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Topic: pain in shoulder, arm, hand and numbness

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

Posted on: May 8, 2009 12:17AM

gandl wrote:

I don't know whether I should be asking about this here or on the hormonal treatment topic because I'm not sure what's going on.  It's been over a year since my bilateral mastectomy and four months since I started arimidex.  About two weeks ago I started having pain in basically the upper right quadrant of my torso, chest, shoulder and entire arm after doing some moderately heavy cleaning.  I take tramadol for arthritis and neurontin that helps with pain also. I had to add tylenol and advil to those two meds in order to be able to sleep.  My fingers hurt so bad that I could barely get the bottles open.  It is on the side where I had breast cancer and six lymph nodes removed.  I have carpal tunnel on that side also, but this pain was a lot more than I have with the arthritis  and carpal tunnel.  My fingers have been really stiff in the morning also which is unusual.   When I had several nights in a row with having to get up with the pain, I decided that the arimidex might be contributing to the problem.  I have had knee pain and weakness and general joint pain on the arimidex.  I stopped taking the arimidex a week ago and started wearing a brace on my wrist to bed at night.  This has helped some.  Tonight I'm having pain under my scapula and numbness of my ring finger.  The finger has been numb for three days now.  I went for a massage yesterday in hopes that it would help.  She asked me if I had lymphedema, and I said "not that I know of". She said, "Oh, you would know."  While she was doing the massage she had me do some deep breathing.  The deep breathing made my arm go numb but nothing else. The other thing I came across that matched my symptoms was a problem in the nerve area of the brachial plexus.  I don't know why I would have a problem with that, but the pain and numbness matched up.  I read something Binney said that made me think that edema in my arm could cause some of the nerve type problems also.  I would appreciate any insight you have. Thanks.

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May 8, 2009 10:17AM Binney4 wrote:

Good morning, Gandl,

I'm really sorry for all the suffering you're going through, and the confusion on top of it. The comment about "you would know" if you had lymphedema may be misleading -- in its early stages it's subtle and impossible to "eyeball," and many of us were clueless (or our doctors were, which doesn't help either!) It does sound like you may have more than one thing going on here (Arimidex being one of them), but it should still be possible to sort this out. If your doctors have already ruled out other causes for your symptoms (like blood clots or mets), then do ask one of them to give you a referral to a well-trained lymphedema therapists for an evaluation. Not a bad idea in any case, but in your situation s/he should be able to give you some answers and very likely some pain relief as well. Here's a page about how to find a fully-trained therapist near you:

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

 Please let us know what you discover. ((((Hugs)))) and prayers for clear answers and a quick fix,
Binney

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May 8, 2009 10:46AM Member_of_the_Club wrote:

The numbness in your arm merits a call to the doctor today.  It could be all sorts of things but you should try to find out.  Also pain that wakes you up at night needs to be attended to as well.

Dx 9/30/2004, IDC, 3cm, Stage IIb, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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May 8, 2009 10:49PM gandl wrote:

Thanks for your advice.  I called and made an appointment with my PCP for Monday.  Maybe I'll be better by then.  I hope.  I'll let you know what happens.

gandl multicentric 6 ILC tumors, extensive LCIS, isolated tumor cells in 1 of 6 nodes, bilat mx 2-13-08, arimidex & actonel 2-21-09, switched to aromasin 8-20-09

Dx 1/28/2008, ILC, <1cm, Stage Ia, 0/6 nodes, ER+/PR+, HER2-
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May 11, 2009 11:38AM gandl wrote:

Well, I went to my PCP this morning.    She was really in a hurry.  She said that my weight was up, my blood pressure was up, my presentation of arm pain wasn't typical, here's a higher dose of blood pressure medicine, try celebrex for the pain, see me in 5 weeks, maybe you'll need a nerve conduction study.  It took just about as long for her to say that as it did for you to read it.  I think today she was my PP not PCP (primary physician without the care).

So I took my prescription for celebrex to the pharmacy and they said that my insurance requires pre-approval for it .  They will have to have my doctor contact the insurance company and have me check back in a few days.  So I guess my solution for now must be to try to lose weight. (??)

I'm back to maybe it will just get better.  I guess it will have to.  It probably will.  I'm kind of bummed right now. 

gandl multicentric 6 ILC tumors, extensive LCIS, isolated tumor cells in 1 of 6 nodes, bilat mx 2-13-08, arimidex & actonel 2-21-09, switched to aromasin 8-20-09

Dx 1/28/2008, ILC, <1cm, Stage Ia, 0/6 nodes, ER+/PR+, HER2-
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May 11, 2009 11:49AM Member_of_the_Club wrote:

Do you have an oncologist?  I think its worth touching base with your onc and maybe you'll get more TLC.  You deserve better.

Dx 9/30/2004, IDC, 3cm, Stage IIb, Grade 2, 1/17 nodes, ER+/PR+, HER2-
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May 11, 2009 04:19PM kira wrote:

Gandl,

  Sounds like your PCP didn't have the time or the understanding--I agree that talking to the onc makes sense, as armidex can cause pain, and the prescribing doctor may understand it better, and also should know that you stopped it.

