People with AS have times when their symptoms seem to worsen or flare up.
Some general advice on managing flare ups includes:
Talk to your rheumatologist or your GP about how you can adjust your usual medications if your AS flares up.
Know the maximum dose you can safely increase your usual medications to
Know what other medications you can safely add in. For example, if you are on an anti inflammatory such as naproxen, be clear about the maximum daily dose and know what dose of paracetamol you can safely add in.
Write down the information you are given and keep it somewhere safe so you can refer to it when needed.
Make sure you have the medication you need and if you are travelling don't forget to pack it in your hand luggage. There's more information on travelling on the NASS website.
Avoid high impact exercise such as running if you are having a flare up or feel a flare up coming on.
Talk to your physiotherapist about the type of gentle stretching exercises that would be most suitable for you during a flare up.
There are suggested stretching exercises in our Back to Action exercise guide but it's always best to get individual advice if you can.
Take the time to write down a list of the things that you know make you feel better both physically and mentally when your AS is worse and pin it up somewhere in the home. That way you have some helpful pointers ready for if you do flare up. Some things that people have told us make them feel better include:
- A long, hot bath
- Gently stretching in a long hot shower
- Using an electric under-blanket in bed
- Alternating between hot water bottles or wheat bags and ice packs
- Watching your favourite DVD or playing your favourite music. Some people have told us that they have a special mood busting play list on their iPod for when they really feel down and stressed with their AS
We would love to see your tips for coping with a flare up. If you would like to share them please use the box at the bottom of he page.
Burn-out in AS - fact or fiction?
Some people with AS are told by their rheumatologist that their AS will probably ‘burn out' eventually. Occasionally a time-scale is put on it though usually this is just a hope for some time far off in the future.
By ‘burn out' rheumatologists mean that the inflammation will stop along with most of the pain, tiredness and stiffness. Some changes such as restricted movements will be unchanged even if the inflammation has settled.
There are surprisingly few real facts about whether burn out does actually happen in AS. This is partly because measuring inflammation in the spine has been and remains a pretty inexact science. This is true in spite of MRI, BASDAI and so on.
Current thinking is that AS probably does burn out and become truly inactive for a few people but we cannot predict in whom or when this will occur. Much more often burn out simply means that people are now able to tolerate symptoms which may have been ongoing for many years.
NASS would like to hear from members about your experience of flares and burn out in AS
Members always tell us how interesting and useful they find it to read about other people's experience of AS so if you have any experiences of flares or burn out then do let us know. We'd be really interested to hear:
- How do they affect you?
- How do you know you are experiencing a flare up?
- How often do you get flare ups?
- How have things changed over time?
- What helps you when you are experiencing a flare?
- Do you think your AS has burnt out? Why?
You can help with this by making your own suggestions and comments in the box below. You can write as much or as little as you want in the box.
Last reviewed: May 2013