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Does Any Member Have Peripheral Neuropathy Or Lymphedema?

Discussion in 'Health & Wellness' started by Lon Tanner, Oct 22, 2020.

  1. Don Alaska

    Don Alaska Supreme Member
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    So sorry to hear that, @Beth Gallagher
     
    #61
  2. Faye Fox

    Faye Fox Veteran Member
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    Scuffle? :oops: I thought it was a dust-up but what do I know? Maybe starts as a dust-up and ends in a scuffle. :confused:

    I use compression arm sleeves all the time. I must confess I do feel like a commie because I am not exercising my right to bare arms. :D I have them for the upper arm and lower arm. I usually wear both together. I have both mild and heavy compression. For things like vacuuming I use the mild but for yard work the heavy. I have kept the heavies on for as long as four hours before my whimpering began. :( They have some now made to look like you have an arm full of tattoos. :rolleyes: You could look like a biker chick. :cool: I am a firm believer in compression garments. They removed 24 lymph nodes during my cancer surgery because they thought the nodes would test negative. If they had suspected positive, then it would have been 36. I use a high-waisted sports brief that keeps compression on my abdomen and puts the quietus on any lymphedema that might entertain the idea of taking away my washboard abs. My abs are washboard because the super compression briefs have a 6" high vertical ridged band and leave deep vertical grooves in my abs which gives the appearance of an old fashion washboard held sideways. Lying down, after removing the said garment, my midsection looks like a newly prepared row crop field in the Panhandle of Texas. :eek:

    Give the compression sleeves a try. I understand the sensory issues but maybe you could overcome that in time. Since attempted lymphedema in my right arm is due to vascular impairment, I discovered my high neck compression sports crop top bra, which shows no mercy to my upper pectoral muscle as it comes from under the arm, has really helped my right arm vascular impairment thus thwarting the lurking lymphedema. o_O When I whine about the over-boob muscle soreness, :mad: my doc says that is a good thing and a small insignificant whimper compared vascular impairment resulting in lymphedema. :)

    Sorry to hear you didn't avoid this pothole that plagues many post-cancer survivors' road to New Normalsville. If something isn't trying to kill us, it seems something is happening making us wish were dead. :mad:
     
    #62
    Last edited: Aug 11, 2022
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  3. Marie Mallery

    Marie Mallery Veteran Member
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    Oh goody another illness to deal with! So far just the tops of my feet and outside lower legs are numb.
    This just started a couple months ago with outside of legs feeling a little numb.
     
    #63
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  4. Faye Fox

    Faye Fox Veteran Member
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    Consider doing some foot stretches that will help the tarsal tunnel stay open. A monthly leg massage with hot rock therapy and pedicure has really helped me. I have all three tunnel syndromes, tarsal, cubital, and carpal and so far have avoided any surgery using daily stretches and monthly massage. Don't let it get worse.
     
    #64
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  5. Marie Mallery

    Marie Mallery Veteran Member
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    Thanks Faye and I've been doing that too. Lately I've noticed that my left foot hits the ground harder when I walk, it seems to come down on the floor louder than the right one, if that makes any sense. A thump for past several weeks. I'm doing some exercise and need to order those compression sleeves yall talk about.
     
    #65
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  6. Marie Mallery

    Marie Mallery Veteran Member
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    I listen to these guys also go to sites like Mayo Clinic,

     
    #66
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  7. Beth Gallagher

    Beth Gallagher Supreme Member
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    Isn't that the truth?? Sorry you have to deal with swelling, Faye. I didn't realize you'd had lymph nodes removed during your surgery; were those in your axilla? Are your sleeves prescription? The ones I have tried are full arm, from wrist to axilla... and they are AWFUL. Thick, hot, and uncomfortable. Just what I want when it's 103 degrees and high humidity. Also, since I have some swelling in my ring finger I probably should wear a compression glove to make sure the arm sleeve doesn't push more fluid into my hand. :confused:

    For custom sleeves, Medicare does not pay so then neither does my "advantage" plan. The sleeves are very expensive... like $400-$800 and a person would need a couple of them because they get dirty. Oh... and the gloves are even more expensive since they custom fit each finger. I don't want to spend the money on something I know I'm not going to wear. I'd rather learn how to "wrap" my arm when necessary, like at bedtime. I've already learned the self-massage techniques to help move the fluid around.

