Vent about Permanent Neuropathy
Comments
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I have noticed a bit less trouble with firmness. Tough I still find my harder shoe just a bit to much. Since I'm in the house lot now those Indian mocs with the fuzzy stuff look so heavenly.0 -
I have worn Birkenstocks for years and they fit my foot beautifully, are very comfortable. But they are not for everyone - my sister and mom cannot wear them as the arch support hits them in the wrong place. They also make a soft Birkenstock which fits a little differently and my sis can wear them but I cannot.
Teva and Keene make outdoor footwear that is great. I just bought a pair of boots - first pair of boots other than hiking or ski boots that I have ever owned! - they are Tevas - and very comfortable. Keene makes some as well, and the toe box is wider.
I don't have problems with neuropathy in my feet, than the Good Lord - but I feel so badly for those of you who do! You may also want to see a podiatrist and consider some types of padding/arch supports - a good podiatrist can be very helpful in figuring out a reasonable approach.
My new boots!!!
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Finding shoes is almost a full-time job for me. I have an odd size--12 or 13 narrow--and sometimes it feels like I've fallen off the footwear charts.
However. For everyday (I work from a home office; I'd be in deep trouble if I were going into an office every day) I wear New Balance 840WR, which is a running shoe. It's light and has a lot of cushioning. I have four pairs, stockpiling against the day they discontinue the model.
In the summer I wear Finn Comfort sandals. They cost a bomb, but they're the most comfortable footwear I have. The cork footbed, which is removable and replaceable, just works for me. I've tried inserting it into other shoes (Munro American sells their shoes with removable insoles), but I run into size issues. The insoles are wide, and any shoes wide enough to accommodate them fall off my feet.
My next move is a visit to a podiatrist for an orthotic. I hesitate to spend that kind of money (several hundred dollars), but I need shoes to wear in the winter that aren't sneakers, and I'm thinking that a custom orthotic may help me find something.
Whatever I wear, I need to change it frequently, and I can't be on my feet more than a couple of hours without paying for it later. Deep-tissue foot rubs from my very patient husband at the end of the day also help.
Anyway, that's what works for me.0 -
Septembersong, my DH bought me a foot massager a few years ago that I really like. It has little wooden balls that are attached to a rotating arm, and covered by a soft fabric, so you put your feet on it and the little wooden balls give a nice massage as light or deep as you want, depending on how much pressure you put on your feet. It can go fast or slow, and has a timer on it. I used to work on my feet 12-18 hours a day, so it was a life-saver! Now I hardly ever use it, and the space that I kept it in now keeps my Flexitouch for the LE issues, but now that I am thinking about it, I will try to locate it and use it again!0 -
Has anyone had any experience with the Aetrex (merged with Apex, I believe) brand of shoes? They advertise themselves " Designed specifically for comfort and protection for those who suffer painful foot conditions." On some sites, they come up as shoes designed for peripheral neuropathy.
I'm also interested in these gel metatarsal pads, enough to order one today (oops, maybe I needed a pair?) My neuropathy is on the ball of my feet and toes.:
http://www.apexfoot.com/all-gel-metatarsal-pad-with-toe-separator/0 -
that's where mine is too. Metatarsal and toes.
I think the steroids during rads diminished it but expect it to come back when they restart chemo. "sigh"0 -
Chickadee - I will let you know what I think of these gel pads (and shoe brand). Gel, pad, cold, these are the words that make my feet feel better already.0 -
Hi, I hope you don't mind if I join in. My permanent neuropathy is not from chemo, but from the breast cancer surgery. I have it so bad it is literally debilitating since I awoke from surgery on 1/11/11.
I have been going to a pain clinic since June 2011.
I have been on gabapentin since February 2011. I have had it increased since then.
They put me on 2100 mg of gabapentin a day (I take 3.5 600 mg pills a day), 25 mg of Amitriptyline at bedtime (an anti-depressant that helps some with pain and helps promote sleep), I used to take Metaxalone (muscle relaxer) at night as well, but Medicare stopped covering it so I take something else now.
For breath through pain I take 50 mg of Tramadol or 5-325 Vicodin, depending on how bad the pain is.
When I first started the Pain Clinic,the doctor told me that there is no one size fits all for pain management for everyone. He told me to be patient because in order to find the best pain management system for me, there might be some lets do plan A, if that doesn't work, then try Plan B. They started with medications and did Stellate Ganglion Nerve Block Shots to the neck. The procedure was very pain and dangerous. I couldn't move while the doctor inserted the needle because he needed to make sure he didn't hit an artery. The pain relief I had from them was only 2-3 weeks. I decided to stop them because the pain wasn't worth the little relief I got.
The doctors (I saw two different pain doctors at the time who were fabulous) I saw said to try an IV bag of Lidocaine Infusion. Those worked great for me and I still get them every 9-10 weeks. I have found that not all pain clinics do those.
This past summer I tried Spinal Stimulation Therapy. I did the trial. Basically, they put leads (spaghetti like wires/tubes) up my back and attach it to a programmer. The Stimulation is supposed to cut off the sensations of pain from getting to the brain by sending tingles to the spine and brain. You can have it set for any part of the body.
