A Rheumatoid Arthritis hand is a painful hand

During those first few months with full-blown Rheumatoid Arthritis, hand joints were not my concern. I had no idea what was in store. No one told me that RA always gets your hands …eventually.

No one needs to tell you how bad RA hurts if you have Rheumatoid Arthritis. Hands become extremely tender and fragile. Joints are loosened and easily pulled out of place.

Handshakes with an RA hand

When you have RA, handshakes become a dreaded affair. I’ve heard so many stories about “Ouch!” in the fingers and offended friends. On a recent post, I mentioned handshakes at church and someone commented about hiding in the bathroom! …The worst part is that I can relate to that.

Once, right after RA finally did take hold of my hands, I had a horrendous experience on a Sunday morning. A 94 year old man caught me off guard. He smiled and squeezed my fingers extremely hard. They crushed together under the pressure.  

A couple of years ago, I decided to take matters into my own hands, pardon the pun. I decided that an assertive handshake that protected my fragile fingers would demonstrate that even though my hands are impaired, I’m still friendly. So, I started using my homemade handshake seen in these photos and video below.

Description of RA handshake

You have to be a little forward. Smile and move toward the person with both of your hands out. With your right hand, reach out about 3 inches farther and a little lower than you would for a traditional handshake. Gently grasp their wrist and palm and make a little shake motion up and down. Let go quickly before they know what hit them.

You can either end there or proceed to the second step. If you want to make a warm impression, take your left hand and briefly clasp the other side of their hand or touch their arm.

I love to watch the different reactions. Most of the time, they are positive. Also, it leaves no opportunity for someone to insist that my RA hands handshake in the conventional way. I just do what I can do. It just is what it is. It is a warm and friendly greeting …from a Rheumatoid Arthritis hand.

Recommended reading:

• Thinking About Rheumatoid Arthritis Hands
• Chronic Rheumatoid Arthritis, Perspective, and the Church
• Is Laughter a Real Rheumatoid Arthritis Medicine
• Dr. Dolittle and the Rheumatoid Arthritis Specialist

It’s Lent – a good time to confess.

This is new territory for RA Warrior. This post is not like any before.  I’m going to ask you some surprising questions. But let’s back up…

Why I’m interested in Rheumatoid Arthritis swelling

About four years ago, my toe joints swelled to twice their normal size. Naïve to RA politics, I did not photograph them. Neither did my podiatrist.

After a few weeks, the swelling subsided. As I detail in my RA Onset Story, RA symptoms methodically spread to every joint in a neat symmetrical fashion. I was systematically disabled. Since then, I live with tremendous pain, stiffness, and disability. However, I never again saw that remarkable swelling I did at the beginning – only minor puffiness.

Over a year ago, I began to research RA swelling because my rheumatology doctor was puzzled and frustrated. Is that funny? Why didn’t the doctor do what I did? Oh well, on with our story.

Some Rheumatoid Arthritis swells and some does not

The fact of Rheumatoid Arthritis swelling is widely accepted. Most doctors say it is essential for active RA. When swelling subsides, they call it “remission.” But, is there any evidence for active RA which swells less often or less obviously? Some.

This article in Arthritis Research and Therapy shows how researchers often separate swelling and tenderness during research. If swelling were mandatory for “joint activity,” then why would tenderness be measured separately?

Writing for About.com, rheumatologist and author Dr. Scott J. Zashin says, “Just as the presentation of rheumatoid arthritis may vary between patients, so can the appearance of the arthritis. Some may present with prolonged morning stiffness and pain in the affected joints, but not have any noticeable swelling. Others may have significant swelling.”

RA swelling messages

When Dr. Google did not give me much help, I peeked at some message boards. Sure enough, there were some RA’ers questioning why they had little RA swelling. Next, I posted open questions about swelling to see if any would reply. I even posted my email address to allow people to privately confide their stories and the names of doctors who treat RA the same even when swelling is minimal.

The replies

Here are excerpts from what was sent to me last year. I have only changed names to protect identities. Donna: “No swelling with my RA.” Karen: “I always had subtle swelling. I can’t really see it.” Mary: “Kelly, I’ve had RA for 30 years. For most of that time I had no swelling… from time to time in isolated joints. I currently have none. I am on Orencia and MTX now.” Ellen: “Seems when it comes to swelling if there isn’t any, they tend to become uninterested. Swelling is not guaranteed with RA. I don’t know when it became a deciding factor. I have virtually no swelling at all.” Judy: “I have RA and don’t have nearly the amount of swelling my older brother does. At times his fingers swell up like sausages. My swelling is usually subtle and occurs primarily in wrists and ankles. I wasn’t even aware of the swelling in my wrists since I didn’t know what to look for until the rheumatologist pointed it out. I don’t think the lack of swelling has changed my treatment, but did delay a diagnosis.”Amy: “I too have no daily visible swelling, even though I have stiffness & pain. The swelling comes here and there, but nothing regular.”

