Here are my top tips and you can check out our Facebook Live on the topic here.

Scheduled surgery?

If you have an operation scheduled, it’s essential to speak to your surgical team in advance about your axial SpA.

It can be useful to speak to your rheumatology team and consider asking:

• Do I need to delay any medication?
• Are there anti-inflammatories or pain relief medications that I can take, if needed?
• What do I need to make the surgeon and anaesthetist aware of before the operation? (This is particularly important if you have fusions in your spine or problems with your jaw)

The surgeon should also be able to give you an estimated time for recovery and when you can resume any immunosuppressant medications you may be taking (such as biologics).

On the day of the surgery, make sure you repeat to all the staff members that you have axial SpA and anything they need to be aware of (for example, you can’t lie flat or you have reduced neck movement). It can be useful to prepare A5 sheets with a few key bullet points of things staff need to be aware of. You can hand these to staff members pre- and post-surgery as a clear reminder.

Anaesthetics

Before your surgery you will have an appointment with your anaesthetist to discuss the surgery, your general health and any conditions that may affect the type of anaesthetic they use. It’s essential to inform them of your axial SpA, especially if you have any spinal fusions or jaw problems. Let your anaesthetist and surgeon know in advance if you can’t lie flat on your back.

If you will be having a nerve block or epidural, they may wish to do an MRI beforehand to ensure there are no fusions in the area.

If you will be having a general anaesthetic, the anaesthetist needs to check how much movement you have in your neck and jaw. If you have reduced movement in these areas, there is usually a way to work around this, but it’s important that the team know in advance.

Getting moving post-surgery

If your joints stiffen up quickly, it’s helpful to advise your surgical team and any ward staff in advance so that they can ensure they help you get up and moving as early as possible.

Your physiotherapist is the best person to ask for exercises you can do safely to help manage your axial SpA while recovering. For example, if you can’t put weight on your legs for a period of time, they may give you a series of seated exercises to reduce any stiffness or pain in your spine. Breathing exercises can be very helpful for encouraging movement in your ribs without having to stand or move too much.

Speak to your surgeon about what movements you can do following surgery and what you should avoid.

Injury or illness?

It can be more difficult to make changes following an injury or while you’re ill, compared to a scheduled operation, because generally these happen suddenly. Again, do speak to your rheumatology team or GP for advice on medication, exercises and any adaptations you may need in your home.

Around the home

Look around your home and make any adaptations that could be helpful. For example, if bending is difficult then ask someone to move essential items to a surface at waist height. Your doctor may be able to make a referral for someone to come into your home and advise on any changes that would be helpful. In some cases, they can also make the changes for you, such as adding handrails or loaning equipment.

There are lots of websites with equipment that make activities of your day-to-day life easier. For example, for washing you can use a shower stool and a long-handled sponge to reduce bending and to help manage fatigue.

Reducing joint pain and stiffness

One of the best things you can do is to get up and walk around for about five minutes in every hour. Little and often can go a long way to reducing joint pain and stiffness.

Similarly with exercises, do small amounts of exercise frequently is more achievable, but very effective. For example, you can do stretches in bed, while waiting for the kettle to boil or while cleaning your teeth.

If you’re spending more time sitting than usual, investing in a good pressure-relieving cushion can really reduce discomfort in your low back and sitting bones. Neck pillows can provide some support and comfort while sitting for longer periods.

Can you modify where you’re sleeping or add cushions to help you get a good night’s sleep? If you’re experiencing more pain at night, your doctor may advise on medication types or different timings that could help.

Don’t forget all the usual things that help you manage a flare up, such as heat pads, gentle massage, TENS machines and distraction techniques. It can be helpful to write down what usually helps you and store all the things you need in one place, creating a ‘flare toolkit’. When you’re in need, you know exactly where to go. It’s important to include contact details for your rheumatology team, so you can easily contact them for advice if you’re struggling.

Look after your emotional wellbeing

Speak to family and friends about what they can do to help support you during this time. Not only with tasks around the home, but also being able to speak with someone about how you’re feeling and get emotional support. It can be very difficult dealing with an injury or illness on top of axial SpA, so reach out for help if you need it. You can read more about your emotional wellbeing on My AS My Life and our emotional wellbeing page.

More information

For more information about managing your axial SpA, head to My AS My Life where we cover lots of topic including managing pain, exercise sessions, emotional wellbeing, and lots more.

Zoë Clark is our Self-Management Programme Officer and leads My AS, My Life and our Self-Management Programme. Find out about our upcoming Facebook Live sessions.

The post Managing your axial SpA flares when you’re less active appeared first on ASone.

Safety

If you’re new to massage, check with your doctor or physiotherapist if this would be suitable for you. With axial SpA (AS), bones and muscles can be tender to touch, especially around the spine and ribs. Do not massage directly over bones. Some people do find massage triggers a flare; so always start gently with any new technique to ensure it’s comfortable.

Effects of massage

Massage can be very relaxing and therefore help with symptoms of stress and anxiety. It can also distract from pain during a flare when applied in the correct way.

Although the effects are not long lasting, massage can soothe muscles and ease joint stiffness.

Making massage more effective

To make the effect of massage last longer, you can use heat before, during or afterwards. Apply a heat pad or hot water bottle (wrapped in a towel) for ten minutes. Using stretches can also make the effects last longer.

Massage at home

Many people with axial SpA (AS) find it more comfortable and beneficial to do small amounts of massage more frequently, so these at home massage techniques can be very useful.

Massage should be applied to muscles, never massage over bones. If you’re unsure which areas to massage, ask your doctor or physiotherapist. Start with a very gentle pressure for a small amount of time and then see how you feel 24-48 hours afterwards. This allows you to see how your body responds and gradually increase the pressure depending on how you feel.

Areas it can be comfortable to massage include:

• The muscles that run from the side of your neck along into your shoulder (do not massage the front of the neck)
• The muscles either side of your spine
• Front of the shoulders into the chest (pectoral muscles)
• Arm and forearm muscles
• Palms of the hands
• Gluteal muscles of the hips and buttocks (avoid massaging directly over the bones of the pelvis and hip)
• Thigh and calf muscles
• Soles of the feet

Hands: You can use your fingertips or the heel of your hand to apply a very gentle pressure in small circular movements over the muscles.

Tennis ball (or spikey massage ball): You can hold a ball in your hand and place a downward pressure onto a muscle, then roll the ball in circular movements to massage the area.

To make this stronger, you can stand against a wall and lean onto the ball (or lie on the ball on the floor) to increase the pressure. Take care not to apply pressure in one area for too long.

