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Topic: Lymphedema symptoms?

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

Posted on: May 5, 2006 03:59AM

megashgar wrote:

Could someone please answer the question as to symptoms. I do not seem to have any swelling, but my arm in achy, especially in the shoulder area and the underside of the upper arm. Also my underarm is more tender than it was in the past. I had 13 nodes removed on December 1st and this pain is new. My arm feels almost lame or bruised. Anyone else have similar symptoms? I am calling my onc this morning but looking for some help from you "experts" too.

Thanks, Heidi Log in to post a reply

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May 5, 2006 04:44AM NPat wrote:

You could be getting a tendonitis in your shoulder. This is very common and can be treated easily with anti-inflammatories and exercise... However, you won't know until you see someone and get an evaluation. You are doing the right thing by seeing one of your docs.
Pat
NPat
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May 6, 2006 09:05AM SheriH wrote:

My arm is very achy and tender, especially around the elbow. I also do not seem to have any unusual swelling, both arms are a little bigger than I would like anyway.

Sheri Dx 12/18/2004, IDC, 5cm, Stage II, Grade 2, 5/19 nodes, ER+/PR+, HER2+
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May 7, 2006 02:28PM blackice_58 wrote:

I was logging in for answers to that very question. You have exactly described the sensation that I have had in my arm since SNB in Jan 06. I also have pain on the "inside" (nearest my breat bone) area of what remains of my breast. The best I can tell, this is where the lymph nodes in my breast are located. Docs seem to not take me seriously because my arm is not swollen. No one seems to be able to tell me how much (if any) better it will get or how much exercise is too much. My reg GP sugests that 6 mos after surgery I should not expect any improvement. I decided today to seek out a lymph specialist even if I have to drive for hours to get there. Very frustrating...

Gail
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May 7, 2006 05:11PM Binney4 wrote:

Hi, all,
I'm really sorry you're all having to deal with this and not finding the answers you need from your medical team. Many of us have had the same problem and have learned that our medical schools fail to teach much about the lymphatic system. It doesn't mean our doctors are incompetent at what they do, only that we need to advocate for ourselves about LE. Gail, I think you've got a good idea about seeing a lymphedema (LE) specialist. The specialist for that is a well-trained LE therapist, and here is a web site with links to some:
www.mylymphedema.com
I sure hope you can find one closer than "hours" away! The National Lymphedema Network ( www.lymphnet.org ) has a Position Paper on Therapist Training that will help you know what questions to ask a therapist you're considering -- there are at present no licensing standards for LE therapists, so it's important that you know the standards and make sure the person you see meets them.

Many times swelling is not noticable, but it may be measureable by a therapist, and she (or he) will be able to tell by touch if there is lymph fluid where it shouldn't be.

Breast LE is often painful. LE massage (which you can learn to do yourself from a therapist) can reduce the swelling and fix the pain as well.

Please do stay in touch, all of you, and let us know what you discover and how we can help.
Binney
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May 27, 2006 06:57PM sherry7 wrote:

Meg and blackice, the best description I can give my sensations of lymphedema onset were I had a feeling of my arm being, heavy, weak, and achy, I also felt as tho there was a cuff around my wrist and around my upper arm. I didn't not notice that my arm was swollen persay, however I first noticed my LE in my chest and then started checking myself out to discover it was in my upper back as well. Of course I went into a spin, I knew what it was. Went to my onc who referred me to PT where I got the first intitial treatments and was taught to do it for myself with a video. Its not possible for me to say how it would feel for others, but these were my symptoms that eventually added up to something I could see and feel was almost spongy feeling. I also had pressure under my arm in pit like a little pillow creating pressure. Take care and best wishes on your outcomes. Sherry

let the miracles happen... Dx 9/17/2005, DCIS, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR-, HER2+
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May 28, 2006 07:35AM pconn03 wrote:

Binney and All:
A quick question for you. I am a survivor of 3 years (May23,2003) and have just noticed that in the last few months my left (bc side) upper arm is ever so slightly larger than the right. Then just yesterday, I noticed a 'pocket' of flesh hanging down just above my elbow on the inside of the arm. 1) Could this be the beginning of lympedema? 2) I have my annual appt with the breast surgeon on Tuesday - will ask her to evaluate and then 3) if she thinks it is, I know there are some certified PTs in this near me. I have begun to wear the sleeve around the house during the day (not at night) and noticed that it seemed better when I woke up but began to sag a little after being up awhile. Now I have the sleeve on again.
**** I know you can't tell for sure but if this is the early onset - aren't I doing the right thing to get to a PT??? Any other thoughts/suggestions??
Thanks for listening.
Pat

P.S. I had an MRI on this shoulder about a month ago and am supposed to see a surgeon about it. They said the tendons in the rotator cuff and in my bicep were "servely affected" whatever that means. I don't think that would be causing this pouchiness though??
Pat
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May 28, 2006 09:36AM Binney4 wrote:

Hello, Pat. I'm really sorry to hear you're having all these idiot arm issues. Remember the good old days, when we just USED our arms and didn't think a thing about it?!?!

