Practical advice for parents with rheumatic disease

There are various ways you can adapt to make your new life easier. This article offers advice on practical adaptations, what you should be aware of when buying baby equipment, and on assistive products you can use.

Once you have a baby, it may be more difficult to find the time to take a break and rest up. You will also feel the physical effects of caring for your baby in terms of heavy lifting and handling.

If you also have a rheumatic disease to cope with, keeping up your energy, day in, day out, may call for extra thought and planning.

Baby equipment

Try out the equipment in the store

One important thing to consider when shopping for baby gear is whether you can actually manage to use it physically. It can be a good idea to check this in the store before you buy the equipment.

You should pay particular attention to whether you are able to operate the various fastening/adjustment mechanisms, handles, special locks, press-studs and buttons, and how much weight you’re able to lift.

The range of children’s equipment available is huge and changes all the time. This is why we are unable to recommend products or name particular brands suitable for people with rheumatic disease.

Baby clothes

Before shopping for baby clothes, it’s a good idea to check how ‘parent-friendly’ they are. Quite a lot of baby clothes have ties, press-studs, tiny buttons and zips. If you have problems with your hand and finger joints, these fasteners on baby clothes may make daily baby care needlessly challenging. Instead, try to go for clothes made of stretchy fabric with as few fasteners as possible, as opposed to babywear with tiny buttons or other closures that require nimble fingers.

To do up zips and buttons you can use a tweezers-pliers tool. This is a special aid that you can also use to undo the fastener tapes on disposable nappies. The tweezers-pliers tool provides a firmer, more precise grip.

As your child grows you can get better hold of zips by adding a ring to the zip pull, or you can buy clothes with hook and loop fasteners, as these are easier to open and close. Many parents choose to buy children’s shoes with hook and loop fasteners rather than shoelaces.

A young child also automatically means doing more laundry. If your washing machine is installed nearer waist height, it will be easier to remove the wet laundry. If you have problems with your shoulders, you may find it easier to use a drying rack with low-hanging cords. With a tumble dryer, you can largely avoid having to hang up a wet and heavy washload.

Baby’s cot

Many cots have a height-adjustable base. In the first few months after your baby is born it is often easier to keep baby in a tall bed or cot with the base raised to its highest position because this makes it easier to lift your little one out.

Some cots also have a drop side. If the cot base can be raised to the height of the adult bed, you can then align the cot with your bed, and slide baby over into your bed without having to get up for night-time feeds, for example. Using a changing mat, slider board or slide sheet between the baby cot and the adult bed, will help you move baby more easily.

As your child grows, the cot base will need to be lowered, making it harder to lift baby out of the cot. However, well-stocked baby equipment stores sell beds with practical opening mechanisms. Some beds have side-hinged panels that open like a door, while others have a pull-up panel.

Prams and pushchairs

You’ll want to spend plenty of time choosing the right pram/travel system. Check that

  • the handle is comfortable to hold
  • you can operate the brake
  • you can open and close the hood
  • the locking mechanisms on the rear and frame are not too tough to operate
  • you can remove/attach the wheels
  • you can fold up and lift the frame into your car

Also check the weight of the carry cot, bearing in mind that it will be heavier to carry with your baby, a duvet and pillow inside.

Consider a three-wheeler instead of a four-wheeler. Note that a three-wheeler without a lockable swivel wheel runs smoothly on hard, flat surfaces, but can be very heavy to push on slightly uneven ground. Large wheels on the frame tend to make it more rigid, but may make it easier to push over uneven ground and in snow.

Many parents appreciate a light-weight frame that folds up easily, but the main thing is to make your choice based on your own needs.

Baby’s car seat can be fitted to some types of travel systems so you can transport baby in the car seat over to your car. This may save you a lot of effort, especially if your car is parked some distance away.

Playpen

A playpen allows you to put your child down safely while cooking or taking care of other daily tasks. A lot of parents recommend a playpen with a gate and an adjustable base. This means you avoid having to bend down over the playpen to lift your little one out.

Some parents prefer a small mobile playpen on wheels so it can be moved more easily to other parts of the room.

Infant car seat

Car seats with a fixed base anchored in your car are recommended because the detachable carrier baby sits in can easily be taken in and out of the car. The advantage is that you can secure your child in the carrier before going out. You can then carry your baby secured in the carrier over to the car and pop the carrier straight onto the base.

Check that you can handle the restraints and locking mechanisms, and that you can carry the carrier plus the weight of your child. You can also get infant car seats that twist into place, which makes it easier to position the child or lift them out of the seat, which requires less effort if you suffer from back pain.

Practical adaptation

Avoid needless lifting and awkward postures

To avoid strain on sore joints, it helps a lot if you

  • maintain a good ergonomic height for nappy changes
  • avoid static holds (staying in the same position) when bathing baby
  • maintain a no-strain posture when feeding baby

By taking an objective look at how your home is furnished, you should be able to come up with practical solutions to make daily life easier. Consider how rooms and equipment are organised to avoid needless lifting and awkward working postures.

