Coping with fatigue

Most patients with APS will find they suffer with fatigue at some point. Fortunately, the fatigue does not tend to be constant and many people find they have good and bad days.

Fatigue is characterised by a lack of energy and motivation. Unlike drowsiness, which is your body’s signal that you need sleep, fatigue is often accompanied by a general feeling of ‘heaviness’ or muscle aches and pains; it can affect you mentally as well as physically and can sometimes feel overwhelming.

While almost everybody experiences tiredness throughout the day, fatigue caused by APS is more extreme, can cause complete exhaustion, does not go away with sleep or rest and can limit your usual activities.

Although there is no cure for fatigue there are several measures you can take to help combat it:

  • Take 200-400g hydroxychloroquine daily. This drug has long been used to treat fatigue and joint pain in autoimmune conditions such as arthritis and lupus, and is now becoming recognised as an important medicine for APS too. This will need to be prescribed by your GP, and it is also very important to have a hydroxychloroquine retinopathy eye test once a year as long-term use (over five years) of this drug can sometimes damage the retina
  • Drink plenty of water. Dehydration can cause fatigue as your body lacks one of its most essential nutrients
  • Maintain a healthy balanced diet with plenty of fresh vegetables and fruit
  • Take vitamin and iron supplements. Sometimes people are low in essential vitamins and iron despite having a healthy diet, so try taking a daily all-round vitamin, mineral and iron supplement to combat your fatigue
  • Keep to an exercise programme. Regular gentle exercise has been shown to be very beneficial in combating fatigue. You should start by aiming to walk for about twenty minutes three times a week, and then increase this slowly if you feel strong enough
  • Pace yourself. It is important that you listen to your body and create strategies so your energy levels are not depleted too much. One of the dangers is that when you feel well, you will push yourself too much only to find that you are soon suffering fatigue again

Try to incorporate these pacing techniques into your lifestyle if possible:

  • Know your body
  • Do activities in short periods of time
  • Schedule rest time
  • Try and have routines
  • Prioritise on what really needs to be done
  • Switch tasks if you feel you are getting nowhere

Life insurance

While travel insurance may cover individuals with APS, obtaining life insurance with an APS diagnosis can prove challenging.

Providers may automatically reject an application for a pre-existing condition such as APS, and other policies may be unaffordable…

Women's health

Women who are taking antithrombotics such as aspirin, warfarin or especially DOACs may experience problems with increased bleeding.

Heavy blood loss can be extremely inconvenient and uncomfortable, and it can also cause iron deficiency anaemia…

Driving

Many APS patients are concerned about their safety to drive and whether they need to declare their condition to the DVLA.

Despite the DVLA listing a vast number of health conditions that you have to declare, antiphospholipid syndrome is not included…

Medication

The type of medication you can take to treat other conditions will depend on the type of treatment you are prescribed for APS.

You must let your GP/pharmacist know if you buy any over-the-counter medicines to check for contraindications…

Diet

Anyone with APS is advised to eat a healthy balanced diet of good carbohydrates, protein, low-fat dairy products and fruit and vegetables.

Maintaining a healthy weight is important both in terms of reducing cardiovascular risks and easing pressure on your bones and joints…

Stopping smoking

Smoking is even more dangerous if you have APS because it causes cardiovascular disease.

Smoking accelerates the hardening and narrowing of your arteries, which means you are two to four times more likely to develop a blood clot…

Exercise

There are no specific guidelines for people with APS, as the level of exercise you are capable of will depend on how your symptoms affect you.

Many people with APS lead extremely active lives and continue playing sports, while others are much more restricted…

Managing memory problems

Many people with APS will have some degree of memory loss and difficulty in thinking clearly; the sensation has been described as ‘brain fog’.

Memory loss can range from mild, such as difficulty finding words and absent-minded forgetfulness, to severe…

Dealing with stress

Living with APS can be mentally and physically challenging, with potential psychological consequences.

The condition’s unpredictable nature and serious complications can leave you feeling shocked, angry, depressed, and frustrated…

Air travel

Air travel is closely associated with deep vein thrombosis (DVT), particularly long-haul flights.

The number of people who get DVT from air travel is difficult to determine, simply because the condition can be symptomless and may not occur for some time after travel…

Patient stories

We are thankful to all the APS patients who have bravely shared their stories with us, to help raise awareness and to show others that they are not alone.

Diagnosis and treatment

APS is usually diagnosed from a combination of a positive blood test and symptoms. If you are under 50 and have suffered a thrombosis, or have had more than one pregnancy loss, you should discuss with your doctor whether you need blood tests.

Related conditions

Some people with APS will also have other autoimmune conditions, as may their family members. APS has been linked with many other autoimmune conditions, including rheumatoid arthritis, lupus, Raynaud’s phenomenon, and Sjögren’s syndrome.

Newly diagnosed

Receiving a new diagnosis of APS can be frightening, and no doubt you will want to know exactly what APS is. Following this, you will likely have a great many more questions to ask about the condition and how it can affect you. We are here to help!

About us

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Our mission is to achieve earlier diagnosis and offer support to anyone affected by antiphospholipid syndrome (APS) through awareness, education and research.

We need all of the support that we can get

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