11 Things People Wish They Knew When They Were Diagnosed With Rheumatoid Arthritis – Yahoo Lifestyle

The moment your doctor first said the words rheumatoid arthritis, a million questions probably went through your head. What does this mean for my future? Will I be able to work or raise a family? Will I ever feel like I did before my symptoms began?

Rheumatoid arthritis (RA) is an autoimmune disease in which the bodys immune system mistakenly attacks the joints and other parts of the body. This causes painful inflammation in the joints as well as the eyes, mouth, skin, lungs and blood. Other symptoms include fatigue, stiffness and low-grade fever. There is no cure, but there are several medication options and lifestyle habits that can help (such as diet, exercise and reducing stress).

Every person with RA has a unique experience, and not even a doctor can tell you exactly what your journey will entail. But sneaking even a glimpse of what other RA warriors have experienced and learned since they were diagnosed can help you feel more prepared for the roller-coaster ride of RA.

Related: How Rheumatoid Arthritis Changed My Relationship With Pain

We asked our Mighty RA community to share what they wish they knew when they were diagnosed with RA bits of knowledge that might have made their path a little less bumpy, or that would have reassured them and shown them that what theyre feeling is completely normal. Consider the following list your RA cheat sheet. If youve just been diagnosed, youre now ahead of the game.

Because RA includes the word arthritis, many people assume the condition only targets the joints. However, RA is an autoimmune condition that causes inflammation not only in the joints, but other body systems as well, including the eyes, skin, mouth, lungs, heart, and blood. Fatigue and low-grade fever are also common.

[I wish I knew] how many other things apart from joints are affected. I really thought it just meant having a few stiff joints like you normally hear about arthritis but its so much more than that, it affects almost everything. Natalie P.

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Again, because of its association with arthritis, people often dismiss kids who exhibit RA symptoms. Doctors might have told you your symptoms were just growing pains or misdiagnosed you with another condition. Not only is it possible to develop RA as a child or teen, but its also common enough that theres a name for it: juvenile idiopathic arthritis. An estimated 300,000 kids and teens in the U.S. are affected by JIA, according to the Arthritis Foundation.

[I wish I knew] that young people could get it too. I kept being told I couldnt have those issues because I was too young for that and I ended up internalizing that idea. I wish someone told me illnesses dont care whether youre young or old, theyll still get you. Nicole S.

Some people find that with the right medications, their symptoms are drastically reduced, giving them the ability to lead a relatively normal life. On the other hand, certain medications can have absolutely no effect or make you feel worse. The point is, its important to take medications seriously. Dont stop taking them without a doctors approval, and know that if a certain medication isnt working for you, there may be another that will work.

Related: 7 'Red Flags' You Need a New Rheumatologist

I wish my doctor had expressed the severity of everything and that if we found the right med combo that I had a chance to go into remission. Twice I quit the meds due to side effects and I wish a nurse or someone had called me and told me the importance ofthe meds and staying under a doctors care. Meredith I.

Many people with RA find that fatigue affects their quality of life just as much as the joint pain. Fatigue can make you feel like youve run a marathon even though its only noon and prevent you from working, spending time with friends and exercising. People who dont live with chronic illnesses may think youre just tired and will feel better after a nap, but fatigue typically isnt resolved with a few extra hours of sleep.

Not everybody will understand about the rest days or the fatigue that strikes. Julie R.

[I wish I knew] that I would experience unpredictable episodes of extreme fatigue that extra rest and/or sleep will not cure. Genevieve M.

Lifestyle habits dont cause RA, and changing up your eating or exercise habits wont cure it. However, some find that eating a well-balanced, anti-inflammatory diet, quitting smoking, prioritizing sleep, reducing stress, and staying as physically active as possible helps minimize their symptoms. Talk with your doctor about strategies that make sense for your body.

Growing up I wish I had known more about implementing a healthy lifestyle (eating the right foods, staying in shape, etc.) when I was younger and it wouldnt be as hard now. Montana F.

Lets say it together: You did not cause your RA! In fact, scientists still dont know exactly what causes RA, though factors like gender, age and family history can contribute. Rather than spending energy feeling guilty about what you must have done to cause your RA, its more productive to focus on managing the condition as best you can.

[I wish I knew] that other kids had JRA as bad as I did, and that having the disease wasnt my fault. Alyson K.

There are a few blood tests physicians use to help diagnose RA. These tests look for the presence of antibodies that signify you have high levels of inflammation in your body. These tests include rheumatoid factor, anti-CCP, ESR and CRP. These tests, combined with your symptoms and imaging scans, contribute to an RA diagnosis. However, just because you do not test positive for RA, does not necessarily mean you dont have it. If you still exhibit the symptoms of RA, you might have seronegative RA, which means you dont have the antibodies that usually indicate seropositive RA. Make sure you see a rheumatologist who understands this possibility (as well as the possibility of testing positive for RA, but actually having a different autoimmune disease like Sjogrens syndrome).

Wish I knew my bloodwork didnt have to be positive to RA. Danielle F.

If you have one autoimmune disease, you are at risk for developing another (or two). Experts think genetics may be at least partially to blame since one gene could be linked to several different autoimmune diseases. Exposure to environmental factors could be another trigger. About 25% of people with autoimmune diseases have a tendency to develop additional autoimmune diseases, according to research.

[I wish I knew] that I could be more prone to other autoimmune diseases as well. I am at three now. Dani L.

Since RA causes your immune system to attack healthy tissues, some drugs treat RA by targeting the parts of the immune system that cause inflammation. As a result, a common side effect is a weakened immune system and greater susceptibility to illness since youre less able to fight germs.

If youre taking medications that lower your immune system, youll want to take steps to avoid coming into contact with germs; for example, by frequent hand-washing and staying away from people who are sick.

If anyone suggests that RA is no big deal or can be easily cured, they must not know anyone living with RA. Far more than just joint pain, the condition often forces you to limit or alter activities you used to do with ease. Its only natural to experience some anxiety and/or depression while you come to terms with your diagnosis. Theres no shame in reaching out to friends, family, therapists and/or online support groups for help.

I wish I knew my life was going to change completely. Most people dont understand what RA really does to a person. I have found people that think and they have told me that RA is curable. Its very frustrating trying to explain them. They think they know more than my rheumatologist. Janeth G.

No two people with RA are exactly alike, and one medication can work amazingly well for one person and have no effect on someone else. Thats why its important to find a rheumatologist who is willing to try different treatment options and approach your relationship as a partnership. Settling for the first rheumatologist you meet, even if they arent enthusiastic about finding the best treatment for you, could mean you miss out on helpful disease management strategies.

I wish someone would have told me that a relationship with my rheumatologist was a beneficial step in my care. Finding a rheumatologist who believes we are a team and hears me out is so important to my overall care. Knowing me as a person and not just a patient humanizes my appointments. Elaine W.

Check out these stories for more insight on RA from our Mighty community:

Tatum O'Neal's Honest Photo Reveals the Painful Side Effects of Rheumatoid Arthritis

An Important Message to Doctors Who Treat Young Patients With Chronic Illnesses

What I Want Others to Understand About Life With Chronic Illness

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11 Things People Wish They Knew When They Were Diagnosed With Rheumatoid Arthritis - Yahoo Lifestyle

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