Pain or aching under arm and when bending elbow

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tomatojuice
tomatojuice Member Posts: 382
edited September 2015 in Lymphedema

Live in Ny, no therapist, no sleeve , no gauntlet. In 2009 I had a therapist, a sleeve. All of a sudden as of last year my insurance does not cover any of these things. My old sleeve is not the right size and actually caused swelling when I tried to wear it. Had an infection last august that came on with a lot of pain in my entire arm, followed by a rash that traveled very fast. Had to go to the ER, where all staph infections, including lymphedema, are treated as if you had Mersa, until blood work comes back in 2 days.So I was given a new and powerful antibiotic, that made me nausea for a week. This whole event could have been averted , but the physical therapist at my hospital was inept. The hospital I go to touts be the best in the nation, but they no longer have a lymphedema specialist.In any case my old sleeve and glove no longer fit. I have searched the city to no avail to find a specialist that takes my insurance. I wear rubber gloves when i do dishes, and clean. I do lymph drainage that I learned when my insurance did cover a therapist. The thing is, this past 2 weeks I suddenly have discomfort under my arm, and in the outside bend of my elbow. I feel it everyday, just bringing a cup of water up to my lips. Sort of feels like mild cording(I had cording, a few years after surgery). Does anyone know why all of a sudden I feel this. Is it normal for lymphedema? Could there be an infection going on, without the rash? I have a emergency supply of antibiotics. Do not want to go to ER again. I have found Lymphedema life(as I am sure many do)and all the do's and don'ts difficult to adhere to. But I try. to not carry anything more than 10lbs, to not rub and scrub in my kitchen. As I write I realize I also have pain in my upper back, a kind of pulling, and this is not new. It started years ago. I am supposed to visit my daughter in Hawaii in beginning of July. Last 3 times I flew there without sleeve(no problem)But, I am concerned because the last infection was much worse than the others, I have had over the years. And now this aching pulling under my arm, in my back, and my elbow has me concerned.

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  • tomatojuice
    tomatojuice Member Posts: 382
    edited June 2015

    Is there anyone with similar aches and pains? I feel so isolated with this. Can someone provide some kind of feedback. Thank you


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  • Tomboy
    Tomboy Member Posts: 3,945
    edited June 2015

    Hi, tomatojuice. I am here to tell you that yes, I do have aches and pains in my LE arm, and sometimes I am very bad at taking care to do the lymphatic drainage. I was gentle with my arm and wore sleeves all that, but... I have noticed that when I kind of treat my arm like normal, altho like you, not really more than ten pounds, it kind of does better. Are you still being followed up with a breast surgeon or specialists, that can see you, and maybe give you a referral to just a regular physical therapist? Do you know about www.stepupspeakout.org by any chance? There is a place where you can find registered lymphedema therapists there, altho i didn't really have any luck with it for my area. I am sorry this is happening to you, and I do hope it can all be straightened out before your trip to Hawaii.

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  • carol57
    carol57 Member Posts: 3,567
    edited June 2015

    tomatojuice, is it sharp pain? That isn't the usual presentation from LE; rather an ache and/or a slight burning sensation. I wonder if there is a cord developing, as happened to you before. Also, have you tried compression for your back? LE can sure migrate there. For me, it's just under my shoulder blade, an area that gets tender and puffy when my LE flares up. I find that a compression tee shirt does wonders, and when I fly I'm always wearing one under my other clothing, along with sleeve and gauntlet. It's so incredibly frustrating if you don't have access to a therapist now, because it sounds like you'd benefit from a professional evaluation of what's going on, and a game plan to get it under control. So sorry you're having to deal with this.

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  • tomatojuice
    tomatojuice Member Posts: 382
    edited June 2015

    Hi Tomboy,I just wanted to thank you for responding. You have no idea how good it made me feel to hear from someone. Although it saddens me that there are others who also feel these pains. Thank you for your kindness and response. I will remember to keep you in my thoughts and prayers. I read online today that the humidity and heat can cause LE to flare. Taking extra showers may help.

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited June 2015

    Hi,TJ. Like Carol57 said too, it could be cording, and compression tee's are the bomb! It feels so great to have compression on ALL the spots! I have a kind of quilted sleeve that I wear on my arm at night. I hope you can find some help soon.

