What is RA
RA, more conventionally referred to as rheumatoid arthritis, rheumatoid disease, autoimmune arthritis or any of the plethora of other names that people use. Typically if you tell anyone you have rheumatoid arthritis they look at you somewhat quizzically and either tell you that it is an old people’s disease or that their grandmother had arthritis and she just took a few aspirin and the pain went away, no biggy.
But it isn’t an old people’s disease. Nearly half a million children in the United States have one form of RA or another. Probably a million and a half people in the United States have RA (nearly three times as many women as men and women tend to get it earlier than men… usually between the ages of 30 and 60) In women, RA most commonly begins between ages 30 and 60 and in men typically later in life than that. And the bestest of all news, if you have someone in your family (for me it was my great great aunt as far as I know) with RA (or for that matter any autoimmune disorder like juvenile diabetes or sjogrens, then you have an even greater chance of having RA.
Rheumatoid arthritis is an autoimmune disease (yeah, I know, more freaking big words). Scary as it sometimes sounds, that simply means that your body’s immune system (the intelligence inside of us all that attacks invading microbes, germs, viruses and bacteria) weirds out (yes it is a word, spell check approved it) and starts attacking your body instead of just the foreign stuff. In RA it typically attacks the joints, but it can weird out even more and attack lungs and heart.
Attacking the joints means that it creates inflammation in the joints (most typically starting in the smaller joints like fingers and toes and working its way in… also typically bilaterally but not always). Inflammation results in thickening of the tissue that lines and protects the joints (the synovial fluid) to thicken causing swelling and pain in and around the joints. The thickening fluid can cause the joints to be stiff (particularly in the morning or after being stationary for a period of time). The inflammation can, over time, cause small joints to be deformed, although this is far less common if the inflammation is addressed and the disease brought under control.
If the inflammation goes unchecked, cartilage (the elastic tissue that covers the ends of the bones involved in the joints can be damaged. Further damage can occur in the bones themselves. Joints can become loose and unstable. They can lose their ability to function normally. Joint damage can not be reversed, which is why getting early diagnosis and treatment is important.
RA typically (but certainly not exclusively) affects the fingers and toes, wrist and elbows, ankles and knees. It can affect other joints (and keep in mind that your ribs and jaw are joints) as well.
But remember a few paragraphs ago I mentioned that it can affect organs, too… it can affect cardiovascular and respiratory systems and the nervous system. This is why doctors consider it to be a systemic (anywhere in the body) disease.
But WHY ME???
It is actually a fair enough question. It is a question I have asked myself hundreds of times. Ironically enough, there are days when I finally have gotten to the point where I’ve started to more ask, why not me? Why would I expect to not have something befall me, after all, I’m not so special, and hell there are nearly a million and a half people in the United States in the same boat. That is kind of a big boat to be in.
Trying to get a number of how many people in the world are also in the ever increasing boat is a little more difficult. Digging into the statistics brought me information that about 6% of the US population has RA while 2-3% in China do.
What Causes It
Yes, there is research. Yes, if you read some of it there are huge words and very technical chunks of information that you can read to find out that there are predilections to developing RA and a higher percentage of people with RA have some commonalities but not all people with RA have those commonalities.
I’ve tried for years to figure out what I did “wrong” to cause this. So far, I’ve figured out that the only thing that all people with RA have in common is… breathing… and I’m certainly not ready to give THAT up yet.
What are the symptoms
First, let me start out by saying that, if you have met one person with RA you have met ONE person with RA. For the most part, we share a lot of symptoms, but we certainly don’t all share the same symptoms and we definitely don’t share the same symptoms in the same way all the time with everyone.
One thing we do all share, at least to one degree or another, is pain. Pain at some level, and it always makes me shake my head at the “one a scale of one to ten” questions that the doctors ask, is the one thing that we nearly all share. But what is a 5 for me might be a 3 for someone else or an 8 for even someone else. The numbering system is so relative that I just can’t wrap my head around it.
One of the keys that doctors tend to look for is, have you had joint pain or tenderness, swelling or stiffness for at least six weeks. Personally, at this point, I have had all of those but swelling for the last several years, so I guess I qualify. But… at what point do you consider, no, I’m not just getting older and therefore am having weird aches in weird places ? And for Juvenile RA, when do you not consider that it is growing pains but that is a symptom of something larger?
Can you tell I have been trying to wrap my head around this for a long time?
To add to the do you have aches and stiffness, to meet the symptoms you can find on line, the stiffness needs to last at least thirty minutes. But if I get up in the morning and take a hot shower or do some light yoga, maybe it only lasts for 15 minutes… OH crap… or if it’s chilly in the house it might last for an hour or more.. geeze..
Small joints are most often involved. Small like wrists and ankles, fingers and toes. But for me I have a problem child knee that acts up. It is the knee that I hurt when I was a teenager and I was riding on a bailer making sure the knotter tied both sides of a bale and I caught my foot and twisted my knee BADLY. That knee has always been a problem for me to one degree or another but I can picture spending twenty minutes trying to get out of the car at my son’s doctor appointment (thank goodness he was 17 and could go by himself) because of the pain and swelling in that knee) and I cringe at the symptom checker of small joints. And when you go to the rheumatologist, they always check shoulders, elbows, hips and knees, so it isn’t always the case that it is in the small joints or that it is always in the small joints.
To further complicate things, they suggest in those online check lists that the same joints are affected on both sides of the body (symmetrical or bilateral). Not for me. Yes, the wrist I broke roller blading a couple decades ago is always problematic but usually both wrists tend to hurt. And when I walk half marathons both hips hurt by the end. But is has never been my left knee that was a problem, always only my right.
So if you are checking off checklists, don’t assume that the checklists are always accurate.
