Rheumatoid Arthritis Symptoms Don't Rule My Aud Life

I’m not in contact day to day with another person who has a chronic condition like I have (at least not to my knowledge), so I don’t know what it’s like dealing with a person with an autoimmune disease like Rheumatoid Arthritis. My only point of view is from the side of the sufferer (the sufferer with RA), living with people who don’t have RA.

My post about ‘Arthritis Myths’ sparked this topic for me, when I wrote about how people assume you can’t or shouldn’t do anything anymore. It’s almost as frustrating as the pain in my joints. Most people are either one way or the other; treating me like a child who can’t cross the street without holding hands or not realizing how much pain and fatigue I feel during a major flare-up. There doesn’t seem to be too much of a happy medium, and trying to explain how you feel over and over gets old after a while.

I’m sure that every Rheumatoid Arthritis sufferer feels the same at one point or another. When people first learn that I have RA I’m treated with kid gloves, like I’m going to break into pieces if I do anything more strenuous than sitting down. But in all honesty, most of the time, the more I active I am, the better I feel. I love power walking a few miles every day, yard work and digging in the dirt is bliss for me, and when it comes to power tools, whether construction or destruction… stand back and let me play!

Being able to be independent is certainly important to me, but I’m also not a martyr. When the pain, aches and fatigue are too much for me handle without a grimace, I am usually able to put my stubbornness aside and ask for help, and most of the time help is given. I do remember one person who made a comment about how he didn’t think that Rheumatoid Arthritis hurts that much. I asked him if he’d ever been stung by a bee and he said he had. I asked him if he thought it hurt.

“Of course it did,” he answered.

“Well,” I returned. “My RA is like having bee stings in every joint. Hands, feet, knees, shoulders and elbows.”

That bee must have stung him pretty good because he never made a comment like it again.

I think I can also be honest in saying that I do get jealous of ‘normal’ people who don’t have to get up early just so they can get the stiff soreness worked out before the rest of the family wakes, who get to enjoy a glass of red wine, not have to worry whether the in coming low pressure system will set off a flare up. But I also see the blessing side of it. I’ve discovered that I can handle more than I thought, it’s made me a stronger person, and I’m much more empathetic to other people’s pain.

Living with the “normies” can be challenging, the main challenge being that they just don’t have a sweet clue as to how I am truly feeling, but it’s not their fault; they just aren’t as ‘blessed’ as I am!!

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When I was diagnosed with Rheumatoid Arthritis in 2005, I had one blood test performed and some x-rays ordered, and at the time that was my extent of knowledge to the range of possibilities in diagnosing the disease. Learning more about RA caused me to look into the tests that are beneficial in proper diagnosis, and in turn, understanding what the tests actually did helped me understand more about the disease.

I had an Rh factor test (a simple blood test) taken which turned out to be positive. Antibodies are normal proteins found in the blood; the Rh (Rheumatoid) factor is an antibody that can bind or attach itself to other antibodies. The Rh factor isn’t usually found in normal population; however it is found in over 80% of adults who have RA.

A general CBC (Complete Blood Count) test may be ordered to measure red blood cells, their number, fraction and size; it also measures the number of white blood cells, and the amount of hemoglobin in the blood. This will the Dr an idea of there’s infection, or any other condition going on.

I’m glad I just have to type this next one out, if I tried to pronounce it I’d mess up! Erythrocyte Sedimentation Rate (ESR) should be called the ‘inflammation measuring test’ because that’s what it does; it measures how much inflammation is in the body.

The C - Reactive Protein test is a little trickier which measures a special type of protein produced by the liver. During a time of acute inflammation or infection the liver will secrete this protein and the CRP measures the concentration of this protein in blood serum. Although it’s not specific, a high result of the protein gives a general indication of intense inflammation and Rheumatoid Arthritis causes a large amount of inflammation, especially during flare-ups. Because it’s not specific, a high CRP rate could also be indicative of rheumatic fever, lupus, cancer, tuberculosis, heart attack or pneumonia.

This next test sounds to me more like a weapon or air craft – the HLA B27. It’s a gene marker affiliated with quite a few related rheumatic conditions. They have a few things in common such as peripheral arthritis (affects the large joints of the body) and spinal arthritis, skin and gastro-intestinal disorder, certain glaucoma, and psoriasis like skin lesions. This isn’t a usual test that A Doctor would perform because a lot of patients with this gene never develop any rheumatic symptoms.

Antinuclear Antibody (ANA) is a blood sample specimen from the patient, put onto microscope slides that have been commercially prepared with cells, to look for antinuclear antibodies. If the patient’s serum does contain the ANA, they will bind to the cells on the slide (particularly the nuclei of the cells).