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  • kareenie
    kareenie Member Posts: 339
    edited June 2015

    Tomatojuice if there are no LE therapist in your city that are in network you can get an out of network gap exception from your insurance. Call and ask them how. First find a good or recommended therapist that is out of network. Give insurance the info they will give you a letter promising to pay as if they were in network. I had to do this for all my garments...there are no in network suppliers/fitters in my area. Yes it's a pain in the butt but it gets stuff paid for.

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  • tomatojuice
    tomatojuice Member Posts: 382
    edited June 2015

    Hi tomboy and kareenie...I found a compression top, been wearing it, and being careful. Starting to feel a little better. Been looking ito pyrchasing a compression bra, like wearease, or the slimmer, and tanks. Anyone have any opinions on a good product. I realize that I have truncal lymphedema mostly. Thank you again I will look into the out of network insurance. I have done that once before with different doctor. Life is good until it isn't. So much on my mind right now.

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  • paintThesky
    paintThesky Member Posts: 56
    edited September 2015

    Tomboy what kind of compression tee were you talking about? I ordered one made by Wearease. It was too big in the bust area and very tight through the hips. I was worried if I sized down the hips would be really tight. I have swelling under my arm as well as my chest, arm, and hand. I figured a compression-t would be the trick for me. I also ordered a compression bra, that compressed my chest area, but was too tight under my breast area. I can't catch a break. I have sent back 4 items in the past 2 weeks. It's very hard to find the right size ordering this stuff online. I really ache at days end. Compression from my arm sleeve seems to be helping. I have been dealing with this for years, and am just realizing this LE has been coming on slowly, while I ignored it. I did not take it seriously until now. After 14 years, I figured I was in the clear and not going to get bad LE.

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  • carol57
    carol57 Member Posts: 3,567
    edited September 2015
    paintthesky, you might try gotravelwear.com, and look in their shop for a compression tee shirt. It was designed with the help of eight women in this forum, which is no guarantee that it works for everyone -- our LE areas are so individual --but most found that the final product works well. I'm on an ipad and dropping a link is cumbersome, but I think you can find the shirt easily enough, and it's much, much less expensive than the wear ease. I like the wear ease shirt too, but the GO Travelwear shirt works great for me and it's an easier decision to buy several to rotate through the laundry pile.
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  • paintThesky
    paintThesky Member Posts: 56
    edited September 2015

    Thanks so much carol57!


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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2015

    TJ, being late to this thread I can't add anything that hasn't been said except to say I'm another one who feels the pain you describe from time to time, though not so much on the back. LE can throw you up a pile of trouble at any time even after a long respite. It's a hideous condition. I hope you get relief.


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  • Farmlovergrl
    Farmlovergrl Member Posts: 46
    edited September 2015

    Painthesky, Did the Tamoxifen make the swelling worse? I have it in my left arm and the forearm seems the most swollen. Thanks, Farmlovergrl

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  • paintThesky
    paintThesky Member Posts: 56
    edited September 2015

    Farmlovegr.. I am a 14 year survivor, I remember having problems with this in 2004, and I was taking tamoxifen at that time. I don't really know if it affected it or not. My problems have been coming on gradually over a period of 10 years. In March I noticed a swollen area under my arm. I had 2 different docs look at it and tell me it wasn't something to worry about, and sent me for mammo and ultra sound. I told them I thought it was LE. I was just about pain free by the summer and then went crazy moving furniture and cleaning. I never took the threat of LE seriously. I quit wearing my compression sleeve years ago. Now that I look back, I know it's been coming on, because my breast hurt and upper arm. I had swelling running down the arm into the elbow, and forearm. Now I have tingling feelings in my back. I did everything wrong these past 14 years. Whatever my therapist back in 2004 said don't do, I did. I didn't know it could get like this. I'd grocery shop, and load my arms down with bags, vacuum, mop, pull weeds, walk a 70 pound dog with him yanking on the leash, and I love to paint and draw, and crochet too. The only thing I did right was wear gloves when cooking and cleaning. Back in May I got stung by a bee on my arm while outside washing windows, and got cellulitis. I have an appointment to see my doc on Monday, and ask him for a referral to a therapist. So, I don't know if the tamoxifen contributed to mine or not. I have an aunt that was told in 1982 that she had 2 years to live max. She had a radical mastectomy, and many lymph nodes removed. She is now 90 years old with Alzheimer's. Her present doctor said she was on tamoxifen for too long (13 years), and that may have contributed to the Alzheimer's. They didn't know back in the 80s that tamoxifen should only be used for 5 years. She never got LE. Other than the Alzheimer's, she is a walking miracle. Hope this helps.

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