How to Advocate for Yourself When You Have Psoriatic Arthritis

From everydayhealth.com

Inflamed joints, stiff hands, lower back pain, and fatigue — psoriatic arthritis (PsA) can be difficult to explain when many of your symptoms may be invisible. You might look fine while you're dealing with a flare that’s making everyday tasks like typing, cooking, or keeping up at work harder than they look from the outside.

That gap between how you look and how you feel can make it harder to get the support you need from your doctor, family and friends, and your employer. This is where self-advocacy comes in. It means communicating clearly about your symptoms, speaking up when you need changes to your treatment plan or daily responsibilities, and helping loved ones understand how your condition is affecting your life.

Medical Appointments: Plan Ahead

One of the most important places to advocate for yourself is at your doctor’s office.

Document Your Medical History

Appointments can feel short, so it helps to arrive organized and prepared to ask questions, says Joy Selak, PhD, the co-author ofYou Don’t Look Sick! Living Well With Invisible Chronic Illness, which she wrote alongside her rheumatologist. The book chronicles Dr. Selak’s decades-long journey with two invisible illnesses.

Selak brings a one-page document to her medical appointments, listing her diagnoses, current prescriptions, history of surgeries and medical interventions, and a notes section with questions or topics she wants to cover that day.

“Everything you can do to not take up appointments with data collection, but get right to what the concerns are, can lead to a more meaningful conversation,” she says.

Document which medications you’ve tried, and why they didn’t work, says Arthur Mandelin, MD, PhD, a Chicago-based rheumatologist and an associate professor at the Northwestern University Feinberg School of Medicine. “Without this information, insurance delays in getting access to the next or newest drug can be very lengthy,” Dr. Mandelin says.

Track Your Symptoms Between Appointments

Get specific when tracking your symptoms between appointments, says Alireza Meysami, MD, the head of rheumatology at Henry Ford Health in Detroit, where he specializes in diagnosing and treating inflammatory arthritis, including psoriatic arthritis.

“Patients are experts on how the disease affects their daily lives. The most helpful information is not simply where it hurts, but how it changes what they can and cannot do,” Dr. Meysami says.

Keep track of:

• Joint pain, swelling or stiffness, and how long morning stiffness lasts
• Fatigue and how it affects daily activities
• Skin or nail changes
• Flare-ups, including what may have triggered them and how long they lasted
• Amount of prednisone being used, if any

Instead of saying “My pain is worse,” provide examples, such as, “I can’t type for more than 20 minutes” or “I had to stop walking my dog.” “These functional examples help us understand the true impact of the disease and make better treatment decisions,” Meysami says.

This is a crucial step if your doctor needs to fill out paperwork for workplace accommodations, Mandelin says.

Some people rate their pain and functional impairment on a scale of 1 to 10 — with 10 being worst — to help their doctors understand disease severity, Mandelin says.

Take Photos of Symptoms

When possible, take photos of swollen joints, psoriasis plaques, nail changes, or dactylitis (“sausage digits”), Meysami says. He says these details are “extremely valuable” because symptoms can improve before a doctor’s visit.

Push for Treatment Adjustments if Needed

If you have persistent joint pain, worsening psoriasis, or difficulty completing everyday tasks despite treatment, tell your doctor, Meysami says. “Patients should never assume they simply have to ‘live with it,’” he says.

Your rheumatologist can suggest another treatment option, including biologic therapies and targeted oral medications, he says.

Another important sign is needing frequent courses of steroids or relying on pain medications to get through the day.

At Home: Establish a Way to Ask for Help

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At home, self-advocacy often starts before you’re in the middle of a flare. Having clear, proactive conversations with family members can make it easier to ask for help when symptoms are flaring.

Have the Conversation Before You Need Help

Instead of waiting until you’re already overwhelmed, try explaining what PsA is like when you’re feeling well, Selak says. Sit your family down and explain what may happen during a flare up. “You need to get out in front of it on a good day. Then you’re both being realistic about what you can and can’t do and when you can and can’t do it,” she says.

That way, loved ones aren’t trying to understand your needs for the first time when you’re already depleted.

Break the ‘I’m Fine’ Habit

Saying “I’m fine” can feel easier than explaining pain or fatigue, especially if you don’t want to seem like you are complaining. But masking symptoms can leave family members unaware of what you’re carrying — and may lead to burnout, resentment, or less support than you actually need, Selak says.

“All of us who have had a chronic illness have done this, where you try to buck it up. There’s no upside to it,” she says. “Don’t pretend you’re okay when you’re not.”

Explain the Impact, Not Just the Feeling

When you’re living with an invisible illness, daily challenges aren’t as obvious as a broken bone or visible injury. But with PsA, common limitations include carrying groceries, typing, cooking, opening jars, climbing stairs, getting dressed, driving long distances, and even playing with the kids, Meysami says.

