Many of those affected are older, but children also get rheumatism. Diagnosis is difficult, especially at a young age. Parents need to know this in order to give their child the best possible support.
Usually rheumatism is only known from one’s grandparents or old great aunt, but children can also get it. Around 1.5 million people across Germany are affected by rheumatism. Most are adults or very old, but according to the German Rheumatism Research Center (DRFZ) around 20,000 of them are children and adolescents – the number of those affected is rising steadily. It is difficult to recognize the disease, especially in young children. Most of the time, they cannot speak openly about it and it is up to the parents to recognize whether the child is in pain in order to prevent permanent damage.
What is rheumatism anyway?
Rheumatism is a generic term for many different inflammatory diseases. This inflammation occurs because the immune system is misdirected and then directed against the body’s own structures. Immune cells migrate to the joints and organs and produce substances that promote inflammation. The joint becomes inflamed and starts to hurt.
Why the immune system goes crazy and attacks your own body is still unknown. A cure is also not yet in sight. The possibilities for combating the consequences and acute pain have advanced far in recent years, but the disease cannot be cured causally.
Various factors control the risk of disease. A combination of genetic predisposition and environmental factors could probably lead to rheumatism – such as a stressful and stressful phase of life, an injury or illness. So some people are simply more prone to rheumatism than others. If they then get into a stressful phase, injure themselves while exercising or get sick, this can trigger acute inflammation. In children, the prognosis is usually much better than in adults. Occasionally the disease may be brought under control and become inactive.
The clinical pictures are very different: Joints, vessels and connective tissue can be affected. Joint rheumatism is most common among these rheumatic-inflammatory diseases in children. Juvenile Idiopathic Arthritis (JIA for short) affects about one in 1,000 children nationwide. In JIA, the joint inflammation occurs before the age of 16, the cause is unclear. The inflammation manifests itself in a variety of ways.
According to the DRFZ, around every second JIA patient is affected by oligoarthritis (oligo = few joints, arthritis = joint inflammation). The characteristics are:
- Usually only one or a few affected joints are affected, usually the knee joint at the beginning
- the disease occurs in infancy.
The Systemic arthritis usually manifests itself:
- Fever and reddish skin symptoms
- In addition to inflammation of joints, internal organs are also affected.
The psoriatic arthritis (psoriasis = psoriasis) is a psoriasis advance – usually by several years.
In the case of arthritis with a tendency to enthesitis (entheses = tendon attachments), the following are inflamed:
- Ankle and ankle joints
- as well as the tendon attachments – often on the heel.
- It mostly occurs in boys of school age.
In polyarthritis (poly = many) more than four joints become inflamed. There are two versions:
- One of them has a rheumatoid factor in the blood,
- for the other, the factor cannot be proven.
- Most often this disease develops in young girls. According to the DRFZ, about 19% of all JIA patients suffer from this manifestation.
In addition to the joints that are often affected, such as knees, hips, hands and feet, inflammation can also affect the jaw in any of the manifestations. Inflammation of internal organs can also be associated with JIA, although this is particularly common in systemic arthritis. The children’s eyes are particularly at risk. A visit to the ophthalmologist should clarify this.
All forms of JIA are difficult to identify – especially when the child is still small. Any child, of any age, from small babies to adolescents can be affected. Many small children do not complain about the pain, but simply adopt a protective posture. Even with adolescents it can happen that they only mention their pain in passing and instead try to find relief for their painful joint. Most of the time, they do this pretty well, even if only for a short time.
The symptoms differ from person to person. Many children have pain in their joints – when moving and when they are at rest. The joints sometimes show no external features at all. But there is also swelling, strong warmth and reddish tint. Children can also develop a fever. Sometimes the child has difficulty opening their mouth fully or complains of pain when chewing. These clues provide further information:
Does the child limp while walking? Does it relieve a leg? Is it different or does it support itself differently than before? Are the joints overheated, swollen or stiff after getting up? Does the child want to hug again, even though they have been walking for a long time? Does the child complain of pain when moving?
