Vent about Permanent Neuropathy

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  • MCBaker
    MCBaker Member Posts: 1,555
    edited March 2021

    Neurologist orders EMG. It tells them a lot.

  • Humblepeace
    Humblepeace Member Posts: 118
    edited April 2021

    Hi All,

    Just wanted to ask about others experiences with side effects from Gabapentin 200mg daily. Though this is a small dose, I would get twitching eyes and weird feelings in my head. I really think it helped with the pins and needles and even the back pain from the hormone treatment. I sleep better and It helps with hot flashes. But, I don’t like the side effects, it makes me worry. I have weaned myself off over the last two months and neuropathy is worse than ever. The eyes are better and no weird head sensations. Any advice or suggestions, please!

  • Nsbrown54
    Nsbrown54 Member Posts: 908
    edited April 2021

    Hi Humblepeace- have you discussed other treatments for your neuropathy with your MO? There are other prescription drugs that can help. I’m taking 1200mg of gabapentin daily, but don’t get any side effects. It definitely helps me sleep better and managethe hot flashes. I use cream (contains menthol) on my feet and ice them a couple of times per day. Staying active help me as well. I hope you find a solution that works.

  • MCBaker
    MCBaker Member Posts: 1,555
    edited April 2021

    I weaned myself off of Gabapentin, went from 2700 mg to 900 mg, dropped 300 mg per week. Stayed at 900 because I started having nerve pain again. If you wean too fast, pain will become a problem because of withdrawal. Similarly, what some people call side effects are temporary-- it takes a while for your body to get used to it. That is the reason it is also increased gradually. These are my experiences, yours may be different.

  • Humblepeace
    Humblepeace Member Posts: 118
    edited April 2021

    Nsbrown54 and MCBaker- Thank you for your responses. I have had the dickens with side effects from meds. I do believe my pain and basic neuropathy did feel better while on a low dose of Gabapentine. I walk daily, not as much or. asFar as I would like to due to dizziness from hormone therapy. Some days are not too intense. I’ve been on AI for almost three years. These SE are hated!! I’m currently trying Letrozole, two months now. I also developed tinnitus from one of these....I believe Arimidex was the culprit!!

    Thanks for your support

    Humblepeace


  • cowgal
    cowgal Member Posts: 833
    edited April 2021

    I saw MinusTwo mention a page pack that I was trying acupuncture. I had been doing acupuncture twice a week for a total of 8 treatments and have now dropped down to once a week and eventually will get dropped down to once a month at some point. I did it mainly to help with back pain and sciatica that I have been dealing with for a year and I mentioned to the doctor that I also had neuropathy in my feet so he has been treating that as well the entire time. I also have some neuropathy in one thumb and a portion of a finger but because that is my arm with lymphedema, I did not have that treated. My back has improved considerably over the last few months...not healed but much much better and I even think I might get to a point where I can ride my horse again some day! I still have the neuropathy in my feet but I do not have the sharp pains in them that I would occasionally get and the weird feeling may be a little better. I do take gabapentin as well and have been on that for at least 6 months.

  • Annie60
    Annie60 Member Posts: 328
    edited April 2021

    I take gabapentin and not sure I can get by without it. My feet are so painful, my sciatic and leg pain keep me from doing a lot. Letrozole has given me tinnitus and made my sciatic nerve worse. I don’t really have any side effects from the gabapentin, just relief

  • SoCalLisa
    SoCalLisa Member Posts: 13,961
    edited April 2021

    I went from gabapentin to pregabalin because I was taking so much of the gabapentin it made me sleepy, Not so much with the pegabalin (Lyrica). I took it for 16 years and then tapered off last year and added accupunture..Now I am not taking any. I still have some pain, but not like before..it helps me to take a short siesta in the pm.

  • Kattysmith
    Kattysmith Member Posts: 738
    edited May 2021

    Hello all, I had some mild neuropathy and hand-foot syndrome in my feet while on xeloda until August of last year. I started Taxol in late September and since January my neuropathy has gotten severe in both feet and both hands. I intermittently feel like tight bands are wrapped around my ribs and there is intermittent tingling in my face. I may be switching to a new therapy in July but I don't believe that my neuropathy will improve even if I stop Taxol.

    I have been Stage 4 for 6 years now, which means my treatment will never end until either I croak or I choose to stop it, but this past year my quality of life has gone to hell in a handbasket. I lurch around like a baby learning to walk or a drunk, even with my cane or a walker. I have started to exercise at home to try to strengthen my legs and help with my balance. We shall see what we shall see.

