JRA.... Journal of a Radical Arthritis Chick

Here I give advice, speak of my experiences and give information to those who want to better understand Rheumatoid Arthritis. I am NOT a medical professional, and you should always seek advice from a doctor.

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Location: MA, United States

Hello everyone! I am 28 years old and was diagnosed with JRA (Juvenile Rheumatoid Arthritis) when I was just 3 years old. I've had my battles with this disease over the years, and have decided to create a blog. I want to share my stories and adivce with other RA chicks, or anyone interested, to raise awareness and get insight from others. Feel free to comment/question me about anything. Thanks, and I hope you enjoy!

Tuesday, March 29, 2011

Crohn's Disease

Since I did my last blog on IBS, and referred about Crohn's disease, I figured I'd continue with the digestive tract and start a blog on it.  First off, Crohn's disease is a form of inflammatory bowl disease (IBD) that usually affects the intestines, but can occur anywhere from the mouth to the end of the rectum.  The exact cause of Crohn's is unknown, but it is linked to the body's immune systems.  In some cases, it can be linked or seen along with Rheumatoid Arthritis, in fact in 25% of people who have Crohn's, they also have RA.  They are not sure how this happens, but Crohn's disease attacks the body the same way that Rheumatoid Arthritis, it's yet another autoimmune disease.

An autoimmune disease, is when the body can't tell the difference between normal body tissue and foreign substances.  When this happens, it cause an overactive immune response that results in inflammation, in Crohn's disease the intestinal wall becomes inflammed and thick.  It's a chronic condition that can occur anywhere along the digestive track, affecting the the small intestine, the large intestine, the rectum, or the mouth. 

While the exact cause of the disease is unknown, there are different factors that can contribute to the cause.  A person's genes or environmental factors can cause it, one's body may be overreacting to normal bacteria in the intestines.  The disease can occur at any age, but is most commonly seen between the ages of 15-35.  Risk factors include: smoking, family history and Jewish ancestry.

What are the symptoms of Crohn's?  Symptoms vary depending on what part of the intestinal tract is affected, they can range from mild to severe and can come and go in flare-ups and periods of no symptoms at all.  Symptoms include: crampy stomach pain, fever, fatigue, loss of appetite, pain with passing a BM, persistent diarrhea, unintentional weight loss, constipation, eye inflammation, joint pain, liver pain, swollen gums and many more. 

Tests that are done to determine if it is Crohn's or not, usually starts with a physical exam.  Other tests include: Colonosopy, CT Scan, Endoscopy, and also a stool sample.  These are just some of the tests that may be done to see what is going on inside your digestive tract. 

How is Crohn's treated?  Some people claim diet and nutrition can play a role, but there is no specific diet that has been proven to worsen the symptoms.  There are certain foods that can make diarrhea and gas worse, so your doctor will tell you which foods to avoid, especially during flare-ups.  Foods of that nature include: fast food, caffeine, high-fiber, heavy cream, spicy foods and dairy.  Stress is a big trigger for symptoms, so finding a balance and stress reliever can help. Exercises like Yoga or meditation can help relax your body during stressful situations.  Some cases can be treated with medications, which are pretty much all the same used to treat RA also.  These medicines include: Corticosteroids (like prednisone), biologics (like Humira or Remicade), or Aminosalicylates.   If medication does not work, surgery may be needed in some severe cases. 

Sadly, like all auto-immune diseases there is no cure for Crohn's.  It's important to bring up any digestive problems with your doctor.  I know I probably sound like a broken record saying that in every blog, but I just know some stubborn people who ignore symptoms and it ends up hurting them in the end.  It does suck being on so many medications at once, and it seems like one your diagnosed with one disease you just end up with more.  However, I'd rather take a bunch of meds now, and prolong my life and be able to enjoy it the best I can, than suffer in pain and sickness and be miserable. So, please don't be afraid to speak to your doctor!  Thanks again for all those who read my blog.  I will be taking the next week off, because I have an RA friend coming to stay with me.  Cheers and hugs to all! :o)

Wednesday, March 23, 2011


Today, I had an appointment with my Rheumatologist in Boston today, which is about an hour and a half away from me.  I was so worried about the coming snow, that I didn't sleep well.  However, I totally lucked out and made it to my appointment, ran some errands and home without seeing a single flake!  It started snowing about an hour after I got home, thankfully! Okay, let's move on to the actual appointment.

First, I found out I've lost 5lbs, yay! Then my doctor and I discussed different treatment options for my RA and my Osteopenia.  Let's start with the RA --He suggested that before moving onto to a completely new medicine, we should try and exhaust all our options with my current medicines.  The reason being is, as he called it, "you're an interesting case".  I've always had a tough time controlling my RA over the years, and have had adverse reactions to many medicines.  So, we agreed upon staying on Humira and Methotrexate and trying the MTX injections instead of the pills.  He explained that when you take the pills, even if you are given 20mg, because of stomach acids, your body really only absorbs 12-15mg.  Whereas the injection, your body absorbs it all.  So we will try that out for 6 weeks, and go from there.