A second commercially fluorescent tagged antibody is then added to the serum and prepared cells on the slide. The fluorescent antibody attaches to the serum antibodies and cells which have bound together, and when it’s viewed under an ultraviolet microscope, the ANA appear as fluorescent cells.

ANA’s are discovered in people who various autoimmune diseases, but can be also found in patients with infections, lung disease, cancer, GI diseases, hormonal disease, blood diseases, and skin diseases. Having ANA tests performed is only one factor in diagnosing RA, other factors need to be considered such as symptoms, medical history and other medical tests.

Anti-Cyclic Citrullinated Peptide Antibody (Anti-CCP) test is a fairly new test being preformed to help doctors diagnose Rheumatoid Arthritis.  It measures the citrulline antibody, and if it is a moderate to high level it not only confirms the diagnosis but also may show that the patient is at an increased risk for damage to joints.

One last test that I found was on Synovial Fluid, the thick fluid found in cartilage which reduces friction between joints and adds lubrication and cushioning during movement. Analyzing the synovial fluid helps detect markers of joint destruction, but this is not a test that is usually performed because it’s not the most comfortable test. A sterile needle is inserted into the joint space, and fluid is then aspirated into a syringe. The specimen is then analyzed in a laboratory and examined for red and white blood cells, crystals (in case of gout), and bacteria.

X-rays, ultra-sound and MRI’s are commonly performed in order to determine the possibility and extent of joint damage, in order to give doctors a better understanding of the intensity of the condition.

Initially these are the some of the first tests that are preformed especially during the diagnosis process.

While waiting for the results of my Rh factor test, I went through a roller coaster of thoughts and images in my mind. Sometimes I was optimistic, sometimes pessimistic and sometimes in complete denial. How did you feel while waiting for your results?

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I’ve come across some funny comments that people make when they learn I have Rheumatoid Arthritis, some comments are just simple while others I find more frustrating. So here are some myths to illuminate the facts.

Myth #1- Rheumatoid Arthritis can be cured.
Oh, how I wish this was true. Right now there is no known cure for Rheumatoid Arthritis. However there are a lot of successful treatments and procedures to slow it down and put the disease into remission, and increase the quality of life of a sufferer.

Myth #2- Rheumatoid Arthritis is an old person’s disease.
Some days I do feel like I’m 90 years old, but I’m only 33. RA can strike at any age. Children, young adults and middle aged people can be affected, and this condition doesn’t care whether you’re male or female.

Myth #3- “You felt fine yesterday, why are you feeling so terrible today?”
This is one of the frustrating myths. Although sometimes I do get a bit of a warning when a flare is going to hit, but that doesn’t happen all the time. Some mornings I wake up feeling like I’ve been hit by a Mack truck!! I may feel tired and achey, or in a lot of pain. No real explanation other than RA involves periods of flare ups and remission, and you roll with the punches.

Myth #4- Rheumatoid Arthritis is caused by the wet cold.
While I am personally affected by the weather, not all other sufferers experience the same thing and the cold and wet not the cause of the onset of the disease. Pain is caused from inflammation and the deterioration of cartilage in the joint. For me, warm baths, and other heat sources are very soothing for sore joints, and I feel pretty good when the climate is warm and dry.

Myth #5- Rheumatoid Arthritis only consists of minor aches and pains.
Yeah, another frustrating myth. I hate those commercials that say “Pop a couple aspirin or Advil and all your arthritis pain will be gone!” I’d love to scatter their chickens! All arthritis sufferers know that this is a crock of….(you fill in the blank)! RA hurts and it hurts a lot, and it’s more than aspirin, extra strength Tylenol or Aleve can handle. A regimen of diet, exercise, supplements and other medications is usually the best way to overcome RA pain.

Myth #6- Rheumatoid Arthritis is caused by poor diet.
Sure, I believe that diet greatly affects a Rheumatoid Arthritis sufferer’s life, but it’s not the cause of the disease. I feel that the digestive system plays a major roll in the immune systems function and since RA is an autoimmune disease, I like to keep an eye on what I’m putting into my body, and I keep track on how I feel after I eat something, especially if I’ve never had it before or haven’t had it in a long time.

Myth #7- “If you have Rheumatoid Arthritis you can’t do…..”
Wow, not something to say to a stubborn person! There are some things I’m  not able to do, and some things I probably shouldn’t do, but most are because I’m a woman, not that strong, and I’m an incredible klutz. A certain amount of help is likely to be required when fatigue and pain are at their worst, but some try to do too much for a sufferer and it can limit them. Certainly RA interferes with some physical activity but it doesn’t mean that someone becomes an invalid because of their diagnosis. Emotional and physical stimulation is an important part of Rheumatoid Arthritis treatment.
Have you come across some odd or absurd comments about Rheumatoid Arthritis? Share them! I’d love to hear them!