    The main things keeping me going are my very dark sense of humor, my loving family including my dogs and cats and the fact that I'm full of piss and vinegar.

    I wish everyone here well. There's no question that "we wuz robbed" and I appreciate having a place to vent.

  • Nsbrown54
    Nsbrown54 Member Posts: 908
    edited May 2021

    Kattysmith - I hope you find some relief. Has your oncologist suggested different medications to see if that improves your neuropathy? I find that walking / keeping active helps with my neuropathy pain. I’m taking gabapentin to help manage my pain and ice a couple of times per day.

    I recently developed some facial numbness and was diagnosed with facial palsy. Yet another medication added to my long list of medications added tohelp manage side effects from the chemo drugs.


  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited May 2021

    Katty - so sorry the Taxol has done a number on your neuropathy. As NS Brown points out, had you tried different meds for the neuropathy pain? Fortunately I have little pain. But there are no medications to "repair" the damage to the nerves. However - almost 10 years down the road, I will be seeing my neurologist again to see if there's anything new in the pipeline. And I think next year I'll try accupuncture. WTH - it can't get worse (famous last words).

    I've spent a fortune on shoes & started walking last year, eventually working up to 5-6 miles a day. I'm not sure if that delayed further problems, but my feet are still mostly big, numb, blocks of ice. I have to watch my feet at all times so I don't trip because I can't feel anything. The other thing I really hate is the loss of balance. I can't stand on one foot w/o holding on to something - even long enough to get into the shower or a car. GRRRR.

    Love the dark sense of humor AND the piss & vinegar. You go girl!!! And vent anytime. I really believe it helps to "bitch" to people who understand.

  • Kattysmith
    Kattysmith Member Posts: 738
    edited May 2021

    Thanks for the welcome y'all!

    Fortunately I don't have too much pain and it's never constant. I do take one Gabapentin at night and ibuprofen most mornings for my crappy knee.

    Minus Two, that's great that you can do so much walking and I'm looking forward to building up my leg strength and stamina enough so that I can do some too! My feet are also big blocks of ice and I have to remind myself constantly to pick up my feet.

    BTW, I think acupuncture is a great idea; I've had it in the past.

    It's good to be able to touch base with others who are going through this strange weird trip we are on!

    Katty

  • HikingLady
    HikingLady Member Posts: 650
    edited May 2021

    Supplements for neuropathy? I'm trying them again:

    I'm not sure if my experience is relevant for people suffering from extreme neuropathy pain, ongoing, and challenges walking. I am lucky not to have those issues. My neuropathy is just tingling and numbness. It comes and goes. Sometimes feet, mostly hands, especially finger tips. About 1 year after chemo ended, it really went away. Suddenly, it's back, with especially numb fingertips. So, with my oncologist's clearance, I've restarted expensive supplements. They're the same ones that she recommended that I take during chemo, because my chemo interrupted the absorption of these enzymes: Alpha Lipoic Acid, B6 and B12 (B complex usually has the correct proportion) and L-glutamine. Each has a role to play in nerve health. I took them all during chemo and also after chemo ended, for 6 months or so. I also did icing of my feet and hands during each chemo infusion. Who knows if the icing helped or not, since the effectiveness of that --in 2018-- was still not known conclusively from clinical trials, but I did it just in case it might help.

    Do I now have expensive urine, or is this actually helpful, to re-start these supplements? Well, last time I couldn't tell whether taking these supplements for 6 months made my neuropathy lessen, or whether I was just repairing naturally, with a Tincture of Time after chemo ended. It's true that nerves CAN re-grow, but very slowly, and not always, depending on the damage. I'll now try the neuro-health supplements again for 3 months and see if the symptoms lessen.

    The advice nurse at my oncologist's office has a sense of humor. When I ventured to ask why the heck I suddenly got this numbness starting up again, she said the cause could be the turning of pages on the calendar. Ha ha. Just aging. Well, that's still better than the alternative.

    I'm a classical pianist, and I'm back to playing trios with my violinist and cellist friends weekly, since we're all vaccinated. I don't want to lose any more finger sensation, obviously, so here I go, taking stuff that Might Help. We shall see....