As for the Osteopenia, my Rheum suggested to me that most medicines they prescribe for it, will make it so I won't be able to have children.  He knows I'd like to try and have one someday, so he said he couldn't do that to me.  He asked me to make an appointment with an Endocrinologist, one he knows who specializes in cases like mine.  I have an appointment with her on April 14th.  I also have an appointment with the Gastrologist on April 7th to see about my stomach issues.

Overall, it went okay and I just have to wait and see if the medicines work out or not.  I feel better trying with the MTX than something completely new, because of my history of reactions.  I will keep everyone updated, especially after my appointment. Thanks for everyone who reads my blogs!  Just a heads-up, that I may not post any blogs for a week or so.  I have a friend (another RA chick!) coming to visit and stay with me for a week, I don't wanna be occupied while she's here, but I will resume after she returns home.  Thanks again everyone!!

Saturday, March 19, 2011

Irritable Bowl Syndrome (IBS)

For the past 5 months or so, I've been experiencing these awful cramps in my lower abdomen.  I've also been experiencing frequent diarrhea, and time of constipation.  I saw my PCP about it and she said she believes it could be IBS or something else, since there are hundreds of different types of digestion problems.  I was referred to see a Gastrologist on April 7th so he can better diagnose me.  In the meantime, I've started a journal and everyday I write down whether or not I experience any pains and record my BMs.  Hopefully this will help him diagnose me and I can find relief because these pains are so severe, I sometimes vomit.  Since I don't really know too much about IBS, I figured why not write a blog on it!

IBS or Irritable Bowl Syndrome, is a disorder in which a person experiences severe abdominal pain, cramping, and changes in bowl movements.   It's a disorder that affects the large intestine or the colon.  Thankfully, despite all of the symptoms associated with IBS, it does not damage your colon.  This is not to be confused with IBD or Irritable Bowl Disease, which includes Crohn's disease and Ulcerative colitis (I will be writing a blog on this in the future). 

Symptoms of IBS vary from person to person from mild to severe, most cases are mild.  Symptoms include abdominal pain, fullness, mucous in the stool, gas and bloating that are present for 6 months or more.   The pain will often come after meals, come and go and is relieved after having a bowl movement.   People will also experience both diarrhea and constipation, or have one occur very often.  People who experience having diarrhea, often have loose, watery bowls and is sometimes hard to control.  The people who are experiencing constipation will have a lot of difficulty going to the bathroom, straining to go and will go a lot less often than normal.  Most times they don't go at all, or a very small amount comes out.  Most people's experiences with IBS can be mild, but other severe cases the pain can be very disabling. 

What causes IBS? It's tough to pinpoint exactly what causes this to happen in some people.  According to the Mayo Clinic "The walls of the intestines are lined with layers of muscle that contract and relax in a coordinated rhythm as they move food from your stomach through your intestinal tract to your rectum".  When you have IBS, the contractions are longer and stronger, causing the food to be moved through your intestines at a more rapid rate, and causing the pain, gas and/or diarrhea.   In other cases, the food is passed through a lot more slowly, causing the food to become hard and dry, thus leading to constipation. 
Like I said before, there is no known cause for IBS to occur, but certain things in the environment make it worse.  Certain foods like milk or alcohol, stress, hormones and/or other illnesses can make IBS happen to someone, or make it worse.   IBS can appear at any age, but is most common in adolescence and young adults, and is more often seen in women.  It is said that 1 in 6 Americans in the U.S. have Irritable Bowl Syndrome.

How to test for IBS?  IBS is usually diagnosed based just on symptoms, in some cases only small testing is required.  The tests that are usually done, are used to rule out other causes.  Normal tests usually include:  a blood test, a complete blood count or CBC is usually done to test everything,  a stool sample (to test for blood in the stool or infection), a Flexible sigmoidoscopy, which allows a health professional to look inside the lower part of the large intestine for abnormal growths, inflammation, bleeding, hemorrhoids, and other conditions, and a colonoscopy which allows to doctor to look at the entire lining of the large intestine.   If these tests are still inclaclusive, further testing may need to be done to make sure there isn't something else going on since there are many, many different types of digestive problems that can occur.

