What does your lymphedema FEEL like?

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carol57
carol57 Member Posts: 3,567
edited June 2014 in Lymphedema

We talk a lot in these forums about swelling, and the words 'heavy,' 'tingly' and 'aches' pop up quite often when we describe our LE symptoms. In the past few days I'm noticing some new feelings in my arm, and I'm wondering if these are new symptoms that suggest my LE is getting worse.

So far (about 11 months post-bmx/SNB and 7 months since LE dx), I've been having an easy go with LE compared to many, with infrequent upper-arm and one spot of truncal swelling that's easily controlled with MLD and mild compression. I'm to the point of wearing compression only for heavy activity such as resistance training and for flying, or lately when it's been stinkin' hot out.

But in the past week or so: Warmth from the inside out; a new spot of numbness; and what I swear feels like muscle soreness--only it developed during a few weeks of nonstop travel when I was not lifting weight in the gym, and I can think of zero reason I might have over-used that arm. Plus, the warmth/soreness is coming from a different area of my upper arm than where I feel the usual heaviness, ache, and tingling. And I feel fatigued from my wrist to my elbow. Today I lifted weights in the gym for the first time in a few weeks, backing the weights down considerably, and that has had no effect good or bad on my crazy sensations. In fact, I had planned to start this thread before heading to the gym but got side-tracked.

I don't see added swelling and do not measure it with my tape measure.  No redness or other sign of infection, and nothing like a cord that I can feel. Does any of what I describe sound familiar as a warning of a big LE flare? What does everyone's LE feel like? 

If this is an early warning signal, I'll call for an appointment with my LE therapist now, because from experience I know I cannot see her for a week or two. Wondering if I should make that pre-emptive call, or if I'm just letting my imagination take me places I do not belong.

It's so easy to jump to the LE conclusion, because LE moves in such mysterious and changeable ways.

Thanks for any 'LE feels like...' you can share.

Carol

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  • sushanna1
    sushanna1 Member Posts: 764
    edited May 2012

    Carol,

    How long ago was your surgery?  Ask your doctor if it could be nerves regenerating.  I developed strange sensations in my upper arm a couple of years post surgery--tingling as if my arm had fallen asleep and occasional sharp pains.  Imagine the pain you have when you accidentally hit your "funny bone."  It went on for months.  The sharp pains were completely unpredictable and did not seem to be related to specific activities or lymphedema.   It turned out that it was probably related to nerves regenerating (or trying to regenerate).  The pains and tingling stopped as suddenly as they began and areas in my upper arm that had been numb since surgery had some semblance of feeling again. Good luck.  

    Sue 

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  • BeckySharp
    BeckySharp Member Posts: 935
    edited May 2012

    Carol--I would err on the side of caution and make the appointment.  My feelings were that my arm felt heavy, achey.  Tingling started while I was waiting on appt.  Since it was my dominant side and my right arm was always bigger than my left measuring did not help me.  I had no premeasures.  Meanwhile keep up the MLD, MLD exercises, deep breathing, hydration, yada, yada, yada.  You know the drill.  I hope it is nothing but you will know how to manage it.  Slow down.

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  • Marple
    Marple Member Posts: 19,143
    edited May 2012

    Carol, with the "non-stop travel over the last few weeks" you would be very wise to go see your therapist.  The fact that your arm is feeling differently might be an early warning that it's not too happy.  I'm assuming your travel meant flying?  I hope it's nothing to worry about but heck, with LE we always worry.  Good luck, gentle hugs. 

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  • carol57
    carol57 Member Posts: 3,567
    edited May 2012

    Great thoughts from all of you.  I'm in love with the idea that nerves may be regenerating (surgery was 10.5 months ago), but of course, it certainly could be LE giving me grief. Marple, the travel did mean flying, and lots of it. I was on 14 flights in three weeks, with four of those being 3-4 hours; the rest under 2 hours.  That was a lot of flights in a short window, but I fly often and this is the first time I have had lingering aches afterward. I take tons of precautions--drink plenty of water, get lots of speedy walking in between flights to stay active, arm pumping, belly breathing, and neck clearing in flight, plus wearing sleeve/gauntlet.  And I am extremely careful about hefting luggage with that arm. Even so...I'll take your common sense suggestions to heart and call, then wait my turn for an appointment.

    Hmmm. I was feeling no ache in my arm on awakening this morning, but now that I'm typing at a keyboard, there it is.  That's wrist movement only. Go figure.  Well, I guess that's the problem with LE.  You can't figure it out!

    Carol

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2012

    carol- I've had all the symptoms you've described, except for the warmth, in my arms with my LE.  I'm new to all this but I swear there's no rhyme or reason to LE.  Some days I'll wake up with my arm feeling like that and have done nothing stenuous, and have just done a MLD appointment with my LE PT the day before, too.  Then other days when it's been awhile since I've seen her I have no issues at all.  This is one crazy disease.  Like others have said I would make the appointment.  You can always cancel it if you end up feeling better.  And I hope you do.  :)

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2012

    Carol, I'm trying to calculate whether you had LE last summer or if your initial symptoms were early Sept. I know you've heard heat does a number on LE, and if this is your first summer with LE, it could be why it's not happy right now. With the increase in heat/humidity, your nip and revision surgery not long ago, and recent cold, your lymphatic system might be a little overloaded right now. Was the scratch you were monitoring on this arm? Glad you're making an appt with therapist since it takes a while to see her. In the meantime, I would be careful with the weights, and do all the proactive things to minimize symptoms, including elevating your arm when sitting on sofa or on pillow while in bed.




    My trunk felt hot, burny and numb with early involvement. My upper arm had more of the heavy, tingly feeling, some tingling extending to elbow. When my forearm became involved, it felt sore and achey. The slight extra fluid made the arm feel tight, which gave the sensation of muscle soreness or bruising. Once the fluid went down, that sensation disappeared. That is actually my "warning sign" that my arm is not happy. Typing will make it ache; I assume it is the repetitive movement. When my hand swells, it feels more hot. Makes no sense they all have different sensations. I don't need to have significant swelling in my forearm for it to become quite sore and painful. In my experience, hot and tingly was the last stop before swelling. My forearm went crazy in the 2-3 wk time I was waiting for my appt. Please don't second guess what you are feeling. The worst that can happen is you're wrong.

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  • carol57
    carol57 Member Posts: 3,567
    edited May 2012

    Tina, wow, that's an amazing description of what you feel before/during LE attacks.  Thank you for being so detailed.  My initial symptoms started at the end of last summer, so after the worst of the heat, and I was still recovering from the bodacious diep recon, so I was not very active and did any and all exercise in my air conditioned house.  And yes, same arm where I gave myself a fat garden scratch several weeks ago.  All roads point to LE, don't they?

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