Vent about Permanent Neuropathy

I have also been encouraged by my oncologist to try acupuncture. It definitely helped me get through the healing process post-mastectomy and reconstruction surgeries ten years ago, so I think I should give it a try for this. Please keep us all posted on how it goes for you, Liwi.

Checking in here...

Hey Minus~ I am sorry to hear about the numbness. Also hearing your gratitude about NED! My neuropathy worsened considerably months after chemo...I think that the joint pain in my ankles from Tamoxifen makes it feel much worse.

My PT has me doing balance exercises daily. Have you tried those?

Lulu~I am doing acupuncture and I think it is having a positive effect.

Liwi~ It makes sense that we need to allow time as it has taken time to develop.

My naturopath has me taking Glutathione, a powerful antioxidant. ( Neuropathy is caused by oxidative stress) I think this supplement is helping!!!

I just posted on the other neuropathy site. My bare bones tablet will not cut and paste and I do not want to rewrite it here. yes, it would be nice if the two forums could be combined. I see many of us visit both sites and it is mostly redundant.

I mostly say the same thing over and over, and while venting usually is not helpful and only makes me feel worse, somehow sharing here I find very therapeutic. Neuropathy is not something I ever mention to anyone as I feel it comes across as hypochondria so I thank you all for your posts and sharing of your thoughts and treatments.

I DO feel somewhat angry that chemo was recommended for stage 1A dx and yet none of my doctors mentioned it as a possible side effect, nor the permanent effects on the texture and quality of my hair. I asked the right questions but only told that the only SE would be I would lose my hair but it would grow back. My hair never grew back the same, it is stringy, thin and limp, and I still suffer from the crippling neuropathy. Doctors and nurses even mocked me when I wanted to ice my fingers and feet and said neuropathy is extremely rare and should it happen it is very temporary and icing is just a myth so stay off the internet.

I was slammed particularly hard by this, perhaps because I was going thru a particularly bad time prior to my DX and I had extremely poor nourishment, in fact I was emaciated. I had periods of heavy drinking and a bad back which may have damaged my nerves so I may well have been more predisposed to the harmful effects of the chemo, but doctors were well aware of my medical history and perhaps that should have been taken into consideration before recommending chemo to a stage 1A patient. Additionally because of the blockers my glucose levels are now high and I am prediabetic which could also explain the progression these last few years. Having said all that I am very happy to share that over this last month my neuropathy has greatly improved by perhaps 25%. The only thing I can attribute this to is perhaps the reduction of my stress levels. Maybe this is just a fluke but I hope it continues. I am more hopeful than I have been in a very long time.

Hang in there my friends. Perhaps medical science may find a cure for us yet but in the meantime try to keep your mind off our aliment and do the best we can to give our bodies the tools to heal.

I had my initial evaluation for post-chemo PT last week and failed all three balance tests, landing in the red zone. I'm trying to cram in as many appointments as possible, but the rehab facility is heavily booked as others are also trying to maximize their insurance benefits before calendar year end. I'm very concerned about how these balance issues will affect my ability to teach dog obedience classes. As my stance and gait have changed with the balance issues, I'm having pain in my feet, not nerve pain as many of you have experienced , but rather feeling like the bones have collapsed making me more flat-footed. With the physical therapy, lymphedema treatment, mammogram, breast cancer surgeon routine follow-up plus trying to get in for a spinal injection for my herniated disc, I don't see how I can work in a podiatrist appointment, if there is even an available opening. At the same time, I'm grateful that my most recent tumor markers didn't reveal anything scary.

Lyn

Interesting that it's not just me with "flapper feet," NotBrokenJustBent. At my first PT appointment today, the therapist said besides balance, we'll be working on strengthening the abductor muscle over my hip joint that was replaced in 2007. During my 6-minute extended walk test, I had to take a break because of cramping in that area. The leg length discrepancy has been an ongoing problem so I hope the exercises help.

I saw the Flexi Touch rep this morning and my pump is already en route. Between my misdiagnosed herniated disc and inflamed SI joint issue and the cancer stuff, my bedroom hasn't been cleaned in two years. I'm embarrassed to have the trainer come here, but I'll just have to focus on tidying the area where s/he will be setting up the equipment. After having what seems like a bazllion people see my breasts, what's a little more humiliation?

Lyn

I had the terrible sinus problems..constant runny nose (clear), and crustiness inside nostrils on the Herceptin. The runny nose lasted for a couple months beyond the last Herceptin (I had H for one year)..but the crustiness continues today (almost four years later). My recent MRI showed a benign cyst on my right nasal passage. I never had sinus problems before.

I can only say that I always have tissues on hand.

Praying you remain NED!

But the SE's sometimes remain after treatment. My neuropathy never fully resolved..maybe about 85% or so. I imagine it will be an issue again for me since I am due to begin Taxol, then on to H& P indefinately.

never, i have had sinus surgery for polyps twice,10 years apart. My most ent recommended using saliine every day to keep sinuses clear. Easy and harmless to try and i can highly recommend it

VLH - I feel like my benefit for neuropathy from therapy was OK but not fantastic. Like you mentioned, balance & core-strength are critical issues. Unfortunately that doesn't fix dead feet.

As for going it alone, for me it depends on whether I will actually take the time & do the work. It's a matter of forming new habit patterns and absolutely putting exercising FIRST. Unfortunately it's really easy for me to to say 'oh I can skip today & catch up tomorrow'. When I follow through, I think you can certainly get a similar benefit. I did join a gym and try to walk on a treadmill several times a week. That is on hold while I get ready for the holidays. Did I tell you how easy it is for me to procrastinate? I do go to Silver Sneaker's classes twice every week, and have flirted with Yoga. In the summer I do water aerobics 3x a week, and I think that's the best of the lot.

Could try doing it on your own after the first of the year and go back to the PT if it doesn't work out?

Minus, VLH: This disease has reminded me that I must take care of my Self. Despite pink propaganda, I cannot take care of everyone else at the same time. We can take a break from the holiday madness and give ourselves a half hour of fresh air and exercise each day.

Lanne. Welcome, agree on getting good shoes! I am picky on shoes also and they make all the dif. I take a mild gab but not sure it helps me. It is a funny pill.

Well plan on a visit to gym today, for me that is my upper, i am also gonna try to hit the coast for lunch, been a while since i did that, those two things are a super upper and it is in the 60s today!

Addidas makes slip ons? I need to look into that!

If you are in pain, by all means see a neurologist. If not, there really isn't anything to make it better. The worst thing for me is balance issues since my feet are dead lumps. My PCP recommended I see a doc to test for vestibular rehabilitation that Lisa mentioned. It may do not be a fit for me but she thought it worth exploring.

Muck~

I am seeing a neurologist. He has done the testing needed to rule out other medical conditions. He has also determined the type of neuropathy I have. Right now we are trying to figure out how much Gabapentin I should take and whether or not I should try Cymbalta, which has been shown to be successful in treating neuropathy.

I want to be sure that I am followed in this way because my oncologist focuses on cancer, not neurological disorders. Seeing a neurologist is also helpful in providing documention for my insurance company. Due to the neuropathy, I receive disability income

My PCP put me on Celexa for anxiety issues but I am not tolerating it well and will need call her tomorrow for another alternative. I was just online looking at options and I see Cymbalta is an antidepressant but also prescribed for anxiety, neuropathy, and low back pain. Hmmmmm.....could it be possible to find a magic cure for all my ailments in one little pill? I am hopeful and will get my PCP's thoughts. I am hopeful.