Treating IBS is usually simple, it requires change in diet and exercise, or in rare cases medication may be prescribed.  There is no cure, so eating simple foods and avoiding foods that upset your stomach is best.  Most doctors suggest starting a food journal, start jotting down what you eat each day, along with your symptoms and see if you see any patterns.  You may come to realize what foods are causing you pain, foods that doctors recommend you avoid and are common triggers of IBS are: caffeine drinks such as soda, coffee or tea, milk products, chocolate, alcohol or wheat.  Fiber is very helpful in helping IBS symptoms because it helps the intestine's work.  There are two different types of fiber: Soluble fiber which helps both diarrhea and constipation. It dissolves in water and forms a gel-like material. Many foods, such as apples, beans and citrus fruits, contain soluble fiber.  Insoluble fiber which helps constipation by moving material through your digestive system and adding bulk to your stool. Insoluble fiber is in whole grain breads, wheat bran and many vegetables.  Adding fiber to your diet can be very beneficial to you, but add it slowly to your diet, because if you add too much too fast, it can cause bloating and gas.   If this does occur, it usually goes away with time as your body gets used to using the fiber, just be careful and take it slow.  According to Family Doctor "If your symptoms are severe, your doctor may prescribe medicine to help you manage or lessen your symptoms. For example, if your main symptom is pain, your doctor may prescribe antispasmodic medicines such as hyoscyamine or dicyclomine to reduce cramping. Heating pads and hot baths can also be comforting. If diarrhea is a frequent problem, medicine such as loperamide (brand name: Imodium) may help.Your doctor may give you tranquilizers or sedatives for short periods to treat anxiety that may be making your symptoms worse. Your doctor may prescribe an antidepressant for you if your symptoms are severe and you are feeling depressed."

IBS isn't a serious condition, and can easily be treated, but if you are experiencing any kind of digestive issues, it's very important to seek medical attention.  Most digestive problems have very similar symptoms, so you never know, what you're brushing off as "just pain" could be some underlying condition.  Again, good luck to all and thanks for reading my blog!!!

Monday, March 14, 2011


I always got sick as a kid, always had bad infections and it took more than one course of antibiotics to treat them.  As I got older, the infections started to get worse, and harder to control.  I had sinus infections twice a month, I had double ear infections for 5 months straight (I almost had to have tubes as an adult).  Then, I ended up with double pneumonia for 6 months straight, I was put on every antibiotic known to man, and it seemed to just be getting worse.  Finally, after they found out what was wrong, I was able to recover.  I was seen by an immunologist, and he ran some tests on my immune system, because it obviously wasn't working correctly.  I found out I have an IgA-deficiency, an anti-antibody to immonoglobulin A and an IgG subclass 2 deficiency.  What the heck does all of that mean?  Well, I'll explain, and this is what my blog is on today.

First off, what exactly is an antibody?  Antibodies or immunoglobulins are proteins in the body that guard against invading organisms or substances.  Basically, they attack viruses and illnesses to help them go away, our very own antibiotics, so to speak.  There are five types (classes) of immunoglobulins or antibodies in the blood: IgG, IgA, IgM, IgD, and IgE. The immunoglobulin class present in the largest amount in blood is IgG, followed by IgM and IgA. IgD is much lower, and IgE is present in only minute amounts in the blood.  Out of these classes, it is primarily IgG and IgM that protect us from infection. 

One of the most important jobs of protecting the body, is protecting the mucous membranes from the environment.  Mucous membranes are openings in our body that are easily exposed to the environment, they include: mouth, ears, sinuses and nose, throat, airways within the lung, gastrointestinal tract, eyes, and genitalia.  IgA is secreted to those areas, and it is the A antibodies job to protect those areas, other immunoglobulin classes are also found in these areas, but not in nearly the same amount as IgA.   If you were to take our A antibodies that are present and protective in these locations, they would equal one-and-a-half tennis courts.  So the importance of the IgA is very important.

A person with an IgA-deficiency, like me, has no immunoglobulin A to speak of.  In fact, in my case, my body has built up a resistance to A, known as an anti-A-antibody.  An antibody against another antibody, yes that's true, hopefully not too complicated to understand.  My body sees IgA as a foreign substance, if I were to get any, like in a blood transfusion, I'd go into anaphylactic shock.  There is no way to get these antibodies back, and leaves one immune system at risk.  Most doctors don't understand why this happens, there is no known cause.  My doctors believe it could be from years of being on immuno-suppressant medicines for my Rheumatoid Arthritis. 

What are symptoms of having an immune deficiency or how do you even know if you're immune system is missing some of it's important antibodies?  Most people don't experience any symptoms at all, and can go through life having no idea.  My doctors said that I could have had this deficiency for years, there's no way to pin-point when it occurred first.  Other than that,  the most common way to tell is recurrent infections or infections that seem to take more than one course of antibiotics to treat it, both of these happening very often.  The infections that may ocur often are: Bronchitis, recurrent diarrhea, conjunctivitis, mouth infection, ear infection, pneumonia, sinus infection, skin infections, or an upper respiratory infection.  Also, an IgA deficiency can be hereditary, so if it runs in the family, it's a good idea to get tested. 