Goodness, yes, do get a referral. Doctors can find it difficult to diagnose and therefore not get on it very fast, but you know it needs to be evaluated by a LE therapist, so you may have to be cranky about it.

If there is LE in your arm it may have been there for some time (sub-clinical) and just now be manifesting itself. I don't know if rotator cuff problems could cause pouchiness, but unfortunately LE can indeed cause rotator cuff problems, so it's possible you've got the cause/effect relationship mixed up. There's a brief article about LE and shoulder problems on the www.lymphnotes.com site. I'll go see if I can rustle up a web address for it, but my computer's been a slug this morning -- guess it's the holiday!

If this is LE then a well-trained therapist will do some wrapping and massage and teach you to do it as well, then re-measure for a sleeve and glove -- all of which will keep this in control and allow you to get back to the things you love. Steep learning curve, lots of stupid appointments, but hang in there, Pat! It'll be good!

Binney
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May 28, 2006 09:39AM Binney4 wrote:

How 'bout that! Computer turned suddenly cooperative! I hope this helps:
www.lymphnotes.com/article.php/id/295/
Binney
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May 28, 2006 10:08AM pconn03 wrote:

Binney:
Thank you so much. You are a doll!!
Pat
Pat
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May 29, 2006 09:00AM pconn03 wrote:

Binney:
One more question, do you know if picking up my grandbabies (one 16 lb and the other 18 lb) is a problem???
I'm going to my breast surgeon tomorrow as I said and will ask about my arm and a referral but just wondered what you have found in all of your research.
Blessings,
Pat
Pat
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May 29, 2006 09:52AM sherry7 wrote:

Hi pconn, I have that same question, I have LE, wear a sleeve and glove and have a grandson who is 28 pounds. if I use my good arm to do most of the picking up is that ok? Or is it with both arms that this weight thing is assessed? Just when I think I am getting this thing figured out, something else pops up! Sherry

let the miracles happen... Dx 9/17/2005, DCIS, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR-, HER2+
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May 29, 2006 10:16AM NPat wrote:

All of us grandmothers are in a pickle. My granddaughter is 21+ pounds. The weight limit would apply to the affected arm. The key is regular progressive weight bearing.

Nurses who work in hospitals or nursing facilities have a terrible problem because we often go without our garments due to the need for frequent hand washing and are tasked to lift and turn patients. Getting a transfer to another position is easily said and hard to do in many instances. I do not wear my glove during clinic because of hand washing issues... the thought of doing wound care, a pelvic or prostate exam, even with a glove over my garments, doesn't thrill me.

Sherry, I love your Avatar! Good choice!

Pat
NPat
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May 29, 2006 12:40PM pconn03 wrote:

Hi Sherry & Pat:
Guess the secret then is to wear the sleeve/glove and try to pick up primarily with unaffected side which might be hard to do. Anyway, once we have these sweet babies in our arms, I guess having the weight in the unaffected arm is the answer - and sort of what I've been doing but the picking up seems to present more of a problem.
Blessings to all,
Pat
Pat
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May 29, 2006 02:11PM sherry7 wrote:

Thank you so much for the clarification regarding the lifting issue. I think I finally understand. No grandmother should miss the gift of holding their grandchild! I am a hands on meemaa, lol, Thanks binney and Npat and pat

let the miracles happen... Dx 9/17/2005, DCIS, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR-, HER2+
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May 30, 2006 05:44AM pconn03 wrote:

Amen, Sherry!!! And sweetly said . . .
Blessings,
Pat
Pat
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May 30, 2006 07:52AM ShirleyHughes wrote:

My grandchildren are 3 1/2 years old and one year old. I tell my oldes grandbaby that I cannot pick her up but that she can climb in my lap. Now, with my little one year old I can't help but pick him up. I try hard to use my "good" arm with most of the weight. Oh, but it gets to my back but that's another story.

As far as the size of the effected arm...mine was a very small difference from the elbow up. None showing up in forearm and hand thank goodness. My surgeon asked about lymphedema when I saw him last and I told him I was in treatment. He noticed I could still wear my rings...LOL. He told me that I would be at high risk for LE because of node removal and because I was a "little" overweight. HA!

