Vent about Permanent Neuropathy

Has anyone experienced neuropathy in the head and face. I have been having a tingling sensation in the back of my head and now numbness in my face, around the nose and eyes. It feels like l have gargels on my face. I am wondering if this is neuropathy or something else. It has been two years since I had chemo, four treatments of the red devil and cytoxin, followed by 12 treatments of taxol.

I wanted to comment on B vitamins. I had the spectra vitamin test sent out (they drew the blood at the hospital ) it showed I was very low in B12 and Folic acid. This was while I was on a good lean meat high veggie eating. My dietician is confident that I have a gene defect called MTHFR where under methylated B12 and folate. Eventually I.might pay for the 23andme teat to confirm it. A clinic near hear offers methylated B shots so I started getting them with a B12 boost.I am not sure it significantly improved my neuropathy but I can type on my phone now. I found a good methyl B by thorne vitamin. I will probably swirch to that when this set of shots run out and I have my next blood work.

The best part of the shots are I now sleep like a baby. Don't have a ton of nighttime tingling (still on effexor) but I have had horribe insomnia for years and it's gone I sleep and wake up feeling great. I can't tell if the B12 improves the nighttime numbNess if it did it's more like from a 7 to a 4 Because I am taking be complex and B 12 I am nor sure which vitamin solved it but I am forever happy. It's been 3 months ans still sleeping soundly.

Peyton I am so sorry to hear about numbNess on the face. I would have that checked out just for your own piece of mind.

Warning I am having a vent and pitty party overy this hand neuropathy,survivorship and how to deal with all of it in my relationships and everyday life.

I am having a pretty terrible time of things right now. I could use some sympathy. Does your neuropathy impact your daily life? Your relationships? Carrying groceries? Typing ? Loading the dishwasher? Doing laundry and carrying it? Lifting things like a gallon of milk?

To catch everyone up. I have pretty significant weakness in my hands. Also a lot of tingling in my feet and hands. I have done all I can . I am now 3 years from diagosis and 16 months from surgeries. I drop things often and trip because I don't quite know where the step is or my foot doesn't do what I want it to. 16 months ago I had Carpal tunnel surgery even though it just showed borderline conduction issues under different circumstanned I would not have had surgery but I was desperate for any improvement. The surgery helped slightly but my hands are still weak and tingling . I have also gone to Ocupational therapy/physical therapy at the cancer center and hand therapy at the hand center. I have tried many drugs but none improved the weakness only made the pain tolerable..I have a lot of other issues from treatment it shot my liver enzymes through the roof so they don't recommend more medications in addition to tamoxifen. Though I am going to talk to the MO about cymbalta at my next appt.

I am on the younger side with two kiddos and a husband who is at the end of his patience. I haven't been able to continue my keyboarding heavy job and right now I am home. My kids are 11 and 13. In my house people put things everywhere because they are used to mom handling it. I stare at the obstacle course of items they expect me to pick up and carry everyday and I am just getting discouraged and frusterated.

To solve some of the problems I recruited my kids to do their fair share and I made some modifications to better my environment. I finally purchased lighter pans (it took me three years for my husband to understand that I could not lift the fancy heavy ones we had) I am trying to get a food processor because I can't cut vegetables with the knives but my husband loves our knives and thinks food processors are stupid. Its not that i care if he uses the food processor its that he thinks we have a small house and many of thr suggestion I make ro bettwr accomdate my hand weakness gt shot down hard. Then I am in a difficult position of going against his wishes and buying it anyway. He is the worst at leaving heavy pans or items right in the way. He gets resentful and angry with me that cancer changed me. I feel like we need some counseling to help him deal.with the after effects of what has happened. Our lives won't be the same but with some adjustments and accommodations they can vastly improve. He criticized me so much for the laundry that I put everyone on a schedule and now everyone is responsible for their own laundry including him. He doesn't like it but I can't carry hampers up and down the stairs and pull clothes in and out of the wash.