How do you know if you have an immune deficiency?  If you are experiencing repeat infections, that never seem to go away, it's a good idea to talk to your doctor about it, especially if you're on immuno-suppressant medications.  To test for an immune deficiency is actually very, very simple.  The only way to test to see if a patient has an immune deficiency, is a blood test.  It's just normal blood tests that are taken, and they measure the levels of antibodies in your blood.  Next, they'll give you a vaccine like the flu or pneumonia vaccine and then re-test your blood in due time to see if your body responds to the vaccine as it would to a virus or foreign substance in your body.  If your body is working correctly, your anti-bodies will be elevated after the vaccine, to ward off the bacteria or virus present in the body.  That's how they tested mine, I found out vaccine's don't work on me, since my body doesn't have the antibodies to build up against a virus.  It's as simple as that!

How do you treat something like this? There is no specific treatment, it depends on the person and varies case by case.  Most people just have to go on extra courses of antibiotics when sick.  However if those with selective IgA deficiency who also have IgG subclass deficiencies (like myself) can benefit from immunoglobulin treatments.  My doctor has gone with two different courses of treatment.  I take the antibiotic Azithromycin 500mg, once a week and I also take something called Hizentra.  Hizentra (immune globulin) is a sterilized solution made from human plasma, that contain antibodies (but not A).  It is given subcutaneously, once a week.  As you can see in the photo, there are two needles that look like IVs in my tummy.  Yes, that's me, giving myself my Hizentra.

There is no cure, but some people who just have a low amount of a certain antibody, are able to get them back with medication, or time.  In rare cases, like mine, the body builds an immunity to those antibodies, making the immune system all the more vulnerable.  It puts your body at even more of a risk if you have to be on immuno-suppressant medications for illnesses like Rheumatoid Arthritis.  I have to be extra careful with germs, and have to be on the medicine regime of the Hizentra and antibiotics for life.  It makes going out into public, and seeing friends very difficult, but it's another lifestyle you just have to learn to adapt to.   This is something I had never heard of before being diagnosed.  I think it was important to do a blog on this topic, because you never know who could be experiencing this and have no idea that they could possibly get some help.  As always, I hope my blog was useful and can help others learn a bit more of rare or different things out there.

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Saturday, March 12, 2011

Osteopenia and Osteoporosis

I recently found out that I'm Osteopenic in my neck and right hip.  I had never heard of it before, until I received my bone density scan results in the mail.  Since those with RA are more prone to getting Osteopenia and Osteoporosis, I figured it was time to do a blog on both. 

If you don't already know, patients who have RA, are at risk for these because inflammation untreated and being on prednisone for a long time, can cause some bone loss.  I've been on and off prednisone for almost 23 years, and my rheumatologists have had a hard time controlling my JRA since I was 3.  Because of that, I've had inflammation many times and each time I was put on prednisone since it's the only thing that works.  For those who don't know, prednisone is corticosteroid tablet that is used as a short-term medicine only, because of it's long term side effects, like bone loss.  Let's take a look at what Osteopenia and Osteoporiosis actually are, and how they affect us.

Osteopenia is diagnosed when the bone mineral density (BMD) is lower than normal, but not low enough to be Osteporosis.  Bone mineral density is a measurement of the level of minerals in the bones, which indicates how dense and strong they are.   If your BMD is low, compared with others, than you are considered osteopenic and are are a greater risk, as time goes on, of developing osteoporosis.   As you get older, your bones naturally become thinner because existing bones cells are absorbed into the body faster than new bone is being made.  When this occurs, the bone loses mass, structure, and minerals, making them weaker and more prone to breaking or fracturing.   Bone loss beings at age 30, when your bones have reached their peak BMD.  The stronger your bones are by the time you're 30, the less likely you are to develop osteopenia or osteoporosis. 

Osteopenia is more common in women, than men because, women have lower BMD and bone loss speeds up when hormonal changes take place, like menopause.  In both men and women different factors can contribute to osteopenia, such as: Eating disorders, or metabolism troubles that don't allow the body to absorb or take in vitamins and minerals. Chemotherapy, or medicines like steroids used to treat certain conditions like Rheumatoid Arthritis.  Exposure to radiation.  Other conditions such as family history, being Caucasian or Asian, limited exercise, smoking, drinks lots of soda and alcohol. 

Osteopenia is treated by taking action to help prevent it from turning into osteoporosis.  Treatment includes change in diet, like adding more calcium enriched foods. Foods that are rich in calcium include cheese, ice cream, leafy green vegetables (spinach is my favorite), low-fat milk, Salmon, Sardines (with bone), Tofu and yogurt.   Your doctor may also recommend you go on a Vitamin D supplement, since vitamin D helps your body absorb calcium into the bones.  It's important to get at least 1,200 milligrams per day of calcium and 800 - 1,000 international units of vitamin D3. Weight bearing exercises, and sometimes medicine, like Boniva, is used especially if the risk of getting osteoporosis is high.

