 2010 11:45AM otter wrote:

Mine is mostly like Michelle's -- it's a dull, aching feeling, with a sense of "fullness" or "heaviness" that's difficult to describe.  Sometimes there is a surprisingly sharp, but not severe, pinprick, kind of like the shooting pains others have mentioned.  I seldom have the pins-and-needles feeling.

My LE "discomfort" is really easy for me to detect.  Nowdays I mostly feel it in my left upper chest wall, where 2 of my 3 sentinel nodes were located and where the mast/SNB drain tubes led and exited my skin. 

Eighteen months ago, I also had "Stage 0" (subclinical) LE in my left hand and forearm.  It was really mild -- not measurable by bioimpedence or tape measure.  But I could feel that same dull ache and "thickness" in the base of my thumb and forefinger, my thumb-web, and back of my hand, as well as in my wrist and forearm.  Look at the new photos of LE that were posted on this forum a few days ago -- I saw some of those changes.

The "discomfort" and mild swelling comes and goes.  I can easily feel it coming on after I do something stupid, like yard work or cleaning or wearing a bra without my lateral Swell Spot.  So, I take action and back off, and it goes away within a few hours or overnight.  Last summer, we spent 2 months camping in Montana, Wyoming, and Colorado, mostly at elevations above 7,500 or 8,000 feet.  I wore my sleeve and glove for the first few days; but then I decided to wean myself off the compression to see what would happen.  I did feel that now-familiar achiness in my arm and chest wall lots of times, but I did MLD and all the other stuff (low salt, lots of water, stay cool, take it easy, don't wear tight clothing, put that sleeve & glove back on for awhile) and the feeling would disappear.  I never did see even the slightest indication of swelling at those times.  So, for me, the sensation of "discomfort" precedes the visible changes.

I am really, really lucky my LE isn't more severe.

otter

Dx IDC, Stage I, Grade 2, 0/3 nodes, ER+/PR-, HER2-
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Apr 22, 2010 05:50PM kcshreve wrote:

For me, my first "sign" of LE was similar to a tourniquet feeling.  Not the tourniquet itself, but how the rest of the arm feels when a tourniquet is being used.  I also felt kind of bruisy.  My armpit felt bruised and looked a little bit puffy.  Same with the side of my chest.  Once I started MLD, that discomfort was relieved.  My measurements comparing the arms are very similar.

Bilat NS DIEP Jan 2010, LE Mar 2010

Dx 12/2009, DCIS, 2cm, Stage 0, Grade 1, 0/7 nodes, ER+/PR+
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Apr 22, 2010 08:53PM Binney4 wrote:

KC, your tourniquet description is great.

You sound good, KC!Kiss
Binney

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Apr 23, 2010 12:06AM kcshreve wrote:

I give you more experienced ones a lot of credit in my being seen very soon, since you are helping me to understand this condition more.  I was able to sort through a lot of the descriptions, etc, and determined I needed to be seen around 4 weeks post-surgery.  I imagine getting MLD started this early was a good thing. 

I had my Stage 2 yesterday, wore my sleeves up till the time of surgery, then gave them to my dh.  I wore them once out of recovery and into the evening, then I've mostly just elevated since then.  I had one MLD treatment today while still in the hospital.

I've told them both arms are off limits, but every single nurse on every single shift has challenged me in protecting my "good" left arm.  They really want to get to my blood pressure in my arm, rather than my calf.

Without you more experienced ones, I'd not know of my need to be protective.So, thank you! 

Bilat NS DIEP Jan 2010, LE Mar 2010

Dx 12/2009, DCIS, 2cm, Stage 0, Grade 1, 0/7 nodes, ER+/PR+
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Apr 23, 2010 08:08AM, edited Apr 23, 2010 08:10AM by kira

KSchreve, I'm so glad the surgery went well! Too bad you have to fight the nurses.

Just FYI--I'm affiliated with a hospital system that includes a women's hospital, where I had my surgery, and when I go on-line to check on results, an info sheet comes up about the patients, and in bold pink letters there is a category for "Restricted extremity"--just noticed it yesterday, and am so glad it's official.

Hoping for a smooth and rapid recovery.

Kira 

For me, LE pain feels tight, achy and just sore. I can see it--the area is "whiter"--my LE therapist calls her sister in law's severely LE leg, "the dolls leg" because all that lymph makes it white and waxy looking. It's subtle and it shows up and reminds me to be careful. 

