Vent about Permanent Neuropathy
Comments
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I have severe neuropathy in my right foot due to an injury which has been made much worse since I'm on Abraxane. The pain and burning at night was relentless and nothing I took would relieve it. I have tried Neurontin and it did absolutely nothing. The only thing which has helped me is acupunture. I've had two treatments so far and the pain is much better in that I can actually sleep a full night without the burning and stabbing waking me up. The best thing is that of the cost is covered under my insurance. I still have some numbness and some intermitent pain, but so much better than it was.0 -
from what I saw in the OTC neuro creams that are starting to crowd the shelves, the ingredients weren't particularly stand out. I would write them down and ask your doctor if they are of any use before I'd spend a lot. I regard them as more diabetic neuropathy creams and probably as ineffective as the pills they toss at us.0 -
I don't know if it's worse at night or if it's just more noticeable when I'm not doing other stuff, but it's pretty bad. Fortunately, naproxen works as well as anything for me. Doesn't get rid of it but tones it down. I've also noticed it's worse after I get a foot massage.
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I assume after a day of pressure the pain receptors have field day. I take one 5mg Oxycodone and an Ativan to sleep but it also calms my feet down.0 -
Interesting question why some are getting worse symptoms at night. If you dont know this already, listen! PN has a MIND OF ITS OWN. SOmetimes theres just no rhyme nor reason how hideously it can behave, but I'll share some thoughts. Sometimes mine starts up for no apparent reason after Ive gone to bed. So Ive actually got
a/ chillie bricks out of the freezer, cover them with a towel, and rest my feet on them (never fails to help)
b/ use a fan next to my feet (also never fails to help) .
If it's winter and even frosty, I'll poke my feet out from under the blankets and that helps. Tucked in top sheet on my side at the foot end = wrecked bed in the morning. Maybe somethings in this list might be an indicator for some, if you've done any of these before bed. I've found these scenarios can cause burning/more intense burning:
- change in seasons
- summer
- too many blankets
- being on my feet too long
- after effects of overdoing things (can last 3 days)
- hot flushes from Tamoxifen and Arimidex (exacerbate PN)
- nylon socks (ABSOLUTE NO NO)
- too much rubbing (massage)
- shoes that are too hard or buff the soles of feet (ie patterned surface)
- other hard surfaces like hard carpet, gravel etc if you're bare feet
- alcohol
- Hot drinks
- A main hot meal and certain foods
- certain meds
If we consider what PN actually is it might give us some ideas or clues. I'm presenting this idea in the sense that PN is particularly sensitive to change, or at least that's my experience. I cant remember the exact explanation as it was a well over a decade ago, but someone explained to me something like ... its the peripheral nerves misfiring and causing the flushing/numbness/shooting pains. Basically its the nerve endings (synapses) are "getting the wrong message". This is pure conjecture on my part at this point but Im thinking when we are on our feet (but not overdoing it) it's like the movement of our soles MAY be playing a part in keeping those nerves happy. We might draw a parallel between this and the AIs. That is, the well known benefits for many of us when movement helps to alleviate the aching. So, when we get off our feet that presents a change and hence the flushing and burning.0 -
Musical, interesting observation and thoughts. I think change is definitely a factor in how our bodies respond to so many things - CIPN, LE, arthritis, bones & joints on hormonal therapy, mood in general .... the mind-body connection is a very interesting one! It is the brain that interprets the signals from the rest of the body and tells us we are having pain somewhere, and I think change must be what triggers the brain to interpret those signals differently at different times. Now I am wondering what the physiology of this could be ..... I used to teach an advanced pain management class for pharmacy students, and I seem to have forgotten more than I ever knew about the pathways and causes and treatments .... so maybe I will go dig out some of my old notes and see if there is anything that can help explain this phenomenon.0 -
Linda, yes, since you did teaching, it would be good to hear you on this. I can also attest to the fact, as can many others here, changes also affect LE. When I first was dx with PN, there wasn't that much known about it, at least in my country and I don't think it was that different elsewhere. Unfortunately it seems any new developments to alleviate suffering in this field is painfully slow to surface. I remember neurontin way back then, and here I am taking it now because I cant take amitriptyline because of too many side effects. It definitely helped with the burning.0 -
Wanted to share...
Today at PT my therapist tried a paraffin dip on my hands...she is trying anything to get me some relief....it was at 3pm today and amazingly I am still pain free in my hands and its about 9:30pm! And my hands are soft...lol!
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now that sounds somewhat luxurious. Don't know if I could coax my feet into something like that but it sounds pleasant.0 -
I had Anodyne treatment #5 today (this time after a foot massage) and for the first time, I did feel a slight warming sensation during the treatment. Other than that, I haven't noticed any change for the better in overrall numbness. I will probably have just a few more sessions. It's not something I want to carry over into next year (w/new deductible) so hopefully whatever I will have done before the end of the year will stimulate the nerve repair process.