I wore it for three or four days. I had a hand held programmer that I could control the intensity of the of the signals and the type. Unfortunately, it didn't work for me. But it has worked fabulously for others.
Lifelover: The Gabapentin dose have side effects....you can get loopy, sleepy, lose concentration, etc. I think most pain and/or neuropathy medications have the possibility of side effects.
. You can look up drug interactions and side effects at http://www.drugs.com/sfx/ and you can look up drug interactions at http://www.drugs.com/drug_interactions.html.
Not everyone gets all the side effects and the severity of the SE's vary from person to person.
I hope this helps someone.0 -
Cinnamon - I've never heard of this, surgery causing neuropathy. I had to go look this up to try and find out why it happens.
http://voices.yahoo.com/what-causes-neuropathy-after-surgery-6841078.html
They seem to indicate it is an inflammation issue:
What Causes Neuropathy after Surgery?
Researchers at Mayo Clinic did biopsies on the nerves of 23 patients diagnosed with a surgical neuropathy after undergoing various types of surgery. The majority of these biopsies showed that the nerves were inflamed, likely due to stress and strain placed on them during the surgical procedure, which caused the immune system to attack the injured nerves. Based on these findings, they treated these patients with immunotherapy. The results? All patients improved with treatment over a three month period.
I'm sure you know why more about what is happening to you and why, but just in case....
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Cinnomonsmiles, of course you're welcome here! I've met a couple of women describing what you're describing, and it is an incredibly painful condition, so sorry you're dealing with it0 -
Love the boots Linda-n30 -
I take back what I said about Anodyne therapy...my insurance does not cover it. My PT center gets around it by adding on some unneeded exercise and then giving the Anodyne therapy for free. You know, the usual silliness that drives up health care costs. Well, I found out the Anodyne therapy only costs $28 (making it quite affordable as far as therapies go) and time with a PT costs much more.
Since I already pay a $20 co-pay, I will probably just pay the extra $8, thereby saving my insurance co. the cost of half an hour with a PT. Not that they will appreciate my cost containing measures, or that it will generate enough good will to keep them from screwing me over at their next earliest convenience, because that's how my insurance co. rolls. They will remain nameless, but three of the letters found in their name would be a U, an H and a C. And thank you all for this platform to vent my feelings about them.
Did I mention that my feet get wrapped in Saran Wrap prior to getting the pad thingies strapped on? It's for cootie prevention. However, I noticed that the staff did not change the pillowcase of the pillow I had been resting my feet on for half an hour. My feet were clean, but it's still disgusting. I know what to never rest my head on now!0 -
oh GAWD, that picture. Love it, hate it. Ok love it.0 -
Ahahaha! It's a Thin Line Between Love and Hate. (It was too irresistible not to link it.) O.K., back to our regularly scheduled pain and numbness.0 -
Their song I remember best is "Some Guys Have All the Luck". Love the hair.0 -
That picture says it all - priceless!0 -
what an ugly foot picture and how much that face is how my feet feel. However all I could think is I wish I could curl my toes like that. My left foot is so numb that I can't curl but two toes and it hurts to stretch it out too.0 -
My feet kill me some days. It's been 5 months since my last chemo treatment and I have tried vitamin B and I just started vitamin D. I don't know what else to do...when it hurts so bad I can't sleep, I take a pain pill. Sometimes the sheet hurts my feet when I lie in bed. The doctor gave me Gabapentin but it made me SO sleepy I couldn't take it...and it wasn't working. I am thankful it is only my feet - not my hands...I would not be able to do my job if it were my hands!! I am glad to hear it is not all in my head and that I am not alone!!! It is a terrible pain and keeps me from exercising which for me...is not good at all.
Lyrica - can I hear more from anyone who knows how that works????? I don't want to be "on something" but I suppose if it works, I'd take it.
Prefer if you Private Message me - it's easier for me - thanks!!!!0 -
Lyrica didn't help me either. Felt like I was just stressing my liver for no improvement.
I'm working on following Linda's lead toward a compounded cream applied topically. Seeing onc next week to try to put her and the pharmacists together with the study Ingredients and hope it will help over time. Gonna be my own guinea pig.0 -
Like every other drug, so far, Lyrica has not demonstrated effectiveness for people suffering CIPN. Lyrica is in the same class (anti-convulsant) of drug as Neurontin (gabapentin) but it is still on patent and so costs a lot more money than gabapentin. I'm just parroting this, as said to me by my PCP.