Osteoporosis, is severe thinning of the bone tissue and bone mineral density over time.  It's estimated that 1 in 5 American women over the age of 50 are diagnosed with Osteoporosis.  "Calcium and phosphate are two minerals that are essential for normal bone formation. Throughout youth, your body uses these minerals to produce bones. If you do not get enough calcium, or if your body does not absorb enough calcium from the diet, bone production and bone tissues may suffer." (Med Health)   This happens over time, and since Osteoporosis has no symptoms, it's usually not detected until one falls and fractures a bone.  This is why early testing is very important, as well as early treatment, even diet changes, can help huge in the long run.

Osteoporosis is treated in similar ways as Osteopenia, and the main goal of both is to slow down or even stop the progression of bone loss.  Change in diet is also used to treat Osteoporosis, as you can see above.  Bisphosphonates are the most common used medications given.   These medications are taken in pill form and they include alendronate (Fosamax), ibandronate (Boniva), and risedronate (Actonel). Most are taken by mouth, usually once a week or once a month.  Bisphosphonates can also being given intravenously, but that is rarely the case.   There are many other medications used as well like nasal sprays and hormone replacement therapy, but are less common.

Exercise is another very much recommended mode of treatment, it helps prevent fractures.  Weight-bearing exercises such as jogging, playing tennis or dancing; Resistance exercises like free weights and stretch bands; Balance exercises like yoga or tai-chi; riding a stationary bike or using rowing machines. These help strengthen the bones and muscles to prevent fractures.  It's important to know that if you are at risk, don't do any exercise that you are at risk of falling, you could end up hurting yourself worse.

It's important to follow your doctors orders if you are diagnosed with either of these bone loss disorders.  If left untreated, you could end up with a compression fracture of the spine, disability caused by severely weakened bones, hip and wrist fractures, and the loss of the ability to walk due to a hip fracture.   Call your doctor if you have any of these symptoms.

There are steps to take to prevent either Osteoporosis or Osteopenia from occurring, even if you are at risk.   Eating a diet that is rich in Vitamin D and calcium is one sure way to prevent it.  If you're not sure you're getting enough, talk to your doctor about taking Vitamin D and Calcium supplements.  Other ways to prevent bone loss is avoiding drinking access alcohol, don't smoke and get regular exercise.  Following these simple steps can help you lead a healthy life.

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Wednesday, March 9, 2011

When will it end?!

This isn't an informational blog, it's just one with me venting and letting my frustrations out.  I know most of my readers can understand.  It's just something I need to do.

Well yesterday I thought I was finally feeling a bit better, and that finally my MTX and Humira combo was working.  I was feeling pretty good, but last night my elbows kept stiffening up on my, causing me to not sleep so well.  I woke up about half hour ago, and my fingers, elbows, knees, neck and jaw are all bad again.   I think it's safe to say that after being on Humira for 6 years, and MTX for 6 months (with slow increase of dosages from 10-20mg), it's not working.  I think I'll finally cave and start the prednisone.  When I see my rheumy on the 23rd, we'll discuss new treatment.  It's just frustrating that after almost 23 years, most of my life, I can't find any relief.  I'm starting to feel real down on myself, between not being able to work, having diseases that are frustratingly hard to control, and being diagnosed with something new every year it seems.  I feel like my body is falling apart.  Just in the last month I'm being diagnosed with 2 new problems.  I have so many I've lost count....I'm up to 8 or 9? Ugh.  When will it end?!

I just feel like the increase of my problems seems to be on the rise.  It started with my JRA and Uveitis when I was 3, then glaucoma and ptosis a few years later, then dysmenhorrea & fibromyalgia when I was 12, then asthma when I was 13, then I had a little bit of a break and 2 years ago I was diagnosed with an IgA-deficiency, last week Osteopenia and now something is wrong with my digestive system.  I'm just sick of it, plain and simple, I'm sick of being sick! 

I'm frustrated and stressed, which I know is not good for me at all and will only make things worse, but it's hard not to feel this way.  I'm usually a really strong person and can handle anything that comes my way, but the past two years, more has happened to me than I can even being to handle.  Starting in October 2009 when my mom was diagnosed with breast cancer, in November I had to stop working because I was so sick (had pneumonia for 5 months & swine flu), then in Jan I was diagnosed with my IgA-deficiency and my dad went to rehab for his alcoholism for 2 weeks.  July my mom went into surgery for her cancer, and a week later my dad ended up in the ICU in the hospital.  August my dad passed away, which to this day I still can't comprehend that he's gone, I can't.  September my moms cancer came back and had to have radiation (she is cancer free now, yay!).  Never mind all my health problems on top of all this.... it just seems never ending lately. 

