Chapter three
MORE ABOUT SOME INDIVIDUAL RHEUMATIC DISORDERS
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Chapter threeMORE ABOUT SOME INDIVIDUAL RHEUMATIC DISORDERS |
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Some sources of general information on rheumatic disorders
Individualised care plans
Ankylosing spondylitis (AS)
Back pain
Gout
Juvenile idiopathic arthritis (JIA)
Lupus
Osteoarthritis
Osteoporosis
Psoriasis and arthritis
Raynaud's phenomenon
Reiter's Syndrome (RS)
Rheumatoid arthritis (RA)
Sjögren's syndrome
Systemic sclerosis (scleroderma)
As I'm not a doctor, I won't go into a lot of medical detail here, though I do believe it's well worth finding out about your own particular rheumatic disorder so you can understand what's happening to your body and what you and your doctor can do about it. I'll concentrate on the main disorders affecting our age group. You'll find more information on these and others through the books and organisations mentioned here and in other chapters.
A word of warning! Don't imagine everything you read will happen to you. Do choose your reading with care. There's a lot of misleading information around about arthritis, written by out-of-date non-experts. Even medical textbooks are quickly out-of-date, the language isn't easy to understand, and they can sometimes be horribly frightening (especially the pictures). If anything you read worries you, do please ask your doctor about it. I once spent weeks in misery having completely misinterpreted one very worrying thing I read!
The best reading matter tends to be that written for patients by doctors and other reputably qualified professionals with a specialist and up-to-date knowledge of rheumatology. Especially good are the websites and publications produced by the charities Arthritis Research Campaign (ARC), Arthritis Care, and the National Rheumatoid Arthritis Society (NRAS). Other self-help and patient support groups, concentrating on specific disorders, can be a great source of information too, and I'll mention them later in this chapter under the relevant disorder.
Most groups have a website with lists of booklets and factsheets and further reading. Some are free and can be downloaded from the website or sent for by post, in which case many charities ask for an SAE (stamped addressed envelope) or stamp. Audio and video versions may be available too. Or you could try phoning or writing or emailing. Some charities have helplines, usually weekdays only, staffed by very helpful understanding people. Some have forums and chatrooms, where you can share thoughts and talk with other members of the group.
Groups also publish regular newletters or magazines, a good way of keeping up-to-date with treatments and research and tips on making life easier.
Another way of finding out how to help yourself are self-management training programmes, often led by people who have become 'expert patients' through personal experience of a rheumatic disorder, like the 'Challenging Arthritis' courses run by Arthritis Care. Similar programmes are run elsewhere. For instance at Bath's Royal National Hospital for Rheumatic Diseases there's a group patient education programme for people with lupus or scleroderma. Self-management courses for people with long-term medical conditions are being encouraged and publicised by the Government's 'Expert Patients Programme', too, website: www.expertpatients.nhs.uk
Books written for health professionals are probably best avoided, unless you're really able to face what can be very scarey pictures and complicated, disturbing, text. They're often expensive too (though perhaps your library could borrow a copy for you?). But if it's a choice between these and dubious quackery, then here are some suggestions:
Recent key policy and background papers include:
One key recommendation of ARMA's Standards of Care is that each person with inflammatory arthritis and mixed connective tissue disease should have an individualised care plan for the management of their disease, compiled by the members of their multi-disciplinary team. The plan should include:
What is it and who gets it?
'Ankylos' is Greek for stiffness, 'spondylos' the word for spinal vertebra, 'itis' indicates inflammation. In the old days people with AS were, unfortunately, immobilised in plaster for weeks (totally wrong treatment), and developed a characteristic posture of rounded shoulders, flat chest, back bent in a stiff curve with the head and neck held forward.
In the spine of someone with AS the 'enthesis' becomes inflamed (the place where a muscle is attached to the bone). The bone responds by growing out from both sides of the back vertebra. Unless you keep mobile there's a danger of one vertebra becoming fused to the next, to form a stiff 'ankylosed' joint, leading to the old pokerback posture. Exercises and good posture awareness aim to prevent that happening.
AS is the third commonest rheumatic disorder after OA and RA. Estimates of people with AS in Britain vary between 50,000 and 100,000. It's 2.5 times commoner in men than in women, with an average age of onset of 24 years old. Most people with AS (over 90%) have a particular cell group called HLA B27, which may be significant, though there are far more people (four out of five) with HLA B27 who never get AS than those who do. So screening for HLA B27 in healthy individuals would prove nothing about their chances of getting AS.
