Rheumatoid arthritis (RA) tends to be a bit of a mystery to people who don’t live with it. The word “arthritis” often makes people think the condition only affects the joints and is primarily seen in older individuals. However, RA is actually an autoimmune condition that can affect people of any age and causes a wide range of symptoms. When you have RA, your immune system mistakenly attacks the joints, leading to inflammation in the joints as well as in other parts of the body. As a result, you will experience pain, swelling and stiffness in the joints — but you could also have other symptoms due to inflammation elsewhere in the body.
Those “other symptoms” aren’t usually discussed to the same degree that joint pain is. Perhaps due to RA’s association with arthritis, people often focus on symptoms the two conditions have in common. But that’s a shame, because if no one talks about the entire range of symptoms you could experience, you might feel like you’re the only one dealing with a particular symptom. In reality, there are so many fellow RA warriors out there coping with the same challenges.
That’s why we asked our Mighty RA community to share a “hidden” symptom of RA that doesn’t get talked about much. Their answers reveal that joint pain is just one piece of the puzzle. It’s time these additional, lesser-known symptoms got some recognition — if for no other reason than because they demonstrate what a true warrior you are for coping with a condition that brings pain and discomfort to your entire body.
Here’s what our Mighty community told us:
1. Lung Issues
The inflammation caused by RA affects not only the joints but also other parts of the body including the lungs. Symptoms include growths in the lungs, buildup of fluid between the lung and chest wall, damage to the airways, and interstitial lung disease (ILD), according to the Arthritis Foundation. ILD occurs when inflammation in the lungs causes a buildup of scar tissue, which can make breathing difficult.
The Arthritis Foundation reports that one in 10 people with RA will develop ILD over the course of their disease.
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RA can change your physical abilities dramatically, which may, in turn, lead to feelings of anxiety or depression when you aren’t able to participate in life as you used to. The stress of having a chronic illness, with all the medications, expenses, doctor’s appointments, and fluctuating symptoms, can be exhausting and, understandably, contribute to depression.
“A ‘symptom’ of RA that isn’t talked about often is the toll it takes on your mental-emotional state. I’d classify it as depression. I wasn’t prepared for the mental-emotional exhaustion RA would cause. There were days that I would tell myself, ‘If I’m going to feel and hurt like this the rest of my life, I don’t want to live.’ Thankfully, I have a wonderful support system around me that was able to push and encourage me through that time period!” — Lauren D.
3. Digestive Issues
Inflammation in the gastrointestinal system, an impaired immune system and medications likely all play a role in digestive issues, according to the Arthritis Foundation. Possible symptoms include bleeding, ulcers, diarrhea, constipation, obstruction and esophagitis. Certain foods may seem to lead to more symptoms too, though rheumatologist Anne R. Bass told The Mighty food triggers have not been proven scientifically. A 2012 study found that the risk of developing a GI event was 70% higher in those with RA than those without.
“My one symptom that doesn’t get discussed is digestive issues. Sounds crazy… but I’m now so sensitive to so many foods when I never was before.” — Melanie N.
Fatigue is more than just “being tired” — it’s a type of exhaustion that doesn’t go away after a night’s sleep. It can make you feel like you’ve just run a marathon even if you’ve spent most of the day on the couch. And its invisible nature can make it one of the most difficult symptoms to deal with, thanks to friends and acquaintances who may not realize just how debilitating fatigue is since you “look fine.”
“The crushing fatigue that causes me to have to just ‘shut down’ wherever I happen to be. I usually try to get away from the company I’m in as I find it embarrassing to have to just crash in front of people.” — Louise H.
5. Slow Recovery
People with RA may notice that it takes them longer to “bounce back” from illness or injury than others. The inflammation caused by RA means your body has to work extra hard to fight infections and regain energy. So while others can “get over” a cold in a couple of weeks, it may take you a month.
“Slow recovery — from illnesses, over-exertion, injury, stress, anything… It takes at least twice as long as it used to. Not to mention that the level we recover to is our new ‘autoimmune disease’ version of normal — not the same normal we used to be.” — Kat G.
6. Excessive Sweating
RA is often accompanied by flu-like symptoms. This is because RA causes your body’s immune system to switch on (albeit attacking your body’s own tissues instead of a foreign invader like a virus). This immune response can cause symptoms you would experience if your body was actually attacking the flu virus, leading to symptoms like a low-grade fever and sweating.
“Sweating and heat. Is this something anyone else experiences? My doctors have no answers. I get a feeling of heat that starts in my head and works down until my hair is soaked and I’m literally dripping sweat down my chest.” — Nancy A.
7. Weak Grip
RA’s effect on larger joints like knees and hips tends to be discussed more than its effect on wrist and finger joints. However, inflammation in these smaller joints comes with its own set of challenges, like difficulty holding objects, opening packages, and performing necessary work functions like typing and writing.
“Dropping everything due to lack of micro-grip in hands and weakened strength in hands and legs, (i.e. the inability to open a jar or bend down and pick something up).” — Miamaria
8. Getting Sick Easily
Medications for RA suppress your immune system, which makes you more susceptible to illnesses like the flu or the common cold. RA itself can lower your ability to fight off illness since the disease makes your immune system dysfunctional. To someone without RA, a cold may be a once-a-year annoyance. But if you have RA, you might catch a cold several times in a single year, perhaps seemingly whenever you come into contact with someone else who’s sick.
“I do everything I can to be as healthy as possible, but regardless, getting sick every couple months keeps happening,” Dina Neils wrote.
9. Pain and Stiffness After Not Moving for a Period of Time
You might assume that if you have pain and stiffness in your joints, your symptoms will lessen if you simply don’t move them. However, with RA, you can experience the exact opposite. Rheumatologist Brian D. Golden told The Mighty that this is due to “gelling phenomenon,” a feature of RA in which inflammatory molecules and fluid in your joints get thicker if the joint is stagnant. Once you move, the “gel” loosens, making it easier and less painful to move. This is why pain and stiffness are often worse in the morning, right after you wake up.
To head off this stiffness, people with RA are encouraged to get up and move after sitting for a long time and try to engage in low-impact exercise to keep your joints mobile.
10. Dry Mouth
If inflammation targets your saliva-producing glands, the result is dry mouth, which aside from being uncomfortable can also lead to gum disease and tooth decay. In addition, some medications may cause dryness and mouth ulcers as side effects.
“RA affects and destroys every part of the body… eyes, teeth, joints, ears, heart, lungs, skin, sinuses, hormones, etc… EVERY SINGLE PART!” — Kaye H.
For more insight on living with RA, check out these stories from our Mighty community:
- 8 Things I Want You to Understand About Living With Rheumatoid Arthritis
- What I’ve Learned After 3 Years With Arthritis
- 10 Symptoms of Rheumatoid Arthritis – as Shown in Photos