Jean's joint pain story

Jean's diagnosis and medications

Jean first got her diagnosis after she fainted and fell to the ground at home as a result of her ileostomy (this procedure happens when your small bowel is diverted through an opening in your stomach). Jean visited her GP, where she was examined for torn ligaments and muscles induced by her fall. As Jean's joint pain worsened in the days following, she visited her local hospital for an ultrasound.

In the waiting room, Jean lost her vision and was taken to A&E and thereafter the rheumatology department. Her ultrasound confirmed that she was experiencing symptoms of giant cell arteritis and polymyalgia rheumatica. Jean was injected with a high dosage of steroids to steady her vision and ease her pain. She remained on these for six months, before her dosage was gradually decreased.

Jean's joint pain peaks in the morning

Jean says her that joint pain is worse in the morning due to extreme stiffness and inactivity caused by giant cell arteritis and polymyalgia rheumatica.

"Mornings aren't always easy for me," she says, adding that if she's in pain she finds it easier to nap for half an hour (if she can) and continue her morning if the pain has declined afterward.

According to the NHS, stiffness with polymyalgia rheumatica peaks during the morning and begins to improve after around 45 minutes as you become more active. Alongside stiffness, you might experience pain in both sides of your neck and hips, a loss of appetite and fatigue.

Jean's fitness journey

Before COVID-19, Jean used to go for a walk once in the morning and afternoon. She was a member of her local gym and was able to swim up to 40 lengths. Sadly, Jean can no longer manage this. She is working on building her fitness back up slowly with the end goal of getting back in the pool and swimming 40 lengths again.

She said: "It's been a tough time and each morning has been difficult. I have deterioration at the base of my spine and sometimes I can't lie down on my bed in a certain way. I can't get up some mornings, it's challenging."

Versus Arthritis recommends physiotherapy and weight-bearing exercises to manage the symptoms of polymyalgia rheumatica and ease the pain and stiffness in the muscles of your shoulder, thighs and hips.

Physiotherapy that incorporates different shoulder exercises maximises your mobility and alleviates pain. If you are planning physiotherapy for treating your joint pain, we have a selection of specialists that can help you.

Alternatively, weight-bearing exercises can help maintain bone strength and reduce your risk of developing osteoporosis. Versus Arthritis ensures that this can be a simple as going for jogs, walks playing tennis, dancing, or lifting weights.

Jean's career with joint pain

Jean has always been career-driven and started by working as a netball coach, managing multiple netball teams. At University, she studied adult education and quality assurance before going on to work full- time within the adult education sector.

After her ileostomy at 28, Jean took a career break before returning to the adult education sector.

However, after her diagnosis with polymyalgia rheumatica and giant cell arteritis in 2018, Jean has been on sick leave since and works intermittently as an internal quality assurer.

According to the results of our most recent Joint Pain Matters survey, 46.28% of female respondents reported that joint pain had impacted their career.

Jean admits: "I certainly won't teach again, which I miss. I used to teach apprenticeship floristry but I can't stand for too long and when I stand my back hurts too much."

Jean's social life and lifestyle changes

During her first year of her diagnosis, Jean recalled: "Polymyalgia rheumatica affected me mentally as well as physically - partially losing my eyesight scared me and the pain was so bad. As it had taken a long time to get the pain under control, we haven't been anywhere or visited friends for a while."

Although Jean now has her pain under control, she still only manages to catch up with friends through Zoom and phone conversations (this is also partly due to COVID-19). She says: "My lifestyle has changed. I am used to getting up and into my car and just going, but I haven't done that in three years. I have driven and I have no trouble driving, but I wouldn't say I am as independent as I used to be."

Jean's mental health and support system

Jean lives with her husband, who helps around her the house and motivates her to go for walks. She says: "My husband has done well and looks after me all the time. He is the one who has got me through it."

Jean's husband also brought her a sewing machine for Christmas. Since then, she's cultivated a new hobby by learning how to use a sewing machine, bead and make necklaces.

Alongside practising her hobbies, Jean has joined the Polymyalgia Rheumatica and Giant Cell Arteritis UK's Association and regularly attends the webinars posted on their social media to become more informed about the condition.

If you are struggling with mental health and require emotional support, there are a number of free mental health support services available.

Jean's advice for coping with joint pain

Jean strongly advises joining a local support group if you suffer from joint pain.

She says: "There's nothing like listening to other people."

When asked about being a member of a joint pain association, she said: "In our local group there are only 25 actual members. We have a monthly Zoom meeting. I listen to what they say and they listen to what I say and we have a laugh. It really helps."

In the future, Jean hopes to go travelling. There are still many parts of the UK she would love to explore with her husband.