I just want  a break, something good to happen for once, for me to feel even just okay for one day.  Is that too much to ask?! I'm starting to just feel so down, sad, and beaten.  I've worked so hard my entire life to NOT feel this way, to not be beaten by something I have no control over....but at this point I'm not sure what I was fighting for. 

Monday, March 7, 2011

Low fevers and RA

Thank you Brenna for suggesting this as a topic for my blog!  Have any of you noticed that you have a low fever?  Even when I'm sick, I don't tend to run fevers.  I thought it was odd, and found out from talking to fellow RA sufferers, they are the same.  I wanted to take the time to do some research into this matter, and of course, share it with all of my readers!

 I did a poll among friends, and fellow RA sufferers to see what temperature they normally run.  I was curious with the results and wanted to start off by sharing them with you.  Me: 97.6°, Melanie: 96.7°-97.1°, Marie: 97°, Hannah: 99°, Brenna: 97.6°-98.1°.  Most of us seem to run on the lower side.

First off, a fever of about 99°F or higher usually means there is an infection in the body.  As soon as the cause of the fever is found, and treated, the fever should go away.

An autoimmune disease is when the body’s immune system goes wacko and attacks itself, destroying normal tissues as if it were a foreign substance, basically like a virus.  When this happens, the body reacts as it normally would during a virus, including a fever.  A chronic fever, even low-grade, is very common among those who have an autoimmune disease.   Patients with rheumatoid arthritis often experience a low-grade fever when there is inflammation and pain present.   A true high fever, one ranging 100.4° F or higher, is not normal for RA, this usually indicates an infection is present.  Patients with RA are at an increased risk of infection, so when you have a high fever, you know something is wrong.  If you are running a fever of 101°F or higher, it is advisable to call your doctor right away.   
Typically, we experience fevers, even low ones, when there is a flare present.  It varies by person, some run low, some run high, but there is more to it than that.  After reading through some articles, I found out that not only having RA can cause low-grade fevers, but NSAIDs as well can be the culprit!  Think about it, when you aren’t feeling well most people take Tylenol® or Advil ®, which are used to lower one’s fever.  NSAIDs are used as treatment for rheumatoid arthritis, and while reading through side effects of medications like aspirin, and prednisone, low fever was one of them!  It was advised that if you are running a low fever, to avoid these medications , because having a low fever is actually not good for you.
Having a low fever may attribute to some of our symptoms and daily lives.  Having a low body temperature can cause things like: Fatigue, headaches, migraines, PMS, easy weight gain, depression, irritability, fluid retention, anxiety and panic attacks, hair loss, poor memory, poor concentration, low sex drive, unhealthy nails, dry skin and hair, cold intolerance, heat intolerance, low motivation, low ambition, insomnia, allergies, acne, carpal tunnel syndrome, asthma, odd swallowing sensations, constipation, irritable bowel syndrome, muscle and joint aches, slow healing, sweating abnormalities, Raynaud's Phenomenon, itchiness, irregular periods, easy bruising, ringing of the ears, flushing, bad breath, dry eyes/blurred vision, and more. 
Our body depends on certain enzymes to keep it running properly.  When our temperatures run high, or low, the enzymes go along with it.  In order to maintain normal function, or body temperatures must remain in the normal range, otherwise they cause symptoms like the ones listed above.
Unfortunately, there wasn’t too much information about those with RA and low fevers.  It seems that having a flare, and/or some of our medications seem to be the cause of it.  I’d advise that if you seem to run really low, bring it up to your doctor and see what he or she has to say about it.  Maybe it’s your medication, or maybe it’s a sign your medication isn’t working, or maybe it’s just normal for us to have low fevers.  Hopefully in the future, there will be more research into this.

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Friday, March 4, 2011

Carpal Tunnel Syndrome

As if having one disease is bad enough, most RA sufferers also have to worry about other illnesses they have as well.  Personally, I suffer from at least 7 different ailments.  A few people very close to me suffer from Carpal Tunnel Syndrome, I know a little bit about it, but not too much. So, since I'd like to know about what my family and friends suffer from, I figured it'd be a great topic for my next blog post.

First off, the carpal tunnel is a passageway in the wrist through which nerves and the flexor muscles of the hands pass (see the photo to the left).  The tunnel consists of bones and connective tissue. Several tendons and a nerve pass through it.   The canal is narrow and when any of the nine long flexor tendons passing through it swells or degenerates, the narrowing of the canal often results in the median nerve getting entrapped or compressed, a medical condition known as carpal tunnel syndrome.

The median nerve controls the feelings of sensation on the palm side of the fingers and thumb, but not the pinky finger.  As well, it controls impulses to some small muscles in the hand that allow the fingers and thumb to move. The carpal tunnel, a narrow, rigid passageway of ligament and bones at the base of the hand, houses the median nerve and tendons. Sometimes, thickening from irritated tendons or other swelling narrows the tunnel and causes the median nerve to be compressed. The result may be pain, weakness, or numbness in the hand and wrist, radiating up the arm.

