Rib Pain...need advice please

CAW
CAW Member Posts: 45
edited June 2014 in Lymphedema

Hi Ladies...

It's been a while since I have posted but need some advice.  I was dx'd 7 years ago, had SNB, lumpectomy and did rad, no chemo.  I was dx'd 8 mo ago with mild LE.  Here's my problem...the first year after radiation, I would have terrible rib pain (hurt to touch them or move certain ways) and the pain would float around from front ribs to back ribs. Went for months trying to find solution and finally rad oncol put me on Keflex and it took care of the problem.  All other Dr.'s made me feel like it was in my head!  I am now dealing with this again!  It started in my back upper ribs first of Nov (felt like I had pleurisy) and lasted for a full month.  It was so painful that I couldn't take a deep breath.  I went to my GP and he told me I couldn't get a deep breath because I was probably having an anxiety attack.  He said I think you are worried that your rib pain is cancer.  I told him that never crossed my mind because I've had rib pain on and off since radiation and besides....I don't think an anxiety attack would last all day, everyday for a month!!  He did order a chest xray and it was clean.  I went most of Dec without the pain but now, my ribs under my BC breast are once again very sore to touch and I also have the rib pain under my shoulder blade on BC side, that again....is making it VERY difficult to take a deep breath due to the pain.  My LE is stage 1 truncal and arm and I do my MLD and exercises everyday. Can this be LE causing this much pain and making it difficult to take a deep breath?  I don't know who to turn to because my GP knows nothing about LE or BC, my oncologist doesn't want to believe I have LE because I don't have much visible swelling (mostly the pain) and he says LE doesn't cause pain and my BC surgeon told me I couldn't get LE because she did a SNB and only removed 5 nodes on me but the LE Therapist said I definitely have it.  This is a horrible feeling not being able to take a deep breath due to the pain and it also hurts moving around.  I'm wearing my under armour shirt but it's not making a difference.  I would greatly appreciate any suggestions on what I should do!  I haven't been to the LE Therapist since June because my insurance won't pay for it and therapy ended up costing me $1700 out of pocket so she taught me how to do the MLD. Sorry this was so long.....thanks for listening!

Comments

  • SleeveNinja
    SleeveNinja Member Posts: 178
    edited January 2011

    CAW - Gosh. I have no idea what's causing your pain but you need doctors who will help you find out.  Keflex is an antibiotic so you may have had an infection last time and you may again.  That's the kind of thing that needs to be addressed ASAP.  Can you see a different doctor? Can you talk to the LE therapist?  I hope some else here knows more.  Hang in.

  • kira66715
    kira66715 Member Posts: 4,681
    edited January 2011

    CAW--truncal LE can be incredibly painful, also after radiation it's not uncommon to get rib pain. There could be a couple of things going on at once.

    Ironically, I did a Livestrong Cancer Care Plan today, and the radiation side effects were all about lung:

    Radiation fields involving the lung can lead to scarring (fibrosis), inflammation (pneumonitis), and restrictive or obstructive lung disease. Risk for these problems is increased with higher doses of radiation and radiation given in combination with certain chemotherapies (bleomycin, busulfan, BCNU and CCNU) and for those survivors who also had part of the lung surgically removed (lobectomy). Survivors who have had radiation to the lung are strongly encouraged not to smoke, as this can greatly increase the risk of problems. Annual history and physical by a healthcare provider should include a pulmonary exam and review of possible symptoms (cough, shortness of breath, wheezing). Survivors should receive annual flu vaccines and the pneumococcal vaccine. Physicians may consider chest x-rays or pulmonary function tests for those at highest risk or a change in pulmonary status.

    Scarring within the lungs can result from radiation, and uncommonly this scarring may affect blood vessels. Any survivor coughing up blood should be evaluated immediately by a physician, either in the office or the emergency room.

    In an ideal world, you could be checked by your lymphedema therapist, and your GP would actually try and problem-solve this and not tell you it's anxiety!

    What is with these doctors denying your reality: you have truncal LE, it IS painful, you may need additional LE therapy and your doctor needs to check out the causes of pleuritic pain--make sure you don't have an infection, inflammed ribs (costochondritis), or pleurisy.

    The NLN issued a statement that LE is painful--what will it take for this team to acknowledge that your pain and shortness of breath are real and deserve investigation and treatment?

