Vent about Permanent Neuropathy
Comments
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OMG I gained weight on the Tamox like no tomorrow. I'm still painfully taking it off oh so slowly. You're right it doesn't help the pain either. I used to get so mad when people would say the Tamox study showed placebo gained as much weight as control group it is all in your head. Well later smaller studies showed weight gain on Tamox especially for us premenopausal groups. Then my MO finally admitted yes people gain weight on it.
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kmmd, i did have a great time & looked pretty damn good considering lol! my DH did spill his champagne down the front of my dress but i didn't let it stop me! when we were standing in line for the photo booth the groom's dad was in front of us - he said "do you want to go first, should you be standing this long?" what???? watch me on the dance floor, Grampa!! hahaha! was good times
sooo not my Onc but my surgeon recommended Gabapentin - what do we think of it??? "thoughts of suicide" sounds like scary stuff...anyone on it?
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I started neurontin . It starts with one pill at night then increases..by the time it worked for me I was sleepy so they switched me to Lyrica and it worked for me..the docs have to start you on something less expensive then if that doesn't work go expensive like lyrica..
I haven't had many side effects at all except for neuropathy pain relief
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I did Neurontin or gaba whatever a while back for some leg pains that turned out to be caused by the dang statin I was taking. Did nothing for the pain, made me way sleepy and stupid. think I tossed a bunch of the pills,. I changed statins and pain disappeared over night!
it is a strange pill and some folks wind up taking huge quantities
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I did not like lyrica. It made me foggy headed. Honestly didn't think it helped the pain either. Neurontin worked the best but it too had SE that made me quit. Thankfully we are having a cooler summer than normal so it hasn't been a bad on my burning feet. Everybody is different. My DH has no problem with Lyrica and he takes it three times a day. I was only on it once a day.
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Guess I'll pop back in for my monthly update. I can't report any improvement. In fact, my feet had felt worse lately, even achey. Not sure if this is all CIPN, or if it is my FM on top of my CIPN??? Anyway, I had run out of my B-complex vitamins a while back and decided to get back on them. After a couple days back on B Vits, I did seem to get back to the numbness without too much additional bad feeling. For me, Vit. B maintenance seems necessary.
Still at about 25% numbness for lefty, 35% numbness for right.
That's plenty of feeling to really feel it when I stub a toe!
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I only tried gabapentin for my FM. Not for me. Since the lowest starter doses gave me insomnia, made me feel irritated (I mean irked!) all the time, and didn't change my pain in any way, I could never keep on to reach the therapeutic dosage. Because it does work well for some, it is worth trying.
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not good news, elimar since i already have insomnia & am almost always "irked"
haven't tried it yet - getting over a sinus infection...
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I still think 'natural herbs' are kicking my neuropathy pain in the butt!
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Notbuyingit, so happy to hear that! gabapentin didn't help me but it does help some, might be worth the try. Worked great for my hot flashes, I went off it due to weight gain. I might have put up with it for neuropathy relief but not hotflashes.
pip57, I'm so keeping your natural herbs in mind
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It's amazing how so many different things work for some people .It just goes to show how different our bodies really are.
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still haven't tried the Gabapentin...my feet are not as painful since i started the swimming - just the constant numbness which i am just getting used to, i think
i was using Vix vapor rub for my sinus infection & the other night tried it on my toes
actually felt pretty good - i think i will look for cream with camphor - otherwise the sunburn relief aloe w/lidocaine is still my fav @ nite - makes my feet kinda slippery in the shower tho lolpip, i am ready for a beach, sand chair, & "natural herbs" ( my retirement plan)
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I have some Lidocaine Ointment..more for the mouth I think but it helps...it comes in a jar and my PCP gave me an RX for it
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well I am a huge fan of my pool and swim 4 to 5 days a week. But gonna look for something for the days like yesterday, when I went shopping for a bit and then paid for it in the foot pain
I found an ad for someone in NJ (where I live) who is a chiropractor and claims to work with patients with neuropathy. Thing is, he initially was a Communications major~~then went to school for chiro
Gonna see if I can learn something more of him, he seems to believe in nutritional suppliments
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Last night I got my 2nd pedicure. It was still very uncomfortable...I think this person was rougher and she did not understand English very well when I asked her to be gentle. Anyway...this time I got the mud mask and hot rock and parafin wax. The mud felt so good but the wax had my feet screaming! Later on and today my feet feel better. I am hoping and visualizing that these pedicures heal my neuropathy. I think my feet really do feel better today.0 -
Everythings better at the beach.
