Vent about Permanent Neuropathy
Comments
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Marie if you're just starting with neuropathy please don't let what you read here scare you. This is an unusual group that gets together to commiserate with each other. Most people improve and the neuropathy is short lived. I have friends who have gone through taxol based chemo more than once and never ended up with permanent neuropathy. Usually the rule of thumb is what is left at two years is what you end up with but people will still heal during that time. However a lot of people improve much more quickly. Even of those of us with permanent neuropathy not everyone has painful neuropathy. I certainly hope you are in the majority and the neuropathy is transient and you improve quickly after chemo!
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I took the gab thing for a time but thought it just made me sleepy
what benefit to you see in it?
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I'd also be interested in what improvements you see with Gabapentin, Bosum Also I'd be interested in hearing what benefits people have with Lyrica. Thanks
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Kmmd -
Thank you. I figured so much, but it does help to hear it from someone on the forum. I don't know if it's my imagination, but it seems to be slightly improved. I had an appointment with my primary medical doctor today and he said I am on the very lowest dose of Lyrica 50 mgs 2x daily. It's almost like nothing. He thinks I would benefit from a higher dose. I'll wait 2 weeks when I see the Neurologist and see what he recommends.
Thank you again!
Marie
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I took a very lo dose of the Gab for a leg pain that turned out to be SE of a dang statin, switched statin and the leg pain went away overnight
yeah, too many meds now so will need to think on this a bit and may discuss with docs
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I'm not taking any of the Neuropathy meds right now - or much of anything else except vitamins. My goal is not to start taking anything new until I'm sure all the other poisons (oops, I mean blessings) are out of my system. I'm ready for chocolate cake & red wine or pizza & beer, but I'll have to pass on the drinks for tonight since I had two margaritas at lunch.
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Been there - I remember looking up that medical term on google.
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I get it, a few months ago a pal invited me to dinner and proudly said she was making special steaks (think highly marbled~~) and I said gee I have not had a steak in 6 years since my diagnosis. She was shocked but I never announced it, I just started to eat dif and steak, never been my thing anyway to the fatty thing was out.
She was shocked as her family eats few veggies (I eat tons of greens and my bfast this morning is whole grain bread, spread with yogurt, a kale leaf and a slice of apple!).
we just need to do what we can do, arthritis, yeah and really need my gym and pool!
off to bfast!
oh yeah, I am for the pizza and beer! have not had that in a while and I live in NJ home of tons of pizza joints!
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B-Blues, I don't think the B Vitamin is a placebo thing. When I ran out and did not take it for a week or two, I seemed to be a bit worse as far as numbness and dead feeling. Got a new bottle, better withing the next 1-2 days. I take some kind of B daily, either my multi-Vit (which I don't take every day) or on other days just a B complex.
My symptoms are like MinusTwo, but to a lesser degree. I do think I am in the 70% who got some improvement, but I am still very far from "all better."
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hoping I would not have to post here
Question, or feedback ..... I have two treatments of 4. First time on day 5 after tx the bottom of both feet were in such pain. I blamed it on neulesta
Yesterday same thing. But now in hands. No tingling. Just severe pain. Opening and closing hands hurts as do bottom of feet. Sound like neuropathy ?
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Toby - could be that or Hand & Foot syndrome. Give your doc a call & let him know.
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Tobycc...what you are experiencing is fairly typical for the taxatere chemos. The pain also peaked around day 3 and 4 for me too.
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thank you!
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definitely call to report to your doc and do not sugar coat your reactions! This from some one who had a reaction this week, at the docs office to a steroid shot given for sinus polyps. They had me on O2 and were yelling for epi pens! All was fine but side effects should not be ignored
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went for blood draw today. Nurse said it is a definite reaction. To the taxotere. Will be talking to MO about changing dose, etc
I appreciate your feedback. Proud topspin that is awful!!!! Glad you were at the docs office
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yeah, I am still feeling just a tad weird and realize it is the dang steroid! they make me want to jump through the walls!
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hopefully will get through your system quickly !
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thanks, not the first time for the steroid reaction, dang but docs do not warn you and I only found out to be careful by doing google
herb tea for me tonight. maybe my ginger tea~~
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Bosum - yes I have ups & downs, but probably not that extreme. Sorry it's hit you so hard. Someone who's lived w/it longer will probably have more info.
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If your arm is actually limp, I would get that checked out. However, I certainly get tingling and even some numbing of the arms off and on.
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I agree with PIP, I would have that checked out.
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BB--sorry you are feeling so bad and have leg issues. I understand it but luckily I have been able to retire at 65 and collect SS. Although I live a pretty lean life to save money.
I have found that when my arthritis or numbness starts that massaging my hands or feet, it helps! I woke up with aches in my fingers but just massaged them for a time. Have you tried that?
I tried looking for a part time job when I first left my regular job, but so much requires standing on the feet for a day and I only make it a couple of hours!
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I am always trying to assess if I am any better, too. At this point, it is hard because there are some days better than others.
Strangely, now a year PFC, my fibromyalgia has returned. (Why was it gone for a year?) Anyway, it is in my hands and feet, but feels totally different than the CIPN. Just creates a double whammy sometimes.
I have noticed that the approaching colder weather seems to deaden my feet more than they were in Summer.
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I met a woman one morning getting coffee, since I talk to anyone, she started telling me she wished she lived in FL as the cold made her feet and hands hurt more, she had neuropathy as a side effect of her diabetes and while docs told her they could give her meds, she did not want to add another pill. When she described her pain, that is when I realized I had been getting neuropathy for years before the dang C stuff.
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One more weird thing I have noticed. My feet feel less dead when I am in socks or shoes. Why? Not sure, but I am thinking that a normal bare foot can feel everything, so a CIPN bare foot really notices the loss of feeling, more so than one that is covered up. That's my theory anyway.
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I agree that this SE was definitely not discussed or acknowledged before chemo - especially since now i read that some women were allowed to take herbals & such during treatment to try & prevent it.
I am 10 months out with no let up in sight. I have recently returned to full time @ work & now they have extended the branch hours so i am there 9 hrs a day - mostly on my feet. I get home & head right for the recliner - which is terrible for the rest of my body not to mention my life
I too am hesitant to go to drugs that will mess up my head as well as my body.what i really want to know, which no one will tell me, is if pushing through & continuing to work & do what i can to put up with the pain - am i making it worse?? some days my entire legs hurt - recently i have had upper leg/groin pain...i certainly don't want to end up in a wheel chair! I am so frustrated!
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My "vents" on here are more observations. Here's my latest:
When I am lying on the couch or in bed and my feet are resting and not moving they almost feel like feet, but if I move them or they brush against something, then I get that "dead tingle" letting me know of their numbness. Some of you have got to know what I am talking about when I say "dead tingle." It is a feeling that is a lack of feeling! I rarely have pain from the CIPN, it's just the deadness of my not-feet.
The other part of my report this month is that my numbness might only be around 15% now (on a good day that is.) The areas affected are slightly different on each foot, so they don't feel exactly the same. Lefty has a bit more intensity of numbness, righty has a larger affected area.
I can LIVE with this, because I am living, right? Sure hope I can continue to improve and eventually get to no numbness at all. All things possible! Keep healing ladies!!!
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Quick question for those of you further down the road - assuming the neuropathy is affected by temperatures - which is worse, heat or cold? I was more focused on chemo than neuropathy last year and don't remember winter.
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mine is worse when it is cold so not happy going into winter~~
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Minus Two the cold bothers mine more also. I carefully use heating packs around them which helps. Very carefully because it is so easy to burn yourself when you can't feel how hot they are
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