Foam rollers: There are many foam rollers on the market, but the technique and effect is similar for each. Standing or lying, lean onto the roller and move your body to change the area of pressure.

Machines: Hand held massage machines can be helpful, but with axial SpA (AS) you must be cautious to not apply too much pressure.

Seeing a massage therapist

If you want to go to a massage therapist, firstly check with your doctor to ensure this is suitable for you. When finding a massage therapist, check that they are qualified and insured. They should also be familiar with axial SpA (AS) and you can explain the specific effects the condition has on you.

Depending on the type of massage and area being massaged, some massage therapists will ask you to undress partially. Make sure you’re comfortable and the therapist should use towels to cover you and keep you warm.

It can be helpful to try different positions lying or sitting to ensure you’re comfortable. Your massage therapist can use pillows to keep you comfortable, for example under your hips when lying on your front to reduce pressure on your low back.

Discuss the different types of pressure they can use and also start gently, then build up gradually over time. See how you feel 24-48 hours afterwards, because sometimes the effects of massage are delayed.

Summary

• Massage can be very helpful for relaxation, muscle tension and to make stretches more effective
• There are lots of ways you can massage at home
• It’s important to discuss your axial SpA (AS) with your massage therapist

Zoë Clark is an osteopath living with AS herself and has joined the NASS Helpline team to help with the unprecedented demand over COVID-19. You may have seen her blog posts previously written for NASS and she spoke at the latest parliamentary meeting in January and appeared on Channel 5 News. She’s joining the NASS team to help you keep active and feeling well during this difficult time of isolation.

Zoë is available on the Helpline each day, so if you’d like to have a chat then please get in touch and we can arrange a call. She’ll also be sharing some of her top tips and answering any common questions, so please let us know in the comments if there’s any particular advice you’d like.

The Helpline is open 1000-1600 Monday to Friday on 020 8741 1515 or you can email zoe@nass.co.uk

The post Massage for axial SpA (AS) appeared first on ASone.

When to see your doctor

If you have new severe pain that does not improve with normal self care advice, please consult your doctor for an assessment and specific advice. Some of the conditions discussed here are more common when your general inflammation levels are higher and axial SpA (AS) is more active. If you feel your condition is not well managed, consult with your rheumatology team to address this.

Heel enthesitis

Axial SpA (AS) can cause inflammation where the tendons of muscles insert into a bone. A common area is the back of the heel, where the Achilles tendon from the calf muscles inserts into the heel bone. Inflammation in this area can be very painful and it can happen in both sides at the same time. Due to the severity of the pain, it can affect how you can walk or move.

Symptoms of heel enthesitis include:

• Pain at the back of the heel
• Pain worse with rest and better with movement
• Tenderness to press the back of the heel (often making shoes uncomfortable)
• Redness, heat or swelling at the back of the heel
• Pain aggravated when walking or doing other weight bearing activity for longer periods

Self-care for heel enthesitis

Ice

Using ice locally can help relieve the pain in your heels. Wrap an ice pack or bag of frozen peas in a towel and place locally on the area for 5-10 minutes. This can repeated every hour if needed.

Movement

While movement can be painful with heel enthesitis, it will help to ease the local inflammation. When resting, do gentle circular movements with your feet/ankles to keep the area moving while not stressing the tendon.

Make mornings easier

Mornings are usually the most painful time, so perform the gentle morning exercises I describe below to ease symptoms before getting out of bed and putting weight on your feet and ankles.

Calf stretches

Tight calf muscles can aggravate heel enthesitis. Try a gentle calf stretch three times per day, but stop if it aggravates your symptoms:

• Sit in a chair with your knee relaxed in a slightly bent position.
• Bring your toes up towards you, until your feel a gentle stretch at the back of your calf.
• Hold the stretch for 3-5 breaths and then relax.
• Repeat this 2 times each side.

To make this stretch stronger, you can use a rolled towel or dressing gown strap under the ball of your foot and held in both hands. Pulling on the towel/strap to bring your toes toward you while keeping your ankle relaxed will provide a stronger stretch. Stop if this causes any pain during or afterwards.

If your symptoms don’t improve with self-care techniques, consult with a podiatrist to assess if a heel lift is needed in your shoe for a period of time. Raising the heel slightly takes the pressure off the tendon, giving comfort and allowing it to recover. Podiatrists are also able to assess how your feet and ankles move, giving tailored advice on footwear and orthotics.

For particularly stubborn enthesites, local steroid injections may be recommended. However, this is only after less invasive options have been tried and it depends on your individual circumstances.

If you experience repeated episodes of heel enthesitis, speak to your rheumatology team to assess if your inflammation levels are well controlled.

Plantar fasciitis

The plantar fascia is a band of connective tissue that supports the sole of the foot. Plantar fasciitis occurs when there’s inflammation of the fascia as it connects to the underside of the heel bone. It’s commonly known as “Policeman’s Heel” and the symptoms include:

• Pain underneath the heel
• Pain worse with rest and better with movement
• Aggravated by longer periods of weight bearing activity

The severity of plantar fasciitis can vary. For severe episodes, it may be worth consulting with a podiatrist for specialised advice.

Self-care for plantar fasciitis

Calf stretches

Try the gentle calf stretch described above to reduce calf tightness.

Plantar fascia stretches and massage

Gently stretching and massaging the plantar fascia up to 3 times a day can provide some relief:

• Sit comfortably and place a tennis ball or spikey massage ball on the floor.
• Place the base of your toes on top of the ball and apply a gentle downward pressure (it should be comfortable).
• Maintaining this gentle downward pressure, roll your foot forwards and backwards over the ball to massage into the sole of your foot.
• You can turn your ankle in and out to reach the inner arch and the outer part of your foot.
• Repeat for around 30-60 seconds if comfortable.

Movement

Walking while wearing supportive footwear is recommended with plantar fasciitis, but gradually build up the distance over a period of time to avoid irritating the area.

Ice

Ice can relieve the pain, allowing you to be more active. Either use the application described above (for heel enthesitis) or half fill a bottle of water and freeze:

• Place the bottle of ice on the floor and place the ball of your foot on top (wear socks to protect your skin).
• Apply a gentle downward pressure, which should be comfortable.
• Maintaining the downward pressure, roll your foot forwards and backwards over the ice to massage and numb the plantar fascia.
• Do this for up to 5 minutes.
• Repeat every hour if needed.

