Living For Lamingtons: Nasty Neuropathy
Neuropathy has been a feature of my myeloma “experiences” for many years. Even long before I was diagnosed, I had neuropathy. It mostly affected my hands and feet, but it could affect other areas of my body as well.
It drove me crazy, and from time to time I tried to find out what was causing it. I had no success at all in my quest. I even once went as far as insisting that I see a neurologist. He did some tests to rule out certain conditions, but he didn’t give any suggestions as to what might be wrong.
So I lived with it. At that stage, it was a skin tingling sensation that irritated me. There was nothing to see, and I wasn’t unwell, but I was concerned. Sometimes it felt like pins and needles, other times it felt numb, and sometimes it felt as if something was pushing against me and touching my skin. I had these sensations, with varying degrees of severity, for about 10 years before my multiple myeloma diagnosis.
Then I did become ill and eventually was diagnosed with multiple myeloma. I was living in Singapore at the time, and my doctor there asked me lots of questions about my previous medical history, and I told him about the neuropathy. He explained that, in some cases, the myeloma-related proteins damage nerves and cause all these sensations. He wasn’t sure if the damage was permanent. He mentioned that some of the myeloma treatments, such as Velcade (bortezomib), also can cause neuropathy.
I can’t say I was too worried about this possible 'extra' neuropathy; I was more concerned about getting back on my feet and trying to gather strength for what lay ahead.
Unfortunately, further neuropathy affected me after my induction treatment. The new neuropathy was a bit different from what I had experienced before; it was more concentrated on my feet and legs, and it felt more stabbing and burning. It mostly started in the evening and lasted throughout the night. It wasn't too bad, although it was annoying and kept me awake. At the time, there were plenty of other, more pressing problems to worry about, such as the stem cell collection and the actual stem cell transplant.
I can remember the doctor saying that the treatment-induced neuropathy might go away or it might persist. Unfortunately, my treatment-induced neuropathy has persisted and is now mixed up with the original neuropathy.
Strangely, I have found that sometimes the neuropathy is quite bearable, while other times it seems to go into a very active phase. I don't know why this happens, but I think that, if I am experiencing an infection, particularly shingles, the neuropathy appears to become more obvious and active.
I have also found that Lyrica (pregabalin), if taken regularly, keeps the neuropathy more or less under control. I constantly try to take as little Lyrica as possible as I find its side effects quite restrictive. The drug makes me feel sort of dizzy and uncoordinated. It is always difficult to explain to other people why I am acting rather strangely. However, I have noticed that the Lyrica effects wear off as the day goes on, and by lunchtime, I am more or less back to normal.
I also have noticed that being distracted with something else provides some relief. For example, simply moving about and being busy helps. I don’t think that it actually reduces the neuropathy, but I don’t ‘feel’ it as much.
I was telling a very good friend of mine about the annoying neuropathy, and she wrote this little poem that I think describes my current situation very well!
Neuropathy – well here’s the thing,
It’s numb, it stabs, it pricks, it stings.
Myeloma often brings it on,
As well as drugs – a double prong!
The treatment? ‘Lyrica’ they say,
Will help to keep the pain at bay.
Yet that can sometimes floor you flat,
And stop you doing what you want.
For me distraction helps a lot,
I move and best of all I walk,
Whilst listening to the radio.
Distraction is the way to go!
And don’t forget the lamingtons and tea,
These are the things that work for me!
Marjorie Smith is a multiple myeloma patient and columnist here at The Myeloma Beacon. Her column is published once a month. You can view a list of her columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
I had some left foot and leg neuropathy prior to diagnosis, and initial treatments seemed to make that go away for a good while. But the Velcade brought on neuropathy in both feet and my hands, and sometimes in my hips, leading to a numb butt! I added magnesium and acetyl carnitine-alpha lipoic acid tablets to my supplement mix, with the doctor's okay.
Butm, with age, before diagnosis, I had a fair amount of cramping, and began taking raw apple cider vinegar in juice (tomato works best) and that controlled them pretty much. Back on Velcade now, with Darzalex, etc., and fairly often get nasty foot spasms when going to sleep or napping, along with hand cramps. I rub the raw apply cider vinegar on my hands and feet and in a minute or two I'm good. And I sleep.