What symptoms might you get?
No two people experience AS in exactly the same way. Only some of this may apply to you.
Management of AS
Blood tests, x-rays, MRI scans and particular symptoms can help identify AS, though correct diagnosis may take a while. Once it's confirmed you must 'leap into action' (almost literally), to keep your spine mobile and prevent deformity. This really is an illness where the person who can most help you is you, yourself.
ARC's booklet on AS summarises:
"In its early stages AS causes considerable pain, but effective treatment is available to relieve this, even though the discomfort is not always banished. In some people the disease becomes much less active, or even ceases completely. In others the disease continues to be active, causing pain and stiffness."
| Group: | National Ankylosing Spondylitis Society (NASS). Helpful website. Regular newsletter, also audio and videocassettes of a home physiotherapy programme, and various booklets. Many NASS branches provide physiotherapy after working hours. |
| Read: | NASS's Guidebook for Patients (by post or download from website). Arthritis and Musculoskeletal Alliance (ARMA)'s Standards of Care for People with Inflammatory Arthritis (2004). |
| Websites: | www.nass.co.uk, www.asresearch.co.uk/asfacts.htm |
It's been estimated that some 2% of the population go to their doctor every year because of backache, and some 19 million working days a year are lost (ARC estimate 1988). Although it's so common, severity and causes vary considerably. You should seek medical advice if you have persistent back pain. It could be a symptom of AS or a prolapsed disc ('slipped disc') or something else. For AS exercise will be prescribed; for something else treatment could be completely different. So correct diagnosis is essential. Other back pain may be due to wear and tear, small fractures, over-stretched muscles, accidents, awkward lifting and carrying, ageing, sporting injury, other stresses and strains, or something else. Usually there's a lot you can do to help yourself, and the information sources listed here will help.
| Group: | BackCare (registered as National Back Pain Association). Helpful website. Membership includes quarterly magazine Talkback. Local groups organise hydrotherapy and exercise classes, and loan equipment to try out. Helpline: 0845 130 2704. |
| Read: | BackCare's factsheets and other publications (by post or download from website), ARC's booklet Back Pain (by post or download). The Back Book by Roland, Waddell and others (Stationery Office, 2002). |
| Websites: | www.backcare.org.uk, www.arc.org.uk/arthinfo/patpubs.asp |
What is it and who gets it?
Gout isn't caused by over-eating or over-drinking as such, but is caused by the way your body deals with what you eat. It's an 'error of metabolism', with a tendency to run in families. Metabolism is the process by which the body changes the food we eat and the oxygen we breathe into usable substances like protein, fats and carbohydrates. Waste products are produced at the same time, among them 'purines', which break down into 'uric acid'. Normally the body easily gets rid of this uric acid, but someone with gout either can't get rid of it adequately through the kidneys or produces too much. The excess is deposited in the form of crystals in the affected joint.
Gout's most common in men and women over 40, though there's also a very rare type which affects children and younger adults. It's commoner in men than in women. Some people only ever have one or two attacks of acute gout. Others may have repeated attacks. The great thing is that gout can be effectively controlled, for life, if necessary, by medication.
What symptoms might you get?
An acute attack usually (70%-90%) starts in the big toe, with very intense pain, swelling and redness. Other joints which may suffer include the ankle, knee, fingers, elbows, wrists. The pain can be so severe that you can't bear anything to touch the joint, not even a light sheet. But remember, gout can be treated effectively.
Management
Quick diagnosis and early treatment are important. If left untreated, continuing gout can lead to permanent joint damage and deformity. Treatment for a one-off acute attack differs from long-term treatment for repeated attacks.
| Read: | ARC's booklet Gout (by post or download from ARC's website). Gout: The 'At Your Fingertips' Guide, by Professor Rodney Grahame, Dr Anne Simmonds and Dr Elizabeth Carrey (Class Publishing, 2003). |
What is it and who gets it?
