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Your SpAce - Pain

Managing your pain

Welcome to Your SpAce. Here we build skills together to live life with axial SpA.

Your SpAce is for anyone with axial spondyloarthritis (axial SpA), including ankylosing spondylitis (AS). Whether you’ve just been diagnosed or you’ve been living with the condition for years, Your SpAce is here to support you.

This page is focused on managing pain. People with axial SpA can experience pain for a number of different reasons. It’s very personal to you and can change over time. So this section of Your SpAce shares information about the types of pain you can experience. It then guides you through different techniques that can help. The aim is to build a toolkit to help you manage your pain.

We’re a community, so take your time watching the videos and get involved in the comments sections. We can help each other by sharing experiences and advice.

What types of pain can you experience with axial SpA?

Click to view video transcript

Pain can be caused by your axial SpA for a number of different reasons and everyone experiences pain differently, so it’s very personal to you.

There are different types of pain. Nociceptive pain is when there’s a specific injury, like you’ve twisted your ankle, or in axial SpA, when an area is inflamed or a muscle is in spasm. This is in a local site, where the body produces chemicals, and usually responds well to pain medication.

Neuropathic pain is due to something affecting the nerves, often causing a toothache type sensation, perhaps with some tingling, burning or numb sensations. With axial SpA, inflammation or bone growth can affect nerves, causing neuropathic pain.

Nociplastic pain happens when you have pain for a long period of time and it’s difficult to find the cause – for example, any scans you have come back as normal. This is down to something called central sensitivity, which can happen in lots of conditions where you’ve experienced pain for longer than three months.

Pain is complex and you can experience different types at the same time. It can also be difficult to tell what type of pain you’re experiencing. This is why one size doesn’t fit all when it comes to managing. It’s important to learn about different self-care techniques that can be effective at different times. These can be used together with different medications.

In this section, we share some practical ways to help manage your pain, alongside medical advice from your healthcare team. Be patient with yourself as you find what works for you. Remember, how you manage your pain on one day may look very different to another. You may not need to use all the tools suggested, but it’s good to have a variety available.

It’s helpful to understand that stress can trigger pain or make it harder to cope with, so it’s important to look after your emotional wellbeing. This is particularly valuable when you experience persistent pain. We share some practical tips for this in our non-medication pain relief video below.

We recommend you speak to your GP or rheumatology team if your pain is not being managed by your medication or your usual self-management techniques.

As you work through this section, get involved by sharing your experiences and asking questions in the video comments sections. Then when you’re ready, join one of our online meetings to meet people from NASS and other people with axial SpA, who share similar experiences, and to learn ways to put our advice into action.

Discover ways to manage your pain

Click to view video transcript

In this video, we’ll explain some practical techniques that can be helpful alongside medication to manage different types of pain.

Applying heat to joints and muscles can reduce stiffness and ease mild to moderate pain. You can use a variety of things, such as heat packs, a hot water bottle, electric heating mats, and microwavable wheat bags. It’s important to protect the skin from the heat and only use for a maximum of twenty minutes. Monitor the skin so that you don’t risk burning. If you’re out and about, topical heat sprays and gels may be more useful. Follow the instructions on the packaging and consult a pharmacist or your healthcare professional if needed. Remember, don’t use heat on a joint that’s red, hot or swollen.

Some people with axial SpA find cold more effective than heat for mild to moderate pain. Cold is also more helpful if a joint is hot and swollen. Use a bag of frozen peas or an ice pack, wrapped in a damp towel, for a maximum of 15 minutes. Check the skin frequently to make sure there’s no risk of ice burn and never apply ice directly to the skin. There are lots of topical cold sprays and gels available which may also be useful.

TENS machines are small battery-powered devices that use a mild electrical current to ease moderate to severe pain. There are lots of different types and brands available. Follow the link below to learn more about how to get started with TENS machines if you haven’t used one before. Make sure to speak to a healthcare professional before using a TENS machine to ensure it’s safe for you.

Gentle activity can reduce joint stiffness, stretch tight muscles and get endorphins, the ‘happy hormones’, going. This can all have a positive impact on your pain levels, mood, and ultimately how you manage your axial SpA long-term. Speak to your physiotherapist about what exercises are best for you or visit our exercise playlist linked below. We have lots of different taster sessions, so you can find what works for you.

When you live with persistent pain, it can feel stressful and it can really impact your mood. Normal daily stresses cause our body to release hormones such as cortisol. This can increase our pain and inflammation levels, or make us more sensitive to pain. This is why relaxation and distraction techniques are an important tool to cope with stress and reduce your pain.

A distraction technique is anything that occupies your brain to help you overcome the pain sensations you’re experiencing. These can be useful to do while waiting for pain relieving techniques, like heat pads, to take effect, or when you’re trying to sleep.

Finally, when you’re living with persistent pain, support from other people and meeting people who can relate can be really valuable. Join one of our online meetings to meet other people with axial SpA. You can also find your local NASS branch by following the link below.

What do you find helpful for managing your pain? Share your suggestions in the comments below.