I'm not a "natural foods" devotee, but I am trying to limit the amount of drugs going into my poor overworked system.
I love your friend’s poem. Although, fortunately, I don’t have neuropathy, I can empathize with you. Occasionally I develop numbness or pins and needles in two fingers. I’m aware that it’s happening, but it doesn’t bother me until I’m quiet.
Enjoy your lamingtons and tea. I’ll join you virtually.
Nancy in Phila
Dear Marjorie, thank you for sharing your experience with neuropathy. My husband also suffered from neuropathy for several years after his induction therapy. Today, he says it is intermittent and bearable. He had really adverse reactions to Lyrica, so he couldn’t take it. What you describe seems to be quite common among myeloma patients as well as other cancer patients.
Albert, thank you for the home remedy. My husband said he will try it!
Marjorie,
I found your story very interesting, as I have been trying for three years to find the reason for the tingling pain across my face, specifically across both cheeks and behind my nose. The pain wraps around to the back of my head and increases in intensity behind my right ear. Also, my upper lip and upper teeth also tingle and sometimes throb. I have tried multiple things: mouthguard from my dentist, acupuncture, physical therapy, chiropractor, two different neurologists, massage treatments, CT scan of sinus bones, MRI of brain to check for tumor, sleep study for possible apnea, etc. No one can explain the pain, and nothing will take away the tingling pain. I can take 800 mg of Advil and the pain is still there.
I have been on Velcade for 4 years (every-two-weeks treatment schedule). My oncologist does not believe the pain is related to Velcade, and he says he's not heard of this type of neuropathy across the face, but I am thinking that the pain is a form of neuropathy. Right now they are trying gabapentin for the pain, but that is not working either. I recently visited an ENT physician and she wants to do another CT scan of the sinus bones. I'm getting extremely depressed because it's the daily pain that is bringing me down. My myeloma treatment is going fine, and I'm in stringent complete response using the Velcade. I did a stem cell transplant 4 years ago. I wish I could find out the source of the problem.
Marjorie,
I love the poem. What a gift!
I had just one numb big toe upon diagnosis, and had had it for several years. But then came the dreaded, but curative, Velcade! The pain, numbness, searing burning. I’d like to just forget it! But some of it still remains, and it seems that every treatment I’ve used, including Revlimid, Pomalyst, and now Darzalex, increases the peripheral neuropathy some. I could add also muscle cramping, which my doctor says is also a form of neuropathy.
Oh what fun we go through! But, hey, we are alive!
Blessings, Julia
I'm so sorry you've had problems with neuropathy. I have some and don't know if it's going to gradually get worse as I live for however long I have, but I'm so thankful I haven't had to resort to Lyrica. Sometimes the treatment can feel worse than what you're taking it for. We are all so different, too. One gentleman I know, who has taken thalidomide and Velcade, never had any neuropathy!
I wish you well and relief from neuropathy. Enjoyed your article!
Dear Albert, it was very interesting to hear of your recipes and potions! I will try that. Thank you. I hope that you continue to get some relief and some sleep! Very best wishes to you.
Hi Nancy, I am glad that you liked the poem, I will tell my friend. It was interesting to hear that you also are not so aware of the pins and needles until you are quiet. Cheers!
Dear Patty, I am glad to hear that your husband's neuropathy is bearable. I certainly hope that it stays that way. Wishing you both a good spring and thanks for your comments and kind wishes.
Dear Cheryl, I am really sorry to hear about the pain you are in. It sounds awful and quite familiar to me. I also had the worst effects around my face and inside my mouth. Recently I was in a very bad way and I found a doctor who was a specialist in this sort of pain. She was fantastic and really helped me. Perhaps you can find someone similar? She explained the way in which nerves, once damaged, sometimes behave and gave me the confidence to increase the medication. Good luck to you, Cheryl, and I hope you find someone who can help you control the pain.
Hi Julia, your comment describes the horrible story so well. Effective medicines with powerful side effects. I love to read what you say, particularly, hey, we are alive! Thanks for your comment and I am going to enjoy being alive on this lovely Scottish spring day!