    Kira

  • CAW
    CAW Member Posts: 45
    edited January 2011

    Thank you for the reply. 

    SleeveNinja....yes, I was told when the rib pain happened shortly after radiation 6.5 years ago from my Rad Oncol that it was an infection in the tissue surrounding the ribs which is why he put me on Keflex.  I had suffered for months and on my 7th day of Keflex, the pain went away!  This is the same pain that I'm experiencing now.  Ribs are very sore to touch and painful when I stretch which makes for a burning sensation.  This is located in the ribs under the BC breast.  I think I'm going to call my GP and ask for a Keflex script again.  When I posted a couple of days ago, the terrible pain that I had in the upper back ribs (which were the ones making it very painful to take a deep breath) have gotten much better.  I've been doing my MLD exercises on them and it seems to be working.  That was a different pain that what my front ribs are doing and my front ribs are not responding to MLD.  Can fluid build up in the chest/lung area from truncal LE and cause discomfort and/or breathing issues? 

    Binney & Kira....since you are both so knowledgeable about LE, what is recommended for an active person (ride horses, lift heavy "stuff", exercise, water ski, etc) with truncal LE?  I went to a sporting goods store and bought a compression short sleeve shirt but should I be doing more?  I know the sleeve is important for someone active and exercising so how can I control the truncal?  Also, I do not have a sleeve....I had one LE Therapist say I didn't need to wear one since I have mild LE and not much swelling but then I had another that said, for sure.....I should be wearing one.  When I exercise or overuse the arm....it does get pretty painful.  My fear is, if I don't have much "visible" swelling in the arm, am I going to create swelling by going to a sleeve? 

    Kira....I need to find some of the statements about LE being painful and go armed the next time I have Dr.'s appts.  All 4 of my Dr's (Oncol, 2 BC Dr's & GP) tell me that LE is not painful....very frustrating!!! 

    If I get a script for Keflex and it doesn't help the rib pain, what kind of test should be done.  I had someone suggest a bone scan but I was wondering if a PT Scan or MRI would show more valuable info & if so, would either show if I had inflammation or even fluid build up from LE?  Thanks again for listening!

  • CAW
    CAW Member Posts: 45
    edited January 2011

    Binney & Kira ~

     I was hoping since the 2 of you are sooooo knowledgeable, maybe you could have some thoughts for the above post that I sent out a few days ago.  Thank you!

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited January 2011

    CAW, I can vouch for the fact that LE is painful! I have truncal LE and don't use a sleeve as I'm afraid to annoy the nodes that are doing okay right now. I don't use a compression vest/garment either as I still feel that constriction would make me feel worse. I know, I'm bucking the system, but if I already feel "tight" I can't imagine wearing something tighter!

    My truncal LE is VERY painful, and a strong reminder to do my MLD moves.

    I have also been diagnosed with Costochondritis after almost a year of testing on my heart. My chest pain was so bad everyone assumed it was my heart as I already have issues. Surprise! The inflamation from the costo takes my breath away....literally.

    Don't take the antibiotics without knowing you have an infection as they won't work for you when you really need them and you could become resistent to them. Try an anti-imflamatory first.

    Good luck!

  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2011

    CAW, if you have subclinical LE (Stage 0, no visible swelling but still have fluid in the tissues), then a sleeve and gauntlet or glove can really help, especially when exercising or traveling. I shouldn't make the condition worse, but will give much-needed support to your lymphatic system as it tries to improve its efficiency. The issue is to make sure the fit is good:
    http://www.stepup-speakout.org/proper_fitting_of_lymphedema_garments.htm

    For truncal LE there are a lot of possibilities that are firmer than a sports shirt and may be really helpful for you. Look over all the garment suggestions at the bottom of this page:
    http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm
    I use a WearEase camisole and find it useful for almost everything. OneBadBoob swears by a well-fitting Bellisse bra (but for that you have to have a very knowledgeable fitter). When I have trouble with flares I add a SwellSpot or a "chocolate bar" to help bring the swelling down.

    It really sounds like you could use some help from a LE therapist who's experienced with truncal LE. Any chance of that?

    Kira's more organized than I am, so she'll be quicker about rustling up the LE/pain information. 

    Sure hope some of this helps! Barbe, I'm really sorry you've been coping with this too. Very crummy stuff!