Footwear

Footwear should be well fitting with a thick, supportive sole. Lace shoes can be more comfortable for longer periods. If walking on rough ground, walking boots to support the ankle are helpful. A podiatrist is well trained to give specific advice on shoes.

Standing

If your job requires you to stand for a long period of time, it may be worth investing in a cushioned mat to reduce the pressure on your feet. Regular breaks to rest are also very important.

Toe clawing

Toe clawing can occur for people with axial SpA (AS) and is commonly an adaptation the body makes if posture changes occur, causing the body to lean forward. Cramps in the muscles of the feet and legs are common when toe clawing develops, due to changes in the way the muscles are being used.

Gentle exercises and stretches can be helpful to reduce the discomfort. Massaging into the sole of the foot can ease discomfort (see above for instructions using a tennis ball or spikey massage ball). If exercises and massage do not help, consult with your GP or rheumatologist to assess whether medication or specialist referral may be helpful.

Advice and support

As described in this post, there are a lot of healthcare practitioners who can advise on foot and ankle pain. If you need any tailored advice, consult your local podiatrist, physiotherapist, osteopath or chiropractor.

Exercises

You can watch our morning exercises and seated exercises for feet and ankles. Start the exercises gradually and build up over time. As always, stop the exercises if you feel any pain during or afterwards.

Summary

Foot and ankle pain in axial SpA (AS) can be caused by a number of different conditions, but there is lots you can do to help manage the symptoms and potentially speed up recovery. For Zoë’s vlog on feet and axial SpA (AS), please click here.

Zoë Clark is an osteopath living with axial SpA herself and has joined the NASS Helpline team to help with the unprecedented demand over COVID-19. You may have seen her blog posts previously written for NASS and she spoke at the latest parliamentary meeting in January and appeared on Channel 5 News. She’s joining the NASS team to help you keep active and feeling well during this difficult time of isolation.

Zoë is available on the Helpline each day, so if you’d like to have a chat then please get in touch and we can arrange a call. She’ll also be sharing some of her top tips and answering any common questions, so please let us know in the comments if there’s any particular advice you’d like.

The Helpline is open 1000-1600 Monday to Friday on 020 8741 1515 or you can email zoe@nass.co.uk

The post Feet and axial SpA (AS) appeared first on ASone.

Firstly, it’s really important to note that sometimes night pain can be caused by other things and it’s important to speak to your doctor if you’re experiencing new or severe night pain to make sure the cause is identified. If it is caused by axial SpA, then hopefully my advice below will help.

So, what causes night pain in axial SpA?

Back pain at night is a big indicator to healthcare professionals that someone may be experiencing the inflammatory back pain that occurs with axial SpA. This is because when you’re not moving as much during the night, the inflammation can cause stiffness and pain in the area.

It’s important to ensure that your axial SpA is under control. Sometimes tracking your symptoms using an app (such as AS Symptom Tracker and MySpA: Look in Google Play and Apple Store for both) can be helpful to monitor how you feel over long periods. This gives your rheumatologist a great overview of what’s happened between appointments and also serves as a memory jog for you when you have a long gap between checkups.

What can you do to reduce the likelihood of experiencing night pain?

Keeping your axial SpA well managed can be the best remedy for night pain. Ensure you’re doing lots of exercises to help the range of movement in your spine and hips. Walking or swimming can be excellent for loosening joints, strengthening your muscles and improving your heart health as well. We also have lots of exercises available on our YouTube channel. If you experience fatigue, doing small amounts of exercise throughout the day can be more beneficial, rather than doing lots all in one go.

What’s the best mattress and pillow to use?

It’s difficult advising a particular mattress type, because there are lots of options and everyone prefers a different type. Unfortunately a new mattress isn’t guaranteed to help with back pain due to axial SpA. I would say the most recommended mattress is a medium to firm mattress, with a small memory foam topper. This gives your back the underlying support, but provides cushioning for your shoulders and hips when lying on your side. However, everyone is different, so stick with what works for you.

Experiment with different types and heights of pillows to find what works best for you. The most common ideal position is to have your neck and head ‘neutral’, so when you’re lying on your back or side, your neck is in the same alignment as when you’re standing. Whole body pillows can provide good support for your neck and act as a cushion between your knees to help the position of your low back.

To give added support to your neck, you can use a rolled up hand towel inside the pillowcase along the long edge of the pillow. When you’re lying on your back or side, the towel will give added support to your neck and then allow your head to only lie on the pillow. Again, it’s worth experimenting and seeing what works for you.

What can you do to manage the pain?

Heat locally before sleep can be helpful at soothing the area where you normally experience pain. You can use a hot water bottle or microwavable wheat bag (wrapped in a towel) or an electric blanket. To avoid burns, make sure you don’t fall asleep with the heat applied. During our Facebook Live, Rebecca had a great suggestion of placing your pillow under the duvet when you first switch your electric blanket on; when you get into bed, your pillow is pre-warmed to help with neck discomfort.

Changing the timing of your painkillers and anti-inflammatories can make them more effective for night pain and morning stiffness. Speak to your doctor to see if it’s suitable for you to take medication about 30-minutes before bed to ease night symptoms. There are also lots of different types of medications, including long acting anti-inflammatories, so it’s worth speaking to your doctor or pharmacist to explore options.

Some people report using sleeping medication or herbal remedies. Speak to your doctor before taking these, particularly if you have other conditions or you’re taking medication for any reason. Sleeping tablets can sometimes lead to drowsiness in the morning, can lose effectiveness over time and can become addictive. It’s highly recommended to use other tools to control your axial SpA and improve your sleep, rather than medication, but if you’re considering this then speak to your doctor.

Another cause of poor sleep?

Stress can reduce the quality of your sleep and make it difficult to fall asleep. Helping to reduce your stress will have a positive effect, so try to speak to someone about how you’re feeling. Breathing exercises can be a really positive way to promote relaxation before falling asleep. Why not try some of the breathing exercises I’ve shared before?

What is good sleep hygiene and how can I practice it?

Good sleep hygiene involves different techniques to promote good sleep. It’s not specific to axial SpA, but the tips can be really beneficial. The most important technique is to ensure you keep the same sleep/wake cycle by getting up at the same time each day and going to bed at the same time. During the day, try to get out in the daylight to help your body with the hormones it produces during the day part of the sleep/wake cycle.

To help your body switch into the sleep stage of the cycle, try dimming the lights in the evening and avoiding screens (TVs, phones, games) for at least an hour before you plan to go to bed. Keep your room dark and cool, with few or no distractions.

