I have osteosclerotic myeloma (basically POEMS syndrome without the neuropathy). Lately, I have been experiencing an extremely MILD little itch on one foot that sort of feels like the beginning of athlete's foot. Occasionally a slight tingle.
I am hoping that I am not developing peripheral neuropathy. My question what are early signs / first signs of the neuropathy?
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Re: What are the "first signs" of peripheral neuropathy?
Hi Debbie,
Peripheral neuropathy means that there is some nerve damage which can cause nerve irritation. I've never heard of itching being a sign of neuropathy, but it is possible. More often, it's described as tingling, numbness, or a pins and needles kind of discomfort.
You might try massaging the area on your foot with a soothing cocoa butter cream or lotion like Palmers if it's bothersome.
Peripheral neuropathy means that there is some nerve damage which can cause nerve irritation. I've never heard of itching being a sign of neuropathy, but it is possible. More often, it's described as tingling, numbness, or a pins and needles kind of discomfort.
You might try massaging the area on your foot with a soothing cocoa butter cream or lotion like Palmers if it's bothersome.
Re: What are the "first signs" of peripheral neuropathy?
Hi Debbie,
For me the first sign was mild tingling in my fingers. And it was a different kind of tingling than normal tingling when you sleep in a weird position and your hand "falls asleep." The best way I can describe it is that my fingers felt like they were glowing. I know that sounds weird, but that's what it felt like.
Then my toes felt tingly. Eventually things progressed so that now I have a lot of numbness in my toes and feet. But, fortunately, my hands and fingers feel normal most of the time, except for some tingling now and then, and that they are often cold.
My peripheral neuropathy is not debilitating at all. I've been very fortunate.
I did cocoa butter massages on my hands and feet every night for a couple of years. I'm not sure if that helped or not. Recently I've been rolling a small spiky ball (actually a cheap dog toy) on my feet in the evening when I'm reading or watching TV. I think that helps stimulate the nerves some.
I also take Lyrica (pregabalin), Cymbalta (duloxetine), alpha lipoic acid, and acetyl L-carnitine for the peripheral neuropathy, all at my oncologist's recommendation.
Best wishes to you. Keep us posted on how things go for you.
For me the first sign was mild tingling in my fingers. And it was a different kind of tingling than normal tingling when you sleep in a weird position and your hand "falls asleep." The best way I can describe it is that my fingers felt like they were glowing. I know that sounds weird, but that's what it felt like.
Then my toes felt tingly. Eventually things progressed so that now I have a lot of numbness in my toes and feet. But, fortunately, my hands and fingers feel normal most of the time, except for some tingling now and then, and that they are often cold.
My peripheral neuropathy is not debilitating at all. I've been very fortunate.
I did cocoa butter massages on my hands and feet every night for a couple of years. I'm not sure if that helped or not. Recently I've been rolling a small spiky ball (actually a cheap dog toy) on my feet in the evening when I'm reading or watching TV. I think that helps stimulate the nerves some.
I also take Lyrica (pregabalin), Cymbalta (duloxetine), alpha lipoic acid, and acetyl L-carnitine for the peripheral neuropathy, all at my oncologist's recommendation.
Best wishes to you. Keep us posted on how things go for you.
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: What are the "first signs" of peripheral neuropathy?
I'm also trying to understand what the first signs of peripheral neuropathy might be.
My husband begins Revlimid, Velcade, and dexamethasone on June 24. We've been advised to alert our hematologist-oncologist immediately at the first signs of neuropathy. Can someone advise what "first sign" means? We were told "if you feel a tightness," but as we've never dealt with neuropathy, we have no idea what to watch for.
Thank you.
My husband begins Revlimid, Velcade, and dexamethasone on June 24. We've been advised to alert our hematologist-oncologist immediately at the first signs of neuropathy. Can someone advise what "first sign" means? We were told "if you feel a tightness," but as we've never dealt with neuropathy, we have no idea what to watch for.
Thank you.
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shebert - Name: Shirley H
- Who do you know with myeloma?: Husband (Stephen)
- When were you/they diagnosed?: May 2018
- Age at diagnosis: 54
Re: What are the "first signs" of peripheral neuropathy?
Hi Shebert.
I had some peripheral neuropathy in my feet and a little bit in my fingers during my Cytoxan (cyclophosphamide), Velcade, and dexamethasone treatment. The finger neuropathy has disappeared completely since ending that treatment, though I still have some in my feet when I'm standing for a long time.
The best way I can describe it is something like the "pins and needles" feeling when your foot falls asleep. Another way to describe it is that it feels like your sock is crumpled in your shoe. If your husband feels a little bit of numbness or tingling in the feet or hands, that's probably the best indicator, at least it was for me, of the neuropathy.
I was lucky in that mine was not and is not painful, just mildly uncomfortable. I hope he has the same.
I hope this helps.
I had some peripheral neuropathy in my feet and a little bit in my fingers during my Cytoxan (cyclophosphamide), Velcade, and dexamethasone treatment. The finger neuropathy has disappeared completely since ending that treatment, though I still have some in my feet when I'm standing for a long time.
