I don't have pain or burning, or stinging sensations, in my hands and feet, but actual numbness. My extremities get cold quicker when outdoors in lower temperatures and sometimes I run hot water on my feet at the end of a shower just to see if I can feel it, but they just feel numb. I've been told and read that Velcade was responsible, as has the Revlimid maintenance I'm on. I've started palliative care in order to get a better handle on this, but their answer so far has been increasing my gabapentin or pursuing other options.
Do I have peripheral neuropathy or is it nerve damage which to me seems beyond repair? Can I ever recover?
This is a quality of life concern because I'm already slowed down by the bone damage I've suffered.
Kully
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kullybunnny1 - Name: Kully
- Who do you know with myeloma?: me
- When were you/they diagnosed?: August 2013
- Age at diagnosis: 48
Re: Is it peripheral neuropathy, and will I recover from it?
How long ago was your Velcade treatment? If Velcade is the reason, it often does subside.
Re: Is it peripheral neuropathy, and will I recover from it?
Hi kullybunny1,
What you describe sounds similar to the peripheral neuropathy I've experienced, although your numbness may be worse than mine. If I run hot water on my feet in the shower, I do feel it.
From what I've read, it seems like peripheral neuropathy, like pretty much everything else about multiple myeloma, can vary a lot from person to person. Some people are on Velcade for quite awhile and never have any peripheral neuropathy symptoms. I started having tingling in my fingers during my very first cycle of Revlimid, Velcade, and dexamethasone. For some people, the symptoms resolve over time, where it can take months or even up to a couple of years. For others, it is an ongoing thing, even after Velcade and/or Revlimid are stopped.
So it's hard to answer your question about whether you will recover from the peripheral neuropathy you're experiencing now.
I would advise you to be explicit with your medical team about the peripheral neuropathy symptoms you're experiencing. If you're currently on Velcade, I would bet that they'll reduce or stop your dose of it. Perhaps also reduce or stop Revlimid, if you're on that (although my myeloma specialist says he doesn't think Revlimid contributes to peripheral neuropathy; there seems to be some debate about that.)
Lyrica, Cymbalta, B-100 complex, alpha lipoic acid and L-carnitine all have helped my peripheral neuropathy.
Best wishes to you in finding a way to deal with this. I can be a serious issue!
Mike
What you describe sounds similar to the peripheral neuropathy I've experienced, although your numbness may be worse than mine. If I run hot water on my feet in the shower, I do feel it.
From what I've read, it seems like peripheral neuropathy, like pretty much everything else about multiple myeloma, can vary a lot from person to person. Some people are on Velcade for quite awhile and never have any peripheral neuropathy symptoms. I started having tingling in my fingers during my very first cycle of Revlimid, Velcade, and dexamethasone. For some people, the symptoms resolve over time, where it can take months or even up to a couple of years. For others, it is an ongoing thing, even after Velcade and/or Revlimid are stopped.
So it's hard to answer your question about whether you will recover from the peripheral neuropathy you're experiencing now.
I would advise you to be explicit with your medical team about the peripheral neuropathy symptoms you're experiencing. If you're currently on Velcade, I would bet that they'll reduce or stop your dose of it. Perhaps also reduce or stop Revlimid, if you're on that (although my myeloma specialist says he doesn't think Revlimid contributes to peripheral neuropathy; there seems to be some debate about that.)
Lyrica, Cymbalta, B-100 complex, alpha lipoic acid and L-carnitine all have helped my peripheral neuropathy.
Best wishes to you in finding a way to deal with this. I can be a serious issue!
Mike
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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: Is it peripheral neuropathy, and will I recover from it?
Thanks for the responses;
Irankin:
I stopped my Velcade treatments which were done in conjunction with my initial induction therapy in December 2014.
MikeB:
The reason for me to seek palliative care was due to my concerns for my future medical treatments. I've already sought out a resolution for my Revlimid induced diarrhea – colestipol (Colestid) – and I've mentioned my numbness at every doctor consult. Because of the extreme bone damage that occurred with me, I was slow to see how involved my neuropathy was. Now that I'm better able to move, the numbness greatly limits my daily activities.
I've read about the burning and stinging of neuropathy, which seems to be controlled by the gabapentin, but I've never truly read anything in regards to numbness other than nerve damage. In the back of my mind I think about spinal cord compression (I lost 5 inches of height) issues. However, I've had 3 MRI and kyphoplasty procedures on my spine and have never heard this mentioned as a concern.