  A neurologist may be called for here, as this may be neuropathy.

  I also think an evaluation for LE wouldn't be a bad thing.

  I'm not a big fan of celebrex: it hit the market with vioxx, and it's claim to fame was less stomach upset, and that hasn't really panned out, and it's "sister" drugs--vioxx and bextra have been pulled off the market. Also, it causes fluid retention. Generic naprosyn would be the safest as far as cardiac side effects, and all the non-steroidals have kidney issues, and stomach issues.

  If you search the hormone forum, you'll find lots of women reporting joint and nerve pain with the AI's--dizziness too. 

  I have no personal experience with arimidex--I'm on tamoxifen, but I second the motion to call your onc.

Kira 

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 11, 2009 10:29PM gandl wrote:

Thanks ladies.  I have an appointment with the onc on 5/28.  Kira, I really did not know about celebrex side effects, especially the fluid retention part. Since I didn't get it today I will have time to read up on it some more. 

gandl multicentric 6 ILC tumors, extensive LCIS, isolated tumor cells in 1 of 6 nodes, bilat mx 2-13-08, arimidex & actonel 2-21-09, switched to aromasin 8-20-09

Dx 1/28/2008, ILC, <1cm, Stage Ia, 0/6 nodes, ER+/PR+, HER2-
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May 12, 2009 08:48AM kira wrote:

Gandl,

  The cox-2 inhibitors were marketed as causing less stomach problems, but 2/3 are now off the market. Also, celebrex is based on sulfa, and can cause rashes.

I found this on the internet

http://www.rxlist.com/celebrex-drug.htm

Buried in that is the mention of fluid retention

Also:

Fluid retention and edema. Celebrex should be used with caution in patients with fluid retention or heart failure (5.3, 17.6). 

http://www.drugs.com/pro/celebrex.html 

My MIL is a 30+ year survivor of bc, and did have LE early on after her radical mastectomy: a few years ago she was put on celebrex, and experienced massive edema in her legs as well as arms--just stopping the drug made it all go away.

I looked at the hormone thread, and so many women report the kind of pain you're experiencing.

I hope you discuss it with your onc. on 5/28

Kira 

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 28, 2009 01:34AM gandl wrote:

Hello ladies, I saw my onc today.  She was concerned that the pain hasn't completely gone away since I have been off the arimidex for about a month now.  She also told me that I should not have stopped taking the actonel. So I will start taking it again tomorrow. She said that my problems could be because of my osteoarthritis, but she wanted to check a bone scan.  While I was getting that scheduled her nurse came out and said to also scedule me for a CT of the abdomen.  I was trying to figure out why she had ordered that when it occurred to me that liver pain can be referred to the right shoulder blade.  I had a CT last fall that showed a 5 cm cavernous hemangioma and a 9mm lesion that was either an atypical hemangioma or a metastatic lesion.  When I saw her in February she didn't seem at all concerned and didn't think the CT needed to be followed up.  I guess maybe she changed her mind.  Anyway, the bone scan is June 8th and the CT is the 15th.  I'm glad she's checking things out, but getting scanned again is making me nervous. Just thought I'd update you. gandl

gandl multicentric 6 ILC tumors, extensive LCIS, isolated tumor cells in 1 of 6 nodes, bilat mx 2-13-08, arimidex & actonel 2-21-09, switched to aromasin 8-20-09

Dx 1/28/2008, ILC, <1cm, Stage Ia, 0/6 nodes, ER+/PR+, HER2-
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May 28, 2009 07:18AM kira wrote:

Gandl,

  Hoping this is ALL arthritis.

  Better to be thorough, but it's going to be hard to wait for the test results.

  Thanks for letting us know.

  Hugs and best wishes.

Kira 

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 31, 2009 12:14PM, edited May 31, 2009 12:15PM by Trina92070

 I was so glad to see this post as I am suffering from the same problem.  I have bilateral arm pain and numbness as well. I am on Arimidex and Actonel. I have been seeing my PCP and he put me on Lasix thinking it is swelling, this has not helped. The next will be a nerve conduction test. My ONC is out right now, as she was Dx with Breast Cancer. My next appt with the ONC is in July.  I hate to sound like a big baby but I am not getting any sleep because of the pain and numbness. It is hard for me to dress my 17 month old, cook, or clean. I hope we find answers!

Christina R McMillian

Dx 7/23/2008, IDC, 3cm, Stage IIa, Grade 2, 0/14 nodes, ER+/PR+, HER2-
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May 31, 2009 05:00PM, edited May 31, 2009 05:04PM by ckslow4

Hello ladies,

Up until I read this thread, I thought I was going insane.  I have had right sided pain-chest, arm pit, arm pain along with numbness for 18 months now...I occasionally get relief when my lymphedema/physical therapist re-aligns one or more of my ribs that are slamming into my brachial plexis.  Because of the extent of the mastectomy surgery, things get weak and wiggle.  It may be neccessary to get some physical therapy along with the lymphedema therapy to stabilize the muscles around the chest.  It is a slow process.  Don't ignore the other more serious issues like medication side effects or mets but it could also be mechanical.  I hope you get some relief soon!!

