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!