Avoid caffeine or exercise just before bed. Sometimes gentle stretches or yoga nidra can help you relax just before sleep, but avoid anything that gets your heart rate up (save that for the daytime). A hot bath/shower, warm drink and some relaxing music can also help you switch off before bed.

If you have any tips that have helped you with night pain, please share them in the comments to help others.

Zoë Clark is an osteopath living with axial SpA herself and has joined the NASS Helpline team to help with the unprecedented demand over COVID-19. You may have seen her blog posts previously written for NASS and she spoke at the latest parliamentary meeting in January and appeared on Channel 5 News. She’s joining the NASS team to help you keep active and feeling well during this difficult time of isolation. The full video of her Facebook Live session on night pain is available here.

Zoë is available on the Helpline each day, so if you’d like to have a chat then please get in touch and we can arrange a call. She’ll also be sharing some of her top tips and answering any common questions, so please let us know in the comments if there’s any particular advice you’d like.

The Helpline is open 1000-1600 Monday to Friday on 020 8741 1515 or you can email zoe@nass.co.uk 

The post Night pain due to axial SpA (AS) appeared first on ASone.

The best posture is the next posture

As an osteopath, patients often ask me what the best posture is when they’re working and they’re often surprised when I say “there is no best posture!” If you stay in any position for a long period of time, it’s not going to feel good… so, the best posture is the next posture! I would recommend setting up your workstation so it’s adaptable to lots of different positions.

If you’re working from a laptop, use a plug in keyboard and mouse so you can adjust the height of your screen depending on your location and seating position. If you don’t have an adjustable sit/stand desk, you can simply use an empty box or piles of books.

Set a timer on your phone so every hour you switch your position using different seat positions.

Seating options

Ideally you will have a few different seating options that you can change throughout the day. Firstly, a standard office chair with good low back support and with arms lower than your desk so you can pull the chair close enough to where you’re working. You can also use a small cushion behind your low back or under your hips to provide added support.

A Swiss ball can be really comfortable for short periods, because it allows you to move about and stretch while you’re working. If you’re like me and subconsciously bounce about when you’re sat on one, you may want to avoid it for video calls so your colleagues don’t get motion sickness!

Meditation seats can be really versatile. If you don’t experience knee pain, an assisted kneeling seat at a coffee table can provide a good change of scenery while stretching different areas of your legs and back.

Standing is also a great option and, like the Swiss ball, allows you to move around and stretch while working. You can also march on the spot or do a few squat movements to work on your muscle strength.

Regular breaks

No matter how good your desk position is, the best thing for axial SpA and for your concentration is to take regular breaks. Every 50-60 minutes (set a timer!) get up and move away from your desk. Look out of the window at something in the distance, take a few deep breaths and take a moment to stretch. This will help reduce any stiffness you experience, but also help you stay focused throughout the day without feeling drained.

Increase your usual daily stretches

Hopefully you do some stretches every day for your axial SpA. To counter out the reduced activity if you’ve recently started working from home, I recommend increasing your usual stretches. There are lots of moments throughout the day that we don’t realise give us an opportunity to exercise or stretch. For example:

• While cleaning teeth
• While waiting for the kettle to boil
• While talking on the phone
• While waiting for dinner to cook in the oven

Keep a post-it note next to the bathroom mirror, the kettle, the phone and the oven as a visual reminder to do some stretches.

Exercise at the desk

When you’re sat at the desk, there are some simple movements you can do to stretch out your shoulders, back and hips regularly throughout the day. As with all new exercises, start gently and gradually build up. Stop any exercise if it causes pain or discomfort.

Neck movements:

1. Sit looking forward and gently tilt your head over to the left side (taking your left ear towards your left shoulder). Then slowly return to the centre. Repeat to the right.
2. Look to the left as far as comfortable, then return to the centre. Repeat to the right.
3. Slowly look down towards the floor as far as comfortable, then return to the centre.
4. Gently look up towards the ceiling, then return to the centre.

Shoulder movements:

1. While inhaling, shrug both your shoulders up towards your ears. As you exhale, relax your shoulders down. Repeat two more times.
2. Roll your shoulders forwards in circles three times, then repeat in the other direction three times.
3. While sitting or standing, gently stretch one arm out to the side and behind you to feel a stretch at the front of your shoulder and chest. Repeat on the opposite side. (To make this stronger, you can do both arms at the same time, but build up to this gradually).

Back movements (while sitting or standing):

1. Gently tilt to the left and reach your left hand down to the floor. Return to the centre before reaching the right hand down to the floor on your right side.
2. Gently look to the left, then slowly twist your body around to follow the movement as far as comfortable. Return to the centre before repeating to the right side.
3. As you exhale, look down towards the floor and gently slump your back. Inhale as you return to sitting comfortably.
4. Gently look up towards the ceiling and slowly arch your back to bring your chest bone (sternum) towards the ceiling. Relax back to sitting comfortably. (Stop this exercise if the stretch feels too strong or if you feel dizzy).

Hip movements (while seated):

1. With your feet on the ground, gently lift one heel up and then the other. Repeat this is a pumping movement.
2. Starting with your feet on the ground, gently relax one leg to let your knee roll outwards (so your hip is rotating), then return to the centre. Repeat on the opposite side.

Get out for a walk, cycle or jog

Whenever the weather permits, make the most of the outside time we’re currently allowed. It can be easy to get into a working rhythm and forget to spend time outside, but it’s really beneficial for your physical and mental health. Doing exercise outside allows more opportunity to raise your heart rate and get some important cardiovascular exercise.

If you can’t go outside due to poor weather, marching on the spot, brisk walking up/down a hallway or even doing star jumps can be great cardio!

Get an accountability buddy

If, like me, you’re much more likely to stick to something when you know someone is there to give you a nudge, ask someone to be your accountability buddy. It’s likely that you know someone else working from home who would like some encouragement and the occasional reminder, so agree to check in with each other every day to make sure you’re keeping to your plan to move more.

I hope these top tips have been helpful. If you have any questions or would like some more tailored advice, please get in touch. You can also find my vlog on this topic here.

Zoë Clark is an osteopath living with axial SpA herself and has joined the NASS Helpline team to help with the unprecedented demand over COVID-19. You may have seen her blog posts previously written for NASS and she also spoke at the latest parliamentary meeting in January and appeared on Channel 5 News. She’s joining the NASS team to help you keep active and feeling well during this difficult time of isolation.

Zoë is available on the Helpline each day, so if you’d like to have a chat then please get in touch and we can arrange a call. She’ll also be sharing some of her top tips and answering any common questions, so please let us know in the comments if there’s any particular advice you’d like.