What turned out to be the last straw was my local oncologist urging my to speak with my myeloma specialist about my quality of life concerns.
So ultimately what I'm seeking is: Will I ever be able to feel my feet again? I really feel like all the members of my medical team just keep kicking this can down the street.
Thanks again for the thoughts.
Kully
Irankin:
I stopped my Velcade treatments which were done in conjunction with my initial induction therapy in December 2014.
MikeB:
The reason for me to seek palliative care was due to my concerns for my future medical treatments. I've already sought out a resolution for my Revlimid induced diarrhea – colestipol (Colestid) – and I've mentioned my numbness at every doctor consult. Because of the extreme bone damage that occurred with me, I was slow to see how involved my neuropathy was. Now that I'm better able to move, the numbness greatly limits my daily activities.
I've read about the burning and stinging of neuropathy, which seems to be controlled by the gabapentin, but I've never truly read anything in regards to numbness other than nerve damage. In the back of my mind I think about spinal cord compression (I lost 5 inches of height) issues. However, I've had 3 MRI and kyphoplasty procedures on my spine and have never heard this mentioned as a concern.
What turned out to be the last straw was my local oncologist urging my to speak with my myeloma specialist about my quality of life concerns.
So ultimately what I'm seeking is: Will I ever be able to feel my feet again? I really feel like all the members of my medical team just keep kicking this can down the street.
Thanks again for the thoughts.
Kully
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kullybunnny1 - Name: Kully
- Who do you know with myeloma?: me
- When were you/they diagnosed?: August 2013
- Age at diagnosis: 48
Re: Is it peripheral neuropathy, and will I recover from it?
Kully,
In your post at the beginning of this thread, you asked:
Perhaps you're clear on this, but I thought it worth pointing out that nerve damage is the cause of peripheral neuropathy. It's not an either-or thing.
Also, numbness can be one of the ways neuropathy manifests itself.
The Wikipedia article on peripheral neuropathy (link) has a lot of valuable information; it's worth checking out given some of the questions you have. A few useful excerpts:
"Peripheral neuropathy (PN) is damage to or disease affecting nerves, which may impair sensation, movement, gland or organ function, or other aspects of health, depending on the type of nerve affected."
"In terms of sensory function, symptoms [of peripheral neuropathy] commonly include loss of function ("negative") symptoms, including numbness, tremor, impairment of balance, and gait abnormality. Gain of function (positive) symptoms include tingling, pain, itching, crawling, and pins-and-needles. Motor symptoms include loss of function ("negative") symptoms of weakness, tiredness, muscle atrophy, and gait abnormalities; and gain of function ("positive") symptoms of cramps, and muscle twitch (fasciculations)."
In your post at the beginning of this thread, you asked:
"Do I have peripheral neuropathy or is it nerve damage which to me seems beyond repair"
Perhaps you're clear on this, but I thought it worth pointing out that nerve damage is the cause of peripheral neuropathy. It's not an either-or thing.
Also, numbness can be one of the ways neuropathy manifests itself.
The Wikipedia article on peripheral neuropathy (link) has a lot of valuable information; it's worth checking out given some of the questions you have. A few useful excerpts:
"Peripheral neuropathy (PN) is damage to or disease affecting nerves, which may impair sensation, movement, gland or organ function, or other aspects of health, depending on the type of nerve affected."
"In terms of sensory function, symptoms [of peripheral neuropathy] commonly include loss of function ("negative") symptoms, including numbness, tremor, impairment of balance, and gait abnormality. Gain of function (positive) symptoms include tingling, pain, itching, crawling, and pins-and-needles. Motor symptoms include loss of function ("negative") symptoms of weakness, tiredness, muscle atrophy, and gait abnormalities; and gain of function ("positive") symptoms of cramps, and muscle twitch (fasciculations)."
Re: Is it peripheral neuropathy, and will I recover from it?
TerryH,
Thanks for the response. Yes, I've read the definition of peripheral neuropathy and I do realize the connection between the two in regards to numbness. It's not an either-or. Ultimately what I'm asking is whether, with neuropathy to the extent of numbness I have, it's possible to return to having at least a sensation again? I'm also wondering whether my bone involvement plays a role, as I literally walk with the aid of a cane and feel like I'm swinging blocks rather than my feet. And this makes quality of life, the continued determination to keep moving forward, my ultimate concern.
I read the Beacon for updates on new treatment options, to be inspired by stories of individual successes, but struggle when I read about folks who are able to live their new normal with little challenges, while I throw my feet out of bed in the morning and have to look down to make sure I'm touching the floor.