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You’ve been referred to a Rheumatoid Arthritis specialist (Rheumatologist) and you’re anticipating your first visit. I’m sure you’re feeling anxious, nervous, intimidated and perhaps scared out of your wits, gathering your thoughts together and writing down questions to ask can make the most of your first visit.

For me, I had no idea what to expect, but I had a lot of questions that I needed answers to.
Here are my top 9 questions that I asked my Rheumatologist on my first visit.

1. Do I have arthritis? I know some blood work had been done, and my family practitioner suspected it, but I hadn’t had a definite answer.

2. What type of arthritis? I wanted to make sure that I had Rheumatoid Arthritis, and the Rh factor confirmed it.

3. What the first bit of treatment? My family Dr had given me cortisone shots but I wanted to know the next step, which was Plaquenil.

4. What does this new treatment do? Alright, so I’m on Plaquenil- what the heck does it do? Is it a pain killer? NSAID? Anti-inflammatory?

5. How long until I notice improvement? I needed a time line, something to set my sights on, and I was told it would be about 6 weeks before I really noticed a difference.

6. What if it doesn’t work? If Plaquenil didn’t put the disease into remission, then methotrexate would be prescribed.

7. How will my progress be monitored? I was told to keep careful watch and record anything new, and to bring all this information back with me on my next visit. Participation on both sides of the table is very important and can make treatment more successful.

8. What other tests will I need? I had already had some blood work to determine the Rheumatoid factor, but a test for Marfan Syndrome was also ordered, x-rays and a biopsy procedure were also booked.

9. What else can I do to help myself? I couldn’t just leave it up to the rheumatologist to fix my problem, I wanted to be a part of it too. I was advised to keep physically active as much as possible, to watch what I was eating, keep my stress level low and to rest as often as I could.

So, don’t be afraid to get involved and ask questions. Doctors aren’t mind readers, they need to be asked sometimes in order to share information.

What other questions would you ask your doctor?

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The deep aches and sharp stings of Rheumatoid Arthritis pain are things I’ve learned to live with over the past few years. The first few months after diagnosis were terrible, I was incapacitated with pain. My feet and knees were so terrible I needed a cane to walk and my hands were useless to open jars, and buttons were impossible. I was quite an unhappy camper.

As I’ve said over and over, I dove into researching RA. Food became an interesting topic as I discovered that many others had noticed that certain foods caused more pain and discomfort than others. I thought I would give it a try; I had nothing else to lose.

Red peppers, red wine and shell fish were quickly noted as pain triggers and were begrudgingly eliminated from my diet, but still there was pain. How could I keep up with my young family? I had to find something better. I found weather played a big role and heating pads and hot baths became more frequent and favorite friends.

I noticed that stress would set pain switch on and if I wasn’t active for more than an hour, stiffness set in, so walking was put on the schedule, which also helped with relaxing stress away.

One particular thing weighed heavy on my mind and that was the dependency of pain meds. In the past, with other health situations I had gone through weeks and weeks of extreme pain and had been given copious amounts of narcotics, morphine, Vicodin and Demerol. But at the most I was 3 weeks relying on them because the pain was temporary and an end was in sight. This was different, I would be living with RA for the rest of my life, how could I get through without abusing drugs? Who in their right mind wants to live 24/7 with no pain relief? And narcotics certainly help deal with that, and wow, they make me feel great! It was a big decision to dig my heels in and be determined that I would do all I could to better this situation before relying on mind and body numbing drugs. So far, I have been doing a pretty good job of keeping pain away, and in dire situations I take a couple of Tylenol 3’s.

When living day in and day out with chronic pain, a person learns how to cope. I began to keep an eye on the weather in order to prepare myself for pressure changes, I always make sure pain meds were handy, heat sources close by and diligently keep my immune system as healthy as possible. But even all this doesn’t entirely remove it.

I barely notice it now, unless it’s a bad flare, or really take the time to think about it. I supposed I’ve gotten used to it so much that it doesn’t register the same as it did even 2 years ago. I deal quite well with the daily stiffness and aches, but the sudden flares still send me for a loop, probably because they are so infrequent now. The sharp pains that feel like bee stings in my fingers, elbows, knees and feet are horrible, and because I’m on blood thinners, the inflammation usually causes quite a bit of ugly bruises which makes me look like I’ve been beaten with a ball-peen hammer.

Yes, Rheumatoid Arthritis pain definitely gets on my nerves to say the least, but the more I live with it, the more I learn to fight it; and the stronger I get, RA’s grip on me gets weaker. Until a cure is found, I’m quite prepared to fight tooth and nail. Bring it on!

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