, pain and fatigue: complications of myeloma and side-effects of treatment Caroline Overvoorde Myeloma/Lymphoma Clinical Nurse Specialist, Leeds Teaching Hospitals NHS Trust This talk will cover Pain Take home messages Most patients emphasise pain and fatigue as the major problems is a common complication These are effects of myeloma and its treatment but they can be tackled Other side-effects and complications will be discussed in the breakout session Causes of Pain Myeloma bone damage Muscular problems Mechanical problems Peripheral Neuropathy (discomfort in hands and feet) Infection Swelling (due to blood clots) Constipation Multiple causes Anxiety and Stress can contribute What patients say: It s there all of the time gnawing away It s a daily reminder that I have myeloma I m reluctant to take prescribed pain-killers as they constipate me A lot can be done to improve things! Report any new or increasing pain Take pain-killers regularly, do not wait until pain is overwhelming Tell your Nurse/Doctor your reservations about medications YOU CAN TAKE CONTROL! 1
Suggestions & Self- Management Keep a note of the following When and where the pain occurs If possible describe the pain (eg. sharp/achy/burning) What has helped the pain? What things have you tried? Analgesia available over the counter Paracetamol and co-codamol Avoid NSAID s (eg Ibruprofen/diclofenac) Side effects Constipation Drowsiness Managing pain and discomfort Treating the Myeloma Analgesics Tablets/capsules/liquid Patches Different categories of Pain medication Alone/In combination Tens Machines Continuous infusions (managed mainly as an inpatient) Light Exercise (walking) Managing Anxiety and Stress Surgical intervention (eg. vertebroplasty) Radiotherapy Specialist Palliative Services Link in with GP and Hospital Myeloma Team & Hospice Complex pain issues (not just EoLC) Leeds Myeloma clinic has Specialist Palliative Consultant Complimentary Therapies The look I get Alternative Therapies Resources Talking Therapies (eg. counselling) Mindfulness Meditation Gentle Exercise Reflexology Hypnotherapy Reiki Massage Aromatherapy Acupuncture Macmillan Robert Ogden centre 0113 206 6498 St James University Hospital Maggie Centre (coming 2015) Causes Anaemia Disease-related Side-effect of treatment Depression/Low mood Day Hospice (need a referral) Symptoms Extreme tiredness Does not improve with rest/sleep Support Groups (last Fri of each Month @ The Robert Ogden Centre) Support from Family and Friends Distraction Techniques HOPE course access through Robert ogden centre Ruth Kaye Natural Healer 0113 206 7428 level 1 Bexley wing Treatment Treat anaemia if present Moderate exercise (Improves exercise tolerance/breaks vicious cycle Tackle reason for low mood 2
What patients say: I m too tired to think straight Effects of I feel tired all the time I feel like I m walking through treacle I m tired but I ve done nothing all day Report symptoms to your doctor or nurse you don t have to put up with fatigue Don t underestimate the physical and psychological importance of a good diet, plenty of fluids and a gentle exercise regime No energy to do anything work /see friends/ housework Adds to frustration/sense of isolation Lack of Concentration and poor memory Insomnia Relationship problems Loss of Sex Drive Feeling more moody/emotional than usual Depression Loss of control Poor Quality of Life Managing Managing Diet Set Goals but be realistic! It is normal to have off days Keep a Diary What works, what doesn t work? Plan you day Spread tasks out (bit by bit) Ask people for help (shopping/cleaning) Make cooking easier on yourself Practical adaptions (OT might help) Support from Social Services - Work - Talk to your employer - Equality act 2010 - Children - Explain you are tired and you cant do as much as before - Accept help from those you trust - Driving - Avoid if possible - Ask someone else or for hospital transport - Carers need a break too! www.carersuk.org Plenty of fluids (2-3L) daily Avoid coffee and alcohol in moderation Managing appetites/taste changes Eat little and often Make every mouthful count Snacks 3
Physical Activity and Exercise - Growing evidence that Gentle Exercise really helps! - Break vicious circle - Boosts appetite - Improves mood - Start with small goals and build up - Get medical advice on what is suitable and if you are having any problems - Feeling unwell - Breathless - Have pain/discomfort - Physiotherapy referral - Do something you enjoy! Sleep 10 steps for better quality Rest 1. Sleep until you feel refreshed but not too long! 2. Exercise regularly 3. Keep a Normal Sleep routine (wake up/go to bed at the same time) 4. Keep bedroom for sleeping stay awake elsewhere! 5. Reduce light and noise (eye mask/ear plugs) 6. Temperature-comfortably warm 7. Have a snack but avoid stimulants/alcohol a few hours prior 8. Have a nap if it helps! 9. Avoid tossing and turning keep busy until you feel tired again 10. Keep a worry book (11) Relaxation techniques/mental exercises Other things to consider trying Relaxation Complimentary therapies Spiritual Support Counselling helps develop coping mechanisms More Information Macmillan book on /Building up diet Exercise Myeloma UK Robert Ogden Centre/ Info room (level1&3) Talk to your nurse/doctor Causes Lights chains can block the tubules Dehydration, hypercalcaemia Some drugs can contribute What patients say: I struggle to drink so much in a day but taking little and often helps It s difficult to know if my kidneys are alright how can I know for sure? Symptoms Treatment Sometimes none Shortness of breath Swelling in ankles/feet Persistent headaches High-dose steroids Drinking lots of fluids Dialysis (10% of patients) Try to drink between 2 and 3 litres of fluid a day most liquids count so drink as much water, squash, juice, decaf tea, milk as you can Patients with myeloma kidney disease can have no symptoms; however, kidney function will be monitored regularly through blood tests 4
Support Logistics often difficult when on Dialysis Many days in hospital Quality of Life important Discuss your worries Things can often be done! Renal Dietician Myeloma nurses can often Liaise with Renal nurses Other complications and side-effects Opportunity to ask questions during the afternoon breakout session about: Myeloma bone disease including bisphosphonates, radiotherapy, surgical interventions Peripheral neuropathy Anaemia/neutropenia/thrombocytopenia Gastrointestinal disturbances (diarrhoea/constipation) Thrombosis This talk has covered Pain Take home messages MUK resources Most patients emphasise pain and fatigue as the major problems is a common complication All of these effects of myeloma and its treatment can be tackled Other side-effects and complications will be discussed in the breakout session Pain and myeloma Infoguide Infoguide Myeloma and the kidney Infoguide Myeloma TV Medical animations (including Myeloma Kidney Disease and Myeloma Bone Disease) Infoline 5