Dear Susan, thank you for your comments and your good wishes. As you say we are all very different so perhaps your neuropathy will stay quiet. Good luck and best wishes.
Dear Marjorie, I am sorry to hear that you are having so much neuropathy. I know that it is cancer related as well as drug related from my own experience. Before I was diagnosed, I remember my feet going very numb when as a singer I was standing on risers for a whole concert, for about two hours, with an intermission. I just stumbled down after the performance. It seemed odd at the time. Later, after four cycles of Velcade given by infusion, the numbness intensified. My doctor asked me about this continuously, and that could be why I had so few cycles before a stem cell transplant. I still have tingling in the front of my feet! Some simple strategies I use to help my feet is to use peppermint foot cream, wear fleecy socks for sleeping, and to take vitamin B12 and multivitamins. Also, I did get the two-part, non-live shingles vaccine last year to avoid getting that viral disease. Hope that might help you! My neuropathy has not been so severe that I need prescription drugs, though. Thanks for your column, and keep on writing please!
Dear Nancy, thanks for your kind wishes and suggestions. I did use a peppermint gel in the past and I will try that again. The shingles vaccine is still not recommended here in Scotland, but the pain specialist who I saw said that it would be a good way forward for me, so I will keep trying to get it. Good wishes to you Nancy, I hope that you’re able to enjoy the springtime.
I developed neuropathy in my feet, a numbness like novacaine, in 2013 when I was being treated with thalidomide (Thalomid). Now it is worse up my legs, with cramps at night. I drink from a small bottle of vinegar, honey, and water, which relieves the cramps within minutes. I am seeing a neurologist tomorrow, but if she suggests Lyrica or any other drug, I think I will just "suffer" through. Too many pills these days with treatment nonstop since 2008. Water aerobics and yoga help too.
Dear Marjorie,
It is very unfortunate that you are concerned about neuropathy. My wife also has strong neuropathy. For a long time they picked up a combination of Lyrica and duloxetine to get rid of the pain, numbness, cramps, and stiffness. It really helps.
Good luck with your treatment.
Dear Suzanne – Sorry to hear that we’re in a similar situation. I hope you get some help from the neurologist. I would love to try water aerobics and can just imagine how that would help. I also find yoga helps, and it seems to concentrate the mind away from the pain. Wishing you all the very best.
Hi Tish - I am very glad to hear that the treatment helped your wife. I haven’t heard of duloxetine, so thanks for that tip. Thanks also for commenting, and every best wish to you both.
Dear Marjorie,
Thinking about you and hoping your neuropathy is not too bothersome today.
Your idea about distraction sounds like a good one. Take care.
Marjorie, would it help if you took Lyrica at bedtime? It seems like some of the side effects would be taken care of by the time you got up for the day. I pray that things get better for you.
Dear Sylvia, many thanks for your kind comments. I have had a good day today! I had acupuncture which seems to help. Best wishes to you.
Dear Angie, I do take most of the dose at night but find, at the moment, that I need to also take some Lyrica in the morning or by afternoon I’m struggling. Thank you for replying and for your good suggestion. I am aiming for the nighttime only dose! With every best wish to you Angie.
Marjorie, Thank you for this timely column. I'm sorry to hear that you've had such problems with neuropathy. My husband, Daniel, has been on Revlimid since last March, and he continues to take it with his maintenance therapy. We keep a vigilant eye out for neuropathy, for sure. Your descriptions helps us to know what to look for. I'm so glad to hear that acupuncture helps. I'm tucking that bit of advice away, in case we need it later.
Wishing you the best - take care!
Hi Marjorie,
I fully understand your situation in dealing with neuropathy. It's painful for everybody who gets it, in different ways.
I got it in the third cycle of therapy, and asked to stop the Velcade. The pain was intense so much that I couldn't think well and had forgotten everything around me. Crazy. The pain receded with Neurontin (gabapentin), and stopped to leave me now with 90% of walking ability. I'm grateful of this outcome.
I have found natural remedies such as acupuncture to be beneficial, and I hope you get the most out of it. Walking outdoor is also beneficial for blood circulation and flow. I believe that vitamin B helps too with neuropathy.
I can only say you are brave. Thank you for sharing your story.
Best wishes for a wholesome recovery.
Gwen
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