That warm paraffin sounded soothing, so I asked about that. At my place, only the OTs have it and they do people's hands. They did not seem to have a foot option. I have tried a warm water foot soak a couple times. That feels good, but no lasting change. I don't have foot burning, mine goes the other way to feeling icy cold, so all warm therapies appeal to me.0 -
You can buy a paraffin foot bath pretty inexpensively. I use mine for hands and feet, especially during the winter.
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Thanks, auntienance. Will have to look into one of those, especially with Christmas coming up.
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- Elamir, I had bad cold sensitivity early on, but that has gotten better. Next stage was the burning, and that actually responds better to my cream than the cold sensitivity did. But that paraffin bath sounds wonderful for my poor hands. Will ask about that, and add to my wish list, along with a Vitamix. I went to a green smoothies demo and fell in love with them. It's hard to prepare a whole nutritious meal, and these smoothies take minutes to prepare! And most ingredients need v ery little prep.
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Got my rx for the compound cream yesterday. Pharmacy called last night and it will be here Wednesday! It cost me $35 for 280 applications, not sure how many times a day that is but if it helps, it will be well worth it.
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auntienance, my cream is supposed to be twice a day, and it takes a week or two to notice any difference, so don't get too discouraged if you don't see IMMEDIATE results. Best wishes, and I sure hope it helps!0 -
Good to know, thank you Linda!
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I'm doing twice a day each foot. Lightening strikes are gone, I can massage the cream in without wanting to cringe.
I don't think it will help the numbness so I still walk kind of flat footed. All in all I think after two weeks there is some relief.0 -
Chickadee, so glad to hear of even a LITTLE improvement!0 -
I'm having the same experience chickadee. I've only been using a week and the burning and shooting pain is very much abated. My instructions call for 3-4 times a day, but I've only been using twice.
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Has anyone tried plain old Aspercreme?0 -
certainly couldn't hurt to try it.0 -
yes I've felt that. Less numbness now. For awhile it felt like it was traveling up my left leg.
However I will say that when I was really numb and my legs collapsed a couple times from the wobbly jelly feeling, I was walking like a drunken sailor, an MRI revealed brain lesions on my area that governs balance. Not to scare you but has your onc considered that line of thinking.
I put up with that for a couple weeks before I raised the white flag with my onc. I blamed it on the neuropathy. Boy was I wrong.0 -
My legs feel like jello some days. Especially if I go shopping in Walmart or any other big store. I feel like I have to remind myself before I get out of there pick up feet and walk. I had a brain scan. It was normal. I wobble - balance is way off also if I am tired.0 -
I knew a woman whose feet were so numb from PN she had to wear tie type shoes. Anything else she would walk out of and never know it. Please be careful, slips, falls, splinters.........0 -
Somehow it helped with the jelly legs once I learned to walk w/my knees slightly bent. But I do agree with Kitty Dog about big stores. If I have a basket for stability I'm in better shape, but still.0 -
I have become a big store scooter user. Target has good ones, walmarts not always so good. My big chain grocery store ones are pretty good.
I'm getting pretty good at making three point turns mid aisle!0 -
I'm dealing with that this weekend, hurt my foot somehow, no clue how, didn't feel it while it was happening.0 -
Hi All,during Taxol I developed neuropathy and terrible restless leg. I went to a neurologist that put me on neurontin. At the same time I started proton radiation,it's a 3 to 4 hour deal with the drive. I'm so depressed and things that didn't bother me are making me crazy ,emotionally I'm a mess. Anyone else experiencing these symptoms.I don't know if it's the neurontin,lack of sleep from restless leg or the radiation.My hubby says I'm not myself and we are fighting and I'm not like this. Help! The neurontin is helping the neuropathy but if it's making me an emotional nightmare it's not worth it. Thanks Angela0 -
angelanature, Gabapentin (Neurontin) gave me insomnia, so that might be contributing to your lack of sleep. Another SNRI made me very irritable and snappish so, yes, the gabapentin can also be altering your moods. If it is really not agreeing with you, there are several other SSRis or SNRIs that you could try for the same purpose, and the side effects vary from drug to drug as well as person to person so you might just need to keep trying until you find the right fit.
One thing about SLEEP. I have noticed that if I am lacking sleep, I will definitely have more noticable neuropathic symptoms. I will not take anything that causes interference with my sleep. It is just my unfounded belief that the body needs the rest phase of deep sleep to repair itself.0 -
Thanks Elimar and Deb,I've been on it for a month so I'm going to take myself off and see if I improve mentally. While on ddac and taxol,I took 5mg oxycodone and ativan but stopped completely with the end of chemo,maybe stopping them cold wasn't a great idea either.I really thought happy days where coming after finishing chemo but I'm more miserable now than ever.Daily radiation,my hair coming in white(not the beautiful red it was)and being tired and cranky all the time is not what I expected,who knew? I'm crying and sad or angry all the time and it sucks.Angela0