All of my doctors have warned me about LE. My onc felt my arm when I thought something just wasn't right. He said, "It does feel different." So, he set me up with a LE therapist that HE knew. I was told by another therapist in my town that I also had tuncal LE. So, so fun.

Love the butterflies!
Shirley
God, grant me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference
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May 30, 2006 11:47AM pconn03 wrote:

Hi Guys:
Well I went to the breast surgeon today for my annual and asked her about the "pouchiness" on the inside of my left arm above my elbow. She acknowledged that it looked like mild LE but didn't seem too concerned. I told her I understood that it was 'mild' now but that it was important to get a jump on it to prevent it from getting worse. She agreed and I am hoping to talk to this doctor (I've been to before about my shoulder) who specializes in LE. I couldn't get in with him for 2 weeks so I asked if he could at least call me in the meantime. (Maybe I can persuade him to see me??) Anyway, I'm wearing the sleeve now and will continue to do so until I see him!! If there are any other suggestions, I will welcome them. You guys on this thread are the best!!
Pat
Pat
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May 30, 2006 12:54PM sherry7 wrote:

Pcon, I am so glad that you came to these ladies ie:binney and NPat and got on the track to managing your lymphedema. I am sincerely sorry that you have it, but its so much better to know so you can take action. I am concerned there are a lot of women out there with this problem and no diagnosis or direction. Pconn, again sorry to hear, but glad you are informed. Sherry

let the miracles happen... Dx 9/17/2005, DCIS, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR-, HER2+
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May 30, 2006 02:35PM pconn03 wrote:

Thanks Sherry for being there!! I agree there may be other gals who may have it but not had it diagnosed. This thread and you ladies are just great.
Blessings,
Pat
Pat
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May 30, 2006 05:45PM NPat wrote:

Pat,
You are your own best advocate. You go, girl! Don't let anyone poopoo your symptoms. Remember, when you go to a healthcare provider, you employ them... If no one made appointments, they would have to close up shop. I tell my patients that if they are having trouble getting answers, take along a buddy and have them stand between the provider and the door so if their questions aren't answered, the provider can't scoot out without answering. Try to provoke eye contact. Say, "Doctor (NP or PA) I need you to look at me because I am serious about my concerns."

Always let the medical assistant or nurse know exactly why you are in the office and ask the big questions at the beginning of the visit. One thing providers hate is as we head toward the door and think the visit is over, the patient says, "Oh, by the way, I have this lump (swelling, chest pain, bleeding...)." If we had known from the beginning, the patient could have been appropriately disrobed, etc. and the time would have been more effectively used. Unfortunately, insurance reimbursements are going down and expenses (malpractice, utilities, salaries) are going up resulting in a packed schedule.

Gosh, I love this site. I have learned so much from everyone and try to share some "pearls" along the way.

Take care, gals....

Pat
NPat
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May 31, 2006 12:37PM pconn03 wrote:

NPat:
Thanks so much for the encouragement. Guess what, the doctor called me about 7:15 this morning and wanted to know what was happening. I explained the situation to him and said I know catching this early is very important and that is why I am concered. He agreed and had the recepionist make an appointment for me to see him this Friday!!! YEA!!!! I feel so good now because I know someone will be looking at it and giving me some guidance. As you said, Pat, we must be our own best advocates. And as you also said "Gosh, I love this site," I'm with you 100% You gals on this LE thread are super and I really mean that!! Thank you and
God bless,
Pat
Pat
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Jun 1, 2006 06:10AM inspiewriter wrote:

I finally found someone near me who does Le treatment--it's actually a hand center. The therapist has 4 years experience--that sounds pretty good,doesn't it?

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Jun 1, 2006 08:25AM sherry7 wrote:

inspie is she certified? 135 hours minimum to work on us. Hope she is so you can benefit asap. Sherry

let the miracles happen... Dx 9/17/2005, DCIS, 1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR-, HER2+
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Jun 3, 2006 05:17AM acgw wrote:

I am a Physical Therapist, just diagnosed with IDCS and also trained in, but not certified in, Complete Decongestive Therapy (CDT). Without a doubt, if you have access to a certified CDT practitioner, that is who you should recieve treatment from. Having said that, a non certified therapist has at a minimum 35 hours of training. I am the owner of a small private practice and could not afford to be away from my practice the length of time required to become certified. Where I practice there is one other non-certified therapist 25 miles away and another certified therapist 55 miles away. Given the cost of gas and the time intensive nature of the treatment, my patients are glad for the care that I am able to provide and I believe that my results are equal to a certified therapist with a similar amount of experience. The bottom line is that any woman who suspects she has lymphedema should demand an evaluation by a therapist trained in CDT. A garment, diuretics and a sequential compression pump are not going to be as effective as CDT.
Good luck!
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Jun 3, 2006 10:36AM Binney4 wrote:

Hi, acgw, and welcome!