JIA is inflammatory arthritis lasting at least six weeks, which starts in a baby or child aged under 16. 'Idiopathic' means that the cause is not known. Many of you may, like me, have started out with JIA. There are several different types or subgroups of JIA, estimated to affect between 1 in 1,000 and 1 in 1,500 children (some 15,000 in Britain). Overall it affects more girls than boys, though the ratio varies in each subgroup. The good news is that more often than not, JIA ultimately burns itself out ('goes into remission'), and the aim of treatment is to ensure that whatever happens, the child has as few physical, educational and social limitations as possible. Do read what's listed below to find out how to achieve that. ARC's report Children and Arthritis commented:
"It has been shown that, with good management, which can now be provided, 70% of the children who get arthritis early in life make a good recovery. Specialists are now able to overcome most of the complications resulting from the disease. And even for the remaining 30% of the children who do not make a full recovery, and whose arthritis persists in adulthood, many are able to lead reasonably normal lives."
What symptoms might you have?
Symptoms differ according to subgroup. The main subgroups are:
Management of JIA
Some JIA clears up quickly. In other children longer term treatment is essential and includes:
| Groups: | Arthritis Care. Help and info including website: www.arthritiscare.org.uk, tel: 0207 380 6500, helpline: 0808 800 4050. Regular Arthritis News has insert for 15-20 year olds No Limits. Free helpline for YPAs, the Source: 0808 800 2000. National Rheumatoid Arthritis Society (NRAS). Help and support on JIA includes 'juvenile issues' section of website, free helpline: 0800 298 7650, and NRAS Volunteer Network of friendly, trained volunteers ready with telephone support when you need it. CHOICES for families of children with arthritis. Though the group is mainly for 5-15 year olds, their website has some helpful general info: www.kidswitharthritis.org. Children's Chronic Arthritis Association, run by parents and professionals. Lady Hoare Trust, for children under 18 and their families. |
| Read: | Various booklets from ARC, www.arc.org.uk include Arthritis — a Guide for Teenagers (packed with helpful info, includes where to find out more), When Your Child has Arthritis: a guide for parents, When a Young Person has Arthritis: a guide for teachers. Booklets from Arthritis Care include Chat (Children have arthritis too) — a guide for parents, Chat 2 parents — arthritis in teenagers, When a Young Person has Arthritis (for teachers). Arthritis and Musculoskeletal Alliance (ARMA)'s Standards of Care for People with Inflammatory Arthritis (2004). All available by post or download from websites. |
What is it and who gets it?
'Systemic' means it affects various parts of the body; 'lupus' is a word used medically to describe some skin rashes (Latin word for wolf — people used to think the rash looked like a wolf bite); 'erythema' is used medically to describe the red colour of inflamed skin. Lupus usually starts in the teens or twenties, or, rarely, in children. More women than men are affected (nine women to every man).
Lupus is an autoimmune rheumatic disorder where the body's immune system mistakenly fights its own body tissues. Lupus can rear its ugly head almost anywhere in the body, not just in the skin and joints. Like RA it varies tremendously and unpredictably from person to person. It may disappear as mysteriously as it came, though usually it waxes and wanes, with quieter periods alternating with flare-ups.
Nowadays the outlook is far better than in even the recent past, so do beware of reading even slightly out-of-date books, as ARC's handbook for patients warns:
"If you happened to look it up in a medical book in the public library, you might become worried, it is often described as very serious and sometimes fatal. You need not worry. This idea is out of date because, at the time when such books were written, only severe cases were ever diagnosed by doctors."
Dr Graham Hughes is reassuring:
"it is not uncommon for the disease to appear acutely in the late teens or twenties, and, following treatment, to subside. The majority of patients, given careful management, can possibly ultimately succeed in stopping treatment — a fact which until recently was not widely appreciated." (In Lupus, a Guide for Patients)
What symptoms might you get?
Remember, everyone has a different version of lupus, and only some of these symptoms may apply to you:
Management of lupus
Lupus can be difficult to diagnose, because symptoms may be confused with another illness, RA for instance. Blood tests and other tests help confirm the diagnosis. Someone with lupus symptoms should be referred promptly to a rheumatologist. Once diagnosed, treatment aims to relieve pain and other symptoms, to damp down inflammation, and help you lead as normal a life as possible, while continuing to monitor you for any possible changes. Although lupus can't yet be cured, it can be controlled. It may take a period of trial and error to work out the best treatment for you as an individual, but hang on in there.
| Read: | ARC's Lupus (SLE), special section on lupus and pregnancy in ARC's Pregnancy and Arthritis, etc. From Lupus UK: many helpful factsheets includingLupus — a guide for patients, Lupus and Pregnancy, Lupus and Medication, Lupus — fatigue and your lifestyle, etc, and several priced books including: G Hughes' Understanding Lupus (JSC Ltd, 1996), G Hughes and T Holden's Talking about Lupus: what to do and how to cope (Piatkus, 2004), Isenberg and Morrow's Friendly Fire: autoimmune disease explained (Oxford University Press, 1995), R H Phillips' Coping with Lupus. Arthritis and Musculoskeletal Alliance (ARMA)'s Standards of Care for People with Connective Tissue Disease |
| Groups: | Lupus UK, tel: 01708 731251, www.lupusuk.com. Arthritis Care. ARC. |
What is it, who gets it, and what are the possible symptoms'?