Knowledge is the antidote to fear, Ralph Waldo Emerson

Dx 5/10/2008, IDC, 1cm, Stage Ib, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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May 1, 2010 07:30PM CAW wrote:

Thanks for all the replies.....I haven't been able to get anyone to really take me serious.  Becauce of the complaints that I've had regarding the pain in my arm/armpit....I've had a couple of Dr's feel in my armpit to check the lymph nodes but they say they don't feel any swollen nodes.  I feel like I have a ball in my armpit and my arm aches and it weaker than the other.  When I or the Dr. presses on certain areas of the armpit and around the breast, it will about send me through the roof....it is a burning & shocking sensation.  I finally went to my oncologist yesterday and he has put me on Keflex for 10 days.  What confuses me is that he looked at both arms and did a measurement on my hurting arm and said he believes I do have a mild case of LE because there was a small amount of swelling but he said he didn't think I needed to do anything about it since it was mild.  I'm also dealing with a separate issue of a neck problem and pinched nerve so it is very difficult for me to know what is causing the pain in the arm.  The pinched nerve is causing tingling & pain down the arm but I don't know if the heaviness/tiredness is coming from LE or the pinched nerve.  I have had these symptoms for a month now and again..... with nobody really taking me serious!  Is Mild LE reversible and do you ladies with the experience recommend I get in to see a LE specialist soon?  Thanks again for all your help!

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May 1, 2010 10:28PM o2bhealthy wrote:

CAW - Yes, see a LE specialist the sooner the better...it is always better to seek treatment sooner to better manage the LE and hopefully keep it from getting worse.

Best wishes!

Michelle ~ DCIS and IDC - Thyroid Cancer dx 10-27-10, partial thyroidectomy 11-23-10

Dx 5/15/2009, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR-, HER2+Surgery 06/23/2009 Mastectomy (Both); Reconstruction: Tissue expander placement (Both)Chemotherapy 07/19/2009 Cytoxan, TaxotereTargeted Therapy 07/19/2009 HerceptinSurgery 11/12/2009 Reconstruction: Breast implants (permanent) (Both)Hormonal Therapy 12/01/2009 Tamoxifen
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May 1, 2010 10:30PM kcshreve wrote:

I got NO relief until I started MLD with a therapist.  If you can find a good one, they can help you sort through the issues, plus they can assist you in getting some relief, if your discomfort is LE related.  Nodes should not be swollen with LE, since the swelling and extra fluid is between the cells.  It won't show up on an ultrasound, either.  It's fluid which is sitting there, which would normally be picked up by the tiny lymph capillaries, but they are not as good as before, so the fluid just sits there.  A therapist can show you a couple techniques for moving that fluid over to an area which has better functioning capillaries, which then can reduce the swelling discomfort - - IF it is related to LE.

Bilat NS DIEP Jan 2010, LE Mar 2010

Dx 12/2009, DCIS, 2cm, Stage 0, Grade 1, 0/7 nodes, ER+/PR+
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May 2, 2010 01:00PM CAW wrote:

Thanks for that info.  kcshreve.....with you saying that nodes should not be swollen with LE, I think that's been the problem with the Dr.s that I've talked to.  When I tell them of the pain & tenderness plus the fullness feeling, they palpate the nodes and say....."there's no swelling so don't think there's anything to be concerned with"!  How frustrating this can be!  I'm making an appt tomorrow to see a LE Specialist.  The ladies on this board are much more informative than the Dr's......I guess because of "Been there done that"!!!!!  Thanks again.....

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May 2, 2010 06:13PM kcshreve wrote:

Doctors get about 15 minutes of exposure to the lymphatic system in medical school.  LE has no meds, so the pharmaceutical companies aren't involved. The world of therapists is who deals with this, so docs truly have no idea.

Bilat NS DIEP Jan 2010, LE Mar 2010

Dx 12/2009, DCIS, 2cm, Stage 0, Grade 1, 0/7 nodes, ER+/PR+
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May 11, 2010 07:55PM Meggy wrote:

Forget doctors....unless they happen to have lymphedema like my oncologist.  The rest are idiots.  Just get a referral to a lymphedma therapist out of them.  I've had a doctor tell me there is no such thing as truncal lymphedema...ya right.

Triple Negative IDC Neoadjuvant chemo 2/08 of 4 dosedense A/C then 4 Taxol, Bilat 6/08, then 2 more AC, then 4 Carbo/Taxotere Node Positive (5+) exact number unknown due to neoadjuvant chemo, then Rads

Dx 1/9/2008, IDC, 2cm, Stage IIIa, Grade 3, ER-/PR-, HER2-Dx Chemotherapy 02/02/2008 Adriamycin, Cytoxan, TaxolSurgery 05/10/2008 Mastectomy (Right); Prophylactic Mastectomy (Left)Chemotherapy 06/04/2008 Adriamycin, carboplatin, Cytoxan, TaxotereRadiation Therapy 09/10/2008 External