If you have met one person with RA you have met one person with RA.
Symptoms can come and go. You may have periods of time (sometimes long periods of time) when you feel almost normal. You start to think, yeah, maybe I was just imagining things and everything is hunky dory. Then symptoms come back all in a rush and can last for days or weeks or months. This is what we ‘fondly’ term a flare.
If you have any questions or doubts if you might have RA or if something weird is going on in your body, talk to your doctor. It’s much better to feel a little foolish and assume that you might be over reacting than to look back decades later and think… man, if I had only gone to see the doctor THEN maybe I wouldn’t be feeling this way now.
If your body has to deal with higher levels of inflammation, it can lead to collateral problems like dry eyes (dry, irritated, higher light sensitivity) or dry mouth and mouth sores. This is often eventually diagnosed as sjogrens. You may eventually notice bumps under the skin particularly at the joint (but it is not a given that you will and if you do they may go away and come back again later). These bumps are called nodules.
Inflammation can lead to more difficulty breathing and shortness of breath. Inflammation can lead to damage of blood vessels and can affect, as a result, nerves and other organs. Inflammation can lead to anemia, which is one reason we end up having so many blood tests done, to make sure we are as healthy as possible.
But How Will I Ever Know!!!
Again, if you have met one person with RA…
Ironically, RA is difficult to diagnose in its early stages. People don’t always recognize that there might be something forever going on in their body. Sometimes it feels like you’ve been typing too much or walking too much or not getting enough rest or maybe you have the flu but it’s been stretching on for an extended period of time.
If they even vaguely believe that you might accidentally actually have something that needs to taken seriously long term, during the ensuing physical exam, your doctor will probably check your joints for swelling, redness, stiffness and warmth. She may also check your reflexes and muscle strength and ask you how long you have been experiencing this and how long you experience stiffness during most days. He will look at your overall health and medial history, ask about your family history (RA and other somewhat related auto-immune disorders tend to sometimes but not always be hereditary) and will continue to poke and prod. It’s what doctors do. For me, by the time I went to see my family doctor, I had nodules (bumps that could vaguely look like really big cysts and that can take up residence on your knuckles… they happen to roughly 40% of us lucky buggers with RA) and she took one look and sent me to get blood work done.
You will likely get a bunch of blood work done. There are inflammation markers that they look for in the blood work. BUT, these can come back within the normal range (which can lead to it taking longer to find out what is going on in your body) because some people never have it show up in the blood tests. They are considered to be seronegative but have RA just the same. People with RA often have, but not necessarily, an elevated erythrocyte sedimentation rate (ESR, or sed rate), we might or might not have a higher than normal C-reactive protein (CRP) level… this may indicate the presence of an inflammatory process in the body. You probably also will have other common blood tests look for rheumatoid factor and anti-cyclic citrullinated peptide (anti-CCP) antibodies.
More likely to show what it really going on in your body are the x-rays, MRIs and possibly CT scans that they will also order. These will be less likely to prove that you have RA but will show the current baseline extent of the damage that the disease has caused in your joints. X-rays of hands and feet, ankles (and maybe knees), wrists… I also had x-rays of my neck and cervical spine. I’ve had MRIs on my lower back (that ironically diagnosed a massive fibroid tumor that resulted in my hysterectomy) as well as my wrists and ankles.
Make sure that you get copies of your medical records. Not because you’re likely going to get a better answer later, but because you can use these records as kind of an adventure story of your new adventure. You can look back at where you have come from and how you have gotten to wherever it is that you’re going to be when you’re ready to actually start looking at it.
Seriously though, you need to keep your medical records. You never know when you’re going to need them. You never know when you’re going to end up having to find a new doctor because you’ve changed insurance companies or companies where you work or you need to justify why you need to apply for disability. If you have the documentation, you don’t have to figure out how to recreate your history by paying past doctors to back trace your current adventure.
But… what happens when all of the tests turn up absolutely nothing?
Yeah, it can happen. You can go through test after test for months or years only to find out that maybe or maybe not you have any results. Do not give up trying to get answers even if answers aren’t really quickly forthcoming.
Someone I used to work with suffered for several years and doctors couldn’t tell her anything at all but guessed at diagnosis’s and ran test after test after test. It finally got bad enough that she had to take a stint on disability and that was when she was finally diagnosed as seronegative RA. She was very dedicated to reading everything she could about the alternative treatments and finally settled on one that worked for her with the minimal chance of terrifying things happening. It helped but after several years of active RA she was still in pain but back to work.
Seronagative RA happens when patients have all of the tests for RA and none of the blood tests look like they are perfectly fine but they have all of the same symptoms of the people who have the blood tests to prove that they aren’t crazy.
Seronegative means that elevated antibodies are not present but that might just mean that any given person might have a different level of ‘normal’ and they probably actually do have an elevated level. Many seronegative patients actually go on to develop elevated levels and their diagnosis changes from seronegative to seropositive any way.
TRACK YOUR SYMPTOMS… If you are having joint pain and stiffness, swelling, tenderness and redness make notes. Cell phones are a great way to track it. Keep track of whether or not your symptoms are bilateral, on going, or affecting multiple joints. If you have morning stiffness that lasts more than thirty minutes, put it in a notebook or a document on your phone. If you have noticeable inflammation, make note. If you are more fatigued that you think is actually attributable to over working or staying up late, make note. Eye redness (or dryness)? make note. Keep records. And find your own “on a scale of 1 to 10 pain scale and use your own scale to track your symptoms.
Notice any recurring phrases? Once you are diagnosed or even think you might possibly have something weird going on in your body… make notes, keep track. At the very least you can remind yourself when you talk to your doctor and you will be able to convince your own mind that you’re not smoking something good and that you also are not crazy.