The occupational therapist in your municipality or at the hospital can help you assess options for practical adaptation in your home.

The need for assistive products and home adaptation differs, and will depend on the individual symptoms of the rheumatic disease.

Spread housework over longer periods of time

To make daily tasks less exhausting and to lessen the strain on the joints, it may be

helpful to

  • split tasks up
  • take breaks
  • allow more time for the highest-strain activities you have to get through over the course of the day

Even if you have days when you feel fit, it is important not to push yourself to do too much physically demanding work, as you may then end up exhausted, with no energy left at all.

Carrying and lifting

When lifting, take care to

  • use your whole body
  • bend at the knees
  • keep your elbows slightly bent

If you have a lot of wrist pain, wearing wrist braces helps reduce strain and pain. Lifting close to your body also eases strain on your joints. An alternative to carrying can be to use an indoor baby stroller. This helps you avoid carrying baby around too much.

Some parents feel more confident wearing a lightweight baby carrier when carrying their little one up stairs. A baby carrier has carrying loops that you can pull up your forearm so that the larger joints in your arm can take the weight.

Baby carriers or baby wraps place no strain on your hands and wrists. Choose equipment that

  • keeps most of the weight off your shoulders
  • provides good back support
  • allows you to easily adjust your baby’s position
  • lets you shift or move the centre of gravity/load while baby is in the harness

Before buying a baby carrier or wrap, try it out with some weight inside. That way, you’ll be able to judge if you can actually manage to take the weight of your baby using this equipment. Slightly older children soon get used to climbing up instead of being lifted up, and quickly learn to hold on to the one doing the lifting or carrying.

Feeding

It is important to find a good sitting position when feeding your baby, as this often takes a while, and you need to avoid sitting in the same position. Stack pillows under your elbow and forearm so that your shoulder and forearm are resting against them.

A chair of suitable height and with adjustable armrests can also relieve strain on your shoulders and hands when feeding your baby. Some people find that lying down on a bed with baby held close takes the strain out of bottle-feeding or breastfeeding. Some baby carriers allow baby to sit supported in the carrier for feeds.

Once baby is big enough to sit on your lap propped up with pillows, you won’t have to hold baby during feeds. Other parents recommend letting baby sit in their own seat, and not on your lap, so you avoid having to sit in the same position for a long time.

Nappy changes and bath-time

Changing table

Organise your nappy changing area so that clothes, nappies and other essentials are easy to get hold of. To avoid a “half-bent” position for your back, consider setting up a changing table at the right height. If standing for a long time hurts, you can ease the strain on your legs by sitting down to change your baby.

When you need to turn your child on the changing table, it may be easier to roll or turn them around instead of lifting them up to turn them around. Night-time nappy changes can be done with a waterproof terry towelling sheet as a changing mat.

For older children, many people recommend a dressing bench.

Bath-time

It can be a good idea to plan bath-time for the time of day when you feel least stiff, or when your partner can help out.

When bathing your child, it is important to have the bathtub at a height that provides a good working posture for the person holding the child. Another help is to use a drainage hose from the tub to let out the water, so you avoid having to lift and tip the tub to empty it.

Some parents prefer to bathe baby in the kitchen sink which is easier to fill and drain, and to have a changing mat just next to it. Many parents are afraid of losing their grip on baby at bath-time. You can buy bath seats for infants age 0-6 months for use in the bathtub. The seat is adjustable and has suction cups to keep it stabilised in the bathtub.

Using this type of seat will relieve your shoulders and free up your hands to play with your child, and takes the strain off painful joints. You can also get baby sponge pads to place in the bottom of the tub. This is basically a soft cushioning pad that supports baby and prevents slipping and sliding in the bathtub.

Assistive technology

Assistive products

Assistive products are tools or equipment available only from specialists. If you have special needs, you can apply to take out relevant assistive products on loan. An occupational therapist can help you identify your needs, and may be able to provide information.

However, a great many assistive products can be purchased from ordinary retailers, and for most people this is enough. Here is a short list of equipment and tools to ease the strain of daily activities:

  • Kitchen utensils with angled and thicker handles (to relieve wrist and finger strain)
  • Lid openers and corkscrews
  • Scissors with spring-loaded handles (for opening packaging)
  • Picker-grabber stick for picking up toys and other objects off the floor
  • Spring-loaded “tweezer-pliers” (for undoing nappy tapes, pulling up zips, opening packaging for example)
  • Slide sheet or silk sheet to make it easier to turn over in bed

How to apply for assistive products

Information about how to apply for assistive products is available at the Norwegian Labour and Welfare Administration’s Assistive Technology Centre (nav.no, in Norwegian).

The Norwegian National Advisory Unit on Pregnancy and Rheumatic Diseases (NKSR)

Monday-Friday from 08:00 to 15:00

Advises both patients and health professionals.