These could all be the first signs of rheumatism. Of course, the child could only have been injured while exercising. However, if the symptoms occur regularly and with increasing frequency, a doctor should be consulted.
The diagnosis – a (often) long road
The first way is to see a pediatrician or an orthopedic surgeon. The search for traces begins here. It is particularly difficult to make a clear diagnosis in children and adolescents, as there are usually no clear markers in the blood at the onset of the disease. The imaging is also usually not very meaningful. X-rays rarely show anything and other imaging techniques, such as magnetic resonance imaging or sonography, are difficult to interpret. The diagnosis is like a giant puzzle made up of the patient’s complaints, clinical, laboratory, imaging findings and the previous medical history. If there is even the slightest suspicion of children’s rheumatism, a child and adolescent rheumatologist is involved in the diagnosis. Supply map of the Rheumatism League .
The therapy – remedy for pain and inflammation
Once the diagnosis has been made, everyone involved needs to breathe a sigh of relief, because even if rheumatism is not yet curable, there are very successful therapy methods that promise rapid pain relief. The aim of the therapy is to combat inflammation in the joints, relieve pain and remedy the restrictions on movement as quickly as possible. There should be no permanent damage to joints or organs.
For this, the therapy is based on various building blocks, which all together drive the path to the goal. The first building block is the medication. Treatment for rheumatoid arthritis in children usually begins with prescribing nonsteroidal anti-inflammatory drugs (NSAIDs). These are cortisone-free drugs that are said to relieve pain, reduce inflammation and lower fever. In the case of acute inflammation, cortisone can also be administered, which is supposed to intensify the reduction in inflammation and pain. Systematic cortisone therapy can take the form of tablets or injections of a liquid containing cortisone directly into the affected joint. High doses over a long period of time come here due to side effects such as weight gain (“full moon face”), increased body hair, growth disorders and bone decalcification, only used in the case of particularly severe disease processes. In addition, children who take a dose of cortisone higher than ten milligrams per day have an up to three times higher risk of infection than children without cortisone therapy. With the short-term administration of cortisone in acute therapy, however, there is little need to worry about undesirable side effects at high doses.
If NSAIDs and cortisone do not have a sufficient effect, rheumatologists usually resort to so-called basic drugs. These are supposed to bring the disease to a standstill. Methotrexate (MTX) is used here particularly frequently: an agent from cancer therapy that is dosed 1000 times lower. This can also be taken as a tablet or injected. Most of the time, despite the fear of injections, the children do not take the pill, as this can cause nausea and, if taken weekly, can severely restrict everyday life. With its poison green color, the syringe does not necessarily make the feeling better, but it does not cause nausea.
If MTX does not have the desired effect either, biologics are usually added. These drugs are based on a natural group of substances. They inhibit the body’s own messenger substances of the immune system. In rheumatoid arthritis, the messenger substance TNF-alpha is blocked and the transmission of the inflammation can be prevented. The inflammation of the joints will decrease. The onset of action is often quick and with impressive results. Nevertheless, the side effects of biologics cannot be completely neglected: The weakening of the immune system must be considered, especially with regard to vaccinations. With so-called passive vaccinations and dead vaccines there is usually nothing to consider, with live vaccines (such as measles, mumps,
Movement therapy is another component of the therapy. Physiotherapy releases tension in the muscles, strengthens them and relieves the joints. The movement stimulates the metabolic exchange in the blood and inflammation – as far as possible – is fought by the body itself. Even acutely inflamed joints should be moved carefully and without strain.
Occupational therapy is not recommended for everyone with rheumatism. If it is recommended by the attending physician, you should definitely take advantage of the therapy and take the chance. The aim here is to maintain and improve joint functions. Children learn how to take part in games with other children that is as gentle on their joints as possible, how to avoid improper stress and how to avoid overloading. For this one takes various exercises, but also rails to help.
