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Joint health

In this section of the website we'll look at how you can look after your joints, what can be done if you have joint damage, as well as how you can manage joint pain.

Damaged joints

Joint damage (i.e. joint arthropathy) is one of the most common complications of haemophilia, and is caused by repeated bleeding within the joint tissue. Bleeding into the joint affects:

  • The synovium, a thin, highly vascularised lining that lubricates the joint, feeds the cartilage and removes joint fluid and debris. The synovium thickens and develops more blood vessels as a result of repeated bleeding, which then makes subsequent bleeding more likely to happen
  • The cartilage, a smooth hard cap on the ends of the bones that forms the joint. The cartilage gets eaten away by proteins, called enzymes, released from the thickened synovium

If you have joint damage you're not alone. Many people with haemophilia develop permanent joint deformities that result in loss of movement and muscle strength, accompanied by joint pain. Damaged joints can even give you symptoms that are similar to arthritis. They may be painful, hot and swollen. You can find out more about arthritis here: http://www.arthritiscare.org.uk/Home

What can I do to prevent joint damage?

Exercise can help strengthen the muscles around the joints, making them stronger and less prone to injury (see Fitness). And, to help minimise further joint damage, you could try prophylaxis.

What can I do to manage joint damage?

You may have limited movement in some of your joints, making it difficult for you to take part in daily activities such as driving, walking, washing and even getting dressed. But there are many things you can do to make living with joint damage easier.

Occupational therapists can make adjustments to your home and workplace. By recommending a variety of useful equipment that's specifically tailored to your needs (e.g. bathing aids: lifts and seats, walking aids: sticks and frames), they're able to create more functional and convenient spaces. All equipment is free through the NHS. If you would like to know more about occupational therapy, talk to the healthcare professionals at your Haemophilia Centre.

Alternatively, you could post a question to an occupational therapist. Just go to: Ask an Occupational Therapist.

Joints that are especially painful and/or damaged can be controlled with pain management techniques (see Pain management and/or Surgery).

Pain management

Joint damage can cause long-term pain and the loss of mobility, which needs to be managed in order to maintain independence. Depending on the severity of pain, and joint damage, this can either be managed by painkillers and/or pain control, as described below, or through the use of surgery (see Surgery ). In any case, your haemophilia healthcare professionals should be able to offer you some advice on the next steps that you need to take.

Medication

When you're buying any type of medicine in a pharmacy or supermarket, make sure you always read the information leaflet in the packet. Always consult your Haemophilia Centre before taking medicines containing aspirin or ibuprofen, as they can affect blood clotting, and make bleeding worse. Before we review the types of pain medicines (analgesics) available to you, we'll summarise the do's and dont's of pain control.

image of pills for pain management

Do:

  • Treat the underlying cause effectively and quickly
  • Tell healthcare professionals if your medication seems to stop working, or you experience any side effects
  • Keep medicine in a safe place where others can't reach it

Don't:

  • Worry about becoming dependent on the drugs. This isn't a problem when they're taken as prescribed
  • Offer your medication to anyone else
  • Drink alcohol whilst taking analgesics

Paracetamol

If you are looking for mild pain relief try paracetamol. Paracetamol doesn't affect bleeding and is relatively free of side effects, unless taken in overdose. Do not take paracetamol with large quantities of alcohol, and/or if you have any conditions affecting your liver. In this case, it's recommended that you speak to a healthcare professional before using this analgesic.

Also, it's worth noting here that many remedies for colds, congested sinuses and upset stomachs also contain either paracetamol or aspirin, so check the packaging of these products to make sure that you don't take those containing aspirin.

Like all drugs, paracetamol must be stored out of reach of children, and the recommended dose must not be exceeded. If in any doubt, seek advice from your local Haemophilia Centre.

image of pills for pain management

Opioids (narcotics)

Opioids are a different type of analgesic that are available on prescription only. Mild-to-moderate strength varieties include codeine, dihydrocodeine and tramadol. The efficacy of these agents is increased when used with paracetamol. Morphine is the most widely used strong opioid and, as with other strong opioids, the dose can be increased to control pain. Don't drink alcohol when taking these analgesics. You can find out more about the different types of opioids in the table below.

Drug Pain indication
(level of relief required)		 Route of
administration		 Notes
Codeine Mild-to-moderate Oral (tablets, capsules,
solution [i.e. liquid])		 Can be found in some cough and cold
medicines in combination with paracetamol or
aspirin. Always consult your Haemophilia
Centre before taking medicines containing aspirin
Dihydrocodeine Moderate to
moderately severe		 Oral (tablets, solution)
and intravenous		 Solution is often used for moderate to severe
pain. Injection is often used for severe pain
Tramadol Moderate to
moderately severe		 Oral (tablets, extended
release tablets)		 Extended release tablets are for those in
continuous pain
Morphine Severe Oral (long acting
tablets, capsules,
solution [oramorph])		 For 'breakthrough pain' (a sudden, short period
of pain that isn't alleviated by a person's normal
pain medication). Has rapid onset and is
suitable for use 'as required'
Diamorphine Severe Oral (tablets) and
intravenous		 Intravenous dihydrocodeine for acute or chronic
severe pain
Fentanyl Severe Transdermal patch Patches are stuck onto the skin like a plaster.
Patches deliver continuous pain relief so are
useful for treating chronic pain

The main side effects of using opiates include nausea, constipation, itching and drowsiness. If you experience any side effects, are in severe pain, or have any questions about pain relief, speak to the healthcare professionals at your Haemophilia Centre.


Addiction

The most important thing you can do if you are worried about addiction is talk to someone. Haemophilia Centre teams and other healthcare professionals can help you manage your pain and overcome your addiction should you develop one. Maintain regular contact with your Haemophilia Centre, which can advise you on how to manage your pain safely.

Non-medicinal pain control

There are many ways to help control the pain in your joints, without using medicine. Remember that pain management is not just about taking the right painkillers, but also about improving your quality-of-life. With a modern approach to pain control, it should be possible to achieve rapid and prolonged relief of symptoms. Below are some examples of non-medicinal pain control but please feel free to talk to your hamemophilia healthcare professionals if you'd like more information.

Distraction

Perhaps the simplest distraction technique is to take up a hobby, especially if you're not working.

Support from family and friends are also an important means of distraction from pain, particularly as they can act as a 'sounding board' for anxieties about it. You can also seek further support from a counsellor, via your GP or Haemophilia Centre, if you should need it.

Joining a support group or participating in a self-management course can help you share your experiences with others, and may help you learn how to change your behaviour through changing how you think about your condition.

Imagery can be used alongside relaxation techniques, especially if you're experiencing difficulty sleeping.

Physiotherapy

Widely recognised as great way to help relieve pain caused by joint stiffness, physiotherapy helps increase muscle strength and endurance. This, in turn, increases joint mobility. A specially trained haemophilia physiotherapist may:

  • Implement hydrotherapy and/or a home exercise programme, such as ours (see Exercise bands), after a full needs assessment
  • Show you how to use a Transcutaneous Electrical Nerve Stimulator (TENS) machine, which helps ease pain by delivering small electrical pulses via electrodes placed on the skin. When used properly, a TENS machine can provide pain relief for two or more hours

Relaxation

Yoga, meditation (see Wellbeing) and other methods, such as hot and cold therapy, can help you mentally manage your pain. For more information on these techniques, please speak to your Haemophilia Centre.