Instead of saying, “I'm flaring,” he suggests examples, such as, “My hands are too stiff to button my shirt,” “I’m exhausted after grocery shopping,” or “Walking upstairs feels like climbing a mountain today.”

“Describing symptoms in practical, real-world terms is one of the best approaches,” he says. It could be your family’s cue to understand it’s time to pitch in.

At Work: Formalize Your Accommodations

If managing work with PsA symptoms is becoming difficult, it may be time to advocate for yourself and ask for accommodations.

Learn Your Rights

Familiarize yourself with the Americans with Disabilities Act (ADA), your company’s HR policies around time off for appointments and sick leave, and resources available to you, Selak says.

Under the ADA, people whose PsA qualifies as a disability may be protected from discrimination, and you may be able to request reasonable accommodations. And if you can’t work due to your condition, you may be eligible to apply for disability benefits.

Ask for Specific Support

Before talking to HR or your manager, make a short list of what would help you do your job, Selak says. The Job Accommodation Network lists arthritis-related options such as voice-to-text software, typing aids, working from home, or scheduled breaks to stretch. Explain the limitation and a practical fix, Meysami says. “One of the biggest challenges with psoriatic arthritis is that much of the disease is invisible. Patients sometimes worry they'll be viewed as complaining or exaggerating because others cannot see what they're experiencing,” Meysami says.

With Friends: Educate Your Inner Circle

Friendships can become complicated when PsA affects your energy, mobility, or ability to keep plans. The key is to be straightforward, says Elizabeth Medeiros, who was diagnosed with juvenile psoriatic arthritis in 2010 when she was 14 years old, and has since blogged about life with the chronic condition.

Medeiros says her approach depends on the relationship. Long-time friends may already understand her limits and recognize when she needs to slow down, but with newer friends, she’s learned to be upfront about flares, needing to cancel, or adjusting plans.

“Being direct helps, like, ‘I’d really love to come to the museum with you, but the only way I can handle it is if I rent a wheelchair for the day. Is that something you’d be okay with?’” she says.

It also helps to offer another way to connect if you need to cancel, such as inviting a friend over for pizza and a movie or scheduling a FaceTime call instead, she says.

Get Support Beyond Your Rheumatologist

Advocating for your health also means asking for additional support, such as physical therapy or occupational therapy, Mandelin says.

“I refer any patient who asks, whenever they feel ready to ask, including the very first visit if that's what the patient feels they need,” he says.

An occupational therapist can recommend adaptive equipment, provide splints or braces, or teach joint protection techniques, while a physical therapist can help with mobility, flexibility, muscle strength and overall physical function, Meysami says. “Depending on the patient's needs, we may also involve dermatologists, pain specialists, psychologists, nutritionists, or social workers,” he says.

He says patients should feel comfortable asking questions like:

• Would occupational therapy help me?
• Would a hand splint or brace make daily activities easier?
• Could physical therapy improve my mobility?
• Are there support groups or mental health resources available?

Emotional support matters, too. Medeiros says therapy has been especially helpful during times when family and friends could not support her as much, or when pain and fatigue during flares made it harder to work through her emotions.

“Managing a chronic disease isn't about doing everything alone, it's about using the right tools and support to continue living a full and meaningful life,” Meysami says.

The Takeaway

• To advocate for yourself when you have psoriatic arthritis, start with clear, organized communication — bring your medical history, symptom changes, photos, and top questions to appointments so your doctor can understand how PsA is affecting your daily life.
• At home, work, and with friends, explain adjustments you may need and the practical impact of PsA, such as trouble typing, cooking, climbing stairs, or keeping plans, instead of minimizing your symptoms.
• Learn about resources that can improve your quality of life, such as referrals to OT, PT, psychotherapy, and support groups, so you don’t have to manage PsA alone.

https://www.everydayhealth.com/psoriatic-arthritis/how-to-advocate-for-yourself-with-psoriatic-arthritis/  

7 diet tips for people living with arthritis

From restless.co.uk

According to the British Nutrition Foundation, more than 10 million people in the UK are living with arthritis. Although the condition can affect people of all ages, those aged 50 and over are more at risk.

Arthritis can be incredibly difficult to live with, and while there’s currently no cure, research suggests that certain lifestyle habits may help to slow its development and ease symptoms.

With this in mind, we’ve come up with a list of seven diet tips that might help if you or a loved one is living with arthritis.

What is arthritis?

There are various forms of arthritis but, generally, it’s a condition that causes pain and inflammation in joints.

