From telegraph.co.uk
Despite writing on the autoimmune disease, even this doctor struggled to get a quick diagnosis. Eight years on, she now lives a normal life
Perhaps it’s some morning stiffness you first notice, or some swelling in your fingers, wrists or toes. The early symptoms of rheumatoid arthritis (RA) are often subtle: a hint of tenderness, or tingling, in your joints.
But this wasn’t the case for Tammi L Shlotzhauer, the distinguished American medic. She’d been treating patients with the autoimmune disease for a quarter of a century – before being suddenly struck with it herself aged 56.
“Sometimes the disease comes on in fits and starts, other times it’s like a thunderstorm and mine was not the subtle variation,” says the author of Living with Rheumatoid Arthritis, a book so comprehensive it’s akin to the bible on the condition and is now in its fourth edition.
“I woke up one morning in 2016 and simply couldn’t get out of bed because of marked pain in my shoulders and hips. Given my extraordinary background, one might think that I knew immediately that I had RA, but I did not,” admits Shlotzhauer, who now lives in up-state New York. “Like everyone else, I had to do analysis on laboratories and give it some time.”
The tests for rheumatoid arthritis, Shlotzhauer explains, often aren’t positive early on, as they weren’t in her case with her.
And unlike osteoarthritis (OA), the “regular” kind that affects 10 million in the UK and is commonly associated with age, RA can develop at any age. While OA involves the wearing away of the cartilage that caps the bones in your joints, RA (affecting 700,000 Britons) is when the immune system attacks the joints.
Having treated hundreds of patients over the course of her career, Shlotzhauer’s “high suspicions” that it was RA were eventually confirmed 10 months after she’d awoken in agony.
“The irony was certainly not lost on me and actually living with RA was surreal,” says the doctor. I even joked about naming the fourth edition ‘Really living with rheumatoid arthritis.’”
Shlotzhauer admits she was surprised, having no family history of autoimmune diseases. Nor did she have any significant risk factors, such as smoking, obesity, periodontal disease or exposures to pollution. Instead, stress is the one thing Shlotzhauer blames, particularly after her wife’s death nine years ago.
“Five months prior to my first symptoms, my wife passed away with breast cancer,” she explains. “Dealing with her illness, her suffering and her death was a harrowing experience which led to sleepless nights, eating badly and weight loss. Managing her illness along with my own very busy practice was simply overwhelming. Those months after losing her were so laden with extraordinary grief and loss. And as I’ve discovered throughout my career, for many types of illnesses, stress can be the most damaging risk factor of all.”
Fortunately, Shlotzhauer’s work partner, a fellow rheumatologist, immediately started her on the strong medication prednisone, because of the severity of the onset. It can’t be used long-term use because of the side effects (such as osteoporosis) and once the acute stage had lessened, other disease-modifying medications (DMARDS) could be started. Initially she was put on hydroxychloroquine, which resulted in an allergic reaction, until different medications were tried over time to find the most suitable.
It’s crucial, says Shlotzhauer, to be started on DMARDS as soon as your diagnosis is confirmed. “Early treatment is imperative with this disease to avoid irreversible damage to your joints. But as important as the medications are, it’s equally essential to manage other lifestyle issues and for me, dealing with my grief was critical.”
Shlotzhauer was originally drawn to rheumatology because it dealt with complex illnesses that were challenging to diagnose.“It felt like being a sleuth – considering all the vague signs and symptoms and piecing the puzzle together,” she says. “Being able to help relieve symptoms of people who were frightened and in pain was so rewarding.”
Shlotzhauer is surprisingly pragmatic with the cards she’s been dealt, insisting getting RA has indeed helped her “become a better physician and person”.
“People don’t believe that, but I truly mean it, I never felt that I had any right to be spared,” she says. “Afterwards I listened better to patients and understood more, as well realising that my own advice was really hard to follow!” she admits. “Doing all the right things when you’re tired and in pain isn’t easy.”