The Helpline is open 1000-1600 Monday to Friday on 020 8741 1515 or you can email zoe@nass.co.uk

The post Working from home with Axial Spondyloarthritis (AS) appeared first on ASone.

Having joined NASS in August with responsibility for ASone, I didn’t feel like I had a strong enough understanding of what it’s like for a young person to live with the symptoms of axial SpA (AS) and what their treatment is like. This is why I went to a young person’s rheumatology clinic in Sheffield for what turned out to be a powerful and interesting morning.  

The clinic looks after patients with a range of rheumatological diagnoses and is held at a sports centre just outside the city centre. This helps the young adults and teenagers who attend feel more comfortable than they would do in a hospital and encourages them to be more active with their conditions. The team running the service, led by the fantastic Consultant Rheumatologist Dr Lisa Dunkley, are one of the six from across the UK to be joining the Aspiring to Excellence programme. The programme is designed to encourage and recognise service improvement in axial SpA (AS) care. 

From my initial conversation with Dr Dunkley, it was immediately obvious why this team are so highly regarded. They try to look at how a patient’s illness is affecting everything in their life, including factors like mental and sexual health that are so important to young people. They invite a parent or carer to attend the clinic, but also ask them to leave the room partway through the consultation. This is to give the patient an opportunity to disclose more personal information to a medical expert that they might not otherwise feel comfortable discussing with a family member.   

The first patient I met had just started her first year of university and had been diagnosed with juvenile enthesitis-related arthritis (ERA), which is often closely related to axial SpA (AS). As if studying with more than 30 contact hours a week wasn’t enough, she was living with a lot of symptoms that patients will be all too familiar with. Getting enough sleep is so important (particularly for students) and this was a frequent problem for her.  

Following a letter to the university’s pastoral care team, changes have been made to make her life easier. This includes access to a taxi if required, extra time in exams and organised sessions with a trained councillor. Though it was a difficult consultation, Dr Dunkley emphasized that the patient was not alone and that people were there for her.

It was poignant session and it was great to see the level of care on offer, as well a lot of positive outcomes. 

It became clear to me throughout the morning that I spent at the clinic that there are numerous factors that make it such a fantastic and important service:  

• It is aimed specifically at patients who sit between paediatric and adult services – this age group have different and unique priorities 
• The team is dedicated and focused, giving patients access to expertise as well as familiarity 
• There are two link nurses to the paediatric and adult services, putting patients more at ease as they are looked after by staff they know and are comfortable with 
• Patients are asked about wide variety of issues such as their family and school life, which helps to secure the best treatment possible 

Another patient was being seen for the first time after years of steadily worsening back pain. He was studying for A-levels and had applied for university but was now struggling to study consistently and had already given up on several sports. This change in lifestyle at such a young age was clearly something that was difficult to adjust to. With treatment it was hoped that some of these problems could be alleviated and it is certainly a positive sign that he had now been seen by a rheumatologist. 

Other patients also showed why this service aimed at teenagers is so important as opening up about their symptoms was not something that came easily to them.  

My morning at the clinic was invaluable in showing the specific difficulties of living with the symptoms of axial SpA (AS) at such a young age. However, more importantly, it demonstrated that there is fantastic support and facilities like this run by amazing and caring staff like Dr Dunkley’s team. As with a lot of the stories from ASone, it shows that hope and positivity can always be found. For a list of paediatric rheumatology centres you can click this link. 

The post Inside a young adult rheumatology clinic appeared first on ASone.

I had great initial care after being diagnosed as I was under private healthcare. Now I love the NHS and I love working for it but I had what I now know to be glaringly obvious symptoms of AS and I saw 3 different orthopaedic surgeons, 2 rheumatologists and countless other healthcare professionals in the 13 years and none of them managed to piece the seemingly obvious puzzle together, until I went private and a week later had my diagnosis. Part of me feels this is because of my gender as in university even today you are taught that AS is almost always found in men. Then when I was offered Anti-TNF I was told I had to go to the NHS.

I was referred to one hospital that shall remain nameless, in the 2 years I was under their care I was “forgotten in the system” when I was told I needed to change from humira to Enbrel and went 4 months with no medication. When I was flaring I had no access to my rheumatological nurse as they never answered the phone or rang me back and when trying to discuss my peripheral symptoms was told “We are only interested in your spinal pain as AS only affects the spine” by the head of the department.

Now there are countless studies out there. One promoted by NASS that conclude women are affected by a higher disease burden and are more likely to have peripheral involvement. As I progressed through my degree I began to realise this is not the sort of service I should be putting up with so I put in a formal complaint to PALs and changed hospitals and it was honestly the best thing I ever did. It was hard to believe that 10 miles “down the road” I was receiving such different care. I felt listened to and more importantly heard and believed which made me feel empowered over my care, and that there was light at the end of the tunnel. It was this feeling that I knew I needed to give my future chronic pain and rheumatological patients.

As a qualified physiotherapist I never let any patient leave my cubicle until they knew I understood and I am happy to advocate for them and empower them to take charge of their health. The unfortunate thing as a healthcare professional is you get a 1 hour lecture on AS and you are taught the “red flag” questions but actually until they’ve met those patients affected or experienced that level of pain and at times unusual symptoms they are usually under prepared to deal with the AS cohort.

But don’t get me wrong there are some amazing healthcare professionals out there but again these are few and far between and usually each trust only has one rheumatology specialist physiotherapist which seems absurd for such a massive cohort of patients and usually leads to long waiting times and plenty of frustration.
One other thing I’ve noticed as a healthcare professional is the massive gap between paediatric and adult services. I was lucky enough to complete a student placement at Great Ormond Street Hospital in the paediatric rheumatology department. Now I feel paediatric services are miles ahead of adults! They have inpatient rheumatology wards where patients flaring are sent to receive intensive treatment, those that are coming off their immunosuppressant drugs for procedures are carefully monitored by the medical team. They have access to specialist rheumatology physiotherapists as inpatients to help keep them moving and reduce their pain during a time they often are off their medication and are not exercising as much as they are unwell or recovering from a procedure.

They have regular check-ups like the adults except in the room are the consultant, the physios, the occupational therapists and the psychologists, holistically treating the patient all together in one room as a team.

This team then meet separately once a week to discuss those more complex patients and plans to help them if they are struggling with pain or day to day activities, they write to those children’s schools advising them on their limitations and ways to help them thrive.

