SEs from hell !

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Anonymous
Anonymous Member Posts: 1,376
edited June 2014 in Alternative Medicine

Hi everyone

The SEs from chemo/rads are piling up and, frankly, I'm getting fed up.  

Neuropathy has been slowly creeping up on me for the past six months (started as mild tingling in right hand during the night) and it now feels like the pain cannot get any worse.  It started on the right side and has now invaded my left one.  If that were not enough, I think I may be developing lymphedema in my bad arm, unless the swelling is due to the neuropathy. I guess I'll have to get a dx on that too !!  More docs, more scripts.  Sick and tired of this whole mess. Sorry for the rant, but this is all becoming overwhelming Frown  I really really DO NOT NEED neuropathy (excruating pain) and having to deal with lymphedema !!!

Is anyone treating these conditions with natural meds?  Really crossing fingers that there are enough alt ladies who are still reading and can help me !!

Apart from the usual anti-inflammatories, bromelain, feverfew, etc. I can't seem to find something specific for nerve pain.  I've been taking miraculous boswelia for bursitis and torn ligament in my right shoulder (don't feel a thing from those) but the boswelia is not killing the pain from the neuropathy.  I would not even dream of stopping boswelia now for fear of all this pain.

How is someone supposed to function without the use of both right and left hand/arm  ??? 

A sister in pain 

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Comments

  • CelineFlower
    CelineFlower Member Posts: 875
    edited August 2012

    my heart to yours...

    i am sorry for your pain

    and rant away.. its good for you.

    i am in the "waiting game" ..and have no answers for you.. all i can offer are some purple happy bubbles..take as many as you need 

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

    Thank you CelineFlower, you are so sweet ! purple happy bubbles sound real good right now Lol

    Good luck to you and welcome with open arms, hugs Smile 

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  • NattyOnFrostyLake
    NattyOnFrostyLake Member Posts: 377
    edited August 2012

    Oh, Ruby, I'm so sorry for your pain. My neighbor takes R-alpha lipoic acid for her chemo-induced neuropathy. It helps some. She can tell because when she misses a dose her legs go crazy at night. Google neuropathy + lipoc acid for more info. The R kind is the strongest.

     My doc advocates ice for nerve pain--but that isn't convenient at night.

    The conventional threads are probably best-informed about coping with lymphedema. A lot of alternative women didn't have their lymph nodes removed. Hang in there. My Granny always said if you can get through August and January, things will improve--an old wive's tale but it often turns out to be true.

    Sending a hug.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited August 2012

    Ruby, nerve pain can be exacerbated by lymphedema, so reducing the amount of stagnant fluid in the tissues can provide some relief. Standard lymphedema treatment is called Complete Decongestive Therapy, and it involves a very gentle, directed massage (called Manual Lymph Drainage, or MLD) to move the fluid out of the tissues and back into circulation in your body. Since the lymph system is the body's garbage removal system, getting the fluid moving again is also protective against serious infection, fibrotic build-up, and inflammation. Gentle compression from layered bandages or compression garments (as well as some simple exercises) then helps prevent the re-accumulation of fluid. There are no drugs or surgical interventions called for in the treatment of lymphedema.

    Selenium (especially in the form of about three Brazil nuts a day) is considered both safe and helpful for encouraging lymph flow, as is staying very well hydrated and doing some deep abdominal breathing at intervals throughout the day. Toxicity is a possibility with overdoses of Selenium. Bromelein (fresh pineapple) is also good, for its anti-inflammatory properties.

    The guidance of a well-qualified lymphedema therapist is invaluable in reducing the swelling, learning how to keep it in control yourself, and helping you come up with personalized protocol for dealing with it. Here's information about how to find one near you:
    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    Be well!
    Binney

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  • Momine
    Momine Member Posts: 7,859
    edited August 2012

    First of all get yourself to a good PT who knows about BC. They do special massage called Vodder massage for the lymph system. The pain could well be from lymph issues, it can feel like nerve pain.