Once Shlotzhauer’s acute stage was under control, she began a cautious exercise programme and addressed her diet, both important for controlling RA. Eight years on, she’s still on medications. “But I feel very well with my RA and I lead a perfectly normal life enjoying my hobbies include refurbishing and learning to play vintage instruments.”
Here, she lists all you can do on top of medication, to stay well.
1. Food
Diet alone can’t completely control RA, but it can help manage it. And though maintaining a healthy weight is particularly challenging with RA, it couldn’t be more important as data suggests that obesity increases the likelihood of developing RA.
Dietary recommendations for RA can be contradictory, but in general aim to eat a wide variety of veg, raw foods, and whole grains high in fibre. Choose whole fruits as treats and avoid processed foods as much as possible and limit sugar intake.
Studies suggest reducing fat intake overall (choosing lean meats, reducing red meats or even going vegetarian) can ease symptoms. Fatty fish can reduce inflammation.
2. Drink
Tea is rich in polyphenols, antioxidants associated in a large Swedish study with decreased risk of RA. But the therapeutic role of coffee is unclear; it’s best to consume in moderation.
Having alcohol disrupts the balance of gut bacteria worsening the prognosis in people with RA and lowers the body’s ability to fight infection. While red wine contains resveratrol, which has anti inflammatory properties, for many RA medications you will be advised to abstain altogether.
3. Reduce stress
We cannot control most of what happens to us, but we can control our reactions to those events. Excessive stress is hard on anyone, but has even larger ramifications for people with RA, who will benefit from eliminating anything that drains precious resources. Practice “positive reappraisal”, so instead of thinking “I don’t even want to get out of bed”, tell yourself “I’ll feel so much better after a warm shower”. This sends the message to your body “I can help myself”. Save your energy for things that matter and have meaning.
4. Stop smoking
Creating a lifestyle aimed at wellness is crucial: the first step is to kick bad habits, several studies show smoking increases the risk of developing RA by 40 per cent. Studies with twins showed that smoking not only triggers RA but contributes to its severity and makes it harder to treat. It’s also a significant risk factor for periodontal disease which further escalates the risk.
5. Get fit
One of the best coping mechanisms is feeling strong and fit. Exercise also reduces anxiety and improves energy, but what the best type for you is will depend on how inflamed joints are at that time. Ask your doctor to be safe, but in general swimming, biking and walking are all good choices with RA, as are mind-body exercises such as Tai Chi, Qigong and yoga.
6. Get at least eight hours’ sleep
Joint pain can undoubtedly interfere with your sleep, but research shows that those with RA who don’t sleep well have more joint pain, fatigue and are more depressed. Plan ahead to be in bed for a minimum of eight hours with an added hour to wind down – people with RA require more sleep than average. Taking a warm bath or applying heat patches before bed can help as can sleep inducing medicines. Your physical comfort is paramount for restful sleep so do what it takes to be pain free at bedtime and don’t fear asking your doctor for help.
7. Prioritise dental hygiene
A change in oral bacteria over the millennia likely contributed to the development of RA. Periodontal disease (PD) is a strong risk factor for developing RA in a person with the right genetic predisposition. One study confirmed that brushing, flossing and having regular scaling at the dentist can improve RA symptoms and reduce inflammation.
8. Don’t ignore sexual dysfunction
RA can make your sexual life more complicated. Pain, fatigue and medications can affect libido as well as physical capabilities and mental health, and erectile dysfunction is reported more frequently in with with RA, as is vagina dryness. But see a doctor as testosterone therapy can help. Don’t assume there’s no hope; sex is important and should be planned for and prioritised: a warm bath and pain relief medication ahead of sex will help; conserve energy during the day to avoid fatigue before sex; and get creative.
Excerpted from Living with Rheumatoid Arthritis, fourth edition by Tammi L Shlotzhauer
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