Manging sickle cell disease pain at home

Pain is the most common problem for people with sickle cell disease. It is important to know how you can try to prevent it starting and what you can do to manage pain at home. It is also important to know when and how to call the hospital if you are still in pain.

How can I prevent pain?

Drink plenty of fluids. Water is best, but a combination of the things you like such as squash, tea, fruit juices, and milk are also good.

Stay warm and avoid sudden chills. Anticipate situations and always have something warm to put on after you have been exercising and an extra layer for when you go outside.

Avoid getting wet when you are unable to get dry (such as wet feet on a rainy day at school).

Try to manage and avoid stressful situations. Allow yourself plenty of time for things such as homework, travelling to appointments, and exam revision.

Even if you do all these things it is still possible to have a painful crisis, but paying attention to these measures will lessen the frequency of painful crisis

I am in pain, what painkiller should I take?

The first choice of painkiller is paracetamol, which is a type of analgesic medicine.

This should be taken as soon as you start getting pain. The correct dose for you will be on your latest clinic letter. Take it every 4 hours up to 4 times in 1 day. Do not have more than your recommended dose in a 24 hour period.

What if paracetamol is not enough?

If you are still in pain after taking paracetamol, the next step to take a different type of painkiller called NSAIDs (non-steroidal anti-inflammatory drugs).

These painkillers should generally not be taken long term as they can cause indigestion and stomach problems. They work by reducing swelling and inflammation. NSAIDs are especially effective for bone pain. Take this if you are still in pain 20 to 30 minutes after taking paracetamol.

There are 2 common medicines in this group, either ibuprofen or diclofenac.

Ibuprofen can be bought over the counter at chemists. We will provide it as a prescription in clinic and you can ask your GP to renew this prescription. The dose you take is on your latest clinic letter. It can be taken 3 times a day.

Diclofenac is available only on prescription. Some people find it more effective than ibuprofen. You can discuss this with the doctor at clinic if you would like to use it instead of ibuprofen.

You cannot take ibuprofen and diclofenac together.

NSAIDs can cause stomach irritation and should not be taken on an empty stomach. Instead, take them with a meal or snack, or a glass of milk.

NSAIDs may not be good for you if you have kidney problems and may cause fluid retention. Your doctor will not prescribe them for you if they would be bad for you.

You should check with the clinic doctor before taking any of these painkillers if you have any stomach, heart, liver or kidney problems, asthma, or if you may be pregnant.

Are there any other options?

If the pain is still not resolving, you may be able to take Dihydrocodeine. This is for moderate to severe pain.

Dihydrocodeine is available only on prescription, and is not suitable for everybody. You can discuss this with your doctor if you think it might be helpful for you and you would like to try it.

Some dihydrocodeine side effects may include:

• constipation
• feeling sick
• dizziness

I am still in pain, what should I do?

Relaxation and distraction techniques can also help, such as:

• warm bath
• massaging the part that hurts
• watching a good film
• playing a game
• listening to music
• reading a book

If you have tried these and taken your painkillers as above and it is still not enough then it is time to phone the hospital. Phone the hospital to arrange a review on Ward 6 on 0114 271 7322. The nursing staff there will take a note of your symptoms and ask the Haematology doctor or nurse specialist to phone you back, or arrange for you to come to the hospital for a review.

Will I need morphine?

It is likely that we will need to use a group of medicines called ‘opiate analgesia’ such as morphine or diamorphine. Opioids are the strongest painkillers available.

These medicines can be taken by mouth, as a spray in your nose (fast acting but short lived), or into a vein (intravenous).

The most common side effects of this group of painkillers are:

• drowsiness
• dizziness
• feeling sick and being sick (anti-sickness mediations can be used to reduce this)

One of the most important side effects of opioid painkillers is a reduced breathing rate, which can lead to low oxygen levels. Your breathing needs to be monitored closely especially if you have never had or rarely had this type of painkiller before.

When pain settles

A painful episode may last several days. If you need to use these strong opioids, you must wean yourself off for a few days at the end and not stop taking them abruptly. This is because your body may become used to these strong painkillers. Suddenly stopping the medicine may itself cause you pain.

Points to remember