Vent about Permanent Neuropathy
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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
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Hi
I was wondering if anyone attributes their neuropathy to aintenance HP treatment? I had THP for 4 cycles and finished in July. I have been on HP ever since. I am oneweek out from the last HP and have had a return of numbness, tingling and some burning/ shooting pains in hands and feet. When I say return- Taxotere was dropped after 4 cycles because of neuropathy symptoms.
So it went away after I stopped T and now 4 months later is back?
I am currently NED and teach full time. I am very worried though about worsening symptoms.
Could this be Perjeta to blame now.
I also suffer sinus symptoms. Any advice or input would be appreciated.
Liz
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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.
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The neuropathy took a nasty turn and I could just cry.
My legs have been very shaky and weak and I have much to do but I am afraid to get up off the couch. I am so discouraged. Days like this my mantra is "Just shoot me". 0 -
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
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I've been doing physical therapy for a couple of weeks now & feel that I'm getting stronger. Because I'm having serious back issues that affect all my other activities, the therapist is working on strengthening my back / core as well as my balance problems. Of course, the two often go hand-in-hand.
I know it's difficult to quantify, but how much improvement do you feel you derived from physical therapy? Facing a new insurance year, I'll need to mostly work on my own. The therapist (love her!) has been gracious about providing printouts of my exercises with tips & cautionary notes about my form to help my self-care program. Thanks!
Lyn
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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?
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Thanks for the input, MinusTwo. Having dealt with severe Fibromyalgia and now using a lymphedema pump an hour a day, I know it will be hard to be self-disciplined and stay motivated. I've scheduled a few PT sessions in January in hopes of finding a balance between cost and not backsliding.
Lyn
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NotBroken: Indeed! :-))
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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.
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Hi Lovelies,
I'm new to this board. I finished chemo May 2017 (12 rounds of Taxol then 4 rounds AC) and started getting PN in my fingertips and feet about halfway through the Taxol. MO referred me to their acupuncturist - tried about 6 appts and it seemed to help but I stopped the week before BMX surgery - just too much to deal with. Haven't been back tho. My fingertips have resolved (the very tips feel a teeny bit numb) but my feet are still very uncomfortable. The “pillow" feeling has moved from the balls of my feet to under my toes, I have the burning feeling, but I have regained the ability to feel temperature and touch on my soles. I can walk for a couple of hours max and then it's too uncomfortable. I have good days and not so good days like most of you.A few questions and a shoe recommendation:
I've been on 600mg of gabapentin. It helps a lot but does make me sleepy. Can anyone comment on the slow release formula? Does it work better or worse that the not-slow-release version? (I also rely on Gab for pain/skin sensitivity I'm having with my %#*{€ tissue expanders) (And joint/leg pain from Letozole also sucks).Can anyone recommend Gab over Lyrica or Lyrica over Gab?
As for shoes- I recently bought a pair of Addidas Cloudform Pure sneakers (slip on, got 1/2 size larger than normal size) and they are fabulous. Memory foam supportive insoles and even my 17 y/o thought they were cool. Was able to walk much longer than usual on a recent Spring Break sight-seeing trip with kids. If I could wear them with everything I would.
Long post! Thank you all for sharing - feels better to know I'm not alone in this.
Lanne
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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!
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Lanne, I've been on weekly Taxol for 15 months. I was prescribed gabapentin for neuropathy last fall but I absolutely could not take that stuff. I felt wonky and awful on it. I did some research on other things that might help and kept coming across suggestions to try a GABA supplement (GABA stands for gamma-aminobutyric acid, a neurotransmitter that naturally occurs in our bodies). It really helps me--the neuropathy stopped ascending further up my feet and hands, and then began to actually reverse. I take GABA Calm by Source Naturals, two before bed (it also helps with anxiety and insomnia) and I also take one before I go to the chemo lab and another when I get back home after chemo. It is definitely worth trying.
