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.

It’s important to remember that different things work for different people and when starting a new exercise regime, your rheumatology team can advise on what’s appropriate for you. One of the biggest things Andrew stressed is that there is no perfect exercise routine or amount, so experiment to find what works for you and be kind to yourself.

Getting started

When you’re starting a new exercise regime, make it as achievable as possible. Finding something you enjoy will make it much easier to start and, importantly, help you do it consistently over a long period of time.

• Are there different times of day that you prefer exercising?
• Do you prefer different types of exercise at different times of day?
• Do you prefer to exercise with others or on your own?
• Does music help motivate you?

As Andrew says, “the best exercise is the one you get done”.

Ideally you should aim for some moderate-intensity exercise. This means you get slightly out of breath, you’re a little sweaty and it will feel slightly challenging. This is a good way to judge the right level of workout and help you to increase the intensity over time safely.

Warming up

It’s important to warm up well before exercising to reduce the likelihood of injury.

• Some gentle cardio like cycling, cross trainer or brisk walking can help warm your muscles and joints.
• Try loosening your joints with swinging arm or leg movements and spinal twists.
• To help get your muscles fired up, try standing with your back against a wall and gently press into it. This will get the muscles warming up without moving your joints too much.

How much exercise should I do?

It depends on how much you currently do, how well your axial SpA (AS) is controlled and your general health. It’s worth checking with your healthcare team, but the general advice is 150 minutes of cardio exercise each week and strengthening exercises about three days a week.

Building up over time

To help you build up your exercise over time, think of FITT:

Frequency: exercising more often
Intensity: training a bit harder
Time: exercising for longer
Type: change the type of exercise

Make small increases and see how you feel in the days afterwards before increasing again.

Avoiding injury

The biggest advice for avoiding injury is to start with lower weights and repetitions, then increase this slowly over time as your strength and fitness increases.

Don’t worry about the ‘perfect posture’ too much, but be aware of your position and seek advice from a physiotherapist if you need to.

Injuries tend to happen when you’ve done too much too quickly, the weight is too heavy or you’re tired. If you feel tired, lighten the weight a little and concentrate on doing less repetitions really well.

Have a plan for flares

Flare ups of fatigue and pain are common in axial SpA (AS), even when your condition is generally well controlled. Sometimes it can physically stop you exercising, but it can also impact your motivation.

It’s important to keep moving when you’re flaring and there are some simple changes you can make if you want to weightlift during a flare:

• Do less repetitions of each exercise
• Use lower weights than usual
• Train different body areas to reduce strain on painful areas
• Do a shorter workout
• Try less impactful exercises e.g. exercise in water
• Exercise snacking: do small amounts of exercise throughout the day
• Have equipment at home: e.g. cables, bands, dumbbells, use a wall or the floor, or even tins of beans in a bag!
• Workout in water: use wrist/ankle weights, push a float into the water to add resistance or even hold a float between your knees for a good core workout

Positions to help weightlifting

As already mentioned, there is no perfect posture or alignment for anyone. Be guided by your healthcare professional’s advice and how things feel for you. There are some simple ways to adjust your position when lifting to find what’s right for you:

• Modify machines to find angles to suit you
• When using free weights, use a bench and alter your position/angle to make it more comfortable. For example, try leaning back to do a shoulder press, rather than sitting upright
• Dumbbells or cable machines can be easier than barbells. Sit on a bench when using these to keep yourself steady
• Use a hoodie/towel rolled up behind your head if you need extra neck and shoulder support

Squats

Before lifting, loosen up by doing small squats without weights or doing hip movements on machines.

If you find back squats uncomfortable on your spine, there are different types of squats that put pressure on your spine but still give your legs the same workout:

• Front squats: holding the bar on the front of your chest
• Goblet squats: holding a dumbbell or kettlebell in front of you
• Suitcase squats: holding weights in your hands

Use a deadlifting strap on a buffalo bar or safety bar if shoulder stiffness makes it difficult to hold the bar behind you.

