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Pat’s Place: Dealing With Peripheral Neuropathy

34 Comments By
Published: Nov 10, 2011 2:34 pm

I, like probably many multiple myeloma survivors, experience peripheral neuropathy.

Peripheral neuropathy is a condition that is a result of nerve damage. It is commonly found in diabetes patients and older people, as well as those of us with multiple myeloma.

Symptoms include numbness in the hands and feet, loss of balance, trouble writing, opening jars, trouble with buttons or zippers, and/or pain in various parts of the body.

Sometimes people who suffer from peripheral neuropathy experience something best described as “stingers”–shooting nerve pain which can race up and down their body for no particular reason.

I experience that from time to time, along with something I like to call “full body neuropathy.“

I experience this once I have had two or three consecutive Velcade (bortezomib) infusions. It feels like my entire body is tingling. Sometimes I hear buzzing, too.

Low blood pressure, chronic diarrhea, and sexual dysfunction may also be associated with peripheral neuropathy.

Peripheral neuropathy can be caused by nerve compression when a patient suffers vertebral damage caused by their multiple myeloma. It can also appear for no apparent reason, most likely caused by their myeloma.

But the most common cause of peripheral neuropathy are the anti-myeloma novel therapy agents we use. Thalidomide (Thalomid) is notorious for causing lasting peripheral neuropathy. Velcade is also a major cause, although Velcade-induced peripheral neuropathy often improves once a patient stops using the drug.

Revlimid (lenalidomide) is not thought to cause peripheral neuropathy. But my symptoms have intensified significantly since I started using Revlimid over four years ago.

So what can someone who experiences peripheral neuropathy do about it?

Suggestions from other patients and several oncology nurses I questioned include using a drug called gabapentin (Neurontin). Vitamin B, magnesium, and alpha lipoic acid top the list of recommended supplements.

Patients experiencing painful peripheral neuropathy might consider trying Cymbalta (duloxetine) or Lyrica (pregabalin), although insurance often doesn’t cover using these drugs for peripheral neuropathy unless a patient also has diabetes.

Alternative treatment ideas include massage and acupuncture. I have also heard that cocoa butter can help. Using topical magnesium helps me. I rub it or spray it on. It also works for cramping.

Maybe some of you can suggest other things which may be helpful. All I know is that experiencing some type of peripheral neuropathy symptoms is inevitable for those of us with multiple myeloma. Minimizing symptoms can make things a lot less inconvenient and painful.

Feel good and keep smiling!

Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon.

If you are interested in writing a regular column to be published at The Myeloma Beacon, please contact the Beacon team at .

Photo of Pat Killingsworth, weekly columnist at The Myeloma Beacon.
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34 Comments »

  • Myeloma Beacon Staff said:

    Additional tips from other myeloma patients on how to prevent peripheral neuropathy and to manage the pain associated with it can be found in the Beacon discussion forum. There has also been a discussion prompted by a previous news article about whether hot or cold water can help ease pain from peripheral neuropathy.

    Finally, the peripheral neuropathy tag page here at The Beacon is a useful link that will show all Beacon news articles that deal, in one way or another, with the issue of peripheral neuropathy.

  • Pat Killingsworth (author) said:

    Let’s all thank the Myeloma Beacon staff for their help and hard work! Anyone else out there have any tips to share?

  • Carol Wong said:

    I just have MGUS but I do have all over/24 hour neuropathy. I have the stingers, plus some weird spiraling electrical pain in my fingertips.

    I take Cymbalta twice a day. I can get the double dosage because I also have Major Depression. Neurotin does nothing for me, Lyrica helped until I had to change insurance companies. I also take Mag Ox (non-prescription but the pharmacist can order it for you. It works better for me than other magnesium supplements. I used to take sublingual B-12 tablets but I can’t remember to take them half of the time. I haven’t tried acupuncture but I have some free massage of my neck and back and it helped some. Can’t afford either one.

    Sometimes I can’t sleep because there is so much “electrical activity going on in my body. It really can be any where. Like my lips. my back, my feet, arms and legs, you name it. Also have numbness in legs and arms.

  • John S. said:

    My neuropathy, caused by Velcade (last dose in August), is largely limited to my feet with occasional symptoms in my hands. I use Gabapentine (two doses per day) which has largely reduced the symptoms to numbness and tingling, except for at bed-time when I experience the sharp “pins” and cramping. It was fading for a while, but since the ASCT it has returned. I have other post-ASCT symptoms yet as well, so there is hope that it will fade again once those symptoms also go away.

    A small price to pay, but a price nonetheless, eh?