The two most common types of arthritis are osteoarthritis and rheumatoid arthritis. We’ll cover these below…

Osteoarthritis

Osteoarthritis is the most common form of arthritis. Research* suggests that around 1 in 10 UK adults has osteoarthritis of the hip, and a quarter have knee osteoarthritis.

The exact cause of osteoarthritis is unknown, but it’s considered a ‘wear and tear’ condition. This means cartilage (the flexible tissue that cushions joints and reduces friction) wears down over time due to daily activity. Factors, including injury, age, weight, and whether you have any other related conditions (like gout or diabetes), can also play a role.

Osteoarthritis typically leads to pain, inflammation, and the formation of bone spurs (osteophytes) – lumps that grow on the bone near joints or on the spine. People suffering from osteoarthritis also tend to experience stiffness and limited mobility.

Rheumatoid arthritis

Rheumatoid arthritis is an autoimmune disease that occurs when the immune system mistakenly attacks cells in joints.

Like osteoarthritis, rheumatoid arthritis can cause pain, swelling, stiffness, and the formation of bone spurs – as well as other symptoms like tiredness and weight loss.

Rheumatoid arthritis is less common than osteoarthritis, though it’s still estimated to affect more than 400,000 UK adults.

Other types of arthritis include gout, psoriatic arthritis, and enteropathic arthritis. 

How can diet affect the symptoms and development of arthritis?

We all know a balanced diet is important for overall health and lowering our risk of developing conditions like cancer, diabetes, and heart disease.

Studies also suggest that diet may play a role in the severity of arthritis symptoms and have the potential to slow its progress – possibly even reducing the likelihood of developing arthritis in the first place.

There are a few reasons for this. For example, research shows that being overweight is a risk factor for developing osteoarthritis (particularly in the knees). This is because the heavier we are, the more stress we put on our joints, and the more likely the cartilage is to wear down.

Studies have also linked weight loss with slower cartilage degeneration in patients with osteoarthritis, and lower uric acid levels in people suffering from gout (higher levels of uric acid increase the likelihood of gout flaring up). As a result, maintaining a healthy weight may help slow the development of arthritis and reduce symptoms.

Certain vitamins and minerals are also thought to have anti-inflammatory properties, which may help ease the symptoms of arthritis. This is significant as, whether due to specific treatments or limited mobility, people with arthritis can be prone to becoming deficient in specific vitamin and mineral deficiencies. So, making sure you’re getting enough of these is important.

7 diet tips for people living with arthritis

1. Make sure you're getting enough omega-3s

Omega-3s are essential fatty acids that play a key role in several body processes. They’ve been shown to help prevent and treat depression, maintain eye health, and reduce the risk of heart disease and stroke.

Omega-3s also have anti-inflammatory properties, which studies suggest may help prevent or reduce the symptoms of arthritis.

Some of the best sources of omega-3s are oily fish, such as mackerel, salmon, sardines, and trout. These are great for people with arthritis, in part, because they also contain vitamin D (which we’ll get onto later).

If you don’t like fish or are plant-based, seeds (like flax and chia), nuts (like pecans and hazelnuts), and soya beans are good sources of omega-3 fatty acids, too.

It’s best to try getting omega-3s from food because they’re often easier to absorb than supplements and contain a range of nutrients.

However, if you’re struggling to get enough omega-3s into your diet, you can buy fish oil and fish liver oil supplements. That said, it’s always best to speak to your GP before taking supplements of any kind, as they won’t be suitable for everyone.

To find out more about omega-3s and how you can incorporate them into your diet, why not read our guide?

2. Consider whether you’re eating enough calcium-rich foods

If you’re living with arthritis, it’s important to consider how you can reduce your risk of developing associated conditions, like osteoporosis. This causes bones to become brittle, and it’s common in people with arthritis.

The two conditions are linked because arthritis can cause pain and loss of joint function, which can reduce activity levels and increase the risk of developing osteoporosis. Some steroid drugs used to treat arthritis can also increase the risk.

As a result, it’s important to take care of your bone health – and one of the best ways to do this is to make sure you’re getting enough calcium (the NHS recommends 700mg a day). It’s needed to build and maintain healthy bones and also helps muscles, nerves, and cells function normally.

Some great sources of calcium are…

• Dairy foods like milk and cheese

• Milk alternatives with added calcium, such as soya milk

• Tofu (some have added calcium)

• Nuts, particularly almonds

• Leafy green vegetables like okra, cabbage, and kale. Spinach, on the other hand, does contain high levels of calcium, but because of its high oxalate content (a chemical that interferes with our ability to absorb calcium), we can’t absorb as much from it.

To find out more, check out our article: Everything you need to know about calcium.

3. Remember to get your daily dose of vitamin D

Vitamin D is important for bone health because it helps the body absorb calcium and store it in skeletal tissues. Low levels of vitamin D can lead to brittle bones and increase the risk of osteoporosis.