Osteoarthritis is the most widespread rheumatic disorder. About five million people have some form of OA. Most are over 50, though it does sometimes start earlier. It probably affects slightly more women than men. OA's not primarily an inflammatory disorder like RA or AS (though inflammatory episodes do occur). In most people it's limited to one, or only a few joints, rather than affecting the whole or a large part of the body as in inflammatory arthritis.
OA in a joint doesn't necessarily cause symptoms or get worse: it may stay the same, get easier for a time then bad again, or, sometimes, it may become easier and stay that way. "Most people with OA don't become crippled or severely disabled and maintain a normal life." (ARC). Severe OA in a knee or hip may cause pain, misery, frustration and disability, but joint replacement operations can bring relief.
The most commonly affected joints are one (sometimes more) of the following: knees, hips, hands, big toe ('hallux valgus'). A characteristic type of OA in non weight-bearing joints appears mainly in the joints at the end of the fingers and the joint at the base of the thumb. Small knobs form called 'Heberden's nodes' after the doctor who first described them. Though they may be painful to start with, usually they are or become painless.
Exactly what happens in OA and why isn't yet fully understood. Sometimes there's an obvious predisposing factor, where 'secondary OA' develops following repeated small injuries or a single minor injury (eg in footballers or long-distance runners, or women after years of wearing badly fitting shoes), or perhaps as a result of an inherited or congenital joint abnormality.
It's called 'primary OA' where there's no obvious predisposing factor, though age or 'wear and tear' processes may have something to do with it. Various theories suggest there may be a failure in the joint's lubricating mechanism, or an abrasive process set up by tiny crystals deposited in the joint, or the bones may not be elastic enough to cope with repeated impact shock due to jogging, being overweight, etc.
The articular cartilage (forming the slippery, protective end of bone) in an OA joint gets thinner and rougher, so the bones end up rubbing against one another. Synovial fluid increases and thickens, and spurs of new bone tissue (osteophytes) form at the edge of the joint. Cartilage stops growing after childhood, so if it's damaged has only a limited ability to heal itself. The joint swells, becoming distorted and stiff, leading to aches and pains, tenderness, muscle wasting, and limited movement.
Stiffness rather than pain may be the earliest symptom, as there are no pain-sensitive nerves in the cartilage where OA starts. Pain comes after using the joint, and in later OA, at rest and the end of the day. There may be a creaking, grating, cracking sensation with movement, and limitation in range. There are usually ups and downs in discomfort, with bad spells and better spells.
Management of OA
An encouraging note from ARC:
"Doctors and research workers have changed their attitude a great deal in recent years. They now see real possibilities of understanding and controlling osteoarthritis in the future. They no longer see osteoarthritis as an inenvitable part of ageing or a 'wear and tear' disease, but more as a major challenge and an important problem that they can solve."
| Read: | ARC's Osteoarthritis (includes tips on helping yourself, exercising, etc), Osteoarthritis of the Knee, Osteoarthritis of the Knee and Hip. Arthritis Care's Living with Osteoarthritis, Home Treatment for Pain Relief: heated pads and cold packs. Arthritis and Musculoskeletal Alliance (ARMA)'s Standards of Care for People with Osteoarthritis All downloadable from websites, or available by post. |
| Group: | Arthritis Care, tel: 020 7380 6500, helpline: 0845 600 6868. Website: www.arthritiscare.org.uk |
In osteoporosis bones become fragile and break more easily than usual, due to a deficiency in the bone structure. Most at risk are women around the menopause, especially those who've had an early menopause or hysterectomy. One in two women and one in five men over 50 in the UK breaks a bone, mainly because of osteoporosis. There's a lot you can do to promote health and strength in your bones, and to cope with osteoporosis if you have it. Your healthcare team and the following information will help.
| Read: | ARC's Osteoporosis. National Osteoporosis Society (NOS)'s many publications include Living with Osteoporosis — coping after broken bones, Osteoporosis in Men, Healthy Eating for Strong Bones, Exercise and Bone Health. Arthritis and Musculoskeletal Alliance (ARMA)'s Standards of Care for People with Metabolic Bone Disease |
| Group: | National Osteoporosis Society (NOS), tel: 0845 130 3076, and their helpline staffed by nurses: 0845 450 0230. Website: www.nos.org.uk |
What is it and who gets it?
