SEs from hell !
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 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
Comments
-
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
-
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
-
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.
-
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.htmBe well!
Binney -
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. -
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
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
lymphedema 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
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
-
No, ice is a bad idea for lymphedema. Hope youmfeel better soon.
-
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 -
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 !
-
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 -
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
-
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. -
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.
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team