Thanks again for the thoughts.
Kully
Thanks for the response. Yes, I've read the definition of peripheral neuropathy and I do realize the connection between the two in regards to numbness. It's not an either-or. Ultimately what I'm asking is whether, with neuropathy to the extent of numbness I have, it's possible to return to having at least a sensation again? I'm also wondering whether my bone involvement plays a role, as I literally walk with the aid of a cane and feel like I'm swinging blocks rather than my feet. And this makes quality of life, the continued determination to keep moving forward, my ultimate concern.
I read the Beacon for updates on new treatment options, to be inspired by stories of individual successes, but struggle when I read about folks who are able to live their new normal with little challenges, while I throw my feet out of bed in the morning and have to look down to make sure I'm touching the floor.
Thanks again for the thoughts.
Kully
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kullybunnny1 - Name: Kully
- Who do you know with myeloma?: me
- When were you/they diagnosed?: August 2013
- Age at diagnosis: 48
Re: Is it peripheral neuropathy, and will I recover from it?
May I recommend you ask about the possibility of Raynaud's syndrome with your internist, GP, or your palliative care physician. Years prior to spouse's diagnosis of multiple myeloma, Raynaud's was confirmed. It does not have to be very cold for it to occur.
There are many great resources online about Raynaud's. Just like multiple myeloma, however, do not take demographic information presented in the literature about Raynaud's as gospel. It just is not true.
Everything that happens to the body is not necessarily multiple myeloma-related or multiple myeloma treatment related. My 2 cents.
There are many great resources online about Raynaud's. Just like multiple myeloma, however, do not take demographic information presented in the literature about Raynaud's as gospel. It just is not true.
Everything that happens to the body is not necessarily multiple myeloma-related or multiple myeloma treatment related. My 2 cents.
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ZippyZelda - Name: ZippyZelda
- Who do you know with myeloma?: Spouse
Re: Is it peripheral neuropathy, and will I recover from it?
Kully,
I can relate to what you've written, and thanks for sharing!
I have peripheral neuropathy, and have similar (non) feelings in my feet. I have learned to just accept them and carry on. This doesn't mean that I have given up hope on ever getting the feelings back. But I have been through some very scary times in the last year or so that may have quite easily left me with permanent cord damage (and I am still feeling some effects from this), that I think my PN is somewhat of a minor issue. I'm not trying to invalidate your feelings, just saying how I've come around to mine. Hope you have success dealing with all of this.
Gary
I can relate to what you've written, and thanks for sharing!
I have peripheral neuropathy, and have similar (non) feelings in my feet. I have learned to just accept them and carry on. This doesn't mean that I have given up hope on ever getting the feelings back. But I have been through some very scary times in the last year or so that may have quite easily left me with permanent cord damage (and I am still feeling some effects from this), that I think my PN is somewhat of a minor issue. I'm not trying to invalidate your feelings, just saying how I've come around to mine. Hope you have success dealing with all of this.
Gary
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GaryH - Name: GaryH
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Nov./97
- Age at diagnosis: 44
Re: Is it peripheral neuropathy, and will I recover from it?
Hi All,
I'm also suffering from peripheral neuropathy (PN), in addition to a bit of plantar fasciitis in both feet. I stopped my Revlimid, Velcade, and dexamethasone (RVD) treatment in mid December. Although I don't let it stop me from doing MOST of the things I did before. Most of the peripheral neuropathy is in the balls of my feet - really can't feel them. And the plantar fasciitis runs from my instep into my heels. I have some orthopedic inserts that help the plantars, and I don't feel the PN much when I have my shoes on. I have to be careful in the shower not to run too much hot water on my feet - this aggravates the plantar.
Hoping this goes away soon. I don't take any medication for it. I just don't want to start another medication.
Best
I'm also suffering from peripheral neuropathy (PN), in addition to a bit of plantar fasciitis in both feet. I stopped my Revlimid, Velcade, and dexamethasone (RVD) treatment in mid December. Although I don't let it stop me from doing MOST of the things I did before. Most of the peripheral neuropathy is in the balls of my feet - really can't feel them. And the plantar fasciitis runs from my instep into my heels. I have some orthopedic inserts that help the plantars, and I don't feel the PN much when I have my shoes on. I have to be careful in the shower not to run too much hot water on my feet - this aggravates the plantar.
Hoping this goes away soon. I don't take any medication for it. I just don't want to start another medication.
Best
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Kebo - Name: Kebo
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2008
- Age at diagnosis: 51
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