Deadlifting

Commonly it can be difficult to deadlift with the bar on the ground, so try using bigger plates to raise the bar up or start with it on a bench.

Change your stance by having your feet wider or narrower to help with hip movements or discomfort.

Intense workouts

Sometimes you want an intense workout without putting pressure on your joints. There are a few ways to achieve this:

• Super sets: do back-to-back exercises where you work on one muscle group, followed by the opposite muscle group. For example, do bicep curls immediately followed by tricep pushdowns, or shoulder presses followed by lat raises
• Pre-fatigue muscles so you can use less weight. For example, do chest flies to tire the chest muscles before a bench press
• Drop sets: start with heaviest weight you can lift comfortably, then as your muscles fatigue move onto the next weight down and do as many reps as you can before dropping down again
• Lower the weight you’re using, but increase the repetitions
• Try High-Intensity Interval Training (HIIT)

Ideally the exercise should be difficult enough to challenge you, but not to the point where it’s really sore afterwards. As Andrew says, “stimulate, don’t annihilate. But remember that if it doesn’t challenge you, it doesn’t change you”.

Hand pain with holding weights

Top tips for reducing hand pain while holding weights:

• Use deadlifting grips or wrist straps that hook onto bar (these can be used for any exercise, not just deadlifting)
• Strengthen your hands: using hand putty, squishy ball, resistance tool…
• Compression gloves can be helpful

Remember…

There’s no perfect exercise, no ideal number of repetitions or intensity. It varies for each person and it varies depending on the day and how you’re feeling. Listen to your body and your healthcare professionals to find what’s right for you… most importantly, enjoy yourself!

Andrew is an osteopath, researcher and lecturer with a special interest in axial SpA (AS).

The post Weightlifting with axial SpA appeared first on ASone.

A couple of years ago, whilst out running with a group of friends, I got chatting to one of the younger men in the group. I asked why he joined and what he hoped to achieve. The 25-year-old told me his story and to my surprise he had been diagnosed with ankylosing spondylitis about 6 months ago. He was advised to take up exercise, which he did a little of, but wanted to do more and get fitter in general.

I also live with axial SpA (AS) but I’m much older (just turned 47). Coincidently I found out about my axial SpA (AS) when I was the same age as him – so I shared my story with him. He was genuinely amazed and told me about ASone so I could share my story with some of the younger people living with axial SpA (AS) to give them some guidance and hope.

I was diagnosed with axial SpA (AS) in 1998. Back then I started to develop severe back pain, but doctors continually said that I was suffering from Sciatica. Different kinds of treatments and drugs didn’t make the pain go away. Eventually I visited a rheumatologist for tests which revealed I had a disease called ankylosing spondylitis. I had no idea what this meant and how it would affect me in the future.

Once diagnosed I spent 2 weeks in a hospital undertaking intensive physiotherapy. I felt a bit like a guinea pig: students were attending my physio sessions to learn more about the condition and how to treat it.

I felt lucky in a way that it’s not a disease that will kill me but given the opportunity it can make my life a severe painful misery. To be honest, occasionally this is the case!

One thing that does prevent it from getting worse and helps to control the pain is, believe it or not, regular exercise! It helps preventing my spine from fusing together, it keeps me flexible and helps to control the pain.

Back in my 20s, I didn’t move a lot and smoked about 30 cigarettes a day (which is advised to give up as this enhances the condition and it’s not good to smoke in general). Because of my diagnosis I had to change this lifestyle quite rapidly.

After the physiotherapy course I continued the healthier exercising regime, but the pain wasn’t going anywhere. I had more better days than before, but it still wasn’t enough. Some days I couldn’t even get up from a chair due to the pain being so extreme.

In 2010 I started to run a lot, cycle to work and joined a gym. Some were saying this must be a mid-life crisis, but this was my way of controlling the pain.

