Psoriatic fatigue: Why do I feel so tired?

Transcription

1 PSFT 0518 Psoriatic Fatigue Apr 18.qxp_Layout 1 30/04/ :02 Page 1 Psoriatic fatigue: Why do I feel so tired? A positive approach to psoriasis ad psoriatic arthritis

2 What are the aims of this leaflet? This leaflet has bee writte to help you uderstad what fatigue is ad why it happes i people with psoriatic disease. We will also address myths ad miscoceptios ad geerally how to cope ad maage the symptoms. Cotets What is fatigue? Why do I feel tired all the time? What causes fatigue? Myths ad miscoceptios What ca I do? Dietary advice Behavioural chages Put yourself first Physical activity Keepig a diary Show ad tell Coclusio Useful cotacts Refereces About psoriasis ad psoriatic arthritis Psoriasis (sor-i ah-sis) is a log-term (chroic) scalig disease of the ski that affects about 2% of the UK populatio. It usually appears as red, raised, scaly patches kow as plaques. Ay part of the ski surface may be ivolved but the plaques most commoly appear o 2

3 the elbows, kees ad scalp. It ca be itchy but is ot usually paiful. It is ot cotagious; you caot catch it from aother perso. Aroud 30% of people with psoriasis may develop a associated psoriatic arthritis, which causes pai, iflammatio ad swellig i the joits ad tedos, accompaied by stiffess, particularly i the morigs. Nail chages, icludig pittig ad ridgig, are preset i 40-50% of people with psoriasis. See our leaflet Nail Psoriasis. There does ot seem to be ay lik betwee the severity of the psoriasis affectig the ski ad the severity of psoriatic arthritis. For more detailed iformatio o each coditio, please see our leaflets What is Psoriasis? ad What is Psoriatic Arthritis? What is fatigue? It is ormal to feel tired after exertio, isufficiet sleep or at the ed of the day; this tiredess is usually relieved by rest or sleep. With fatigue, the symptoms ofte go beyod ormal tiredess ad ca iclude decreased o r l a c k o f e e r g y w i t h accompayig physical or metal exhaustio. T h e s e s y m p t o m s usually persist eve after a good ight s sleep. I the UK, 10-20% of the populatio report beig tired for a moth or loger, with 1.5% feelig a eed to see their GP. The symptoms ofte iclude difficulty sleepig; muscle or joit pai; headaches; paiful lymph odes; sore throat; cogitive dysfuctio; symptoms made worse by physical or metal exertio; flu-like symptoms; dizziess; ausea; or palpitatios. 3

4 Why do I feel tired all the time? People with psoriasis or psoriatic arthritis ofte feel tired all the time. Some people who develop this symptom thik there must be somethig psychologically wrog with them. There is t; fatigue is a commo ad recogised symptom of the coditios. It is also ackowledged that doctors uderestimate fatigue as a compoet of psoriasis ad i particular of psoriatic arthritis. People ofte feel frustrated about the lack of support ad uderstadig they get whe presetig with a debilitatig ad ivisible symptom. It appears that fatigue is more severe i people with psoriatic arthritis tha those who have psoriasis aloe, with studies suggestig that three out of every te people with psoriatic arthritis have symptoms of fatigue. Fatigue may be a early symptom or sig of iflammatory activity i people who may have psoriasis ad or psoriatic arthritis; both are classed as log-term iflammatory coditios. Iflammatio is liked with the release of powerful chemicals. These iclude: iflammatory proteis which icrease the stickiess of blood platelets proteis which bid to atibodies ad circulate as immue complexes immue system chemicals that help immue cells commuicate with each other, such as iterleukis, especially iterleuki 1. What causes fatigue? As described above, iflammatio appears to be part of the process of feelig fatigued, but researchers do ot kow exactly what the lik is, or how icreased levels of iflammatory substaces i the body ifluece fatigue. Myths ad miscoceptios There are may myths ad miscoceptios about fatigue. People are sometimes wrogly viewed as beig 4