Tina-LIVE every moment, LAUGH every day, LOVE beyond words...Add ADH&DCIS,path slides reviewed again

Dx 10/3/2007, LCIS, <1cm, Stage 0, 0/2 nodes, ER-/PR-, HER2-
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Jun 2, 2009 12:06AM gandl wrote:

Hi,  I'm sorry to see that others are having problems also, but I'm glad I brought it up on the discussion boards.  Tina, how does your therapist realign your ribs?  Also, did you have reconstruction?  I have implants under the pec muscles and have wondered about that possibly having some effect. 

The celebrex finally got approved today, and when I went to pick it up it was just too expensive.  I wasn't entirely sold on taking it anyway.  I was on prescription strength naprosyn for about three months a couple of years ago and had problems with side effects from that.  It's probably good that I can't afford the celebrex. I'm about to go take some tramadol though because my right hip, knee and foot are hurting now.  It's always something (to quote Gilda  Radner's character Rosanne Rosanadana).  cheers, gandl

gandl multicentric 6 ILC tumors, extensive LCIS, isolated tumor cells in 1 of 6 nodes, bilat mx 2-13-08, arimidex & actonel 2-21-09, switched to aromasin 8-20-09

Dx 1/28/2008, ILC, <1cm, Stage Ia, 0/6 nodes, ER+/PR+, HER2-
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Jun 3, 2009 09:04PM, edited Jun 3, 2009 09:10PM by ckslow4

Hi Gandl,

Terra realins my ribs by finding them between my pectoralis muscle in my axilla (arm pit) puts her fingers against them one by one...2nd, 3rd, 4th, while I take a deep breath and many times I feel them shift with a krr,krr and the pain resolves.  She also stabilizes the ribs against the same side of the sternum because my ribs pop there too.  I had bilateral mastectomy with sentinel nodes removed and bilaterral TRAM flap reconstruction.  My left side only has lymphedema, my right side is exquisitely painful, swollen and has the rib issues.  Figures it is my dominant side. Your pain could be associated with the implants or the scar tissue that has formed around the implants a capsulitis of sorts.  Talk to your PS about it.  Make sure it is not something else like LUPUS, or some other autoimmune disorder that they overlook, or thoracic outlet syndrome which affect the nerves(brachial plexis) and arteries where we had surgery and one of the tests for TOS is taking a deep breath and getting numbness and losing the pulse at the wrist...just because we have already had cancer.  Good luck and write to me if you have any other questions.  An orthopedist may be helpful or a physiatrist( Physical medicine and rehab).

Tina-LIVE every moment, LAUGH every day, LOVE beyond words...Add ADH&DCIS,path slides reviewed again

Dx 10/3/2007, LCIS, <1cm, Stage 0, 0/2 nodes, ER-/PR-, HER2-
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Jun 5, 2009 10:29AM SanDeeLou wrote:

Gandl

Hi, I am also having the just about the same problems you are and my PCP thought at first it may be bercitis and gave my a cortizone shot which helped the pain in the top area of my shoulder and no where else.  If the pain continues I'm to call him back and he will schedule me for an appointment with my orhtd dr.  Just can't wait for that (HAHA).  Chemo just really screws our bodies up and no one in the medical profession seem to want ot admit it (that's my story and I'm sticking to it!).  Hope everything works out for you.

Sandy

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Jun 5, 2009 11:19AM caearl wrote:

Hi Gandl, Having read your thread, I wanted you to also look into the possibility of Brachial Plexopathy.  Some of the symptoms you are mentioning are exactly what I experienced.  There is a thread just above this one that talks about the condition.  (Radiation induced brachial plexopathy.) My diagnosis was done by a neurologist, the first one said it was carpal tunnel!!  Unfortunately this is a rare condition and many of the oncology professionals have never seen a case before, and doubt that it exists. But it does...Good luck with your journey, and if I can help in any way or answer any questions please let me know.  

Connie

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Jun 21, 2009 12:25PM gandl wrote:

Hi friends,  My scans went great thanks to valium and the prayers of friends.  The results are good too, lots of arthritisLaughing  The liver is stable and they've decided that the smaller lesion is a hemangioma also.  One little spot on one rib that has been there since my diagnosis is also unchanged. Just thought I'd share the good news.  Laughing  Gandl

gandl multicentric 6 ILC tumors, extensive LCIS, isolated tumor cells in 1 of 6 nodes, bilat mx 2-13-08, arimidex & actonel 2-21-09, switched to aromasin 8-20-09

Dx 1/28/2008, ILC, <1cm, Stage Ia, 0/6 nodes, ER+/PR+, HER2-
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Jun 21, 2009 12:44PM reen wrote:

I'm happy for your good news and glad you finally got anwsers.

First Dx. 11/2005 Mucinous Carcinoma Stage 1 Grade1 0/15 nodes Rads 2nd Dx 6/5/08, IDC, Stage 1, Grade 2, 2/44 nodes ER+ PR+ HER2-