Those Adidas slip-ons are great! I have lost count of how many pairs of Skechers I have. I started wearing them back when I had HFS when I was on Xeloda for three years. They practically saved my life, because X made my feet a mess of raw blisters with the least bit of friction, and without my Skechers I would have been sedentary most of the time.
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Addidas makes slip ons? I need to look into that!
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Did seeing a neurologist help anyone? I can't take ssri drugs and gabapentin gave me hives after a couple of months. I'm starting acupuncture soon. Thanks for sharing every one.
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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.
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I saw nuerologist, they do testing but really only referred me to nuerosurgeons. I did some rexearch as the nuerologist told me i had ms! When i did research it told me i was actually older than someone to be suddenly diagnosed with ms. I did have nuerologist advise me to have the hydrocephelus treated but cant say that helped.
Along with my journey i have now been diagnosed with breast cancer and one of the meds has actually made nueropathy worse
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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
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gardengypsy - I too receive ss disability due to neuropathy (and other chemo induced issues). I was on gabapentin and Cymbalta for a long time with increasing dosages but eventually weaned myself off both and also Tamoxifen. I have numbness in feet and hands and also cannot taste or smell much. I thought I was having pain due to neuropathy but most of my pain was from Tamoxifen in the form of bone pain in upper spine, down arms and legs into ankles and wrists. After about 4 months, I restarted Tamoxifen and that pain is back now. I stillget quick zinger like jolts of pain that I attribute to the neuropathy.
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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.
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NotBtoken, I am thinking the same thing. I’m on gabapentin and Zoloft ... wondering if cymbalta could cover for both? I’m going to email my dr. ..
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Lanne, let me know what your doctor says. I spoke with mine and she said both Lexapro and Cymbalta are good drugs for anxiety/depression. While Lexapro does not have the neuropathy benefits that Cymbalta has, she likes Lexapro. She left it up to me, but because I did not tolerate the Celexa well, she thought Lexapro might be a better fit. She says she uses it often and her patients have few if any SEs and very safe.I went with her thoughts after being on the Celexa and having terrible scary breathing issues. Ugh...I dislike taking meds but sometimes it is less of two evils. When/if I get to the bottom of this crippling fatigue I will thereafter address the neuropathy. Always something since BC.
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Hi NotNroken
My Dr is very supportive of the switch from Zoloft and Gabapentin to Cymbalta to cut down the # of perscriptions I take (she already called in the Rx). She says to stop Zoloft and start Cymbalta on the same day, wean off Gab over 1-2 weeks, monitor my neurothapic pain, and see her in 2 months! I'm going to give it a try.
Lanne
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Blownaway ~ It is good to hear that you weaned yourself off of the drugs. I just don't think I can do that right now.
How did you do with Cymbalta? I think the Gabapentin works during the day but the night time is just awful. I have suspected, all along, that this is a combination of the Tamoxifen and CIPN. But I think I should stay with the neuropathy diagnosis so there are not insurance conflicts.
Are you taking an AI instead?
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I was off Tamoxifen for about 4 months (gave myself a vacation). The bone pain stopped but not the hot flashes. I had been taking 900 mg Gabapentin at night and duloxitine (Cymbalta) during the day for pain, along with the Tamoxifen. Apparently, you have to keep bumping up dosages because you build up a tolerance. I have restarted the Tamoxifen at 1/2 dosage (3 weeks ago) and the bone pain is back. I'm losing hair like crazy. I get the fast come/go nerve pain here and there (I call them zingers)but am willing to deal with that for now, just to be off some of the Meds I was on.
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Blownaway, have you tried loratadine (Claritin) for your bone pain? It helps with mine. I've also started turmeric tablets and waiting to see how/if it works. I’ve has two “good days” for the two days I’ve taken it
Laurie
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Just plain Claritin or Claritin D? I'll give turmeric a try also
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plain. Loratadine 10mg is the active ingredient, which you can buy much cheaper off brand. I get mine at Target. My MO recommended it for bone aches with chemo.
Lanne
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actually, it was for pain caused by the drug you take to elevate white blood cells during chemo - residual chemo brain prevents me from remembering the name!
Lann
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