Peripheral neuropathy This Infosheet explains what peripheral neuropathy is, what causes it in myeloma patients, how it is treated and some tips for self- management. What is peripheral neuropathy? What is the peripheral nervous Peripheral neuropathy is the term system? used to describe damage to the Your nervous system is made up of nerves that make up the peripheral two parts: nervous system. In myeloma the The central nervous system (CNS) nerves that are most commonly which consists of the brain and affected are those of the hands and the spinal cord feet. The peripheral nervous system (PNS) which consists of all the nerves outside the brain and spinal cord. The peripheral nervous system includes nerves Myeloma Symptoms Infosheet and Series complications Infoline: 0800 980 3332 1 in your face, arms, legs, chest and referred to as neuropathic pain and some nerves in your skull is highly individual to each patient. If The nerves act as communicators you develop any new pain and/or within the body and are made sensations, it is importatnt that you up of lots of specialised cells discuss them with your doctor or called neurons. Neurons pass on nurse as soon as you notice them. information about sensations and movement via electrical impulses. What causes peripheral There are different types of neurons: neuropathy in myeloma? Motor neurons – transmit Up to 14% of myeloma patients are impulses from the brain to the estimated to have symptoms of muscles throughout the body. peripheral neuropathy at diagnosis, In response to these impulses, but approximately 80% of patients muscles contract to cause develop some degree of it as a later movement complication of myeloma or as a result of treatment. The causes of Sensory neurons – found within peripheral neuropathy in myeloma the peripheral nervous system, are varied. They can include: these transmit impulses to the brain from all around the body. Treatments, such as thalidomide, Sensory neurons enable you to bortezomib (Velcade®) and feel sensations such as pain and vincristine (part of the VAD touch as well as sensing where treatment combination), your body is in relation to your which can all damage the surroundings nerve cells, particularly when given in high doses. If you When the nerves within have previously received one the peripheral nervous of these treatments then system become damaged you may be at greater risk of the messages that they carry neuropathy occurring with between the brain and the rest of subsequent treatments the body can become distorted or interrupted. This is what The paraprotein produced occurs in peripheral neuropathy; by the myeloma cells, which causing varying symptoms such can be deposited on nerve as altered sensation, tingling, tissue and damage the nerve numbness or pain. The pain cells. High levels of paraprotein caused by peripheral neuropathy is can also lead to thickening of the 2 www.myeloma.org.uk blood, called hyperviscosity. This your legs. This sensation may also may reduce the circulation of the start in your fingers and work its blood and lead to symptoms of way up your hands and arms peripheral neuropathy Unusual sensations or an Shingles (a common increased sensitivity to touch – viral infection), which can often even the slightest touch can cause neuropathic pain and cause extreme discomfort. This is changes in the sensation of the often worse at night time affected area(s) Altered sensation – such as In some cases, kidney damage a feeling of pain or heat when may cause peripheral neuropathy touching something cold due to fluids and waste products Numbness – in the hands and/ or accumulating in the body feet Diabetes, vitamin Muscle cramps, weakness and deficiency or a history of high tremor – this can interfere with alcohol consumption may your ability to perform everyday also contribute to the symptoms tasks of peripheral neuropathy Lack of co-ordination and/ or sense of position – it may What are the symptoms of sometimes seem that your peripheral neuropathy? body is not doing what you want The symptoms of peripheral it to. You may also find your neuropathy can vary from person sense of where things are in to person and will depend on which your surroundings can become nerves are affected. In myeloma, distorted the hands and feet are the most Loss of dexterity – performing commonly affected areas. everyday tasks that require Common symptoms include: intricate movements of the Pain – this can vary in fingers and hands, such as doing intensity and is often described up buttons, may become more as ‘sharp’, ‘burning’ or ‘jabbing’ difficult ‘Pins and needles’ – you Symptoms of peripheral neuropathy maynotice a tingling sensation often start off gradually but can which can start in your toes or become more problematic over the balls of your feet and travel up time. Therefore, it is extremely Infoline: 0800 980 3332 3 important that you inform your Sometimes it will be necessary to doctor