Really sorry about your recent diagnosis -- couldn't tell whether you meant Ductile Carcinoma In Situ or Invasive Ductile Carcinomas (plural?!), but I sure hope it's the former. Have you already had surgery? Hope you're doing well and gaining strength every day. Will you be doing rads, too?

Having already had some training in LE therapy, your posts here will be most welcome. LE therapists are truly some of the most wonderful people in the world -- generous, genuinely caring, hard-working, endlessly flexible. Amazing! (My therapist and her associate have a pact together, BTW, that if one of them is ever diagnosed with bc, the other will give her free CDT massages, starting before surgery and continuing thereafter for life, as there's some early evidence that it can be preventive as well. Hope you have a similar arrangement worked out -- this is one thing that's definitely better prevented than treated! Although convincing our non-LE bc sisters of that can be daunting, for sure!)

I so agree with you that there are far too few LE therapists available in many (maybe even most) parts of the country, and that sometimes it's necessary to make compromises and take shortcuts to get any kind of treatment at all. In fact, sometimes it's a major battle just getting an accurate diagnosis, much less an appropriate referral. But since several of us here (including myself) have been treated unsuccessfully by therapists with as little as 36 hours in specifically LE training, and even put at serious risk by their limited knowledge and experience, you'll find we're crusaders for the LANA therapy standards, whether the therapist is registered with LANA or not. (Many don't register of course, since it's not yet required by insurance companies and they are already swamped with patients.)

So I'm hoping your being here will also be really helpful and encouraging to you, not only in your journey through bc, but also in your career journey. The pioneering state of Georgia is already well on its way to making national (LANA) certification mandatory in that state, and there's no question other states will follow. So I'd just like to encourage you to find every opportunity to further your training -- for your own sake and the sake of all of us with LE who so need your skills.

Welcome, welcome! Be well,
Binney
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Jun 3, 2006 01:30PM acgw wrote:

Thanks for your reply Binney. I am sorry that you had a bad experience with a non certified practitioner but am glad to hear that you have gotton the care you deserve.
I'm still a little new to the initials of the disease having been only diagnosed two weeks ago (Just before leaving for vacation). I have both invasive and plain old DCS in the right breast. I'll be seeing a surgeon on monday. I have an amazinging husband and family support network so I am optimistic about things.
Take care.
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Jun 3, 2006 02:13PM Binney4 wrote:

There's nothing quite like an amazing husband at a time like this. Big (((((hugs))))) to both of you. I know this sounds strange, but I do hope you had a wonderful vacation anyway. While waiting for treatment we did some family day-trips that were so special despite the "cloud" overhead. I trust Monday will bring you a new member of your medical team who will be as supportive and amazing as your family!


We're here for you too, for sure. Do please keep us posted,
Binney
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Jun 9, 2006 02:41PM pconn03 wrote:

Hi Binney, Npat Doreen and All:
An update since my last post on this possible LE concern. Well, remember that I had two things going - one was a shoulder problem and I was to see the surgeon about that and the other was the "pouchiness" for which I was to see the doc who specializes in LE. Here's what happened:
1) Saw the LE doc last Thursday. He said he didn't think this was LE but said I should wear the sleeve for two weeks and in addition, he gave me an RX for a doppler ultra sound to rule out DVT in the upper arm. (I had that test this AM - so won't hear back on that 'til next week I suppose).
2) Went to the orthopedic surgeon this past Monday - can you say "shoulder replacement?" Well, it's not going to happen because I'm not going to have another replacement. I already have an ankle and a knee - will most likely need the other knee in a few years or so - so that's all the spare parts I'm going to have!!! He said I have extensive arthritis and nothing else (shots, therapy etc. etc. will do anything for me expect give temporary relief. He said in fact the therapy could cause more harm because you are actually manipulating a joint that is already worn out - makes sense.
Well, that's my update and I thank you all so much for your support. I'm going back to the LE doc on 6/30 and have him take a look at it again. In the meantime, I'm wearing the sleeve (except at night) and the arm seems to have said the same. I guess I'll have to see what he says when I see him on the 30th and also what the ultra sound showed - if anything.
Thanks for listening and again thanks for all of your kind support. Have a wonderful weekend. I'm doing the Walk for the Cure tomorrown in Detroit so am looking forward to it.
Blessings,
Pat
Pat

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