Norsk revmatikerforbund (Norwegian Rheumatism Association)

22 54 76 00

Tuesday from 10:00 to 15:00

Wednesday from 10:00 to 15:00

Thursday from 10:00 to 15:00

Calls are answered by people with a rheumatic disease, who can give you advice and guidance.

Podcast: Revmamas

A podcast (in Norwegian) for women who have a rheumatic disease and are planning a pregnancy or are pregnant. 

You’ll find it where you usually listen to podcasts, like Spotify for example.

Trygg mammamedisin

Get advice from professionals about safe medication use during pregnancy and breastfeeding. The service is free of charge.

Andreoli L, Bertsias GK, Agmon-Levin N, Brown S, Cervera R, Costedoat-Chalumeau N, et al. EULAR recommendations for women's health and the management of family planning, assisted reproduction, pregnancy and menopause in patients with systemic lupus erythematosus and/or antiphospholipid syndrome. Ann Rheum Dis. 2017;76(3):476-85.     

Broms G, Haerskjold A, Granath F, Kieler H, Pedersen L, Berglind IA. Effect of Maternal Psoriasis on Pregnancy and Birth Outcomes: A Population-based Cohort Study from Denmark and Sweden. Acta Derm Venereol. 2018;98(8):728-34.     

Chen JS, Ford JB, Roberts CL, Simpson JM, March LM. Pregnancy outcomes in women with juvenile idiopathic arthritis: a population-based study. Rheumatology (Oxford). 2013;52(6):1119-25.     

de Jong PH, Dolhain RJ. Fertility, Pregnancy, and Lactation in Rheumatoid Arthritis. Rheum Dis Clin North Am. 2017;43(2):227-37.     

de Man YA, Bakker-Jonges LE, Goorbergh CM, Tillemans SP, Hooijkaas H, Hazes JM, et al. Women with rheumatoid arthritis negative for anti-cyclic citrullinated peptide and rheumatoid factor are more likely to improve during pregnancy, whereas in autoantibody-positive women autoantibody levels are not influenced by pregnancy. Ann Rheum Dis. 2010;69(2):420-3.     

Flint J, Panchal S, Hurrell A, van de Venne M, Gayed M, Schreiber K, et al. BSR and BHPR guideline on prescribing drugs in pregnancy and breastfeeding-Part II: analgesics and other drugs used in rheumatology practice. Rheumatology (Oxford). 2016;55(9):1698-702.     

Flint J, Panchal S, Hurrell A, van de Venne M, Gayed M, Schreiber K, et al. BSR and BHPR guideline on prescribing drugs in pregnancy and breastfeeding-Part I: standard and biologic disease modifying anti-rheumatic drugs and corticosteroids. Rheumatology (Oxford). 2016;55(9):1693-7.     

Gotestam Skorpen C, Hoeltzenbein M, Tincani A, Fischer-Betz R, Elefant E, Chambers C, et al. The EULAR points to consider for use of antirheumatic drugs before pregnancy, and during pregnancy and lactation. Ann Rheum Dis. 2016;75(5):795-810.     

Gotestam Skorpen C, Lydersen S, Gilboe IM, Skomsvoll JF, Salvesen KA, Palm O, et al. Disease Activity During Pregnancy and the First Year Postpartum in Women With Systemic Lupus Erythematosus. Arthritis Care Res (Hoboken). 2017;69(8):1201-8.     

Ursin K, Lydersen S, Skomsvoll JF, Wallenius M. Disease activity of psoriatic arthritis during and after pregnancy: A prospective multicenter study. Arthritis Care Res (Hoboken). 2018.     

Ursin K, Lydersen S, Skomsvoll JF, Wallenius M. Disease activity during and after pregnancy in women with axial spondyloarthritis: a prospective multicentre study. Rheumatology (Oxford). 2018;57(6):1064-71.     

Ursin K, Lydersen S, Skomsvoll JF, Wallenius M. Disease Activity of Juvenile Idiopathic Arthritis during and after Pregnancy: A Prospective Multicenter Study. J Rheumatol. 2018;45(2):257-65.     

Zbinden A, van den Brandt S, Ostensen M, Villiger PM, Forger F. Risk for adverse pregnancy outcome in axial spondyloarthritis and rheumatoid arthritis: disease activity matters. Rheumatology (Oxford). 2018.     

Content provided by The Norwegian National Advisory Unit on Pregnancy and Rheumatic Diseases (NKSR)

The Norwegian National Advisory Unit on Pregnancy and Rheumatic Diseases (NKSR). Practical advice for parents with rheumatic disease. [Internet]. Oslo: The Norwegian Directorate of Health; updated Tuesday, October 10, 2023 [retrieved Sunday, December 15, 2024]. Available from: https://www.helsenorge.no/en/pregnancy-and-maternity-care-in-norway/pregnancy-childbirth-family-life-rheumatic-disease/practical-advice-for-parents-with-rheumatic-disease/

Last updated Tuesday, October 10, 2023