Suprisingly the kiddos have adjusted. I have one unload the dishwasher and one load it. I have each of them carry groceries for me and clothes hampers. I have them put their things away and keep them in their room so I have more "hand power" to put towards finding another job and keeping the house running and food made. I gave them each a laundry day and have them wash their own clothes and put them away. I have my sin vacuum as one of his chores as carrying the old vacuum cleaner up and down the stairs is painful and when I do my hand are so aggregated that it affects my ability to do other things. For my part I fold clothes , wipe counters, try to figure out meals for everyone, grovery shop. Things I can do by myself. The other things I try to do as part of my kids 15 minutes daily chores with their help carrying and moving things. I only gave my husband the job of his own laundry and taking the garbage out nightly. Beyond that I have stopped consulting him and involving him. I come up with an accommodation to make it so I can do my daily duties with my lmitations.

I have been married for 20 years( I am 45) and from my perspective before cancer I had a happy marriage. It's just my husband has turned into a very frusterated and resentful person. He gives a lot of criticisim over my inability to pick things up and well now it's degrading over time to criticism of our loss of how our intimate life changed after breast cancer and my appearance and well a total lack of desire to interact with me. I don't know if I can bring this back from the brink.

His criticisms are valid. I hate that my body did this to us and my solutions to the limitations have not been speedy. I found a physical therapist who was willing to train me and give me exercises with wrist bands so I could work my body without using my hands. It was a relief to have someone understand and work with my disability rather than keep trying to get my hands to grip the weights/bands and pull the pins in the exercise machines. I have a dietician who is helping me lose weight and also get my liver enzymes down. I am very disciplined in eating what she recommends because I am so willing to do anything to improve my situation. It's slow going she warned me tamoxifen makes it difficult to lose weight and it does affect the liver. She encourages me to just stay constructive and dedicated and over time she would help me get these liver enzymes down. It's just I don't know if I can get my husband to be patient. I am not sure how to get him over this contempt. Writing this I can see we need a third party to help us. So I will try to find a counselor.

Reading this I can see that my husband probably thinks I am using cancer and neuropathy as an excuse and maybe he thinks I am faking all this. I know he won't truly be happy until he has more intamacy and I am working not because we need theone but because he resents me being home. I am not even sure if I make that happendix he will not.still resent me.

I am having a rough time of it staying constructive under a less than ideal circumstance.

I am writing this because I am wondering am I crazy? Is anyone else with neuropathy/ breastcancer experiencing any of these lmitaftions.

guru, what you have been experiencing is horrible. Not only dealing with the neuropathy but the family issues..I do think counseling is a must do..if he won't go, you go...your whole world has been turned upside down. About the feet...I was thrown in with a group of wounded warrior for vestibular therapy to work on my beance. Most of the young men had lost both legs and some three limbs. I felt like a poser., but I could see that they could regain their balance even though they had NO feet to feel their way. That gave me encouragement. I still have balance issues but not nearly as bad. I have learned to use the back of my arm as a point for balance going down stairs or I find something I can touch to go down a curb. Last year I broke both my ankles at the same time, was in a wheelchair for four months , had casts and couldn't put any weight on my feet at all. I had to learn to use a transfer board to move from my chair to bed/toilet etc. So I have lots of metal in my leg and arm. I had to learn to walk all over again like a baby. This all came about from falling. I have learned there are many different kinds of PT and OT, so maybe you can find better ones.

Cudos for demanding your kids do their fair share. I had three boys so I called it batchelor training and when they took off for college they were happy they know how to do everything including using the sewing machine. My husband of course still doesn't do much. When he worked a demanding full time job, I could understand it, but now that we are both retired, it doesn't make sense to me but after 50+ years, I just contend with it.

Maybe a saber system would help you slice veggies..it helped me alot.

So sorry you are going through this ...sending hugs...

