What a pain!

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Warrior13
Warrior13 Member Posts: 7
edited June 2014 in Lymphedema

I just wanted to let all of the ladies know that you are not alone...I am a 42 yr old male with lymphedema and serious damage to my brachial plexus. I have been thru cancer treatments twice and a major surgery to clean out damages caused by my port flipping over. I wear a sleeve all day every day along with a night sleeve. Isn't it amazing that there is no cure!! I am in pain 24/7 with the numbness, tingling, and shooting fire down my arm and hand. I have been to 12 doctors. No one wants to help. I have found the pain is there no matter what I do, so I have decided to continue to play sports and fight thru the unbearable pain. I feel so sorry for everyone in the same boat. Maybe one day they will find a cure.

Good luck to everyone!

-Matt

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

    Matt, welcome!

    I'm so sorry for the reason you've joined us, but glad you found us. You've really had a journey!Frown But your determination is an inspiration, so thank you for posting!

    Have you seen the brachial plexopathy discussion board here? It's in this same forum (Lymphedema After Surgery), pinned near the top of the list.

    We also have a website specifically for women and men with post-breast cancer lymphedema. It has a page about Brachial Plexopathy here:
    http://www.stepup-speakout.org/Radiation_Induced_Brachial_plexopathy.htm

    And can I put in a plug for voluteering for some brachial plexopathy research? It has the potential to bring the plexopathy issues into focus for the medical community that is so determined to brush it aside. It's an interview survey, open to both men and women with post-breast cancer plexopathy, designed to determine what the experience of patients is in seeking diagnosis and treatment. If you'd be interested in participating you can read the study annoucement in recent posts on the discussion forum I mentioned above, or contact the head researcher, Dr. Elise Radina, at Miami University in Ohio:
    radiname@muohio.edu
    513-529-3639

    Again, welcome! We're all in this together, for sure -- please tell us how we can help.

    Be well,
    Binney

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

    Yep, I agree! What a pain!!! Are you treating yourself with MLD? I find that can ease it somewhat, but when my truncal LE backs up too much, it's too late to help. I do take pain meds for other issues, so fortunately I'm already medicated, but the LE pain does break-through. So weird that fluid can hurt so much, no one that hasn't had it can imagine....my heart goes out to you.

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  • Trishia
    Trishia Member Posts: 572
    edited March 2011

    Hi Matt~

     I'm with you!  It is a pain. I have the burning, numbness and tingling too.  I have for years.  But I also refuse to give up the things that I love and that are healthy for me in other ways.  I do modify, but I need to live my best and fullest life.  Some days are harder than others. (((hugs))) 

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  • bellaroseshell
    bellaroseshell Member Posts: 3
    edited March 2011

    I am sorry to hear you are going through so much, but there is help out there, you must search for a physical therapist with Lymphedema specialties. I found one where I live and after 6 months of working on me 3-4 times a week she managed to get that burning hot water feeling to go way down, the swelling and pain is better now too. She showed me ways to take care of myself when the swelling, pain and water came back. I can honestly say that if it wasn't for her, I would have went back to my surgeon and had my breast removed! Lymphedema is something we all have to live with for life, but it doesn't have to make living miserable either. 

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

    Bella, having your breast removed wouldn't have helped!! It would have exacerbated the problem; another surgery. I had a double mast so I can attest to that.

    Matt, what you'll find over time is that you can tell when the fluid starts to build before it reaches the pain part. MLD can help get rid of the build-up and you can usually avoid the pain. Sometimes I ignore it (out of stupidity or denial) and then I have a lot more work to do to get comfortable again. It's also hard to explain to people why fluid can hurt!!

    How are you doing otherwise?

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  • Warrior13
    Warrior13 Member Posts: 7
    edited March 2011

    Thank you all who replied to my post. As I was trying to boost everyones spirits, everyone else boosted mine...so thank you!

    As for how I am doing, I would say good. Some days are worse then others, especially mentally. As you all know, this can become depressing sometimes, but then I start thinking about how lucky I am and then I look at what happened in Japan and I wonder why I ever complain. With that said, managing my pain becomes tough as I work full time and my arm seems to get worse as the day goes on. My pain medication is a double edged sword, it helps with my pain but it also wears me out. I have tried backing off on the meds but I feel exhausted and more pain, so its a loose loose situation. ANYWAY, I went to a cancer survivor fest in Orlando two weeks ago and they had a set up for patients with pain and gave me a 30 minute free session of "Energy Medicine" which consisted of a therapist slowly working her fingers in to a deep area of my axilla area, locating the root of my pain, and gently massaged the area and transferred the energy in the tissue out of my body. Crazy right? It was amazing and I felt great for about 2 days. Has anyone else heard of this?

    Lastly, I have started a non profit org that will concentrate on cancer survivors with lymphedema and pain. It will be a slow process but once it is up and running I hope to help people with this dreaded condition.

    Thanks again for the kind words..keep fighting and don't ever give up!

    Have a great week!!Wink

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

    Wouldn't it be great if you could find a therapist near you that could do that for you every week! Perhaps it would help to keep the lymph channels open, too. I am a FIRM believer in massage!! Good to hear you got some relief.

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  • Warrior13
    Warrior13 Member Posts: 7
    edited March 2011

    Thanks Barbe. Yeah, my problem is that I work full time and cant even make it to my regular therapist very often. My wife has actually learned how to wrap and massage me.

    I am flying to California in May for work and I am so concerned about my arm while on the plane, then how I am going to take care of my arm and put on my sleeve for 3 weeks. Yuck!

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited March 2011
    Maybe you'll have to take your wife with you....hey - I'm just sayin'.......Wink
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  • Suzybelle
    Suzybelle Member Posts: 920
    edited March 2011

    Barbe, love the new photo!  Too cute!!!!!!

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited March 2011
    Thanks! But you can never be "too" cute....can you?? Wink
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  • Suzybelle
    Suzybelle Member Posts: 920
    edited March 2011

    Never!!!!!!  Being 'too cute' is high praise in the south, Barbe.   It's totally unlike 'too much', which is NOT high praise in some usages.  Tongue out

    You are not too much, but you are too cute. 

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