    I suppose what annoys me the most is that they removed all of my lymph nodes under my right arm and NONE of them had cancer cells. So now I'm stuck with a lifetime of this crap. I just want to yell at the surgeon... "just look what you've done to me." :( Anyone who has had any lymph nodes removed or damaged has a lifetime risk of LE; even if it's a single node. (I had 32 removed.:confused:)

    Mild lymphedema is barely noticeable to other people but it is very uncomfortable. The arm feels heavy and has a low-level ache and stinging; kind of like having a toothache in the arm all the damn time. If the LE gets worse, the affected limb can swell to 3x it's normal size, so I definitely want to avoid that.

    Anyway, boo hoo... poor me. More doctor visits and "self-care." What a crock, people.
     
    #67
  8. Marie Mallery

    Marie Mallery Veteran Member
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    Beth I hate you had to deal with that monster Faye you too of course.
     
    #68
  9. Beth Gallagher

    Beth Gallagher Supreme Member
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    Marie--we are all the the age where we have to deal with something. I know you have your own health issues and none of them are pleasant. I moan and groan but at least I'm still here to annoy people. :D
     
    #69
  10. Marie Mallery

    Marie Mallery Veteran Member
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    I fear mine is coming after all the years of smoking and now my first cousin has lung cancer like his mother had and her sister my mother had and both passed from.
    Good we have each other here to vent to.
     
    #70
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  11. Beth Gallagher

    Beth Gallagher Supreme Member
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    Thanks, Ken. Surprisingly, not many people are familiar with LE until they've had cancer treatment. (Radiation can also cause damage to lymph nodes/channels.) Some people are born with lymphedema; they have "primary lymphedema" and sadly there hasn't been a lot of treatment available for them. You may have seen someone with elephantitis in the legs... grossly swollen limbs. They were likely born with LE. Lymphedema is rarely life-threatening, unless a person gets an infection (usually cellulitis) from it.

    Only recently has lymphedema come more into the public eye, since the actress Kathy Bates has LE in both arms after breast cancer treatment and has become a vocal spokesperson for LE. It's a disgrace that compression garments for LE are very expensive yet not covered as a "medical necessity" by Medicare. Also, most people have to fight their insurance company to receive any benefit for treatment which is criminal IMO.

    2 minute video...

     
    #71
  12. Beth Gallagher

    Beth Gallagher Supreme Member
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    My husband is also a smoker and I worry about him every single day. You'd think after driving me to MD Anderson for an entire year, watching me go through chemo, radiation, and surgery, he'd put them down... but he doesn't. :(
     
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  13. Marie Mallery

    Marie Mallery Veteran Member
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    I understand what you're saying we smokers hear it all the time and yes, it is something we chose to do knowing what it can do to you. I've always considered myself to be a strong-willed person but with cigarettes not so.
    It was a thing most of us started as young teens '13' and quit several times but went back.
     
    #73
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  14. Marie Mallery

    Marie Mallery Veteran Member
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    Our medical system saves many lives but it also takes many and causes suffering.
    This is why it is vital to be as involved in your treatment as you can and ask lots of questions and yes it makes some doc's mad, but then they don't have to live with the effects of their treatment if it goes wrong. I did my research but still ost to their greed. I was not going to get stents after researching it. But I was lied to and told they just want to go in and make sure heart is ok, so I signed the form not knowing it said if they found blockage, they could fix it.
    I'm living with two un-neesasary treatments tone cost me part of my vision,the other non reversal heart impairment.
     
    #74
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  15. Beth Gallagher

    Beth Gallagher Supreme Member
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    The 'problem' with a lot of doctors (particularly specialists) is that they are laser-focused on their specialty. For example, my medical oncologist is a breast cancer specialist... his focus is the cancer. Apparently the side effects of treatment (LE, perpheral neuropathy, heart problems from chemo, internal damage from radiation, etc., etc., etc.) are not his "concern." He wants to cure the cancer and then the after-effects are left for the patient to deal with. Sounds harsh but that's the reality.

    Sadly, a lot of women don't even bother to complain about after-effects of breast cancer treatments because doctors brush them off. They are told to "deal with it" or something similar, but their quality of life is crap. Most patients (including ME), believed that after the harsh cancer treatment was over that life pretty much returns to normal, but that's a crock. Your life, your emotions, and your body are never, ever the same again.
     
    #75

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