or nurse as soon as you stop the treatment permanently in start to experience any of the above order to prevent long-term damage. symptoms. Peripheral neuropathy Your doctor will discuss alternative is often more manageable if treatment options with you. diagnosed early. For bortezomib-related peripheral You may have a nerve conduction neuropathy, changing the study carried out to confirm the route of administration from diagnosis of peripheral neuropathy, intravenous infusion (into a vein) identify which nerves are affected to subcutaneous injection (under and evaluate the extent of the the skin) significantly reduces damage. The test involves having the occurrence and severity electrodes attached to your skin of neuropathy. Bortezomib is which stimulate your nerves. You now increasingly given as a may feel a tapping or tingling subcutaneous injection. sensation but this shouldn’t be too An individual approach is necessary uncomfortable. to try and control the symptoms of peripheral neuropathy. They may be What are the treatments for improved through a variety of the peripheral neuropathy? following treatments. The key to the management of peripheral neuropathy is to eliminate Pain relieving medications or reduce the cause at the same Neuropathic pain caused by time as treating the symptoms that peripheral neuropathy may respond occur. best to: If the cause of the peripheral Anti-depressant drugs (such as neuropathy is related to the amitriptyline) myeloma itself, it may improve as Anti-epileptic drugs (such as your myeloma is treated. gabapentin or carbemazapine) If peripheral neuropathy is caused by treatment, lowering the dose of the Other treatments drug thought to be responsible or A range of other treatments discontinuing it for a period of time may help relieve your symptoms may relieve symptoms. However, including: this does not always lead to an Opioid drugs (such as codeine or immediate reduction in symptoms. morphine) 4 www.myeloma.org.uk Quinine tablets or drinking tonic Relaxation techniques water (which contains quinine) to Techniques such as meditation, help with cramps visualisation, relaxation or a Local anaesthetic injections or combination of these can be helpful patches (such as lignocaine) can in reducing muscle tension, which be effective in blocking the pain may be contributing to your pain. from the damaged nerves Transcutaneous electrical nerve Tips for self-management stimulation (TENS) machine can There are many things that you can sometimes help reduce your do to make living with peripheral level of pain by delivering tiny neuropathy a bit easier. electrical impulses to specific These include: nerve pathways through small electrodes placed on your skin Taking care of your hands and feet – wear well-fitting protective Complementary therapies shoes; keep hands and feet warm Acupuncture, reflexology and gentle Using caution when getting into massage may help to relieve some baths or showers – check the of your symptoms. temperature of the water first Vitamin supplements Taking regular gentle exercise – this will help to keep your muscles Supplements such as vitamin B toned and will improve circulation complex, folic acid, magnesium and alpha-lipoic acid are sometimes Stopping smoking – ask your GP considered helpful in managing the or practice nurse for advice and/ symptoms of neuropathy. or local support As there is no firm research to Eating a well-balanced diet – try support the use of these therapies to eat a diet that includes all the and supplements, it is essential to essential vitamins and minerals consult a qualified practitioner. Avoiding falls – try to reduce the You should also talk to your doctor risks in your own home by making or nurse to ensure that the therapies sure hallways and stairs are well lit or supplements are safe to use and and free from clutter that they do not interact with any of Using adaptations to help with your myeloma treatments. everyday tasks – ask your doctor or nurse about getting aids and Infoline: 0800 980 3332 5 adaptations, such as hand rails, peripheral neuropathy, for example fitted in your home the newer proteasome inhibitors ® Adopting good posture – avoid carfilzomib (Kyprolis ) and ixazomib ® sitting with legs crossed for long (Ninlaro ) have been shown to periods of time as this can put cause less peripheral neuropathy extra pressure on your nerves than bortezomib. Make use of warmth and cold As more is learnt about how - ice packs or hot water bottles to prevent, treat and manage may provide some short-term peripheral neuropathy, it is hoped relief. Wrap them in a towel this complication will become less before placing onto the skin and common and more manageable. it may be necessary to alternate between warmth and cold About this Infosheet If you drive, you are now required by The information in this Infosheet law to inform the DVLA if you have is not meant to replace the advice peripheral neuropathy.