  • Lynda Clark said:

    So is cramping associated with the neuropathy? I had lots of thalolidomide, since my treatment was back in 2005-2007, before newer generation drugs. I still experience constant numbness in feet, sometimes crawling up ankles. This, I can deal with. But horrible cramping of feet, legs, back (not just the occasional charley horse) causes me many sleepless nights. Could this be neuropathy-related or more related to vitamin deficiences, under hydration, sitting too long?

  • Pat Killingsworth (author) said:

    Thanks for sharing what works (and doesn’t work) for you, Carol. It takes time, practice and fine tuning. But every little bit helps, right?

    Lynda, I think cramping is associated with neuropathy–or at least they are both likely to occur when you use thalidomide! Revlimid causes cramping for me, too. Always my shin at night. Ouch! Maybe I should write about cramping next… Quinine water, lots of magnesium, topical magnesium oil rubbed where the cramping occurs. Those things sort of work for me. One good thing about infusions. Dex and Zometa tend to make me retain water. Not much chance to cramp when you’re bloated!

  • robert cain said:

    Try Calm, a magnesium citrate product, for cramping.

  • Pat Killingsworth (author) said:

    I’m not familiar with that, Robert. Thanks!

  • jade said:

    Hi Pat,

    My husband has myeloma – 4 years now, and he too has been through all the common meds resulting in neuropathy. An MD here @ Yale has tried him on B12 injections which have really made a big difference. 3x’s a week for 4 weeks, them weekly for 6 months, then monthly after that if you have good effect. He also uses cocobutter – only the very pure kind, and mag calm for leg cramping. I urge you to talk to your MD about B12 injections which appear to work better than pills which did not work at all for him.

  • Pat Killingsworth (author) said:

    I have heard that both of those things can help, Jade. I should have included them in my column. Thanks for bringing them up!

  • Annie M said:

    Hi Pat

    My husband suffers from neuropathy in his feet and thighs. He was quite surprised to find that reiki (one of the complementary therapies offered in the chemo unit) significantly reduced the pain for a few days.
    He has also been told that there is evidence that massage with peppermint oil can help. Has anyone heard of this?

  • Jack Hart said:

    Thank you for this information site, very helpful. I’m experiencing most of the Neuropathy effects mentioned above. It’s helpful to know some of the suggested “treatments”. Cramping in my hands and fingers has been a recent problem. I actually have to pry my fingers apart. Too much time on the Blackberry probably doesn’t help…I’m happy to be functioning well enough to be working full time at 68….I can pry those fingers apart and keep on going! Revlimid, Zometa, Magnesium, all part of the treatment. No doubt Velcade and Thalidomide got me here with the neuropathy. Has anyone tried tennis with neuropathy? It’s a whole new game.

  • Pat Killingsworth (author) said:

    I have heard from patients who use and swear-by both of those therapies, Annie…

    Jack, make sure you read the comments above yours–lots of additional suggestions from readers. And yes–I have tried playing tennis post myeloma. But I’m worried about possible fractures with all the sudden starts and stops, so I gave it up.

  • Lynda Clark said:

    Thanks for your suggestions! I’ll be scouring the aisles in the pharmacy for Calm magnesium! I am a volunteer for L&LS First Connection, and I always encourage newly diagnosed patients to check out this website and the forums; such good info presented.

  • Stephen Kramer said:

    Peripheral neuropathy associated with the treatment for multiple myeloma can at times be successfully treated with levocarnitine. A few months ago, when blood tests determined that my carnitine levels were very low, my hematologist prescribed oral levocarnitine, and within 6 to 8 weeks I noticed a marked reduction in pain, particularly in my feet. In addition, I was able to significantly reduce the amount of Neurontin I was taking to deal with this symptom.

  • Boris Simkovich said:

    Thanks for the positive feedback regarding the work all of us involved with The Beacon are doing, Lynda. We appreciate the kind words, and we also appreciate your letting others know about what we’re doing.

    All the best,

    Boris Simkovich
    Publisher, The Myeloma Beacon

  • suzierose said:

    Hi Lynda,

    I was in Vitamin Shoppe, and they have Calm Magnesium.

  • suzierose said:

    Hi Stephen,

    Most often times the packaging for levocarnitine…says L-carnitine…that may make it easier for folks to find.

  • Pete N said:

    To prevent cramping try SlowMag. I’ve been taking it since Mar 2011 (the end of my hospitalization for my second ASCT) and I’ve never gotten a cramp. I take two pills in the AM and two pills about 12 hrs later.

    In Sept 2011 I switched from IV Velcade to Subc Velcade. In Oct 2011 I started taking Metanx to reduce the symptoms of PN. It seems to be working. Metanx is a prescription drug consisting of Vitamin B6 and B12 and alpha lipoic acid.

    These work for me. YMMV.