New RA swelling research

This is the new territory. This is the first time I have ever solicited a response from you. You’ve heard my confession. I would like to hear about your experience. Please take a moment to answer specifically.

1. RA swelling?
   Do you have it all the time? Does a joint ever hurt and creak without much swelling? Has your pattern of swelling changed over time?
2. RA Inflammation markers
   Have you ever had a normal CRP blood test result while you still had RA pain? Do you ever have normal ESR / sed rate result while you still have RA pain?
3. Doctor’s comments
   Has your doctor ever told you anything similar to…? “I don’t understand why you say it hurts because I do not see swelling;” “Perhaps this pain is due to something else because your inflammation is under control;” or “Your joints look good. Your RA is under control. Maybe you need an antidepressant or….”

Related posts:

• Blood Tests for Rheumatoid Arthritis, Part 2
• Where Do You Find Rheumatoid Arthritis Information?
• So Glad Your Rheumatoid Arthritis Is Cured

Note: If you would prefer to answer privately, you may email me at kelly @ rawarrior.com, without the spaces. I cannot promise to reply to every email. I do promise to never use your name or email without your permission.

Rheumatoid Arthritis, blog, and birthday cake

It’s my birthday as I write this blog – Sunday night. Since my Rheumatoid Arthritis diagnosis, I’m so grateful for every birthday. I am so glad for another precious year to enjoy my beautiful children. Time seems to pass quickly.

In some ways, my whole reality is altered with RA. The law of gravity certainly is. Things are much heavier in this RA reality. Maybe we RA’ers need to visit the zero G of outer space!

People who do not have Rheumatoid Arthritis (Non-RA’ers) still tell me, “No, that’s not heavy” as if I can be convinced. But I cannot be convinced. Whether it’s a laptop holder or a coffee cup or a purse, it is heavy to my hands.

An RA blog, the universe, and seeing is believing

Every day I get letters from people who are so grateful to find someone who shares their reality.  Sometimes, we cannot hide RA in the closet – it is too large to fit in there. It helps us to talk to someone who seems like they are from our same planet!

Another reason I write this RA blog is a hope to allow Non-RA’ers a glimpse of our reality. Space shuttle Endeavor flew overhead tonight right before it landed at Kennedy Space Center. My house shook for several seconds. No one will ever convince those astronauts that Earth is flat. They’ve seen for themselves.

Launching ideas with an RA blog

This is post number 200 on the blog! I could hardly believe it today when I noticed that. I’m just a little girl with laptop trying to publish her reality in the enormous universe of the World Wide Web.

I spent this whole weekend updating the section of the blog called RA 101: Basic Rheumatoid Arthritis Information. There are new sections, new links, and improved organization. It is my primer on RA from a view of 10,000 feet. No spacejunk, just my reality –life with RA.

I’ll hope you’ll click here to check out RA 101 and tell others if you find it helpful.

Related posts:

• The Birth of the Rheumatoid Arthritis Warrior Blog
• Mistaken beliefs about a Rheumatoid Arthritis blog?
• RA, Blogging, and Mary Poppins

Is there an objective way to discuss Rheumatoid Arthritis pain?

Rheumatoid Arthritis pain is being studied in some surprising ways. Did you know that it is considered a “well established” fact that Rheumatoid Arthritis patients have lower pain thresholds? It is believed that they perceive pain to be worse than “actual pain” and that they worsen the perception of pain through their “maladaptive strategies” such as “catastrophizing.”

Back in 1972, the British Medical Journal reported that Rheumatoid Arthritis (RA) patients have a lower pain threshold although it does not affect their disease course. In 1999, the Scandinavian Journal of Rheumatology speculated that the “significantly lower pain threshold” of RA patients may be reflected in changes in their “nociceptive processing system.” By May 2009, Arthritis Research and Therapy reported: “To date, although it is well established that RA patients are more behaviorally responsive to noxious stimulation relative to non-arthritic controls…”

Stop. “Well established” fact? How was it established?

Painful as it was to read, I examined the sixty-six footnotes looking for an answer. Many of the articles had footnotes of their own, so it was an infuriating couple of weeks.