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited May 2021

    Hiking Lady - I'll be interested to see how your new drug regime works. I never stopped taking B-6 and B-12. But I did stop the Alpha Lipoic Acid and the L-Glutamine a year after completing chemo & the year of Herceptin.

  • Kattysmith
    Kattysmith Member Posts: 738
    edited May 2021

    Hiking Lady, thank you for all the information about the supplements and that is wonderful that you are a classical pianist and are getting to play again!!!

  • ts542001
    ts542001 Member Posts: 56
    edited May 2021

    hello. new to this site, but am glad there is a neuropathy forum available.

    anyway i was diagnosed with peripheral neuropathy about 7 years ago, cause unknown,, but i did have chemo 12 or 13 years earlier for my first breast cancer, may have been due to that, i think, symptoms were in my feet, mostly numbness and tingling, an occasional "electric shock" type pain. but symptoms were pretty stable, not really extending anywhere. 18 months ago i had spine surgery L5-S1 - rods and screws put in to prevent bones from collapsing from the metastatic disease and SBRT L5-S3. after that i think my neuropathy felt like it started spreading. i was having tightness in my feet and around my arch it ,felt like i had a tight sock on. then it was a tight sock up to my ankle. now i feel like i have tight socks on all the way up to my knee. not sure why it started extending so much and so quickly. i'm thinking that maybe my nerves were irritated during the surgery (certainly the nerves controlling that area are the same nerves that are in the area that was operated on.) my neurosurgeon just said "you had neuropathy before the surgery, you have neuropathy now"

    anyway that's the history. now i am feeling like i have tightness upper thigh, maybe between my legs. i wake up in the morning and feel like i am lying on wrinkled sheets at the top of my thigh, bottom of butt area (nothing is there, very strange). also sometimes i feel like i have a towel in-between my legs. i know this sounds weird, but that's what's happening.

    tomorrow i am going for EMG, cause my neurologist is concerned about what's going on in my upper thigh area. he mentioned Guillan barre and some other disorders??? anyway i'm anxious about what results will be - i know there is something going on. has anyone here ever had symptoms going up the whole leg. (even tight socks up to my knees i think is not usual?) i'm willing to attribute all this to peripheral neuropathy if that's what diagnosis is, i just want a diagnosis.

    if anyone has something to add, i'd appreciate hearing it,

    ty all, teri


  • Kattysmith
    Kattysmith Member Posts: 738
    edited June 2021

    Teri, I hope that your EMG went well and will reveal what is going on!

    My experience with neuropathy is different from yours, but having progressive loss of sensation and mobility is very frightening, so I feel you!

    Please keep us posted,

    Katty

  • ts542001
    ts542001 Member Posts: 56
    edited June 2021

    thanks Katty, had emg. it was actually painless. ive had emgs before and they were never painless. anyway doctor told me that the place he learned how to do emg's was called painless emg.

    doctor told me that alot of my symptoms are related to the surgery, but nothing to worry about, i will speak with my neurologist to get more exact details, but it was good to hear "nothing to worry about". doesnt mean my symptoms wont get worse, but at least i know there is no serious disease going on, just nerves that were irritated by surgery.

    thanks for being there. i'll stay in touch

  • Kattysmith
    Kattysmith Member Posts: 738
    edited June 2021

    That's really good to hear, and thanks for checking in!

  • NotBrokenJustBent
    NotBrokenJustBent Member Posts: 394
    edited August 2021

    Just popping in to see if anyone found a magic cure yet. My neuropathy has been very bad the last few months. I must admit I have been very stressed, drinking more than I should as a poor coping mechanism and slacked off on my diet. Also other than a multi and vitamin C I discontinued the other vitamins. Trying to get back on track now. Hopefully that will bring on some relief/improvement?

    As a single person I struggle with good nutrition. It seems like so much work in preparation, clean up and much wasteful leftovers so I end up eating a lot of the frozen prepared foods. Tomorrow is shopping day. I will be more conscious of my diet. Also my nutribullet died months and months ago. That enabled me to get at least 5 fruits and veggies a day so that will need be another thing on my list.

    There are local neuropathy clinics but sadly treatments are not covered by insurances and I understand costly but perhaps an option for some of you with better financial resources. Worth a try?