Thank you very much for your support and your ideas. Its difficult to find others who understand that accommodation need to be made to live our lives with the new reality we are facing. I read and re-read your posts over this week and reflected on the process of making my home life more positive. I am working with the local cancer support center to try and find a counselor that will meet with us. I think if my husband can vent a bit and also look at things from a different perceptive then perhaps he can move forward. He also has a serious medical condition at a very young age (42) and I think he is just generally frustrated with the direction our lives have taken the last 3 years. I really appreciate the place to vent and cry because it allows me to pull it together and remain constructive in the non internet world.

sweetp. I too like low ankle socks that are loose and do not bind. I know this might sound silly but consider trying the mens hanes no show socks. If they fit your feet you may really like them. You are actually wearing some of the pairs of shoes I also like. New balance is my favorite. There are some really good pairs of AHNU brand but they are expensive and narrow. They only fit a certain foot but are light weight and wear all day without too much fatigue. the swelling at the end of the day or just from walking and standing on cement can be a real trouble. I don't have good ideas for it but if you find a way to elevate your feet for even 15 minutes at lunch it helps me.

Does anyone here like Beets, Beet Greens, or leafy green vegetables? I have read several articles that these foods significantly help peripheral circulation. I am working to try to get more blood flow to my hands and feet.

SweatPea- I have size 11 feet and have always struggled to find comfy socks! I second the notion of trying men’s socks - but if you’re a size 10 or above, don’t buy the “size 8-12” packs as they’ll be tight. Go for the “size 10-12” styles. I like the Nike padded low sport socks. I wear my socks inside out - the smooth outside is more comfortable on my feet.

As for shoes, I like Vionics for the orthotic fit as I’ve found good arch support make my whole foot more comfortable. Also have a pair of Adidas sneakers with a very thick memory foam insole that is v v comfy.

I wear 11 now. Difficult to find shoes that fit. My Mephistos have lasted over 20 years and we a bit big before, but fit nicely now. SAS shoes are deep enough for orthodics but then so are some $15 shoes I found at Walmart.

Well, I guess I should have looked for this thread earlier. I've been reading and seeing many bits of myself in some of your posts. I was diagnosed originally in 2012 with Stage IIIB IDC, ER+/PR+, HER2-. Went through surgery, chemo and radiation and was "good to go." Then in 2016 got the flu that wouldn't go away, and a chest x-ray caught spots on my lung and humerus, so I was sent for CT. Ended up in a whirlwind of being diagnosed Stage IV with MANY mets to lungs, liver and bones. Did some radiation for some of the bone areas and went on Xeloda for the rest. Miraculously, all of those mets resolved and I was stable for about a year. Then I started to get weird tingly sensations on the front of my tummy, then my butt, then down one leg, and then up the other. The tingling got worse and "deeper" and became numbness, pain and tingles all at the same time. It kept getting worse and I eventually lost most of the feeling in my feet, my balance, and so the ability to drive, walk for more than about 150 feet at a time, or stand for any length of time. I now use a walker or wheelchair. I went on disability just before the neuropathy set in, but am glad I did.

After much guessing at what was the cause, seeing a neurologist nearby, and then a trip to MAYO to see a neurologist there for a second opinion, it was finally determined it was delayed radiation neuropathy, which I had never heard of. Apparently, you can get this up to a year or two after having radiation. Basically, the nerves along my spine were damaged at the time of radiation, but it sets in later. I had had the usual peripheral neuropathy with chemo back in 2013, and am having some in my fingers again now with new chemo, but this is something more. As many of you have described the sensations, it is an awful bundle of pain, tightness, tingling, hypersensitivity, burning, itching, numbness and cold feelings all at once. Who knew you could be numb and hurt at the same time?