After some time of being more active, the pain started to be much less, but the stiffness was still there. I did notice that winter training had some great effects on my mobility and pain levels, it must have been the temperature that helped the joints. However, after I knocked out a 30k run one cold, Sunday morning, I couldn’t do anymore running for a week! The recovery took so long… That was a lesson on importance of pacing, which I learnt the hard way and as well that my body was hugely different compared to other runners.

In the next couple of years or so I increased my running. Mainly because I got a London Marathon place thanks to a charity and I managed to raise £10k. I hadn’t mentioned to anyone about my axial SpA (AS), I just got on with it and tried to continue as normal.

Now I’m addicted to running, cycling, fitness, yoga and gym. No one would notice that I live with axial SpA (AS), it’s not something I normally share. However, I thought about it and decided I should, as there are many other people around the world (we are talking millions!) who live with this life-long condition.

In 2017 I had the confidence to join a running club – Metros in Harrow, London – which I have to say was the best thing I have ever done for this condition and my fitness. With club’s regular meet ups and my own running sessions I was getting around 50-70 km a week!

You would assume I was doing really well and I wish that was the case. The truth is I was still in pain most of days. It’s quite normal for me to suffer after a long and fast run, and then recover for couple of days before I can come back to my training.

My motivation when I wrote this original article was to be able to keep running as much as I did then. I really want to run 2000 km in total that year, sadly that didn’t happen and only clocked up 1806, I fell short again in 2019, But thanks to the lock-down of 2020 I have already managed to run 2158km to date. Sadly though as I write this I’m injured due to tearing my left calf so I have been out for 3 weeks with another 2-3 to go before I continue on my new target 2020 MILES.

Some of this year’s achievements are:

In March, after seriously considering running a marathon again I took on a hilly 20 mile race which I completed in 2hr 30mins but by half way I started to get horrible pains in the glutes which then run down to my calves, which happened to be the same horrendous pain for many years when I drive long distance. I remember clearly wanting to give up so many times and stopped to walk before pushing on once again. I obviously collapsed in a heap at the end holding my lower butt cheeks (a beautiful sight no doubt). Thus totally reminding me that running this distance isn’t my thing and it’s not worth the pain or punishment it causes.

Back in June I raised some money for a charity where I decided to run as much as I physically could during 1 week and clocked up 132km – which included 5 half marathons – Of course I was dead on my knees by the time I finished the last run.

PBs wise – since the Feb 18 post I have done quite a few – I broke my Half Marathon PB by over 3 mins 1hr.27, 10k broken by about 2 min and now 38.56 after years and years of trying to get under 40. Then there is the 5k in 18.21 which was about 30 secs quicker than previous.

There have also been plenty of track and field events also as my running club takes part in a Vets League – so I broke a record in the High Jump for my age Group for my club, funny as I had never done before and took to it quite naturally. I went on to win an award for taking part in the most events (3000, 1500m, 800m, 400m, 100m, Javelin, Hammer, Long Jump, High Jump, Triple Jump Sadly I didn’t win any over the 4 separate events) and scored highest out of all that took part in our club and was also awarded another award for services and motivation to the club and members, which was a total surprise.

You can probably tell that I am someone that will do anything no matter what and I don’t let axial SpA (AS) dictate what I can and can’t do. I’m in control (most of the time).

However, it’s not all about the competition, awards and beating the records even though they are very motivating for me. The large part of it is that I just want to stay fit and not endure the pain when I’m not exercising.

And trust me after all these years the pain is still there, but I can’t imagine what it would be like if I didn’t have running, exercise or my running friends around me to continually motivate and inspire me.

I appreciate that everyone is different, and axial SpA (AS) comes in many forms and affects people differently, but if I could give some advice to anyone who has been living with axial SpA (AS) or just have been diagnosed, I’d say, don’t give in!

Keep moving and believe you can do anything you want to do. These are my methods of being in control of axial SpA (AS) (as much as I can!). I know many people who do the same as me, but I also know it might not be for everyone. Find your way and intensity, but again, don’t give in and keep moving!