And what does rheumatism mean for the family?
Rheumatism in a child or adolescent is not just a big change for their own life. It is also a major turning point for the family. Trips have to be canceled or rescheduled, you can’t just frolic outside, meet friends or take long walks. Those affected often suffer from permanent pain and nothing is able to provide them with relief. When it rains, the pain gets worse, so the child stays inside. This can be a major limitation, especially in the rainy autumn or winter months.
The therapy determines the daily routine of the entire family: taking medication in the morning, doing physiotherapy, going to physiotherapy or occupational therapy, taking medication. Everything accompanied by the usual pain. Every day the child’s condition can get worse or better. It can go steeply uphill or downhill overnight.
Often, from the time of diagnosis, one parent only takes care of the sick child. The other parent goes to work. Both can feel misunderstood and left alone. It is not uncommon for unspoken allegations to appear. The most important thing in such a time would be to stick together and support one another. Open communication and maybe a little support from outside help here: A therapist for the family can perhaps resolve the problem quickly.
It can also happen that siblings feel neglected and take a back seat. The parents often don’t mean it badly at all. You are simply just busy with the rheumatoid child all the time. Many siblings not only receive less attention, but are often asked to show understanding and show consideration. Many understand that. They too want to help and support and, above all, not be an additional burden on the parents. Open communication with the siblings is particularly important here. So you can step in early enough if a child feels neglected. The sick child should also play a role. Because it must also understand that although it is not well,
During this time, siblings can develop an even closer bond, because the sick child will not necessarily, but very likely, lose many of his friends to the illness. With persistent pain, the child is often unable to play with other children as often and exuberantly as they would like. Depending on the age of the child and the friends, it can also happen that the other children do not understand the child’s illness at all and show no empathy. Many children do not want to suppress their urge to move. In summer they prefer to race outside instead of watching a movie inside just because a single child friend cannot play outside. In order to counteract this development, however, one can seek a conversation with the parents of the friends,
If the loss of friendships can be absorbed by the bond of siblings, it is the greatest gain one can have in this situation.
Children don’t want “outsider” status
School is often the only place of social contact that children with rheumatism have, and this is where there is a lot of potential for conflict. Many children do not want to be seen as outsiders by their classmates because they wear a splint or get more time for class work. You want to take part in physical education classes and not sit on the sidelines. Go out during the break and romp around with the others – ticking or playing tag.
Before the child goes back to school, parents should make sure that they are no longer ashamed of their illness. After all, the child is not to blame for their condition and should never feel bad about it. It can be very helpful to explain the illness to the child as clearly as possible – as graphically as possible. The child can then explain it to their classmates in the same way. Children with rheumatism usually know a great deal about their condition, but cannot explain it well.
For example, it would be possible to describe the child’s immune system as a kind of army. The army of the other children only has good soldiers, but that of the rheumatoid child also has bad soldiers in its ranks. These evil soldiers turn against your own body and destroy it. In order to fight the bad soldiers, the good soldiers still need the help of other soldiers. That is why the child has to take so much medication. It is only allowed to do sports and romp around after the evil soldiers have been defeated.
Can Diet Help?
There is no nutritional plan and no recipe for success as to how diet can best support therapy, but there are a few good tips that are worth trying out.
In general, the diet of rheumatism sufferers should be as varied as possible – whole grain products and fresh fruit and vegetables should not be missing. Scientific studies show that many animal foods exacerbate the inflammation. Arachidonic acid is found in meat and dairy products. From this, inflammation-promoting messenger substances are later formed, which can intensify the inflammation. Reducing your meat product consumption to a few times a week or a month is a great way to lower your dietary fatty acid intake.
However, it is important to continue to consume fish. The eicosapentaenoic acid (EPA) contained in fish has exactly the opposite effect as the arachidonic acid contained in meat. EPA has shown slight improvements in joint swelling and pain intensity according to clinical tests. The components of EPA are also found in many different oils, such as rapeseed and linseed oil.