5 lazy by their work colleagues ad sometimes by their ow family members. The reaso that the perso affected by fatigue is uable to carry out basic everyday tasks is the iflammatory process takig place i their body. People ofte thik that caffeie will help wake them up. As caffeie is a stimulat, the effects are short-lived; people ofte feel more tired oce the iitial effect wears off. Caffeie is typically foud i coffee, tea, cola ad eergy driks. Caffeie is also a diuretic, causig dehydratio, which will also have a egative effect. I some istaces people may resort to the use of alcohol, uder the misapprehesio that it will relieve the symptoms. However, alcohol is likely to make people drowsier, depressed ad ca affect sleep, which will also cotribute to fatigue. What ca I do? If you feel tired all the time, tell your doctor, as it is importat to rule out ay other causes of fatigue. Sometimes you may eed to have your medicatio chaged or take tests so that your GP ca fully uderstad what is happeig. With or without medical itervetio, there are a umber of lifestyle chages that may help you feel geerally less exhausted. Dietary advice Eat a diet providig at least five servigs of fresh fruit or vegetables a day 5

6 Reduce the aimal fats i your diet ad avoid fatty foods as much as possible Eat fresh, home-made foods rather tha prepackaged coveiece foods Icrease your itake of B-group vitamis, eeded for the productio of eergy i the body. These are foud i brow rice, wholegrai bread ad cereals, oatmeal ad oat flakes, pulses, gree leafy vegetables, oily fish ad poultry Aim to eat more oily fish, virgi olive oil or rapeseed oil, uts ad seeds If you are uable to icrease your itake of fish, cosider takig a omega-3 fish oil supplemet Cut back o saturated spreads ad vegetable oils ad products which cotai them, such as shopbought biscuits ad cakes Cosider takig a vitami ad mieral supplemet supplyig aroud 100% of the recommeded daily amout for as may utriets as possible. For further iformatio, see our Psoriatic Lifestyle ad Nutritio leaflet. Behavioural chages Avoid thigs that iterfere with sleep, such as caffeie, icotie, excessive alcohol ad eatig rich, heavy food late at ight Avoid excess stress Aim to lose excess weight. Put yourself first Take some time to rest durig the day Keep a balace betwee the demads o you ad your eergy Lear to say o, if possible Tell people whe you are tired Avoid usig uecessary eergy. 6

7 Physical activity Some people fid it difficult to get motivated ad take part i some form of physical activity. As everyoe has differet activity levels, pai thresholds ad body weight, you should start by fidig activities which keep you mobile ad stregthe your muscles, but which do ot cause you ay pai. Try to thik of a physical activity that you ejoy which you ca easily fit ito your daily routie. If you ejoy walkig, try to go for a walk a few times a week ad icrease the walkig time by a miute or so per sessio. After a few weeks you will have leart how far you ca comfortably maage without experiecig pai. Other activities you may fid beeficial are cyclig, getle gym exercises or more complemetary therapies such as yoga or pilates. See our Physiotherapy ad Exercise: Psoriatic Arthritis leaflet for more detail. Balacig eergy Try to keep back some eergy for somethig you like to do; it will give you satisfactio ad a morale boost U s e p a i r e l i e f regularly ad as d i r e c t e d, a s costat pai will make you fatigued Take regular, getle exercise Take a rest before the childre arrive home from school or if you are havig visitors, as this will help you to sped more time with them Spread chores out over a few days rather tha tryig to complete them o the same day Stop ay activity before you are too tired. Rest ad the start agai 7

8 Pla your activities so that you ca take time out to rest before ad after Fid time to relax by learig midfuless or other similar relaxatio techiques If you have bee cocetratig o a particular activity, you may fid it helpful to follow it with some physical activity, chage of scee ad rest Sit dow ad use labour-savig devices whe you ca, as these will preserve your eergy. Be kid ad getle to yourself. Keepig a diary People fid it difficult to uderstad why they feel fatigued; ofte there appears to be o obvious cause. You may fid it useful to record the times ad days you feel fatigued ad for how log it lasts. Log the actios from the previous few days which might ifluece your eergy levels, such as work, sleep, evets, occasios, ad eve your food ad drik. This may help you to uderstad the patters ad adjust your lifestyle ad activities to reduce the icidece of fatigue. You will the be able to pla your life more effectively. It may also be useful to share this iformatio with your healthcare provider, as they may be able to help you uderstad the causes. Show ad tell Because ot everyoe fully uderstads the effects of fatigue, psoriasis or psoriatic arthritis, show family ad frieds a copy of this ad other PAPAA iformatio leaflets. You may fid they ca offer support ad adjust activities ad evets to suit your eeds. 8