  • Nsbrown54
    Nsbrown54 Member Posts: 908
    edited August 2021

    Hi NotBrokenJustBent - I haven’t found a magic cure, but have been doing things that make my symptoms tolerable. I do see a neurologist, so I have an RX for gabapentin. I take 1200mg daily, plus 1000mcg B12, and 250mg Magnesium to help manage my neuropathy symptoms. I walk 1.5-2 miles 5-6 days a week, ice 2-3 timers per day, do REIKI therapy, am trying some essential oils on my feet, and will start acupuncture in a couple of weeks. I find keeping active helps keep the pain away.

    I hope you’re able to find something that alleviates your neuropathy.

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited August 2021

    hey, hey, hey - NotBroken. GREAT to see you!!! Sorry about the neuropathy. I'm in favor of B-12 and B-6 and magnesium, but I'm pretty good about taking vitamins. I'm finally going to see the neurologist this month. The appointment was cancelled twice last year due to Covid. Looking for some new tips & to see what's coming down the pike. I don't expect much but I'll certainly pass along anything I learn. I'm fortunate not to have much pain, but there are so many things I can't do with numb feet & no balance, and numb fumbling fingers (my son wants me to get a hearing aid but how in the hell could even put in the battery?)

    Like NSBrown, I started walking when Covid started. Over a year I worked up to 5 miles most every day. Unfortunately with gyms closed I didn't keep up with balance exercises & muscle building (except my legs of course).

    I think of you often!!

  • Nsbrown54
    Nsbrown54 Member Posts: 908
    edited August 2021

    Hi MinusTwo - Check into rechargeable hearing aids. Right now I fumble around with my hearing aid batteries and putting in the domes, but it’s gotten easier over time.

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited August 2021

    Thanks NSBrown. The lady who did my exam before COVID said that non-prescription hearing aids were 'just around the corner' so maybe I should wait. Frankly I need to re-schedule this just like every other doc I'd planned to see since February 2020.

  • MCBaker
    MCBaker Member Posts: 1,555
    edited August 2021

    -2,The inexpensive non-prescription HA's are already moving into the market. However, they are not adequate for people with severe and profound loss, or those with wild slopes on audiogram.

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited August 2021

    Thanks MCBaker. It's time to make an appointment at Costco for another full exam.

  • NotBrokenJustBent
    NotBrokenJustBent Member Posts: 394
    edited August 2021

    Nsbrown, looks like I can increase my B12. Thanks for posting what you are doing. I completely forgot about magnesium. I stopped taking all the vitamins quite awhile ago. I was having indigestion issues and suspected all the vitamins were compounding it and questioned if they were even helping. Thanks again for your input. Keep us posted on the acupuncture.

    Hi Minus. I think about you often too. That is amazing that you were able to walk that far. Yeah, my feet are pretty numb too and I have pain but my biggest issue is the weakness in my legs. No way could I ever walk that far. Wish I could. At my condo they have a little gym but that has been closed since Covid. I can't build up any strength in my legs with walking but one of the sitting leg machines would be useful. They have these little bike like things that you can buy. You can sit on couch or wherever petal along. One of the brands is Cubii. Have you seen them? I wanted one and my son laughed at me.

  • MCBaker
    MCBaker Member Posts: 1,555
    edited August 2021

    I built up by using hiking poles. I got an inflamed nerve in my left arm/shoulder and doctor told me to stop using them, and I have been doing ok. you would do better going to a gym. They can help people with health concerns just as well as weight-lifters and endurance athletes.

  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited August 2021

    Not Broken: What does your son know... Probably not much more than mine. Don't forget - even though they are our sons and we love them dearly - they are still of the breed of "men". Just because we don't think like they do doesn't make them right. OK - off the soap box now.

    There are several people on BCO using Cubiis. One lady named Mara on the threads has been using a Cubii for more than a year and she loves it. In the beginning of her saga she couldn't walk far either, but now is easily doing more than 10,000 steps a day - in addition to the Cubii.

    McBaker - I carry a large wooden walking stick that I can use for balance and also to keep away stray dogs. I agree about a gym, but I'm not comfortable going back yet. The Silvers Sneakers class I was attending twice a week before COVID s back up to 27 people in a relatively small room and NONE of them wear masks. Sorry - not for me right now.

  • Nsbrown54
    Nsbrown54 Member Posts: 908
    edited August 2021

    NotBrokenJustBent - I only take 250mg of magnesium oxide with dinner. I’m still having low magnesium issues from chemo and any more than 250mg causes me some GI issues.


    I looked at the Cubii online. Similar concept to a recumbent elliptical without the arm workout. Anything to get the blood flowing in our feet is probably good.

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