Lingering effects of peripheral neuropathy

I started to get some neuropathy just a few months into my first treatment, which was Thalomid. I knew it was a possibility, but I’m hopelessly optimistic, and assumed it wouldn’t happen to me. I quit taking thalidomide within 8 months, because I didn’t want the neuropathy to progress beyond a point that I thought would severely impact my quality of life.

What I ended up with is numbness in my feet and sometimes pain. It started out as a pretty intense burning feeling just three months after I started treatment in 2003.  My feet felt as though they were on fire!  From there, it progressed to numbness.  It sort of feels like my feet aren’t my own. Shoes are no longer comfy.

After treatment with Revlimid and then Velcade, my neuropathy progressed some more.  It changed a little, too.  I now have some significant pain at times. I have to work with my feet up.  I can’t sit at a desk, or anywhere, really, for very long. If I’m seated with my legs down for more than a half hour, I end up with pain up to my knees. I have to get my legs elevated or even lie down to get some relief.

When I first began to feel the effects of peripheral neuropathy (PN), I even had some trouble walking.  I’m used to it now, so I no longer have to keep my eyes on my feet when I walk.  It took a while for me to adjust.

A few days ago I was attempting a an exercise that involved hopping. It was really weird, because I didn’t really know where my feet were.  I had to ask someone else if my feet even left the ground!  That evening, while I was walking the dog, I tried something I hadn’t done in ages.  I tried skipping, just for the heck of it. I couldn’t do it!  Is that something I forgot how to do, or is the PN messing with me?

I decided to look for some information on the web, and found some facts on Livestrong.com:

What are the symptoms of neuropathy?

Peripheral neuropathy can affect the nerves which allow you to tell the position of your hands or feet, the nerves that allow you to sense hot or cold, or the nerves that carry pain sensation. The types and severity of neuropathy symptoms vary greatly. It is difficult to determine the degree of peripheral nerve injury only by the symptoms produced. Peripheral neuropathy symptoms are almost always greatest at night.

Common signs and symptoms include:

  • Numbness or tingling, especially of the hands or feet
  • Pain or cramping, especially of the hands , feet or calf muscles
  • Sensitivity to touch or temperature
  • Loss of reflexes
  • Muscle wasting in the hands and feet
  • Weakness, especially in the feet or hands
  • Clumsiness
  • Loss of balance, particularly in the dark
  • Dizziness, especially when getting up from a bed or a chair
  • Sexual dysfunction

Are some survivors at greater risk for neuropathy?

Neuropathy may occur from cancer or the treatment received. The following types of cancer may bring a higher risk:

  • Lung
  • Breast
  • Ovarian
  • Myeloma
  • Lymphoma and Hodgkin’s disease
  • Testicular

Here’s a link to the entire article: http://www.livestrong.org/site/c.khLXK1PxHmF/b.2660677/

I even found that they have a group for discussion of neuropathy secondary to drugs:

http://www.livestrong.com/groups/group/livestrong-neuropathy-secondary-to-drugs/

13 Comments

  1. Sid Hider

    Beth,
    Good posting and links.
    Peripheral neuropathy is a curse of some myeloma treatment especially Valcade and Thalidomid as you have found out.
    There is now research being carried out into PN cause and prevention. A bit late but at least the problem is being acknowleged.
    Sid

  2. Margaret

    If I ever need conventional treatment, your blog will be THE first place I will look for info. Thanks, Beth!

  3. NervyLisa

    Hi Beth,
    Great blog! Very informative and accurate. So very sorry to hear about your medicine-induced neuropathy. On Private Practice the medical drama, it was referred to as “neuro toxicity” when medicine is involved. By the way, I’m NervyLisa, the neuropathy activist. I witnessed my mom die bedridden and in great pain from severe acquired and inherited PN which is Charcot-Marie-Tooth. Now, her brother suffers with the same. He acquired his PN from failed back surgeries and also has CMT. The National Institutes of Health recognizes that in severe cases, like my mom’s, PN can contribute to respiratory failure and organ failure – which happened in my mom’s case. This is why I am committed to raising global awareness and spreading the word. No one should have to witness what I did. I hope you’ll be able to join me and other sufferers conquer this “suicide disease” by getting necessary funding and recognition. I’m on Facebook, Twitter, MySpace, Zazzle and LinkedIn as NervyLisa. If we don’t speak up, we don’t have a leg to stand on. Thanks for your time, and understanding! I hope we can connect. **While pregnant with me, my mom was prescribed Thalidomide. Tho, she didn’t take any, I could easily be in your shoes right now. My heart goes out to you and the pain you’re experiencing. It sounds so much like my uncle’s… Best wishes, Lisa

    • Sonya

      Hello Beth,

      I too, suffer from peripheral neuropathy. I’ve had it for a few years now. It causes numbness, burning, tingling, and stabbing pains, in my feet. It also causes pinprick sensations, up my legs and arms.