Psoriasis (Greek word for itch) is an itchy and distressing skin condition which appears as raised red patches of skin covered with silvery scales. It usually affects knees, elbows and scalp and there may be 'pitting' of the nails. It isn't infectious or contagious nor is it caused by poor standards of hygiene.
Psoriasis is a vast acceleration of what happens in everyone's skin, where skin cells slowly mature as they work their way to the surface, before being shed, usually unnoticed, as dead cells. Normally this process takes some 21 to 40 days, but psoriatic cells are thought to do the same much faster, in only two to seven days, and so rapidly and chaotically that even live cells reach the surface and accumulate visibly with the dead ones.
About 2-3% of the UK population suffers from psoriasis, but only about 10%-20% of people with psoriasis may also develop arthritis. Psoriatic arthritis usually starts between the ages of 30 and 50, though can occur earlier, even in children.
Psoriasis may be linked with arthritis in several different ways:
Both psoriasis and arthritis are conditions that wax and wane, sometimes better, sometimes worse, sometimes disappearing altogether. For more information and about the various effective treatments see the following.
| Read: |
ARC's Psoriatic Arthritis. Psoriasis Association's What is Psoriasis?, Psoriasis in Children, Psoriatic Arthritis, PsoTeen — especially for Teenagers, and other publications. Arthritis and Musculoskeletal Alliance (ARMA)'s Standards of Care for People with Inflammatory Arthritis (2004) |
| Groups: | The Psoriasis Association, tel: 0845 676 0076, www.psoriasis-association.org.uk, regular journal. Psoriatic Arthropathy Alliance, www.paalliance.org, regular journal Skin 'n' Bones Connection. A helpful Beauty Camouflage Care Service is run by the British Red Cross, tel: 0870 170 7000, www.redcross.org.uk Also the British Association of Skin Camouflage, tel: 01625 871129, www.skin-camouflage.net |
Raynaud was a 19th century French doctor. Raynaud's may occur by itself (primary Raynaud's), or in tandem with another illness, for instance RA, lupus, systemic sclerosis (secondary Raynaud's). The blood supply to the extremities (usually fingers and toes) is interrupted. Affected parts become white and numb, later turning purple, and then red with a burning sensation, pain, or numbness. An attack may be triggered by temperature changes, emotion, or stress.
Anyone, at any age, may get Raynaud's, though women are affected nine times more than men. It can be mild, or so severe that ulcerations form. If these are left untreated they may become gangrenous and amputation may be necessary. The cause is unknown.
As yet, there's no cure, but lots can be done to deal with the condition. Keeping the extremities, and the body itself warm may help, plus avoidance of situations likely to cause an attack. Special heated socks and mittens, and tiny portable 'heat packs' are available from the Association. Drugs help some people (eg nifedipine). Masses more helpful information is available from the support group.
| Group: | Raynaud's & Scleroderma Association, 01270 872776. Regular informative newsletter, info on many helpful products, tel: 01270 872776, helpline: 0800 917 2494, website www.raynauds.org.uk. |
| Read: | The Association's many helpful leaflets include: Raynaud's Phenomenon, Raynaud's in Teenagers and Youngsters, (all downloadable, or send 2nd class stamp for each leaflet requested (UK only). Also priced publications including: Raynaud's & Scleroderma — a journey of discovery, Raynaud's — your questions answered. |
There are three main ways in which arthritis can be associated with an infection:
Rheumatic fever used to be one of the commonest serious diseases of childhood, and it's still prevalent in developing countries. In 1928 25% of the patients at Great Ormond Street Hospital had it. Unlike other rheumatic disorders the cause is now known. It follows infection with a microbe called (something of a mouthful) Group A beta-haemolytic streptococcus. Main symptoms are fever, joint swelling and pain, and, more seriously, heart inflammation and damage.
Reiter's syndrome (RS) can be type (2) or type (3) reactive arthritis. Reiter was a German military doctor who identified the syndrome in soldiers fighting in the trenches in the First World War Battle of the Somme, where bowel infection was common.
