AL and autonomic neuropathy

This Infosheet explains what autonomic neuropathy is, what causes it in AL amyloidosis patients, what its symptoms are, how it is treated and some tips for self-management.

What is autonomic neuropathy? outside the brain and ). Autonomic neuropathy is the term It is responsible for automatically used to describe damage to the (autonomously) regulating nerves that make up the autonomic processes in the body that are . not controlled by conscious effort. This includes controlling internal What is the autonomic nervous processes such as: system? „„Blood pressure The „„Heart rate is part of the peripheral nervous „ Digestion system (the part of the nervous „ system that consists of the nerves „„Bladder function

AL amyloidosis Symptoms and Infosheet complications Series Infoline: 0800 980 3332 1 „„Sexual function „„Digestive tract – , diarrhoea, feeling of fullness For more information about the peripheral after small amounts of food, nervous system and (particualrly after eating), see the Peripheral neuropathy Infosheet from Myeloma UK „„Bladder – frequent urinary tract What causes autonomic infections, incontinence, urinary neuropathy in AL amyloidosis? retention (inability to empty your The abnormal amyloid protein bladder) that is produced in AL amyloidosis „„Heart – low blood pressure, can deposit in various tissues and , fainting, exercise organs including the autonomic intolerance, heart attacks nervous system. Amyloid deposits „„Genitals – , forming around nerves can vaginal dryness damage them and interfere with the information sent along them What are the treatments for between the brain and the organs of autonomic neuropathy? the autonomic nervous system. This Nerve damage is irreversible but the causes their function to be impaired symptoms of autonomic neuropathy and causes symptoms. can be managed to improve quality of life. To prevent further autonomic What are the symptoms of neuropathy occuring, the underlying autonomic neuropathy? AL amyloidosis is treated while The symptoms of autonomic existing symptoms are controlled. neuropathy depend on the nerves affected. Early symptoms can Complimentary therapies, such as include dizziness when standing acupuncture and transcutaneous and nausea and/or vomiting when electrical nerve stimulation (TENS), eating. may help to relieve some of your symptoms. The symptoms of further nerve damage will depend on the extent Digestive symptoms of the damage and the nerves If you are experiencing problems affected. Autonomic neuropathy with digestion you may be advised can affect the function of particular to make small changes to your organs and systems of the body, for diet to help prevent constipation example: or diarrhoea. You can also be

2 www.myeloma.org.uk prescribed treatment by your doctor tense your muscles regularly to if symptoms persist. increase blood flow „„Elevating your bed – if you have Heart symptoms low blood pressure you may Symptoms related to heart rhythm benefit from elevating the head of and blood pressure can usually be your bed controlled with treatment prescribed by your doctor. Summary Sexual dysfunction symptoms Autonomic neuropathy is a group of symptoms that can, if left untreated, Sexual dysfunction can be treated in worsen and affect your quality of life. a variety of ways, for example with It is important that you are aware erectile dysfunction drugs or vaginal of any symptoms and report them lubricants. It can be a difficult and to your doctor or nurse as soon as embarrassing topic to discuss with possible. your doctor or nurse, but they are there to help you with all symptoms About this Infosheet and side effects and will be used to The information in this Infosheet is talking about it. You should speak to not meant to replace the advice of your doctor before taking any over- your GP or medical team. They are the-counter treatment for sexual the best people to ask if you have dysfunction. questions about your individual situation. Tips for self-management There are some lifestyle For a list of references used to adjustments that can make living develop our resources, visit with autonomic neuropathy easier, www.myeloma.org.uk/references including: To give feedback about this „„Drinking plenty of fluids – if you publication, email have diarrhoea you should drink [email protected] lots of fluids to replace those you have lost „„Posture changes – taking your time when standing up, such as standing in stages, can decrease dizziness. If you’re sitting or lying down for a long period of time,

Infoline: 0800 980 3332 3 Other information available from Myeloma UK Myeloma UK has a range of publications covering all aspects of AL amyloidosis, its treatment and management. To download any of these publications go to www.myeloma.org.uk/publications To talk to one of our Information Specialists about any aspect of AL amyloidosis, call the Myeloma UK Infoline on 0800 980 3332 or 1800 937 773 from Ireland. The Infoline is open from Monday to Friday, 9am to 5pm and is free to phone from anywhere in the UK and Ireland. Information and support about AL amyloidosis is also available around the clock at www.myeloma.org.uk/amyloidosis

4 www.myeloma.org.uk Published by: Myeloma UK Publication date: June 2016 Last updated: August 2018 Review date: August 2021

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