Personally, since not all things work for all people, I think we have to reduce ourselves to guinea pigs and try out some of the potential treatments. Either that or consign ourselves to "live with the pain" and that is, to me, unacceptable. What a shame it comes to this.0 -
Elimar, I think you are right - we each have to be our own guinea pig. I have been doing a lot of thinking about this recently, especially clinical trials. Essentially, they take a large number of people with or without a specific condition, treat some of them one way and the others differently, or even with placebo. Then they look at the difference OVERALL between the two groups. The interesting thing is that SOME people in the treatment group are going to respond, even if large numbers don't, so then the assumption is it doesn't work. But in thinking about the genetic makeup of each individual, I am beginning to wonder if some of the treatments that have been discounted as "not effective" may actually indeed BE effective for SOME people, due to unique genetics. And of course, if fewer people get a response to treatment than DO get a response, the treatment may be considered "effective" and those who do not respond may feel like it is their own fault that something is not working, like so many of the meds that work for diabetic neuropathy but not for CIPN. Just some wandering thoughts on the topic, making me realize that even the most dedicated health care professionals just don't have the answers, and if they are really caring, they will hang in there with us, keep an open mind, try new things, especially if we are willing to be our own guinea pigs in the hope of finding relief.
At this time, there are NO meds that have been PROVEN to provide relief to CIPN patients, but there are certainly some CIPN patients who DO get relief from some of the meds, so worth a try (I tried every class there was, no relief but lots of SEs, but I kept on trying until I had tried them ALL!). For me, the best I can get is relief from the constant burning/tingling, but not from the deep aching pain, but I will take it!
Also, wanted to comment on the feet vs hands. Yes, losing function of hands is horrible, but I also think not being able to walk or stand is horrible as well. Both are severely limiting for activities of daily life.0 -
I LOVE the screaming feet pic!!! That is exactly how my feet feel if I stand still for more than a minute or two. I can walk ok, but I can NOT stand still. Makes me crazy! Oh, the burning pain! I can not go barefoot at all, which I have done ALL my life! I no longer own any shoes I had pre-chemo. Had to buy all new/different shoes. Have to wear socks to bed to keep my feet from freezing. Can't stand the weight of the covers on my toes...ARG! I had FEC and yes, the c stands for Cytoxan...and I also had Taxotere! My Onc did acknowledge the CIPN and he offered gabapentin, which I declined. Did not want to trade one SE for others... Glad to find a venting thread. I have lots of screaming to do about my "glove/sock syndrome" !
Elimar, I may change my avatar to your "screaming feet" pic! LOL! Love the pic!0 -
the screaming feet have taken flight. Showed my onc, creeped her out. Then my favorite head nurse who sent it to her nurse friends at MDAnderson..............maybe the doctors will get a bit of a reality check. This stuff hurts.
Sheryl is going to include it in her HFS/Xeloda info.
Anyway its a good visual to make a point.0 -
Today at PT my therapist tried Fluidotherapy... its ground up corn husks heated up and blown around in this machine.... kinda weird but it did make my figures feel better for a little bit. Anyone else out there try with for the PAIN????0 -
ChickaD, I saw an OT early on who tried that with my hands - didn't work very well, but worth a try as I think some may respond to it.0 -
I have never tried the ground up corn husks. My OT did try infrared light therapy on my feet. It helped the first time, but not the second or third time.0 -
Dropping by to see how my fellow PN sufferers are doing. Wanna say the feet pik says it to a T!!! I'm coming into summer and NOT looking forward to it. Gotta find some more Tevas. They are the only thing that comes anywhere near 1/2 respectable for me. I have to work my WHOLE life around this idiotic PN. I have to do my walk early. My feet are pretty much done in when Ive done 2 miles tops. I have to keep my putting my feet in and out of bed oscillating between 2 extremes of burning and absolute freezing. Forget long hauls through supermarkets and forget browsing leisurely through shops. I HAVE to shop early. PERIOD. I cant stand for anything more than 2 hours. The more I push myself the more days it takes to "get over" it. Grrrrrr.
This condition sure sucks.0 -
Cymbalta has helped me. My NP found a study that said it shows that it works better for CIPN. if I can find where I saved it, the study, I'll post it. :-\0 -
As per Drugs.com, Cymbalta has more interaction with Tamoxifen than either Neurontin or Effexor. Just FYI.0 -
The article was in the Journal of the American Medical Association back in April. I am a computer illiterate so can't figure out how to get the link on here. I have been lurking here for a while but hadn't posted. I have it in the feet as well as some good ol hand/foot stuff to boot. I have been on the Neurotin for only a week and now he wants to increase it to 3 times a day.Told him not acceptable as I work full time and there's no way I can do it during the day. I have asked to try the Cymbalta instead. The accupuncturist I went to said it would provide little or no relief for the pain but she could provide some calming effects to my mind if I wanted. Thanked her for being honest and declined.
Just got scan results yesterday and was stable-which is good but told him unless we can fix my feet I will go off the drug. I recently finished a whole year of Perjeta/Taxotere and now have been on Kadcyla since August.
I have read this thread and sad to see that no one seems to have found anything that helps much. My Onc isn't dismissive but I have to keep reminding him I work full time at a job that has me on my feet all day so any drugs used to treat side effects can't be ones that simply knock you out so you can't even remember what was wrong with you. It hurts just as bad or worse to sit-the throbbing/tingling/stabbing seems to really escalate then. The hand/foot has layers of skin coming off daily so it certainly isn't helping.
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