      My PN symptoms began, after I had surgery for a severe throat infection, in 2006. I was given lots of antibiotics, and pain meds afterwards.
      Never before, had I had any symptoms of PN, so this surgery, and course of meds, has apparently brought on PN.

      The prescription meds available to treat PN, cause some nasty side effects. Western medicine is hopeless, for treating conditions like PN So, I’d recommend trying acupuncture, and Chinese herbs. Acupuncture can greatly reduce PN symptems, and even cure PN.

      I plan to try it soon. When I do, I’ll write back, and let you know how well it works for me. If you decide to try acupuncture and/or Chinese medicine, I hope that it works well for you.

      Best wishes,

      Sonya.

      • Beth

        Hi Sonya,

        I did try acupuncture for about a year, with no change. I think the damage is irreversible in my case. I don’t know a single chemo (of these types) recipient whose PN has been cured. It seems to be permanent.

        Beth

        • Sonya

          Hi Beth,

          Sorry to hear that acupuncture didn’t work for you. I don’t know my if PN is reversible or not. So acupuncture might help mine.

          I’m forwarding you a link below, to a an article on website called, FootPainCenter.com:
          http://www.footpaincenter.com/blog/

          This article details how supplements, can help reduce pain from PN. I hope that this is helpful to you.

          Regards,

          Sonya.

  4. Ben Lankheet

    I have discovered something that really helps my PN, and it does it each time I use it. Vitamin B Complex. When my toes, and sometimes fingers, grow numb and painful, I take one “Super Vitamin B Complex”. By the next day my urine is bright yellow and the numbness fades. I take one pill per day for about 3 days and the PN is about 80% gone (it never goes away completely). I can then go for a few days without the Vitamin B until the PN starts to return. It works every time. Maybe it is just me, but this routine has worked for almost a year now. If anyone tries it, please post the results. Like I said, it may just be me, but it does work! I would love to hear that it helps others too.

    • Millie

      My husband is 76 years old and has survived for the last 5 years with myeloma. I guess the PN started some time back but today became very severe. I read Ben L’s blog and got out the Super B vitamins and offered them to my husband. He actually agreed to try them so today is the first day and I’m hoping it will help. I’ll keep you informed.
      I don’t usually offer anything to him but I can’t see that the B vitamins will interfere with his medication.
      Millie

  5. Peter 06

    I agree with Ben Lannkheet about vitamin B Complex alleviating PN. It is very informative to know about 3 days period. I used Super B complex with C and it worked before permanent damage has done, but I took these vitamins for much longer time. Why not?! In addition In my opinion the dose of drug causing neuropathy should be carefully titrated to tolerable symptoms if possible, if the disease is not overwhelming. Dividing dose may be another solution… So far I have never take Valcade, but if I do I will bring two containers fill with cold water during the time of injection. I will test how cold water should be at home. I think the temperature does not have to be icy cold. I am just exploring same mechanism of constricting blood vessels, and decreasing local absorption and metabolism of vulnerable tissue as chewing Ice chips during melphalan injection in transplant procedure to diminished probable mucositis…

    Peter 06

  6. Wanda

    I have a severe form of allodynia neuropathy and on some days it burns so much i cant stand to wear anything,meds only help a little.

  7. Millie

    Hello again. Sorry to take so long. My husband only took the B vitamin for one day. He went into hospital the next day for severe pain. He was addicted to the morphine so was taken off it and put on Meth. Is now taking Remlivid. Not doing too well. He complained of feeling very tired so was also given Ritlin, which made him even more tired! Also broke out in a nasty rash on his bottom, which we think was a reaction to the Ritlin. Has lost weight rapidly, not eating much. Getting weak. I believe this will be his last year.
    this is my 2nd and last reply. Millie

  8. Sarah

    Thank you so much for this information. I have a friend who suffers from peripheral neuropathy. This really helps me to understand.

  9. aiko

    Am sorry about Millie. Well actually, we here in Asia don’t have a choice for those medications and drugs you guys are having because we don’t have any choice. It’s either operation or death over here. And since one can’t afford, they just wait to be a goner.

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