It occurs more often in men than women, and usually starts in young adults, though can also occur in children. RS is a combination of urinary and eye problems, as well as the joint problems of arthritis. Treatment is with antibiotics, pain-killers and non-steroidal anti-inflammatory drugs (NSAIDs), occasionally steroids, and if the problems persist, disease-modifying drugs such as sulfasalazine may be used. Other treatment includes physiotherapy, joint and muscle care, rest, and help and advice on coping with practical and personal problems. Like many rheumatic disorders it's hard to predict how it'll affect any one individual, but there are usually periods of remission, sometimes lasting years, between flare-ups.
| Read: | ARC's Reactive Arthritis |
What is it and who gets it?
The body develops an autoimmune reaction (see chapter 2), a sort of allergic reaction to bits of itself. Instead of your immune system defending your body against 'foreign invaders' it mistakenly and painfully turns on itself, inflaming and swelling the thin synovial membrane which lines the joint.
Most of you reading this probably know only too well all about RA from your own personal experience, and know how it can at times affect the whole body, not just the joints. Though it can affect anyone, at any age, it usually starts before the age of 45, more often in women than in men. It affects about 0.8% of the adult population in Great Britain (about half a million), though many of these people may be only mildly affected.
RA may start overnight or very gradually, usually in the smaller joints, particularly hands and wrists, and/or in the feet, with pain, joint swelling and stiffness (particularly in the early morning), and a general feeling of being unwell, a sort of 'fluey' feeling. But it varies tremendously, and no two people experience RA in exactly the same way. Some people are more or less back to normal fairly quickly. Others continue to have greater or lesser joint pain and swelling, with perhaps a flare-up from time to time.
RA's a fluctuating, variable disorder, with bad times and flare-ups, but also, thank goodness, good and better times too. It's misleading to call it progressive. The good or better times are wonderful, though joints and body still need to be treated then with respect. The bad or worse times we could well do without, but as with so many things, most of us, with support and encouragement, work out ways of adapting. Listen to Phil, a Mum, and former Chairman of the 35 Group for YPAs, who knows the ups and downs only too well:
"If anyone had told me 15 years ago, when I was first diagnosed, that I would cope, manage to bring up not one, but two children, remain married, have a demanding, fulfilling, enjoyable job, work full-time and drive thousands of miles each year, that I would dance (occasionally), swim, go on holiday and enjoy life, I don't think I would have believed them."
What symptoms might you get?
Remember, no two people with RA experience it in exactly the same way. The number and types of joint affected vary considerably, even at different times in the same person. Only some of these may apply to you:
When the RA's particularly active, we talk about having a 'flare-up'. The joint linings and other body tissues become inflamed. The body's defences are activated, as they are if you have a cut that goes septic, and heat, swelling and pain result. But unlike a septic cut the inflammation doesn't clear up quickly. It may persist as chronic inflammation. Joints damaged by inflammation do not heal well, so inflammation control and good joint care are essential.
"The inflammation in rheumatoid arthritis has been likened to a forest fire. If it is raging furiously, then bed rest and and full drug treatment are required, if grumbling and almost out, simple analgesics and/or anti-rheumatic drugs as required. Like a forest fire, certain areas (joints) may flare up for a time and require attention and then settle." (ARC magazine, 1988)
Management of RA
Early diagnosis of RA and early treatment are very important for effectively managing the RA, so don't delay! What follows here is only a brief summary — see ARC's booklets for really helpful, much fuller information.
ARC's booklet on RA summarises everything helpfully:
"Although rheumatoid arthritis is a common, persistent joint disorder, which sometimes causes serious problems, most sufferers have only modest problems. There is no cure yet and the disease is not fully understood. But there is a wide variety of treatments, and knowledge is increasing rapidly. It takes time and common sense to get used to having arthritis and to learn how best to adapt to it, but help is available…
"Much can be worked out with common sense. The principle is to keep doing everything you want to but, if necessary, to adapt things to protect joints and to have a little respect for the condition. Don't be too proud to accept help and advice when it makes sense. Learn to accept and live with rheumatoid arthritis, while leading as normal a life as possible."