In London alone you have GOSH, the Evelina and Stanmore who provide a 2 week intensive rehabilitation course for those children newly diagnosed or struggling to cope, the adult services have Bath and Stanmore in the whole of the country… I’ve never come across an inpatient adult rheumatology ward, we as adults are expected to try and see our overbooked rheumatologists as outpatients and still cope living at home, many of whom live alone and if we are admitted we are admitted to wards who have no idea how to manage our condition. Equally I’ve come across so many arthritis patients struggling off their meds, had surgery and that has brought on a flare. I enjoy treating these patients and try to pick them up on whatever caseload I am managing at the time, so much so I’m hoping to highlight the gap in my trust for inpatient rheumatology physiotherapists.

And equally I don’t think I’ve ever experienced a multidisciplinary meeting as patient or a professional for rheumatology patients, it’s a case of seeing your rheumatologist once every 3-6-12 months and the rheumatology nurse in-between, and if needed you can be referred to a rheumatology physiotherapist but they have a waiting list of weeks and by that point your flare is most probably over.

I really feel we are at a point where not only we should be highlighting the amount of time it takes to get patients diagnosed, but with the NASS lead Every Patient, Every Time campaign, we should be highlighting a national standard of treatment for patients from borough to borough and from paediatric to adult services because at the end of the day, if we as patients are expected to self-manage and champion our own care of our long term condition then we should have access to the same standard of professional and care wherever we are in the country.

Steph is a newly qualified physiotherapist that happens to have ankylosing spondylitis and blogs about it.. a lot! Find her on Instagram, or visit her Blog.

The post An insider view on services available for ankylosing spondylitis patients appeared first on ASone.

The implementation of NICE guidelines and the publication of quality standards were two huge landmarks for axial spondyloarthritis (axial SpA) in the last two years, however the NASS teamdid not stop there and  stipulated that more had to be done to ensure that every patient every time receives timely diagnosis and effective care. NASS helped establish an all party parliamentary group (APPG) to review quality of care provided by the hospitals, ultimately ensuring NICE quality standards and guidelines are being effectively implemented.

This is a huge landmark for all involved with axial SpA, and hopefully one step closer to reducing the average diagnosis time of 8.5yrs.

My diagnosis manifested when I was 19. I was in Australia studying as part of an exchange programme at University. I had acute symptoms which severely affected my ability to walk. This was concerning to me but with no past medical history I was positive it was nothing more than a trapped nerve affecting my mobility and causing my pain; I sought medical attention when my pain worsened to an excruciating level. Due to private healthcare I obtained I was able to receive various scans while my symptoms persisted, consultations with a rheumatologist, a diagnosis of AS and a review to initially start me on NSAIDS all in the space of about a month. Once I returned to the UK and put under NHS healthcare, it took several months for repeat scans and consultations with rheumatologists and although I am extremely appreciative of the NHS I sometimes wonder if I never went to Australia, would I have this diagnosis confirmed, or would I still be going under investigation? At the time I felt devastated to receive a diagnosis of a chronic condition and it took me a long time to accept this diagnosis. However shortly after accepting my condition, I could see clearly the benefits of a prompt diagnosis and I will always feel insanely grateful for this. I am now on treatment to prevent any spinal fusion from occurring and I can happily focus on pursuing my career as a paramedic.

It tears me apart to hear people have had years of unexplained, gruelling pain before a true diagnosis of AS. Due to my positive experience, I feel so strongly that every patient should receive the standard of care I had received hence why I am very passionate and supportive of NASS, being a member of its Council of Management, as well as the new campaign NASS has launched.

As a young adult living with AS I appreciate the difficulties a diagnosis of a chronic condition can bring. In my experience the majority of young people do not have to think twice about their health and can focus on friends, careers and hobbies. This makes it very difficult and uncomfortable to express symptoms such as severe fatigue and pain and reluctance to socialise at times during a flare up. I have personally been in many uncomfortable positions where I feel no one can empathise with me.

An earlier diagnosis of AS is beneficial for all patients; it could alleviate some of the challenges a devastatingly long diagnosis may bring, explain any concerning symptoms, enable access to advice and support and most importantly, ensure access to treatment so that comorbidities and irreversible bone fusion could be prevented.

I particularly feel a quicker diagnosis is crucial with younger patients and could be less psychologically distressing. Younger individuals with AS should also have the opportunity to develop careers, socialise and take up hobbies without the primary focus on a challenging and unconfirmed diagnosis. A quicker diagnosis enables a sooner acceptance, enabling that individual to live their life to the full. Having supportive and understanding friends has benefited my life strongly, and without a diagnosis I would have found it very difficult to communicate my struggles with my peers.

The Launch of this campaign is very exciting for NASS and the establishment of the APPG is very auspicious for the future of axial SpA. Well done to the NASS team for their successful hard work !

You can visit Every Patient Every Time campaign’s page here.

Monika is a NASS Trustee. She’s always been fascinated by medicine and deeply passionate about sports, attending university for two years studying Sports Science before embarking on her professional journey to become a paramedic.

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What an osteopath is and how we’re trained

Osteopaths are trained to diagnose and treat problems with the bones, muscles and joints in the body. We look at the body as a whole and use hands-on treatment to help improve the way it works and relieve the symptoms people experience. In order to become an osteopath, you have to complete a degree course at university and then to practice as an osteopath, you must register with the General Osteopathic Council and carry out continued learning each year.

Osteopaths learn about axial SpA (AS) during their training and are taught to recognise the symptoms and know when someone needs to be referred for investigations. This is important, because although osteopathy is safe and beneficial for people with axial SpA (AS), they need to be formally diagnosed and under the care of a rheumatologist. Osteopaths work with other healthcare practitioners for the benefit of the patient.

What to expect from your first visit

I allow up to an hour for the first visit to allow plenty of time to discuss your symptoms, perform an examination and allow time for treatment if I think it’s appropriate. For patients with axial SpA (AS), I think it’s particularly important to allow plenty of time for discussion. When managing a condition long-term, you need to look at all aspects of your physical and emotional health and formulate a plan to approach it from all angles. It’s also essential that your osteopath understands how your condition affects you and if you have any scan reports, they can provide a good insight and help decide what hands-on treatment could be useful for you.

After the medical history, I then do a physical assessment. This usually requires you to undress down to your underwear, but I always encourage patients to wear shorts if they would be more comfortable and chaperones are always welcome to be present during appointments. It’s important to note that for patients younger than 16 years, we need a parent’s consent and a parent or guardian needs to be present for the whole session.

The physical examination usually involves:

✓ Postural assessment.

✓ Checking the movement of your joints and muscles.

✓ Orthopaedic tests, that doctors use as well.