The best way I can describe it is something like the "pins and needles" feeling when your foot falls asleep. Another way to describe it is that it feels like your sock is crumpled in your shoe. If your husband feels a little bit of numbness or tingling in the feet or hands, that's probably the best indicator, at least it was for me, of the neuropathy.
I was lucky in that mine was not and is not painful, just mildly uncomfortable. I hope he has the same.
I hope this helps.
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Steve Horwitz - Name: Steve Horwitz
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: November 2017
- Age at diagnosis: 53
Re: What are the "first signs" of peripheral neuropathy?
Depending on the kind of neuropathy, the "first signs" can be subtle or may be obvious. "Positive" neuropathies to me are sensations that shouldn't be happening. Those might be intermittent but aren't so subtle such as the pins and needles, "walking on rocks," or feeling every little imperfection inside a shoe. Or in my case, they are "negative" as in numb skin on the bottom of my feet. It is only obvious if I flex my foot and the bottom feels like it has a coat of paint or something like it that shouldn't be there. The problem came on very slowly and not from treatment.
From what I have read and heard, the most common treatment-induced neuropathy starts in the feet and is usually the positive kind, so be alert for pain or other odd sensations that persist for more than a few days.
From what I have read and heard, the most common treatment-induced neuropathy starts in the feet and is usually the positive kind, so be alert for pain or other odd sensations that persist for more than a few days.
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Foundry738 - Name: Biclonal
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2016
- Age at diagnosis: 67
Re: What are the "first signs" of peripheral neuropathy?
As with some of the others here, mine first manifested as some slight numbness in my toes. It's progressed slowly, so it took a while for me to be sure that it was peripheral neuropathy and not just a lack of circulation or something like that.
I think it's one of those things in which "you'll know it when you feel it".
I think it's one of those things in which "you'll know it when you feel it".
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: What are the "first signs" of peripheral neuropathy?
Just over a year ago I started on Velcade (weekly injections), Revlimid, and dexamethasone. In about four months, I was experiencing icy cold fingers (wore gloves at night to sleep), tingling and numbness in my feet, and occasional extreme foot discomfort – like muscles cramping in my foot – when I lay down, requiring me to get up and stand on my feet to stop it.
Doctors said "peripheral neuropathy" and discontinued Velcade in November. My fingers got better quickly, my feet not so much, so I'm taking L-carnitine and acetyl acid caps, minimal doses, plus omega-3 fish oil and magnesium. Incidences of lay-down discomfort are much less often now. My feet are still pretty numb from the arch to the back of the toes, but not sufficient to make me fall or not be able to get around. I do get some left ankle swelling, so when I read or watch TV I keep my feet elevated.
I had some signs of neuropathy prior to diagnosis and treatment, mainly my left foot would go numb from time to time out of nowhere. I had to stop and wave it around to get it back, and took to using a cane – just in case! Only had that once in the past year.
But: I seem to be also in the less-than-one-percent who develop auditory neuropathy, although my oncologist is skeptical. My hearing test showed me about the same as before cancer and treatment, but everything comes through muffled, speech and music especially. I should say that I had an acoustic neuroma (benign tumor) radiated nearly 20 years ago and I am deaf in my right ear, so everything comes through my left. If there is a lot of ambient noise, I am lost. That predates the myeloma, but now I never know what direction a voice or sound is coming from, and usually guess wrong. I'm hoping that the supplements, and time, will make it better. In the meanwhile, since hearing aids won't help, I use a $5 "earglass" I found on ebay. It acts like cupping your hand behind your ear and adds about 10-12 decibels, which helps with TV, movies, or talking with my wife at the breakfast table.
And, I should say, the myeloma remains stable even after discontinuing the Velcade.
Doctors said "peripheral neuropathy" and discontinued Velcade in November. My fingers got better quickly, my feet not so much, so I'm taking L-carnitine and acetyl acid caps, minimal doses, plus omega-3 fish oil and magnesium. Incidences of lay-down discomfort are much less often now. My feet are still pretty numb from the arch to the back of the toes, but not sufficient to make me fall or not be able to get around. I do get some left ankle swelling, so when I read or watch TV I keep my feet elevated.
I had some signs of neuropathy prior to diagnosis and treatment, mainly my left foot would go numb from time to time out of nowhere. I had to stop and wave it around to get it back, and took to using a cane – just in case! Only had that once in the past year.
But: I seem to be also in the less-than-one-percent who develop auditory neuropathy, although my oncologist is skeptical. My hearing test showed me about the same as before cancer and treatment, but everything comes through muffled, speech and music especially. I should say that I had an acoustic neuroma (benign tumor) radiated nearly 20 years ago and I am deaf in my right ear, so everything comes through my left. If there is a lot of ambient noise, I am lost. That predates the myeloma, but now I never know what direction a voice or sound is coming from, and usually guess wrong. I'm hoping that the supplements, and time, will make it better. In the meanwhile, since hearing aids won't help, I use a $5 "earglass" I found on ebay. It acts like cupping your hand behind your ear and adds about 10-12 decibels, which helps with TV, movies, or talking with my wife at the breakfast table.
And, I should say, the myeloma remains stable even after discontinuing the Velcade.
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albertlannon - Name: Albert Lannon
- Who do you know with myeloma?: self
- When were you/they diagnosed?: June, 2017
- Age at diagnosis: 79
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