Understand how medication can help relieve pain

Record your medication on our Your SpAce medication resource sheet. This will help you feel prepared for painful flares and understand what you can do to help. Download a copy to print.

Download a copy to complete on your computer. Simply download the document, open with your usual PDF reader, click on the text boxes to complete, and then save a copy.

Click to view video transcript

In this video, we’ll give you an overview of medications used for different types of pain. It’s important to discuss your pain medication with your healthcare team to ensure you create a plan that works for you. Use the resource sheet available below with your doctor, pharmacist or other healthcare professional to record the different medications you’re prescribed and understand when they’re helpful.

Axial SpA is an inflammatory condition. The main aim of medication is to reduce inflammation and the activity of the condition. This, in turn, reduces the pain, fatigue and other symptoms you experience.
Anti-inflammatories are usually the first step in treatment. These include ibuprofen, naproxen, arcoxia, and celebrex. These are sometimes called NSAIDs. If you’re prescribed these, it’s important to check with your doctor how frequently you should take these medications and how long for.

If you feel that your condition isn’t very well controlled and you’re experiencing lots of pain or flare ups, it’s essential you discuss this with your rheumatologist or another member of the rheumatology team. Your doctor may consider biologic or other advanced therapies. These medications work to reduce or stop your body creating the inflammation that affects your joints and other areas of the body.

If you’re not under the care of a rheumatologist, ask your GP to refer you to one. A rheumatology team can monitor your condition and is able to prescribe these medications if you need them. There are various pain medications that can be used alongside anti-inflammatories and other therapies. For example, paracetamol, codeine or co-codamol. These medications don’t treat the underlying cause of pain, but can make things more comfortable. There are other medications that can be helpful when you’re experiencing persistent pain, so do speak to your doctor about this.

As the pain reduces, you can be more active. This is important to manage your axial SpA long-term. Activity has an anti-inflammatory effect, is good for your wellbeing and helps your body produce endorphins, the happy hormones.

For more information about different medications, including biologic therapies, follow the links below. Medication can be helpful, but it’s only part of the picture. It can also take time or some trial and error to find medications that work for you. If you haven’t already, watch our non-medication pain relief video to understand all the techniques you can build into your life to reduce and cope with your pain.

Wendy describes how she manages her pain

Click to view video transcript

When I was younger it was more peripheral joints, and I still get peripheral joint pain, but now it has moved to my spine. So, there’s quite a lot of fusion going on. My neck, my thoracic area, my lumbar spine. Every day there’s something and every day is different. So you wake up one day and your neck is really stiff and you can wake up the next day and you’ve suddenly got a limp because you can’t walk, it’s in your knee or hip. So to manage my pain, obviously I’m no a lot of medication. And you sort of play around with your medication a bit, depending on the day, depending on the amount of pain you’re in that day. I do find relaxation’s really good. I do meditations, I listen to YouTube guided meditations. They’re really helpful. And obviously pain meds, they do help, but it’s more about the emotional thing as well, about how you deal with your pain emotionally.

Having dogs, they really keep you going. Especially when you’re feeling rubbish and you’ve got your dog. Unconditional love, and it’s just relaxing, and you can stroke them. And when you’re up for going for a walk, ooh, there, she knows. You know that word. You have to take them out, so sometimes it keeps you going. So, I find I wouldn’t be without my pets, they really do help. Yeah, they’re really, they’re very therapeutic.

When you’re having a good phase, you just get on with life and you just think “oh this is really good” and then suddenly you’re hit with a big flare. In my previous life, I was a beautician. I really loved my job, but unfortunately over the last 10, 20 years, doing massage, facials, and things. Obviously it’s a lot of using your hands, and a lot of standing. I was unable to continue and I was really sad, because I really did enjoy it.

So this morning I woke up, did have a really bad day yesterday. I didn’t get dressed, I had a PJ day. So today I got up, and obviously I knew I was coming to film this, so I put my makeup on. It’s like my war paint. Like what I used to do to people when I was a beautician, you know? Make them feel good. Give them a facial, do their nails. You make people feel good. So when I get up and I know I’ve got to do something, I put on my war paint and I feel better. And I’m still in the pain, and I’m still really stiff, and I’m still really in pain, but to people, they look at you and they wouldn’t know that anything was wrong.

So I think it’s really really good to try and get together with people that also have AS and NASS is a really good organisation for getting people together, finding you a local branch, putting on great educational sessions. So I really urge anybody, especially if you’re newly diagnosed, contact NASS, get in touch with a local group, go on Facebook, join whatever meetings you can, it’s really good to talk to other people with AS.


Managing different areas of pain

Visit our My AS, My Life webpage for more detailed advice on managing pain, including: TENS machines; massage; acupuncture; and easing pain in different areas of the body.

Find support from other people with axial SpA: Your SpAce meetups

Connect with others by attending one of our free online meetups. They’re relaxed and friendly. An opportunity to meet other people with axial SpA, get support and share experiences.

Upcoming meetups:

You can view all upcoming meetups and book your place.

If you’re new to Zoom, download our simple guide to Zoom.


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