Symptoms of carpal tunnel include frequent burning, tingling, or itching numbness that occurs in the palm of the hand and fingers, especially the thumb, index and middle fingers.  These feelings start slowly, and gradually increase with time.  Some carpal tunnel sufferers say their fingers feel useless and swollen, even though little or no swelling is apparent.  It usually starts at night, in one or both hands, since most people sleep with flexed hands.  Usually the person wakes up with the need to "shake out" the hand or wrist.  As the symptoms worsen, people will feel the tingling during the day as well.  This syndrome can also cause a decreased strength in grip, which will make it difficult to form a fist, grasp small objects and even perform normal tasks.  In chronic, and untreated cases, the muscles at the base of the thumb may waste away.

Carpal Tunnel Syndrome is caused by a combination of factors that increase pressure on the median nerve and tendons in the carpal tunnel, rather than a problem with the nerve itself (see photo to the right).  In most cases the disorder is due to the fact that the carpal tunnel is simply smaller in some people than in others.  Other contributing factors include trauma or injury to the wrist that cause swelling, such as sprain or fracture; over activity of the pituitary gland; hypothyroidism; rheumatoid arthritis; mechanical problems in the wrist joint; work stress; repeated use of vibrating hand tools; fluid retention during pregnancy or menopause; or the development of a cyst or tumor in the canal. In some cases no cause can be identified.

Who is at risk for developing Carpal Tunnel Syndrome? Women are three times more likely than men to develop carpal tunnel syndrome, perhaps because the carpal tunnel itself may be smaller in women than in men. The dominant hand is usually affected first and produces the most severe pain. People with diabetes or other metabolic disorders that directly affect the body's nerves and make them more susceptible to compression are also at high risk. Carpal tunnel syndrome usually occurs only in adults.

How is Carpal Tunnel Syndrome diagnosed? First a physical examination of the hands and wrist are done to rule out any other underlying causes.  The wrist is examined for tenderness, swelling, warmth, and discoloration. Each finger should be tested for sensation, and the muscles at the base of the hand should be examined for strength and signs of atrophy. Routine laboratory tests and X-rays can reveal diabetes, arthritis, and fractures.   I also found this from a Carpal Tunnel website: "Physicians can use specific tests to try to produce the symptoms of carpal tunnel syndrome. In the Tinel test, the doctor taps on or presses on the median nerve in the patients wrist. The test is positive when tingling in the fingers or a resultant shock-like sensation occurs. The Phalen, or wrist-flexion, test involves having the patient hold his or her forearms upright by pointing the fingers down and pressing the backs of the hands together. The presence of carpal tunnel syndrome is suggested if one or more symptoms, such as tingling or increasing numbness, is felt in the fingers within 1 minute. Doctors may also ask patients to try to make a movement that brings on symptoms."

How is it treated?  Immediate treatment includes immobilizing the wrist for at least two weeks.  Avoiding activities that may further injure the wrist, and wearing a splint helps keep the wrist from moving and twisting.  Also, applying ice helps alleviate any swelling.  There is also some medications that are used to treat CTS in severe cases.  Nonsteroidal anti-inflammatory drugs, such as aspirin, ibuprofen, and other nonprescription pain relievers, may ease symptoms that have been present for a short time.  Corticosteroids (such as prednisone) or the drug lidocaine can be injected directly into the wrist or taken by mouth (in the case of prednisone) to relieve pressure on the median nerve and provide immediate, temporary relief to persons with mild or intermittent symptoms.  Additionally, some studies show that vitamin B6 supplements may ease the symptoms of carpal tunnel syndrome. 

In serious cases, surgery may be required to treat the Carpal Tunnel Syndrome.  There are a couple different types of surgery.  Open release surgery, the traditional procedure used to correct carpal tunnel syndrome, consists of making an incision up to 2 inches in the wrist and then cutting the carpal ligament to enlarge the carpal tunnel. The procedure is generally done under local anesthesia on an outpatient basis, unless there are unusual medical considerations. Endoscopic surgery may allow faster functional recovery and less postoperative discomfort than traditional open release surgery. The surgeon makes two incisions (about ½" each) in the wrist and palm, inserts a camera attached to a tube, observes the tissue on a screen, and cuts the carpal ligament (the tissue that holds joints together). This two-portal endoscopic surgery, generally performed under local anesthesia, is effective and minimizes scarring and scar tenderness, if any. Single portal endoscopic surgery for carpal tunnel syndrome is also available and can result in less post-operative pain and a minimal scar.  It generally allows individuals to resume some normal activities in a short period of time.