The bad news is there isn't much you can do about it except try to relieve the pain. I am on gabapentin (and have been for years) along with MS Contin and Oxycodone for breakthrough pain. It doesn't cut it, but it helps. I've tried acupuncture to no avail, although it DID help with lymph circulation in my legs/feet, which has been affected due to not moving much. I have gone through OT, PT (still continuing that), and have made MANY changes to my home and in my life. I can still make it down the two steps to the garage to get in the car (with walker and help, of course), but I can no longer go upstairs where my bedroom and a newly remodeled bathroom are. I have my ex here with me, kind enough to take care of me, cook for me, take care of our pets, drive me everywhere, and get me out of the house for small excursions. I can't go to any of my friends' homes any more because they all have steps or rough ground. I got a passport just before this set in, but cannot travel where I'd like to...or at least it would be a VERY different type of trip with many limitations if I did go. I'm really having trouble getting used to the idea that this is my life. And I'm always trying to find ways to make things easier, but every little thing is difficult and takes me forever to do. My cancer seems secondary to me now, even though I have had recent progression to the mesentery and am on IV chemo (second one so far.)

I'm not writing all of this for any pity or anything. I know you guys get it. But I thought it might help some of you...perhaps some of your neuropathy is caused by the same thing?? For me it's all about comfort and stamina. I save up my energy for necessary or wanted excursions, but can only do one thing in a day usually. I wear loose, soft clothing due to the hypersensitivity of my abdominal area. The moo moo is my friend! I wear comfortable but stable shoes and loose socks. I have found things I like to do with my hands, sitting down. I embroider, color, paint rocks, read, watch TV/Movies/Series, listen to music, etc. Any advice on things you've tried would be most appreciated! All the best to all of you!!

bbeck, I was on neurontin too for a long time. It didn't help much but Lyrica does. At least for me.

They never figured out what caused my neuropathy either, but I didn't have radiation. They think I might have had paraneoplastic syndrome.

I will also add that recently it was found that I received no benefit from the chemo and that is upsetting thinking all of this could have been avoided but I console myself saying that my doctors and I made the best decision based on the info we had at the time. I am grateful for the advancement of science and that others will be spared these horrific life changing SEs when chemo serves no purpose. I often remind myself of the women before us who underwent these radical MXs and no option for reconstruction. In some regards I should feel blessed?

Sorry I haven't posted for about a month. Been pretty busy at work and my brain just wasn't in it to look at all of your posts.

Oxoner, Thank you. I checked out the Hush Puppies website and there are several examples using the bounce technology. I think that I'll check that out. Prices seem O.K.

bbecksoon, WOW! You've been through so much...sending hugs your way. My health care pros aren't too much help, though they are trying. It's as if I have to wait until I can't walk before something else may happen. In answer to neuropathy, I was prescribed PT which was nice while it lasted but did me absolutely no good as far as the neuropathy went. The main focus was actually on my back (small hole near the L5).

NotBroken: Sorry that it's all hitting you like that. I recall my doctors all telling me that the chemo, surgery and radiation would all be worth it. My MO was particularly glass half full and always listened but usually dismissed side effects saying that the majority doesn't experience them. Took me months to get them to let me get a DEXA scan. Luckily I got that right before the radiation began.

My feet are still numb in places, cold, a bit painful, but I push through while I walk and stand at work. I'm noticing more "accidents" lately; twice in one day I lost my balance and scraped my leg on a stupid anchor container's handle that was sticking out/open and also ended running into an edge of a metal shelf that did a number on my surgery arm. That was all temporary, but at the time, hurt like the dickens. I had radiation after chemo which focused on the place of origin (left breast), left underarm nodes and left side nodes in the neck region. My follow up was last week and I felt weight shamed by the RO, wish I hadn't gone for that visit. I weigh no more than I did before my cancer treatment began, but that isn't good enough. She wants me to cut out sugar and carbs. During Chemo, I lost about 20 pounds but put back almost all of it since then.

As for pain, I'm afraid to take prescriptions due to side effects that may keep me from working. There may come a time when I may need it, not there yet. I wish you all good luck and hope that improvements happen for you all.