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ooo, if you think the pedicures cure the neuropathy, let me know! would be lovely if it did
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lol Pip!
Lovewins, what kind of fancy pedicures do you get, girl? the ones i've had include some leg massage - but no hot rocks or wax. When i told the girl about my nueropathy she did say they have a more intense massage treatment..for an additional fee, of course. But i would also much prefer pedicures to be the answer instead of meds! i'll see if i can pitch that to the DH
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NBI....They have all different kinds where I go. They even have more stuff they do. I did a little reading and massage can improve Neuropathy in some cases. I had more done this time than last time and I think it stimulates the nerves. My friend got into a bad motorcycle accident and she said part of her therapy was to desensitize the skin. I feel like a have a tiny bit more feeling in my feet today. I will keep track here if I make progress or not. I am also visualizing my feet pain free. It can't hurt right???? At least my feet will be pretty.0 -
sounds awesome! and i'm sure it will help! every night as i lotion on whatever I am currently trying - i top it off with some dry skin lotion & figure at least my feet will be soft!
sometimes i think they are better - sometimes i think i am just getting used to it...
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Any change to my numbness is happening at a snail's pace, but I do like walking barefoot on different surfaces (like sidewalk and grass and sand and carpet) because, although I can't feel them normally, they do seem to stimulate my feet in a good way.
I have enough feeling that I can walk safely without shoes.
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I am still thinking this last pedicure caused my neuropathy to improve a tiny bit. I tell you it was extremely uncomfortable when she was clipping and trimming and rubbing a towel over my feet. Almost made me jump out of my chair...but I am sticking with it. I ordered some cream from Etsy for temporary relief. The neurpathy I had in my hand is 80% gone. I am telling myself it is because I am typing all day and using my hands.
I also enjoy walking around barebare on different surfaces....the mat we have going in the back door...not so much!
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I agree with Eli's "snail's pace". I have a little more feeling in toes 2 & 3, but the ball of my foot is still absolutely dead. It feels dangerous to step into the shower. I wear clunky sandals w/socks since those are more comfortable for my big toenails that are still coming off. But I don't go barefoot outside my bedroom. Sigh - this is the 'girl' who NEVER wore shoes for 65 years unless forced. My fingers are still mostly numb & the tips often feel swollen, although I don't think they really are. I hope someday I'll be able to thread a needle again, or pick up pennies. I'm grateful not to have much pain. In August it will be a year since Taxotere.
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MinusTwo, Mid-August was my final chemo, so will have to post next month about how I am doing one year out. I thought I had gotten off so lucky because I had very little CIPN last Aug. It set in after the first week of Sept. Every now and then I have a whisper of a tingle in my hands, but nothing really noticeable in them. I really hope your hands come back further. I think that would make me even more upset than I am now.
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i too have just a whisper in my finger tips - & my feet do feel the best without shoes cuz it's mostly my toes that re numb. My feet are super slippery in the tub cuz of all the lotion i wear at night!
i am definitely liking the vapor rub - just a little goes a long way
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Don't think I need a lidocaine cream. Already numb. Might try the Vapo-rub and see what that does.
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the other one i like is actually for sunburn - it'a Hawaiian Tropic's Cool Aloe I.C.E. with Lidocaine xtra strength
i haven't seen anyone mentioning Capsaicin or Neuragen creams - both of which were recommended to me at the onset - but they made me feel like my feet were on fire!! when i read it may take weeks to tell if it's really working I said forget it! anyone out there use either of these?
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I used capsaicin. It helped some.
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dumb dumb dumb dumb dumb
That was me today. Very hot here. Went out on the back deck to admire the cutest puppy outside. I knew the deck was warm but was "only out for a minute." I knew better. I'm walking around later thinking my feet feel funny and I can feel them a little less than usual. Yeah, I burned them. I knew I couldn't feel well enough and when I felt like the deck was warm I should have gone back in because I wouldn't be able to tell when it was getting HOT. Luckily not too bad but I'm kicking myself I knew better and it is a little harder to walk because they're more swollen. dumb
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ooach!
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I ordered some cream from etsy that is suppose to help with neuropathy temporarily...I am excited to get it.0