20 years ago, I was a young guy but unfit, lazy and heavier than I am now. Who knew that axial SpA (AS) would be a blessing in disguise. It turned out to be my driver and motivation to keep strong and fit.

I hope that by writing this article I will be able to inspire anyone with axial SpA (AS). I want to let you know that you’re not alone, you can find the support you need out there, but the only way to control your axial SpA (AS) is to do something about it yourself! Don’t let it get the better of you and keep moving!

Axial SpA (AS) hasn’t beaten me, it made me fitter and stronger, let it do the same for you!

Marcus is a serious businessman and a serious runner. He battles his axial SpA (AS) by being very active and not giving in to his condition. You can follow his progress on Instagram.

The post Axial Spondyloarthritis did not beat me, it made me stronger and fitter! – Update! appeared first on ASone.

Causes of neck and shoulder pain in axial SpA (AS)

There are lots of potential causes for neck and shoulder pain in axial SpA (AS). If you’re experiencing pain and you’re unsure what to do, speak to your GP or physiotherapist for advice.

Causes of pain can include:

• Active inflammation in the neck
• Enthesitis (inflammation where the muscles attach onto the bones of the neck or shoulder)
• Muscle tension
• Postural changes
• Nerve pain
• Bone changes, such as fusions

When to see your doctor

Speak to your doctor if you’re experiencing new or severe pain. If you’re experiencing any of the following symptoms, seek urgent advice from your doctor or 111:

• New pins and needles in one or both arms
• New weakness in one or both hands/arms
• New numbness in one or both arms

If you have new pain travelling down your left arm with shortness of breath or chest pain (heart symptoms), please call 999.

Neck and shoulder stretches

Stretching is really important for axial SpA (AS), because it helps improve the range of movement in your joints, increases the flexibility of your muscles and helps with your overall mobility.

Some helpful stretches for the neck and shoulders include:

• Chin tucks
• Neck semi-circles
• Neck side bending
• Neck rotation
• Neck and shoulder stretch
• Pectoral stretch
• Shoulder movements

For full directions on these exercises, download our instructions here.

Neck and shoulder strengthening

Increasing the muscle strength around your neck and shoulders can help reduce pain and increase your mobility and ability for every day activities. It can take a while for the strength to build and to feel the benefit, so it’s important to be persistent and consistent with strengthening exercises.

Some helpful strengthening exercises include:

• Wall press
• Four point kneeling
• Bicep curls
• Shoulder shrugs
• Arm raises
• Arm rows

For full directions on these exercises, download our instructions here.

Exercise safety

Start any new exercise with caution and gradually build up the number of repetitions over time. If any new exercise causes pain during or afterwards, stop and speak to a physiotherapist for tailored exercises to suit you. Read more about exercise safety with axial SpA (AS) here.

A note on posture

When talking about posture, it’s important to remember that everyone will have a slightly different position that is natural for them. With axial SpA (AS), our focus is on keeping the spine, hips and shoulders flexible and strong to allow you to move freely and maintain an upright position. Movement is key for this, so really the best posture is the next posture.

You can incorporate more movement into your daily life by making small changes, such as:

• Setting a timer on your phone to get up and stretch every hour
• Putting notes on the fridge, bathroom mirror and kettle as reminders to do some stretches and exercises in those spare minutes
• If you work in a sedentary position, such as at a desk, have lots of different positions you can switch between. For example, sitting on a swiss ball, a standard desk chair and somewhere you can stand to work
• Get an exercise buddy, to motivate each other and provide support

Self care

Ice and heat

Ice or heat locally on an area can provide pain relief. Heat is especially helpful to soothe muscles and promote relaxation. You can place an ice pack or heat pad (wrapped in a towel) on the area needed for 5-10 minutes. This can be repeated every hour if necessary.