It's been forever since I have posted here... but do read occasionally. I am intrigued by the beets/beet greens helping with circulation. I love both, but somehow never knew that. I had chemo six years ago, and my oncologist quit after 6 rounds (I was supposed to get 8) because neuropathy so bad. Affected my hands, feet, muscles. Hands and feet numb.... all the way up to my knees, originally. It has gotten much, much better but not 100%. Hands and fingers okay - I have most mobility but never got my true penmanship back. (not a big deal, I know) My left foot is still numb. No tingles, no pain, just numb. Right foot is totally okay most of the time. Every once in a while I get out of the blue, tingly nervy pain that shoots through them (my feet) and I am SO excited, just to have some feeling. The numbness is the worst. I do take Lyrica every day - just one in the morning, and if I forget I am in huge trouble. I am very active - - hike, run quite a bit, bike, etc... and I find the more active I am the better my foot is. I do get monthly infusion of Herceptin, and the week after the infusion is always the worst. I know oncologists say that Herceptin doesn't make neuropathy worse, but it does.

On the sock subject - I rarely wear them. I literally wear all of my boots, booties, any kinds of shoes, etc.. with no socks. When I run or hike I wear VERY thin socks. Lulu Lemon has some amazing thin socks. Very expensive, but worth it. I find anything else makes my feet swell. 

Has anyone tried a TENS machine? They used to be very expensive, but you can now get them in the pharmacy at a reasonable price.  Even  though I don't have pain, I found the electric currents seemed to restore the feeling in my feet..... I love using them. Maybe it's just in my head... but I  feel like they are pulsing my nerves back to life, and again - I have come a long way in 6 years! 

I wish all of you luck...I will check back more often. I'd love any additional advice, and you all seem to have some good ideas. There are some days when I can forget that I have it (completely numb left foot) and some days when I just want to scream. Mornings are the worst - before I have had my one Lyrica kick in. I would take more of it, but it made me totally gain weight (another little tidbit that my oncologist neglected to mention.... I had to watch the Lyrica commericals on TV before I made the connection and realized why I had gained back the 30 pounds I lost in chemo, plus a lot more!) 

Thanks for letting me vent! Hang in there, and take care.

XO - Andi 

Maryna - good to see you but sorry for your troubles. I agree about traveling. Who know how long we'll be able to continue. I am no longer too proud to ask for a wheelchair if I get overwhelmed.

Just a comment about neurologists - mine is a guru at a major medical center. Up front 5 years ago she told me it might get some better, but that meant better from where I was after chemo and not back to before cancer. She said the only help she had to offer is for pain - nothing for the numbness. I just saw her for a follow up 4 years later. My fingers gradually got most of their feeling back most of the time. At least I can do up my own levis. The feet are still mostly dead, sometimes running up my calves. Unfortunately her answer is still the same. There has been no new developments for treatment to bring back the feeling lost from CIPN.

Andi - I did see a doc who is applying for a grant to run a trial to apply electricity to the feet - like a TENS unit. They have found that there is some improved feeling with diabetic neuropathy BUT, once you turn off the the current the feeling apparently doesn't last. It will be interesting if they get the same results with chemotherapy induced PN.

Blownaway - the bone pain might be from tamoxifen? I'm taking duloxitine (Cymbalta) also and it seems to help with the neuropathy as well as my psych, I've had good luck with that and Tumeric and was able to get off gabapentin. You might try Claritin once daily for the bone pain.

Hi, I wanted to ask you ladies and men of course, if you have neuropathy in places besides your hands and feet. I iced my hands and feet when I was doing TCHP x 6, then I did H&P up until the year mark. My neuropathy is on both sides of my neck, back of upper legs and inside of upper arms. When I really get tired I can feel my body hum at night. I did not start taking Gabapentin til after I finished all treatment. It seems to be getting worse. I finished up all treatment on August 8 of this year. I am wondering if this is going to be permanent.