Research also suggests that vitamin D deficiency may increase the chance of developing rheumatoid arthritis and cause arthritis to develop more quickly.

Plus, vitamin D plays a key role in regulating the immune system, so getting enough is key for protection against a range of diseases and conditions.

Vitamin D is known as the ‘sunshine vitamin’ because our skin produces it when it comes into contact with the sun’s UV rays. According to the NHS, most people in the UK get enough vitamin D (10mcg per day) from sunlight alone from April to September. However, during October to March, this isn’t always the case, so the NHS recommends taking supplements or increasing the amount of vitamin D in our diet.

Sources of vitamin D include oily fish like mackerel, sardines, and salmon; mushrooms and vitamin-D-fortified foods are great plant-based options, too.

To learn more about vitamin D and how you can get the right amount, check out our guide.

4. Make sure you're getting enough iron

Iron is an essential nutrient needed to make haemoglobin, which is responsible for transporting oxygen throughout the body. Without enough oxygen, we may feel weak and tired.

Despite its importance, iron is the most common nutrient deficiency in the world and, unfortunately, is especially common in people with arthritis.

Research suggests this can be a side effect of non-steroidal anti-inflammatory drugs (NSAIDs), which are typically used to manage the symptoms of arthritis.

NSAIDs are known to cause bleeding and stomach ulcers. This loss of blood can lead to iron-deficiency anaemia, which can cause symptoms like tiredness, shortness of breath, pale skin, and heart palpitations.

To help prevent iron deficiency anaemia, it’s important to include lots of good sources of iron in your diet. Examples include…

• Red meat, poultry (especially the darker parts, like the thigh), and pork
• Seafood (especially oily fish)
• Beans and pulses
• Dark green leafy vegetables, such as spinach
• Dried fruits like apricots and raisins
• Supplements – though it’s important to always speak to your GP first

For more information on iron, iron deficiency, and how you can get more of it into your daily diet, check out our article.

5. Take steps to cut back on added sugar

Diets high in added sugar are linked with weight gain, tooth decay, and an increased risk of conditions like type 2 diabetes, heart disease, and high blood pressure. It can exacerbate the symptoms of arthritis, too.

In this study, people with rheumatoid arthritis found that sugary foods caused arthritis flare-ups. Additional research has also found that diets high in processed sugar can increase inflammation throughout the body.

For tips on reducing your intake, check out our article: 9 simple ways to cut back on added sugar.

6. Consider adding turmeric to your diet

Earthy and spicy, turmeric has been used in South Asian cooking for centuries. But did you know that it may have medicinal properties, too? In India, this golden-coloured spice was traditionally used to treat skin disorders and digestive issues.

There’s also evidence that turmeric may be beneficial for arthritis symptoms because it contains a substance called curcumin – a powerful anti-inflammatory and antioxidant.

This study, which compared the effectiveness of turmeric to a commonly used anti-inflammatory drug called diclofenac, found that curcumin had similar efficacy in relieving symptoms of osteoarthritis. Research also suggests that curcumin could be an effective and safe form of treatment for rheumatoid arthritis.

Turmeric can be added to your diet through food, as a tea, or you can take it as a supplement. But remember, if you’re thinking about taking supplements, it’s important to speak to your GP first.

For more information, check out our article: 8 health benefits of turmeric and how to add it to your diet.

Note: Research into whether turmeric is a safe and effective treatment for arthritis is limited. It’s not currently listed as an arthritis treatment by the NHS, so it’s important to seek advice from your GP before introducing it to your diet.

7. Try the Mediterranean diet

The Mediterranean diet is an eating style based on the traditional cuisines of Mediterranean countries like Spain, Greece, and Italy. It includes lots of fruit, vegetables, legumes, nuts, grains, and unsaturated fats – for example, olive oil. Seafood (including oily fish), dairy, and poultry are also included, but in moderation.

Experts have found that following the Mediterranean diet can prevent cardiovascular disease and extend healthy life expectancy. Recently, research has also found that it could be beneficial for people living with rheumatoid arthritis.

This study found that following the Mediterranean diet for three months reduced inflammation and improved joint function in people with rheumatoid arthritis.

To find out more about the Mediterranean diet, why not check out our article here?

Final thoughts…

Eating a healthy, balanced diet is key to our overall health and wellbeing. However, it can be especially important for those living with chronic conditions like arthritis, which can be incredibly challenging to live with.

Research suggests that staying on top of your vitamins and mineral intake can make all the difference when managing symptoms and reducing your risk.

For more tips on how to eat a healthy, balanced diet, head on over to our diet and nutrition section. Or, check out our articles: 9 tips for sleeping better with arthritis and 7 tips for coping with arthritis in winter.

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