Massage

Massaging sore muscles can be very comforting and doing this before stretching can make the stretches more effective. You can use your fingertips to massage in gentle circular movements at the back of the neck, either side of the spine and across into the shoulders and upper arms. Do not massage directly over boney areas and keep the pressure comfortable. Some people find foam rollers and spikey massage balls more effective for stronger massage and to avoid putting pressure on the fingers.

TENS machine

TENS machines use electrical impulses to help reduce pain. Ask your Doctor or physiotherapist if this is suitable for you.

Sleeping comfortably

There are lots of pillows and mattresses available, but because everyone is different, unfortunately there is no one pillow or mattress type recommended for axial SpA (AS). For more details on experimenting with pillow types and general sleep advice, you can read the previous blog on night pain and axial SpA (AS) here. (Link to night pain blog)

Summary

There is lots you can do to self manage neck and shoulder pain due to axial SpA (AS). Sometimes it’s a matter of finding the right combination of self-care techniques and exercises. Naturally this may change over time, so having lots of options available is really helpful. To watch the video on this topic, you can 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 Self-managing Neck and Shoulder Pain 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.

Axial Spondyloarthritis (axial SpA) including Ankylosing Spondylitis, can cause pain at the front of your chest (where your ribs join the chest bone) and at the back (where your ribs join your spine). Even when your condition is generally well controlled, flare ups can occur and rib pain can be really debilitating.

There are various different techniques to help reduce rib pain, but as each axial SpA flare can behave very differently, it’s very helpful to have different methods written down so you can try each one and find what works for you. It’s all about having a variety of ‘tools’ in your ‘axial SpA toolbox’.

Before I begin, I want to emphasise that if you’re struggling to manage your flares, please speak to your rheumatology team for specific advice and help. This blog will give some ideas on self-care techniques, but it’s not a substitute for individual advice from your health team. If you have any tips for rib pain that I haven’t discussed, please do share in the comments for others.

Heat or ice

One of the most soothing things can be applying heat or ice to the painful area. Use a heat pad/wheat bag or ice pack, wrapped in a tea towel, onto the area for 10 minutes. You can repeat this frequently, but don’t apply heat or ice directly to the skin.

A hot bath or shower can be very soothing for the muscles surrounding the rib cage. If you find cold is more effective, then use the shower head on a cool setting directly onto the painful area for a minute or so.

Rest and movement

It can seem counterintuitive with axial SpA, but frequent rests can be very beneficial when your ribs are flaring. I recommend regular, short rests between periods of activity to reduce your rib pain, while still allowing for any fatigue you’re experiencing. Resting for long periods can feel nice at the time, but will only add to the pain and stiffness in your ribcage. In the long-term, keeping active will maintain strength in the muscles surrounding your back and ribs, which can help support the joints.

Exercise

Gentle mobility exercises can be really helpful during a flare up. Over time you will gradually learn the amount of stretching and exercise your joints will tolerate during a flare, so start gently and build up slowly.

Some of the best exercises are while seated:

1. Gently tilt your body to the side to reach your hand to the floor. Repeat on the other side.
2. Gently turn your body, relaxing your neck and shoulders as you look behind you as far as comfortable. Repeat on the other side.
3. Flow between looking up towards the ceiling and arching your back, then looking down to the floor and relaxing forward.

All of these movements should be comfortable and shouldn’t aggravate the pain. It’s best to try these movements when you’re not flaring first, so you know where your comfortable range is.

Short-term adaptations

During a flare, you may wish to avoid reaching high overhead or down to the ground where possible. Ask someone to move things onto counters to avoid over-stretching frequently. If you’re generally quite mobile, I recommend only adapting your home during a flare; day-to-day movements are really important to help keep you flexible and mobile.

Reduce the pressure on your rib cage

If you have severe pain in your ribs, then this will seem very obvious, but avoid tight clothing that puts pressure around your ribcage.