    Also, for anti-inflammation action, I found sardines, greens and hot peppers really useful. I ate those pretty much every day during and after rads to beat back all the impnflammation.

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

    Thank you so much Ladies for your kind responses, I very much appreciate your time

    NatKat, frantically googling yesterday, I found that Mohave Yucca is one of the most powerful and safest pain reliever ...don't know if it can be readily found...will go out looking for it as well as the R-alpha lipoic acid you recommended.  I did use ice and boy did it feel good !

    Horsechestnut is also recommended ("What do the Germans know that we don't? If you looked into the first-aid kit of most soccer teams in Europe, you would find a tube of horse chestnut gel, ready to ease pain, bruising, and swelling from sprains and other contusions or sports ­injuries")

    I found an old tube containing horsechestnut gel I bought years ago for heavy legs, just applied it where I feel the most pain and it is relieving it ! I also want to get Arnica gel, am debating about cayenne cream.... 

    I'm keeping my ginger, boswelia and cat's claw extracts at arm's length. 

    Also found that nerve tonics such as Skullcap (Scutellaria lateriflora), Cramp bark (Viburnum opulus) and Oat seed (Avena sativa) can be used to treat muscle weakness, nerve damage, and numbness.  Will eventually get those.  Will open up my new bottle of a silica solution

    I took a peak on the conventional threads but they embrace conventional meds and I do not want to go there unless I really really have to

    Thank you for passing on your Granny's wisdom Wink

    Binney, thank you so very much for explaining lymphedema in a nut shell.  I went to the forum yesterday, so much info to filter !!! I got discouraged.  Will definitely have to find out whether the swelling is due to neuropathy or lymphedema, the sweeling appears to be increasing Frownlymphedema sounds so terrifying.  I still have the horrifying picture of a woman in a waiting room her arm all reddish black and the size of her trunk.  So scared !! Logging off soon to call the onco so I can get referral to LE specialist.  Brazil nuts and pineapple on the menu Smile

    Can ice be used for lymphedema ? sure feels good on my oh so painful nerves

    Momine, Vodder massage sounds heavenly !  Sardines, greens and hot peppers also on the menu !

    Have a great day wonderful ladies 

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  • Momine
    Momine Member Posts: 7,859
    edited August 2012

    No, ice is a bad idea for lymphedema. Hope youmfeel better soon.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited August 2012

    Ruby, as Momine says, any temperature extreme draws more lymph fluid to the site, and you don't want to do that. If the coolness helps, try using a fairly thick cloth between the ice pack and your snin, and limit the time it's on you to under 15 minutes at a time.

    Hope that helps!
    Binney

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

    Very grateful to you Momine and Binney for the precious info.  I used ice on my bad arm yesterday and it did make it worse.  Will also be careful when showering not to let hot water touch the area. Could not get through to my onco, guess they don't work on Friday afternoons....

    Enjoy a great weekend ! 

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2012

    Ruby-

    It took me a while to figure out you changed your user name from Maud, but knew your "voice" sounded familiar. Just wanted to say that lymphedema can be managed without meds and a good pt is key. Feel better,

    Caryn

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012
    Exbrngrl : I can't think of any reason why someone would change their user name other than the fact that they no longer felt safe posting using their previous one.  And the reason why someone would come along and yell Surprise ! is beyond me and anyone's guess

    In any event, thanks for the advice

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2012

    Ruby/Maud,

    No harm intended, no ulterior motive. You are not the first nor will you be the last to change a user name. Doing so actually doesn't change much since it's a transparent process i.e. all of your old posts are still there under your new user name. My apologies if I upset you by "recognizing" you.

    Caryn
    ETA- will gladly remove my posts that point out this change if you would like.

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  • Thatgirl
    Thatgirl Member Posts: 276
    edited August 2012

    Request a TENS machine from your Dr. also vitamin b-6 helps nerve pain. You need a seperate dose of B6, more than whats in a multivitamin or complex b.

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