| Read: | ARC's Rheumatoid Arthritis, Looking After Your Joints When You Have Rheumatoid Arthritis, Occupational Therapy and Arthritis, Drugs and Arthritis, etc. Arthritis Care's Living with Rheumatoid Arthritis, Coping with Pain, Coping with Emotions, Exercise and Arthritis,etc. Book The Arthritis Helpbook: A Tested Self-Management Program for Coping with Your Arthritis and Fibromyalgia by Lorig and Fries, hardcover or paperback (Da Capo Press, 2006). Coping with Rheumatoid Arthritis by OT Heather Unsworth (Chambers). OT Jasmine Jardine's Living a Full Life with Rheumatoid Arthritis (Expert Patient's Guide, Howtobooks, 2005). Arthritis and Musculoskeletal Alliance (ARMA)'s Standards of Care for People with Inflammatory Arthritis (2004) |
| Groups: | National Rheumatoid Arthritis Society (NRAS), www.rheumatoid.org.uk tel: 01628 823524; masses of support includes free helpline: 0800 298 7650, Volunteer Network of friendly, trained volunteers (all of whom have RA) ready with telephone support when you need it (or email volunteer@rheumatoid.org.uk), plus lively online members' forum. Arthritis Care, www.arthritiscare.org.uk tel: 020 7380 6500, free helpline: 0808 800 4050, email helplines@Arthritiscare.org.uk Arthritis Research Campaign (ARC), www.arc.org.uk tel: 0870 850 5000. |
Another autoimmune disorder where the body's defence system turns against itself and attacks glands that produce moisture. The most common symptoms are dry eyes (kerato-conjunctivitis sicca) and/or dry mouth (xerostomia), and feeling very tired and aching. In secondary Sjögren's, the symptoms accompany other rheumatic disorders such as RA, lupus, systemic sclerosis. Dry eyes occur in about 15% of people with RA. In primary Sjögren's there is no underlying rheumatic disorder.
Eyes may feel persistently 'gritty', tired, and sensitive to light. Mouth and throat may feel dry, and possibly ulcerate. Dry skin may be itchy. Other parts of the body may be affected. Cause and cure aren't known yet. Eye drops may ease eye discomfort, and frequent sips of fluid may help the dry mouth. Replens or other lubricants may help a dry vagina. Aqueous cream or itch relief cream may ease dry skin. Preventive dental care is important.
Sjögren was a Swedish ophthalmologist who first described the condition in 1933.
| Groups: | British Sjögren's Syndrome Association (BSSA), tel: 0121 455 6532, helpline: 0121 455 6549, www.bssa.uk.net. Raynaud's & Scleroderma Association, tel: 01270 872776, helpline: 0800 917 2494, www.raynauds.org |
| Read: | ARC's Sjögren's Syndrome. Raynaud's & Scleroderma Association's Sjögren's Syndrome. BSSA's priced publications Advisory Guide for Patients and Doctors, The New Sjögren's Syndrome Handbook. Arthritis and Musculoskeletal Alliance (ARMA)'s Standards of Care for People with Connective Tissue Disease |
The term scleroderma comes from the Greek, 'sclero' meaning hard, and 'derma' meaning skin, ie hard skin, but the hardness (too much collagen) isn't limited to the skin, and can affect any connective tissue in the body. Although collagen is essential for holding the body together, too much can make bits of the body stiff and unable to function properly. The internal organs (lungs, heart, kidneys and gut) and their blood supply may become damaged. Raynaud's and Sjögren's may occur too.
Scleroderma's quite rare, affecting only three in a million people (one of them being me, and another being Anne Mawdsley, founder of the Raynaud's & Scleroderma Association). It's commoner in women than in men, and most common between the ages of 30 and 50. Alas it's not possible to predict the course of the disease in any one individual — it may be mild or severe, and the cause is still unknown. Treatment consists of various drugs to help control the condition or to treat complications, also exercise, care of the skin, and help to help you lead as normal a life as possible.
| Read: | Leaflets available to download or by post from the Raynaud's Association include Scleroderma (Systemic Sclerosis), Cutaneous Systemic Sclerosis (CREST), The Gut in Scleroderma. Also priced publications including The Scleroderma Patients' Booklet. ARC's Scleroderma. Arthritis and Musculoskeletal Alliance (ARMA)'s Standards of Care for People with Connective Tissue DiseaseRead also the section in this chapter about Raynaud's. |
| Groups: | Raynaud's & Scleroderma Association, tel: 01270 872776, helpline: 0800 917 2494, www.raynauds.org.uk The Scleroderma Society, tel: 020 8961 4912, www.sclerodermasociety.co.uk Arthritis Care. Arthritis Research Campaign |