When travelling in the car, use a memory foam seat belt cover to cushion the area that crosses your rib cage, but still allowing the seat belt to be effective in an emergency.

When sitting on a sofa, use plenty of soft cushions behind you to keep you upright and avoid slumping.

Bra fitting: It’s important to be professionally measured to ensure you’re wearing the correct size bra. If a standard bra is too uncomfortable, then try a sports bra or bralette where the pressure is distributed differently.

Gentle massage

You can use the palm of your hand or your fingertips to gently massage the muscles of your neck, shoulders and around your ribs. I recommend doing this for short periods, but often, so you don’t overdo it and risk making the areas more tender. If the areas around your ribs are too sensitive to touch, then avoid massaging them and use ice or heat to help relieve the tenderness.

Swimming/Floating

Floating in water (in a bath or swimming pool) can be very effective at relieving pain around joints. If you’re able to, gentle swimming is an excellent exercise for the muscles around the joints while it doesn’t jar the joints themselves.

Pain relief

This is something to speak to your rheumatology team about so you can form your own plan. I recommend writing down what pain medication works best for you at different times. For example, for the beginning of a flare, some simple painkillers can be helpful. Whereas during a severe flare, some topical pain relief or anti-inflammatories can be helpful. Creating this plan when you’re feeling well will help reduce the stress if you feel a flare coming. Most importantly, have it written down and remember to check it when you’re flaring. When you’re in a lot of pain, it’s really easy to forget what’s been recommended to help.

Sleeping position

Many people report disrupted sleep when their ribs are flaring because it’s difficult to find a position that doesn’t apply pressure to the ribs. For short periods, some people find lying on their back with a couple of cushions to prop them up works well. I also recommend lying on your side with a pillow between your arms resting in front of you and a pillow between your legs. If this is particularly helpful, it can be worth buying a full body pillow because individual pillows can move about easily and disrupt your sleep further.

We also had this feedback from Julia, who shared with us “I’m finding sleeping on an airbed is fantastic – it supports me but doesn’t squash everything like a regular mattress. I started using it for my sacroiliitis but it’s good for my ribs too – best £5 I’ve ever spent!”.

Prevention

There are some ways you can reduce the likelihood of a rib flare or help reduce how frequently they occur. Firstly, it’s important to identify what triggers them for you so you can make alterations. For example, I find slumping on the sofa for a long time increases the likelihood of rib pain- so I make sure I sit upright with a cushion behind my back and do the gentle stretches I described earlier to keep my back moving while I’m watching a film. I do slump occasionally, but I’ve found I can tolerate it more when I do it less frequently.

To help identify triggers, you can use a simple ‘symptom diary’. Jot down each day roughly what symptoms you’re experiencing, your activity and your food intake. Sometimes over time you can see a pattern develop. Do not get too worried about keeping a detailed diary and I would recommend having a break from doing this every now and then, otherwise it can feel a little overwhelming.

Strengthening

Strengthening the muscles around your back and rib cage can help prevent episodes of pain. It’s also essential for the long-term management of axial SpA. A great exercise to start with is a wall press (essentially a press-up against a wall). As you do the movement, really focus on squeezing your shoulder blades together to strengthen this area.

Diaphragm breathing can help stiffness or reduced movement in your ribcage. Lie on your back and place one hand on your sternum (chest bone) and one hand on your stomach. As you breathe in, try to breathe right down into your stomach, so your lower hand rises and your lower ribs expand. Your lower hand should relax down as you breathe out and contract your abdominal muscles.

Check out the video on our YouTube channel for another exercise to try, using your arms to increase the movement:

Hydrotherapy is an excellent exercise for the whole body, so check with your local hospital if they run sessions.

Not only is it a great strengthening exercise, it’s also great fun… singing! I am no singer, so I enjoy blasting out something that’s vaguely like a tune when I’m driving on my own. I wouldn’t inflict that on anyone else, but the benefits for the strength/mobility of my ribs, my lung capacity and also my mood are noticeable. Why not give it a go?