✓ Neurological tests, such as reflexes, muscle strength and nerve sensations.

✓ General health checks, such as blood pressure and pulse.

Osteopaths won’t just assess the area where you’re experiencing pain for three reasons:

1. Sometimes a problem in one area can cause ‘referred pain’ to another area.
2. Particularly if a problem has been going on for a long time, you can have changes in other areas of the body that would benefit from treatment.
3. It’s possible to have more than one issue at the same time, so it’s important to assess the whole body.

After the assessment, I fully explain everything that I have found and often use drawings and models to demonstrate. I think it’s essential to understand our body and how it works, especially when there’s an injury or problem. If you understand what’s going on and why, this often reduces the anxiety around the pain and you can be actively involved in the recovery process.

If I am concerned about any symptoms needing further investigations or if I feel osteopathic treatment isn’t the best treatment for you, I will always refer on to the correct person. When referring you to your GP I always write a letter to explain what I assessed and why I feel osteopathy isn’t suitable. I strive to give the best possible care for my patients and understand that sometimes that is to refer you on quickly.

I regularly get in contact with patient’s rheumatologists to make them aware that the patient has seen me for treatment. I believe that although osteopaths are more frequently private, rather than NHS, we can still work with healthcare practitioners within the NHS. With something like axial SpA (AS) it’s important to all work as a team for the benefit of the patient.

Consent is a really important part of the assessment and treatment, so I always explain what I’m going to do before I do it, why it is necessary and get your informed consent. Before starting any treatment I always ask for your consent and encourage you to ask as many questions as you wish- there’s no such thing as a silly question!

The hands-on treatment

Osteopaths are well known for their “joint clicking” (manipulations), but I do not recommend these for people with axial SpA (AS). We have lots of other techniques we can use as part of treatment, similar to other manual therapists such as physiotherapists, such as::

✓ Soft tissue massage.

✓ Muscle stretches.

✓ Muscle energy techniques (MET), using your movements to aid muscle stretches.

✓ Gentle joint movements (mobilisations).

✓ Dry needling (medical acupuncture).

✓ Sports tape.

In terms of managing axial SpA (AS) symptoms, osteopathic care is focused on reducing and managing pain, maintaining mobility and improving and maintaining the function of the body’s bones, muscles and joints.

Osteopaths work on the whole body, so although your main symptoms may be in the spine, they aim to improve how the rest of your body is functioning to reduce the strain on the spine. For example, if you have stiffness in your low back it may be difficult to pick things up from the floor. Ensuring your hips and knees are loose and the muscles strong will help you to reach down without straining your back.

Exercises

Exercises following treatment are essential for patients with axial SpA (AS) to integrate the physical changes from osteopathic treatment and maintain improvements in mobility. According to the European League Against Rheumatism (EULAR), “the cornerstone of non-pharmacological treatment of patients with axial SpA is patient education and regular exercise”.

It’s essential to begin gently and then gradually increase the intensity and frequency of exercises, particularly in those who are newly diagnosed, have bone changes, have had previous steroid treatment or who have recently begun biologic therapy.

Every patient is different and needs to be assessed individually, but usually a mixture of muscle stretching and strengthening is helpful. It’s also important to perform balance exercises to reduce the risk of falls, especially in patients with bone changes in the spine or weakening of the bones (osteoporosis).

The benefits of exercise are temporary and need to be regular in order to maintain improvements and benefits. This is one reason why osteopaths work with patients to find an exercise class or routine that they enjoy, find achievable and can fit into their schedule.

I use a programme called ‘Rehab My Patient’ to create tailored exercise plans that are manageable, including photos and videos. Patients have told me it’s really helpful because they can print the exercises out and place them somewhere they will see regularly as a reminder to do the exercises, but they also have them on their phone so they can check to do them correctly when they’re at work or away from home.

Advice your osteopath can offer

My aim is to get you back to the activities you enjoy and free from pain as quickly as possible. I have the luxury of time with patients, so I can give lots of advice about exercise and lifestyle to help you stay well without the need for osteopathic treatment.

However, I feel osteopaths can play an important role in the ‘health team’ of patients with long-term conditions and be on hand when needed (no pun intended with “on hand”!)

Osteopaths may be able to advise you on:

✓ Work posture or desk set up.

✓ Driving posture.

✓ Exercise routines for your back, ribs and other joints.

✓ Teaching abdominal breathing to help rib mobility and respiratory health.

✓ Local exercise classes that may be helpful.

✓ Diet changes that may help lose weight and increase energy.

✓ Relaxation techniques.

✓ Practical tips to help if hobbies are becoming difficult to carry out.

✓ Ways to manage fatigue and pace activities.

✓ Symptoms or complications of AS to look out for (and advice on who to see if they do occur).

Top tips to make the most of your first osteopathy appointment

✓ Take a chaperone (friend or family member) if you will be more comfortable.

✓ Take copies of prescriptions, scans and most recent correspondence from GP and rheumatology teams.

✓ Take a list of symptoms, questions and concerns.

✓ Keep a symptom diary using an AS tracker app or talkingAS.

I hope this has given you an idea of what your first osteopathy session involves. Please do let me know if you have any questions! You can find a local osteopath via the General Osteopathic Council’s website.

Here’s some research evidence for physical therapy and exercises you can receive from your Osteopath to be beneficial for your AS:

https://www.ncbi.nlm.nih.gov/pubmed/19403551

https://www.ncbi.nlm.nih.gov/pubmed/22198694

https://www.ncbi.nlm.nih.gov/pubmed/18388519

https://www.ncbi.nlm.nih.gov/pubmed/27989730

https://link.springer.com/art…/10.1007%2Fs00393-013-1240-8

https://www.ncbi.nlm.nih.gov/pubmed/28860095

https://www.ncbi.nlm.nih.gov/pubmed/21656347

Zoë Clark is an osteopath practicing in Norfolk. Zoë has worked with NASS providing guest blog posts for ASOne and spoke at the inaugural meeting of NASS, the Institute of Osteopathy and the Royal College of Chiropractors at the Norfolk and Norwich University Hospital in February 2018. Zoë has been involved in developing a survey for osteopaths and chiropractors to assess current knowledge of axial SpA (AS) and identify future beneficial projects to help reduce the delay to diagnosis and improve patient care.

You can find Zoë on social media Facebook, Twitter and Instagram.

The post What a person living with axial SpA (ankylosing spondylitis) can expect from their first visit to an osteopath appeared first on ASone.

What’s an AS flare?