A third tip for the diet are spices: ginger, curry, caraway seeds and garlic prevent the formation of inflammatory substances from arachidonic acid and can also lead to a significant improvement in pain with regular use.
In many circles, nutrition tips are considered a miracle weapon. Vegetarianism and veganism are particularly popular. However, there is no scientific evidence as to whether this diet can fight rheumatic diseases in the long term. Here everyone has to listen to their own feelings and try different things. Everyone is different and everyone can digest different foods differently.
Once in rehab – please!
In the case of acute and very severe inflammation or difficulties in being adjusted to the right medication, it is possible to go to a clinic that specializes in rheumatism patients. Intensive support is very important here. Patients are properly adjusted to their medication, receive physiotherapy and occupational therapy, can try out new therapy methods, manage their pain in pain therapy and get to know like-minded people. Especially for children who feel lonely with their suffering, this can be the most helpful point in a pediatric rheumatology clinic.
Rehabilitation is very useful in order to escape from everyday life and to repair the subsequent damage after an acute attack. The aim of rehabilitation is to maintain or restore joint functions. Here it is particularly important that the child comes to a specialized institution. Appropriate psychological care, patient training and qualified pediatric rheumatoid treatment should be provided. Here, too, the social factor is great – children feel less alone. Such a facility is best selected with the treating rheumatologist, who knows exactly what to look out for and whether the clinic or rehab is suitable. The rehabilitation facilities and clinics can also be found on the care map of the Rheumatism League.
What tips and tricks are there?
Rheumatism comes in many different forms, so there are many different tips and tricks: some help, some less. However, they are always worth a try for acute pain. Parents can relieve their child with simple home remedies, because every warm or swollen joint can be cooled. Simply wrap an ice pack in a towel and use it as a cooling wrap around the joint. The cold removes excess heat from the joint, which can lead to inhibition of inflammation and relief of acute pain. Not every child reacts positively to the cold. Here it is time to try it out. With luck you have discovered the miracle cure!
The child does not have to go to a rheumatism clinic straight away to make contact with children and adolescents who are also affected by rheumatism. A rheumatism forum offers a platform for the exchange of topics about JIA. On social media such as Instagram, many young people share their experiences and exchange ideas about their situations. Even if it is only virtual contact, affected children and young people no longer feel so alone with their problems. You can also find further tips from other sufferers here.
Open communication with and in school can also be very helpful. Parents can speak openly with class teachers and school principals. Perhaps the class can be moved to a different classroom so that there are fewer stairs to walk. It is possible to order a second set of school books so that the child does not have to drag heavy school books to school every day. Compensating for the handicap can add more time to classwork or get a computer to write with if writing with your hands is painful. If the water in the swimming pool is too cold during swimming lessons, a certificate can remove the child from class, but perhaps a grade can still be achieved through open communication with the teachers.
What if nothing wants to help?
There is no cure for rheumatism. Medicine is far and has made many advances in recent years, but therapy only combats the symptoms of the disease – not its cause. In most cases, timely therapy can completely reduce joint inflammation, prevent permanent damage, and reduce movement restrictions. Juvenile idiopathic arthritis has a significantly better prognosis than that of adult rheumatism patients. It is not uncommon for the disease to come to a standstill in children and adolescents and become inactive. There is always a little bit of rheumatism slumbering in everyone affected, but the renewed outbreak is in the stars. The rheumatism may never return.
The likelihood that the pain and inflammation will flare up again after stopping medication is around 50 percent – which does not mean that you have to take medication forever. In any case, after successfully combating the inflammation, it is helpful to listen to the doctor and agree to stop taking the medication, even if there may be great fear that the pain will return.
In any case, it is particularly important not to lose hope of recovery. There is no recipe for success here, as every person and every disease is different, but many children and adolescents have managed to get the disease under control and many more will follow. Optimism is not the only real road to improvement, but not losing hope is a good place to start.