9 If you are employed, it may be helpful to talk to your huma resources departmet or your lie maager, as they may be able to adjust your workig eviromet. Uder the Equality Act 2010, employers must make reasoable adjustmets to make sure workers with disabilities, physical or metal health coditios are ot substatially disadvataged whe doig their jobs. This applies to all workers, icludig traiees, appretices, cotract workers ad busiess parters. Coclusio A umber of published scietific studies suggest that fatigue is a itegral part of psoriasis ad psoriatic arthritis, although there appears to be little lik betwee levels of fatigue ad disease severity. Overall, it is ofte dismissed by doctors as trivial, but people fid that it ca be very debilitatig ad affect their ability to fuctio or carry out daily tasks, icludig work ad studies. Ca I get fiacial support? May people worry about what happes if they caot work or eed fiacial help because of the effects of their coditio. Fortuately for may, with good therapy ad maagemet their coditio ca be cotrolled ad allow for a full ad active workig life. But if you fid that, eve for a short period of time, you are likely to eed help, visit the applicable websites listed below. You ca also cotact your local govermet or coucil office, where you should be directed to the appropriate resource ad iformatio. Useful cotacts NHS Choices (Eglad): NHS 24 (Scotlad): Health i Wales: 9

10 HSCNI Services (Norther Irelad): UK govermet services ad iformatio. These sites are the official sites for the Natioal Health Service ad UK govermet services ad provide liks ad sigpostig to recogised orgaisatios ad charities. Refereces: l l l l l l Natioal Istitute for Health ad Care Excellece (NICE) Cliical Kowledge Summaries: Tiredess/fatigue i adults topicsummary. Accessed 10/1/2018 NHS Choices Self-help tips to fight tiredess self-help-eergy-tips.aspx Accessed 10/1/2018 Rheumatology Nursig: A creative approach, Jackie Hill 2006 Dr Sue Pemberto (2017) Workshop Maagig Fatigue i Rheumatology ; BHPR Easter Regio Study Day, Newmarket 19 May The above list is ot exhaustive. For further refereces u s e d i t h e p r o d u c t i o o f t h i s a d o t h e r PA PA A i f o r m a t i o, c o t a c t u s o r g o t o : About this iformatio This material was produced by PAPAA. Please be aware that research ad developmet of treatmets is ogoig. For the latest iformatio or ay amedmets to this material, please cotact us or visit our website: The site cotais iformatio o 10

11 treatmets ad icludes patiet experieces ad case histories. Origial text writte by PAPAA, Jauary A peer review has bee carried out by Domiique Raut-Roy, rheumatology research urse, Cambridge Uiversity Hospitals NHS Foudatio Trust. A lay ad peer review pael has provided key feedback o this leaflet. The pael icludes people with or affected by psoriasis ad/or psoriatic arthritis. Published: May 2018 Review date: November 2020 PAPAA The Iformatio Stadard scheme was developed by the Departmet of Health to help the public idetify trustworthy health ad social care iformatio easily. At the heart of the scheme is the stadard itself a set of criteria that defies good quality health or social care iformatio ad the methods eeded to produce it. To achieve the stadard, orgaisatios have to show that their processes ad systems produce iformatio that is: accurate evidece-based impartial accessible balaced well-writte. The assessmet of iformatio producers is provided by idepedet certificatio bodies accredited by The Uited Kigdom Accreditatio Service (UKAS). Orgaisatios that meet The Stadard ca place the quality mark o their iformatio materials ad their website - a reliable symbol of quality ad assurace. 11

12 The charity for people with psoriasis ad psoriatic arthritis PAPAA is idepedetly fuded ad is a pricipal source of iformatio ad educatioal material for people with psoriasis ad psoriatic arthritis i the UK. PAPAA supports both patiets ad professioals by providig material that ca be trusted (evidece-based), which has bee approved ad cotais o bias or agedas. PAPAA provides positive advice that eables people to be ivolved, as they move through their healthcare jourey, i a iformed way which is appropriate for their eeds ad ay chagig circumstaces. Cotact: PAPAA ifo@papaa.org Tel: Horseshoe Busiess Park, Lye Lae, Bricket Wood, St Albas, Herts. AL2 3TA ISBN Psoriasis ad Psoriatic Arthritis Alliace (PAPAA) is a compay limited by guaratee registered i Eglad ad Wales No Registered Charity No Registered office: Acre House, William Road, Lodo, NW1 3ER PSFT/05/18