In ankylosing spondylitis there can be times when your condition flares up or worsens and times when it seems more manageable or settled.
During a flare you may experience more back pain, stiffness and increased fatigue, but it also can affect other parts of your body, making it difficult to function normally. On top of that, a severe and long-lasting flare can have a devastating effect on your mental and emotional wellbeing.
Many factors can contribute to a flare occurring. This could be being stuck in bed due to a nasty infection or being stressed and busy due to coursework deadlines, but there can also be no particular reason whatsoever.
There’s still a lot we need to learn about AS flares and different people often experience them in different ways, but there are some ways to minimise their impact on your life.

Become an AS expert.

Understanding your condition is an absolute key to managing it more effectively. You will meet many people with AS (especially online) that seem to be specialists in their own condition and have all the answers. It’s worth listening and learning from someone else’s experience but more importantly listen to and learn from your own body. If it’s easier, keep a notebook where you put things that make your AS worse, what helps with symptoms and what are the usual signs of an impending flare.
Try the Talking AS website or AS Symptoms Tracker app if you want to monitor how your AS affects you over a few months. Try to find patterns that eventually lead to flare-ups. You may not always be able to prevent it, but at least you can get ready for when it comes.

Reach out for professional help.

Rheumatology team or GP’s aren’t usually available right away. It may take a long time to get a proper appointment, and if you’re having a flare there’s no certainty you will feel strong enough to turn up.
That’s why it’s important to have a plan in place before an actual flare. Ask your rheumatologist or GP how to safely adjust your usual medications if your AS flares and what is the maximum dose you can take. Ask which other medications you can safely add. Don’t rely on your memory, write down this information and keep in a safe place. Make sure you have this emergency medication ‘kit’ next to your bed, and on you if you’re travelling.
Speak to your physiotherapist and ask for a set of gentle exercises that can help you throughout the flare. Remember, just resting and not moving at all will make things only worse.

Plan your morning.

A morning with a flare is like a hangover. Only if you replace alcohol with being hit by a truck or roughed up by a pack of baboons, and take ‘having a fun night-out before’ out of the equation. If you want to get through this alive, you need a plan.
Start with taking your medication, especially painkillers, as soon as you wake up. Getting out of bed can be really painful, so you want to get that painkillers working quickly.
While you’re waiting for your meds to kick in, the best thing to do to ease the flare symptoms is to breathe. Three good diaphragmatic breaths can help you relax your muscles, reduce stress and feelings of panic, as well as give you a sense of being in control. Slowing down your breathing will help to calm you down and flood your system with oxygen that will help to break the build-up of pain.
Try to move in stages so you don’t pull on muscles that are already in spasm. Use gentle stretches while still lying in bed to warm up your body. Don’t hold your breath while bracing yourself, but instead move on the out breath. Let your body adjust to each position before moving to the next one.

Get your body moving (in moderation).

Avoiding high impact exercise when you’re experiencing or expecting a flare is the first reasonable step to take.
Instead use stretches recommended by your physiotherapist that are suitable for you during a flare. There are also some great stretching exercises in our Back to Action guide that you should be able to do safely. Try to learn them in advance so you know what to do when a flare hits you.
If you’re feeling strong enough try to go outside, maybe for a short walk (great low impact exercise for you!); natural daylight and fresh air can help to lift your mood by releasing endorphins which in turn will help you to cope with the pain.
Listen to your body, and pace yourself with any physical activity during a flare, you don’t want to overdo it and make things worse.
Don’t forget that even when you are in flare it’s safe to attend your local NASS group, especially if there is access to a hydrotherapy pool where you can do some gentle stretches.

Trick your mind.

Don’t underestimate the strong relationship between your mind and body. Pain can heavily affect your mental and emotional state, but conversely you can use your mind to affect the pain (to a certain degree).
Obviously, you’re not a Tibetan monk, able to control your body Shaolin style, but there are ways you can ‘trick’ your mind away from pain. Remember, it’s not about taking the pain away, but about controlling and focusing your mind, calming yourself down and decreasing the feeling of panic that can aggravate the pain. AS feeds on stress.
Try to learn techniques like meditation or mindfulness when you’re not in flare. This will help you to apply them when you’re in a struggle and bring you to the calm and safe space that you’re already familiar with.
Sometimes it’s good to let it go and accept that you have AS, find a way to make it a part of who you are but not what defines you. It’s not a place to grieve (even though it feels right) but to be realistic and constructive. Negative, unhelpful thoughts can only raise unrealistic expectations and throw you down into a spiral of dismay. Positive and constructive thinking, focusing on small but productive steps – ‘what can be done at this very moment to help me’ – can give you back sense of control.
We know it’s easier said than done, but if you cultivate this way of thinking before your AS actually flares, it will be easier to use it when really needed.

Spoil yourself!

Ok, ‘spoiling’ may be a bit of exaggeration considering the situation, but think of the things that make both your AS and life generally easier (and happier!). Don’t think big like travelling the world, but small, like a favourite food, film or music playlist. Things that are easily and quickly accessible. Make a list and pin it up somewhere in your home, preferably keep it with your exercise, medication and ‘mind tricks’ list. This way you have a great toolkit ready to get you through the flare.
Try new and different things. Some people find long, hot baths or showers helpful, some use electric blanket or hot water bottles, some prefer ice packs. You can try a Tens machine or learn acupressure points. Experiment and find things that work the best for you.

Communicate with others.

While it may not be easy to talk about AS, the only way for people to understand what you’re going through is to explain your condition when you are feeling relatively well. When you’re already experiencing a flare it can be too late as you’re already in pain, tired, grumpy and probably annoyed.
Make sure that your family, friends, colleagues, employer and lecturers understand what’s AS and how its flares affect you. Some of these key people have to know that flare can come unexpectedly and prevent you from coming to work, school or social events. If someone struggles to understand, you can always share with them NASS guides.
Think about a code word for a bad AS day so the whole family can understand, or use NASS mood bands to communicate without words (very useful if you’re really struggling!).
If your flares increase in number or intensity, seek advice from your rheumatology team or GP as your medication or its dosage might need changing. Most importantly: don’t suffer in silence! There is help out there.

If you’re in pain, struggling, experience problems with your school or employer due to your AS flaring, you can always get in touch with NASS via our helpline running Monday to Friday, 9:00-12:00, at 020 8741 1515.

We’re also working on a learning module for NASS members, aimed at creating an interactive AS flares toolkit. If there’s any specific areas you’d like us to cover please leave a comment or get in touch with Jakub (jakub@nass.co.uk).

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