    Gentle, gentle hugs!
    Binney

  • kira66715
    kira66715 Member Posts: 4,681
    edited January 2011

    CAW--a couple of thoughts--if your arm gets painful with use, by all means get a sleeve--hard to believe your LE therapist didn't recommend it--especially if you're brushing a horse, or cleaning stalls. Well fitting compression should not trap fluid or cause swelling, and you should consider a gauntlet to keep the fluid out of your hands--and wear barn gloves.

    I'm a little over two years out from radiation, and if I don't side stretch every day, my side and axilla get stiff and sore--radiation scars and fibroses our tissue.

    Barbe has a good point about costochondritis: it can be chronic, and incredibly painful--press on the rib margins next to the sternum and if it hurts--good chance you have inflammation there--people forget that the ribs have a joint--like a bucket handle--and it can hurt for a long time and recur with costochondritis. Anti-inflammatories are the way to go for that.

    Also, truncal LE is very painful, and requires MLD, daytime and sometimes night time compression:

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

    The NLN statement about pain and LE was posted on their facebook page due to some comments they made about our Washington Post article

    http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.lymphnet.org%2FpdfDocs%2FNLN_Washington_Post_Reply.pdf&h=ce684

    If that doesn't work, let me know--it's on their facebook page

    http://www.facebook.com/pages/National-Lymphedema-Network/96960716923

    If your ribs are still sore, consider a chest CT--it will show if there is radiation fibrosis--but it's a lot of radiation for the test. 

    Does that help?

    Kira

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited January 2011
    I have a chocolate bar so I feel "full" too Binney! Laughing
  • CAW
    CAW Member Posts: 45
    edited January 2011

    Thanks so much for the replies.  I have looked up Costochondritis, and that could very well be what I'm dealing with.  I can't believe my GP didn't consider that!!!  I sure have the symptoms (sore ribs, pressure in chest & sometimes painful or hard to get a deep breath.  He did order a chest xray last month which was clean.  I'm trying the Advil route before asking for an antibiotic....good suggestion! 

    Binney...I'm going to check out the camisole's for the truncal LE and I'm also going to look into getting fitted for a sleeve.  We have a store in our town that sells compression garmets / sleeves and when I called them to ask questions, they said I could come in to them and they could fit me for a sleeve.  Is that wise or should I get fitted by my LE Therapist?  The one I was going to is an hour away from me and she's the one that said I didn't need a sleeve.  I have just found out about another that's 30 mins from me and I was thinking of trying to get an appt with her. 

    Kira....you are right, just the movement of brushing my horse can really make my arm ache, so I usually have to use the good arm.  Due to my active lifestyle...I agree that I should be using a sleeve.  Has anyone ever gone "armed" to the Doc and pulled out the information relating to "painful LE" and given it to a Dr. that believes LE is NOT painful?  If so, just wondering how they reacted?  Guess I'll find out....since 3 of my Dr's tell me it's not painful, I plan to give them a copy at my next visits....YIKES!

    Thanks Ladies!!!!

  • kira66715
    kira66715 Member Posts: 4,681
    edited January 2011

    CAW--if they can fit you for a sleeve, I'd go for it--also get hand compression--likely all you need is a gauntlet--not an expensive glove, but you don't want the sleeve to push the fluid into the hand.

    CAW, my horse died in 2008, but he was a light roan appy and never got clean, and I remember how hard I'd try and brush it out of him. Maybe a few strokes, then switch to the good arm, and please wear a sleeve if it makes your arm hurt.

    They do make inexpensive compression gloves by Isotoner : my sister, who does not have LE, but her hands swell when she hikes, swears by them

    http://www.totes-isotoner.com/category/isotoner/therapeutic+gloves/compression+gloves.do?nType=2

    I found these cheap gloves with sleeves on a stepupspeakout link--don't know anything about them

    http://www.pattersonmedical.com/app.aspx?cmd=get_product&id=97588

    Here's the rationale for why you compress the hand with a sleeve:

    http://lymphedivas.com/lymphedema/gauntletandsleeve/

    Try the advil, and know that costchondritis can last a long time.

    I recently sent my surgeon the seroma article and got a brush off email back: "Thanks for the update"--hope she reads it. It never hurts to present evidence...Let us know how it goes.

    Kira

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