I hope you’ve found my top tips helpful. Please do leave a comment below if you have any techniques that work for you. Sometimes the simplest change can have huge differences when living with axial SpA, so it’s worth trying things out and finding what works for you.

Zoë Clark lives with axial SpA herself and 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 Managing Rib Pain in Axial Spondyloarthritis (AS) appeared first on ASone.

The sense of dread at heading into the packed gym and being judged for what I could and couldn’t do was overwhelming. This was a very unfamiliar feeling for me as I have always felt at home in a gym.

I am an ex-military, qualified personal trainer and now an Osteopath who teaches exercise rehab, yet I felt frightened about going into the gym. I was having a high pain day and didn’t know if I would injure myself or cause more pain. Worse still see someone I knew and have to take the knock to my ego or repeat the same old conversation and explanation. Since my axial SpA (AS) has worsened my body has changed a lot, I have lost muscle and put on some fat, had immense fatigue and really didn’t want to do much. With some new medication and self-care I’m starting to get back to fitness but with slightly altered expectations.

Back pain is not new to me having had it start in my early teens, however my axial SpA (AS) diagnosis is new and my progressively worsening physical symptoms and fatigue have made training hard, I fully understand how important exercise is for helping axial SpA (AS) and I have encouraged people to do it for years, however, being on the other side and feeling like your whole body hurts and having someone say “just try some exercise” is really not helpful!

So cut yourself some slack, if you struggle or are having a day where you just can’t face it that’s OK.

Its my job and I have struggled, I have lost fitness and muscle but found ways to adapt my training to suit what my body needs. Some days I just go for a light swim while on others I can still lift weights. I have found modifying exercises and using machines to be more helpful for me and use the cable machines to adjust the position and keep my joints happy. I also wear a weightlifting belt and wrist and knee wraps which has made a big difference to my pain when training.

Some days I train like a beast, others I’m out of breath before I have even gotten in the gym. So be kinder to yourself, everyone struggles. Taking a friend for support or finding a way to exercise that you enjoy may really help or even try a home workout or a nice walk.

It will get easier on some days so do what you can when you can, and If you’re having a bad day it’s totally acceptable to listen to your body and rest. It’s a great feeling putting my walking stick down and picking up a massive dumbbell, even if it gets a few funny looks, but I have realized that’s not my problem.

Written by Andrew MacMillan who is @andrew_osteopath on instagram

The post Pain and Gainz – AS and the gym appeared first on ASone.

From the ages of 11 to 22 I was in constant pain and shuttled back and forth to the doctors all that time to be told it was growing pains or cartilage issues. It wasn’t until I had iritis continually for 3 months and was unable to even move out of bed in the morning without grasping the walls by my fingertips to ease me out of bed and then spending 1-2 hours in a hot bath just to be able to get moving, that a doctor suggested blood tests for arthritis.

I thought the future would be very bleak for me as I spent years in absolute agony and then because I was taking so many anti-inflammatories – that had a knock on effect of creating a host of stomach issues.

The last 13 years I have been on biological therapy, anti TNF that I simply inject once a fortnight. Combined with a healthy lifestyle, yoga and meditation my condition has improved immeasurably and although certain things like flights and extended time sitting can aggregate my axial SpA (AS) – I think I have managed to control and master my axial SpA (AS). I am currently retraining as a meditation teacher along with sound therapy, biofield alignment and other holistic therapies which I know can have a major impact on anyone struggling with a long term health condition.

At 46 years old I have just achieved a gold and bronze medal at the UKTC (United Kingdom Taekwon-Do Council) World Championships 2019. I just wanted to let anyone else who is young and recently diagnosed and feeling a bit despondent that with the right treatment and lifestyle you can achieve anything!

Anya is a guest blogger and her post does not necessarily represent the views of NASS. 

The post Anya’s Journey from diagnosis to Taekwondo Champion appeared first on ASone.