  • suzierose said:

    Nancy,

    Ooops, I meant to say that HI DOSE chemo PRECEEDING stem transplants needs to be re-evaluated/assessed as a standard of care regimen for MM in light of the new innovative therapies, not just autologus BSCT.

  • David Smith said:

    Suzierose,

    I was hoping my wife could avoid transplant with these new drugs. Her Igg is only 1400 and her m-spike is 0.3 but she suffers from a large forehead plasmacytoma 5cmX5cmX1.6cm. She cannot take zometa due to newly diagnosed Necrosis of jaw.

    She is starting the transplant process this saturday :(

  • Cynthia Baker said:

    I’m concerned that I have not heard from Pat in a few days. Is he all right? Please let his readers know if you know anything? We all have come to hold him dearly in our hearts from his blog. My husband and I prayed for his safekeeping last night. Thanks to all who can respond to this question.

  • Myeloma Beacon Staff said:

    Thank you very much for your concern, Cynthia.

    Pat has been running a high fever lately, and he’s a bit exhausted, so he hasn’t been as active the past few days as he usually is. But he should be up and running again later this week or early next week. It’s just been a really, really bad fever that’s been very draining for him, physically and emotionally.

  • Cynthia Baker said:

    We will continue to hold Pat up in prayer and see him through this crisis in his health. Please know that I appreciate his columns so very much. They are so informative and I pass them on to friends and family when there is something that is of particular interest. You are a real trooper, Pat, and I appreciate you so very much. Keep looking up, things will get better for you.

  • Nancy S. said:

    Best wishes Pat, and hope you are feeling better soon and able to get out and enjoy the sunshine! Take good care of yourselves!

  • Pat Killingsworth (author) said:

    I want to thank Cynthia and Nancy (and so many others) for your concern–and the Beacon Staff for kindly keeping you updated!

    I’m currently in Oak Hill Hospital in Brooksville, Florida (about 10 minutes from my home) after my neutrophil/white blood count crashed Friday. The stomach flu certainly didn’t help!

    Cynthia isn’t the first reader to notice I haven’t been active lately. One concerned reader even called me at home to check on me. How cool and encouraging is that!

    I will share a lot of this in my monthly Beacon column next week.

  • Kansas said:

    Pat, I’ve been wondering why I hadn’t seen any postings or articles from you – had hoped that you were just out there enjoying the Florida weather in winter. Our very best to you for a quick recovery! Rex and Kay

  • Kathy in Wisconsin said:

    Dear Pat,
    SOOOOO happy to know that you are ok. You are in my prayers. MY husband is
    Day 85 post transplant , so we have yet to know how his numbers are.
    God Bless you and your wife too!

  • Pat Killingsworth (author) said:

    Congrats on your husband! Best of luck to both of you! Pat

  • Angela Bennett said:

    I began a 3yr maintenance program of weekly velcade, 21days on/7 days off cycle revlimid, and once wkly dex in sept. 2011. I am at work full time and loving it but am experiencing side effects including neuropathy. I had tingling in one foot that came and went but my finger tips of my right hand tingled constantly and sometimes felt like pins sticking them. I also have been experiencing what I called restless leg syndrome (my husband called it “crazy legs”!) but my arms also jerked involuntarily and then my head began jerking. All occurred late evening and contributed to my insomnia. My dr. told me in dec. that these were also a form of neuropathy. He started me on sub q velcade rather than IV and prescribed requip for the body jerks. The neuropathy in my hand and foot are completely gone and the jerking is significantly reduced and completely controlled with the requip! I hope this info. is beneficial to anyone else experiencing like symptoms. I am very blessed to be in complete remission and am grateful for these new therapies that are extending my survival time, but am also thankful to websites such as these that provide suggestions that improve quality of daily living. Thank you Pat and all you respondents. Keep up the good work. I wish you all the best! (By-the-way Pat, I too am just recovering from flu, respiratory though, which caused me to become neutropenic, thrombocytapenic, and anemic running 102 fever for nearly 10 days. I was given a week off from my velcade, revlimid, and dex and recovered my counts by the time for my next dose. Feeling great now and hope you are as well.)

  • Pat Killingsworth (author) said:

    I’m glad you found something to help with the neuropathy. Did you say “Requip” as in ropinirole? I will have to add that to my PN file. Good for you for working!

  • Angela Bennett said:

    Yes, it is ropinirole that I’m taking. I hope it helps someone else as well as it’s helping me.

  • Cheryl said:

    Pat,

    Glad to hear you’re okay. I really enjoyed meeting you in person in Charlotte.

  • Pat Killingsworth (author) said:

    Me, too! To say you are “warm and charming” would be an understatement!