Surgery may relieve most symptoms right away, but a full recovery from carpal tunnel surgery can take months. Since it is surgery, an open wound, normal complications after surgery could be infection, nerve damage, stiffness, and pain at the scar. Since the carpal tunnel ligament is cut, some patients may lose their strength in that wrist. Physical therapy after surgery is a must, to help restore that wrist's strength. Some patients may need to adjust job duties or even change jobs after recovery from surgery. Recurrence of carpal tunnel syndrome following treatment is rare. The majority of patients recover completely.

Since Carpal Tunnel Syndrome is a serious and debilitating disease, especially if left untreated, you should see a doctor right away if you have any symptoms of it.  I know a few people who suffer from this disease, and it has affected their lives very much so.  A friend of mine had to have surgery for her Carpal Tunnel Syndrome in both of her hands, back in 2009.  She also has RA, so to have both at such a young age, must be tough.  She is a tough cookie though, she works and is in her first year of college.  A lot to go through, but she manages well.  The key to any illness is to stay strong, and always get treatment at the first sign of any symptoms.

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Tuesday, March 1, 2011

A day in the life of a Rheumatoid Arthritis sufferer...

So I'm not a big complainer, and most of my blogs are informational, but I'd like to start sharing more of my experiences as well.  Part of the reason I created this blog, was to spread awareness about this disease, especially with those who do not understand it.  It's very hard to explain how this disease makes me feel to my loved ones, especially if they do not experience it first-hand.  I try all I can, and some try to understand, but no one will know unless they are going through it themselves.  I hope that by explaining what I go through, and how I feel, will help shed some light on those ignorant of this disease.  I've had a few family members thank me for writing this, because they said they can understand it better.  Which is great, and I only hope it helps others.  I also hope to share my experience with those who have RA, and are new to it.  I've had many "newbies" ask me a lot of questions, since I've had it for so long.  I'm no expert, but I've dealt with this disease long enough to know a lot about it.  I love answering any questions that I can, and sharing with everyone, what I have gone through.  It makes me feel good to help others.  Today, I'm complaining a bit, and sharing with you a bit what it's like to live a day in the shoes of someone with Rheumatoid Arthritis. 

To have Rheumatoid Arthritis, it not only comes with pain, but fatigue as well.  Before making plans to go out, I have to plan everything around how I feel.  For example, how much walking I will be doing, if there will be a lot of people there (because of my immune deficiency, I have to be very careful with germs), and how fatigued I feel, rates how long I'd be able to stay out for.  It really sucks most of the time, because I'd really love to just go out and enjoy myself.  Every time I do, I end up paying for it when I get home, or the next few days.  For example, yesterday Adam and I went out for a couple of hours to do a little shopping and had some dinner.  I came home and felt like my body was run over by a freight train! I slept 10 hours last night, and woke up feeling so fatigued and run-down today.  That's normal for me though, or for anyone who suffers from RA. I know that I will feel like this for at least a few days. In a way, it's worth it to enjoy life for a little while and have some fun.  I really don't want to spend my life couped up in fear of being in pain, and feeling fatigued.  It's just not the type of life I'd want to live. I'd love to live a normal life, although, I don't even know what normal is!

Living normal would be great, but I know and have come to accept it's just not in the cards for me.  Like I said, I will enjoy my life the best that I can, when I can.  I'm not going to be stupid and go out every day, or every week, because the rest is good for me.  I don't want to over-due it and end up in a flare.  A flare is when my joints become inflamed, stiff and in pain.  My joints look and feel like they have jelly in them, I can't move them much at all, and it hurts to do everyday things.  Right now both my knees are killing me, and it hurts to move. My jaw has been hurting me for a while now, and I am having difficulty eating certain foods because the chewing hurts a lot.  My neck is stiff and I've been having trouble washing my hair, because it hurts to move my neck to rinse the shampoo out.  Do I force myself to shower and in-turn cause myself pain?  Do I try taking a bath and just do what I can? Or skip it altogether and get rest?  It's a tough choice, because with my knees the way they are right now, even taking a bath will cause me pain trying to get in and out of the tub.  Since heat usually helps with the pain, I most likely will end up taking a bath, with assistance getting into the tub from Adam.  The heat from the bath helps me, for a little while.  Usually after I get out of the tub, and my knee cools down again, the pain comes back. 

This is a normal day for someone like me.  I feel like this most days, very rarely do I have a day where I feel good and without pain.  There are some lucky ones who have their RA under control, with little pain.  There is no cure for this, so I don't think one could live entirely without pain, but if it's well controlled then you can live a little while without pain.  Ever since I was first diagnosed when I was 3, my doctors have had very much difficulty controlling my disease.  I was looking through my medical files last week and I kept seeing the same thing written over and over again by my doctors: "her disease has been very hard to control".  I've been on just about everything out there, and of course I'd love for a cure to be found, but in the meantime I'd really just like to find a medicine regime that helps me live without pain, even if for just a few days.  Maybe it would help me live a somewhat "normal" life.... whatever that may be.