Some of the most galling claims about RA pain

The claim: “The findings suggest that RA patients display a fairly general hyperalgesia to mechanical and thermal stimuli across several body sites.” Hyperalgesia is an abnormally high sensitivity to pain. In other words, it’s a low pain threshold.  These doctors claim that “maladaptive physiological responses to stress” play a part in the hyperalgesia of RA.

My questions: How do they know what is a low pain threshold and what is more actual pain? Do they think that pain is a closed system? Do they assume that less actual pain exists because they cannot “see” the disease activity of RA?

The claim: A catastrophizing scale contained items like “I worry all the time about whether it will end” and “It is awful and I feel that it overwhelms me.” The researchers called the scale internally reliable. “These findings suggest that catastrophizing is a maladaptive coping strategy in RA patients. Further research is needed to determine whether cognitive-behavioral interventions designed to decrease catastrophizing can reduce pain and improve the physical and psychological functioning of RA patients” Pain, April 1989.

My question: How does one objectively measure whether pain is “overwhelming”? Is there any level of pain which is sufficiently overwhelming in nature for those statements not to be considered “catastrophizing”?

The claim: Another catastrophizing / rheumatology study at John’s Hopkins says “This review describes a growing body of literature relating catastrophizing, a set of cognitive and emotional processes encompassing magnification of pain-related stimuli, feelings of helplessness, and a generally pessimistic orientation, to the experience of pain and pain-related sequelae across several rheumatic diseases.”

My questions: What is the objective measure of Rheumatoid Arthritis pain which allows them to judge that the pain is “magnified” in the patients’ statements? If the RA patients live with untreatable pain, would it not be rational to feel helpless? If such perceptions of the patients are accurate, are they still maladaptive?

The claim: Clinical Journal of Pain described their 2002 study this way: “This relation was statistically significant even after controlling for actual pain and variability and other background variables.”

My question: How do they know what the “actual pain” is?

The claim: The cytokine IL-6 is associated with “catastrophizing,” with higher levels of catastrophizing being strongly related to higher levels of IL-6.  It is suggested by researchers “that cognitive and emotional responses during the experience of pain can shape pro-inflammatory immune system responses…” Pain, November 2008.

My questions: How can anyone know whether the cytokine makes it “hurt more” or whether the catastrophizing makes it hurt more? Could it be possible that patients complain more vigorously because of greater pain? Is it possible that the stimulus itself caused increased cytokine production which created more pain?

RA pain and our bottom line

The claim that RA patients have low pain thresholds should not be stated as “well established fact.” Not every footnote in the Arthritis Research and Therapy article supported the assertion. It was a conclusion drawn from various sources, many of which supported that position.

I even found a study reported in the British Journal of Rheumatology stating that while osteoarthritis creates lower pain thresholds, “other painful conditions such as Rheumatoid Arthritis do not appear to alter the pain threshold.” They certainly did not treat it as “well established” fact.

What is well established is that Rheumatoid Arthritis patients say they have a great deal of pain which is not alleviated by medicine. Either they do or they do not. Either millions of people are “magnifying,” “overfocusing,” “catastrophizing,” and “maladapting” or they are telling the truth that this deadly disease which devastates bone, tendon, and organ tissue is more painful than others realize.

Postblog: When I first realized that this RA low pain threshold theory seems to be the prevailing academic view, I was discouraged. However, it does give clues about some questions I’ve been asking about why things are the way they are. It’s always exciting to find a clue.

Recommended reading:

• What Makes Diagnosing Rheumatoid Arthritis So Difficult?
• Palindromic Rheumatism Is Not a Rare Form of Rheumatoid Arthritis
• My Quest for Answers to Questions About Rheumatoid Arthritis

Rheumatoid Arthritis T-shirts from RA Warrior

I’ve got good news, good news, and bad news. Good news: We’ve finally got a few of our Rheumatoid Arthritis Awareness T-shirts online. More good news: The company we are using, Printfection, is having a huge sale! The bad news: It ends today. (Looks like the fine print says 11:59 p.m. MST.)

The Rheumatoid Arthritis Warrior store page is still under construction. If you visit today, you’ll see nails, drywall dust, and wallpaper glue. But, you’ll also see some great Rheumatoid Arthritis T-shirts in lots of colors and styles with several important messages when you click here.

Note: Some of our T-shirts use the words autoimmune arthritis so that they are also appropriate for Ankylosing Spondylitis, JRA, Psoriatic Arthritis, Lupus, or other autoimmune arthritic diseases.

More RA T-shirts and other products coming soon

Why Printfection? We’ve done some comparing and they seem to be the best fit to link from RA Warrior. Word on the street is that their shirts and printing method are both good quality. Their prices are comparable to similar sites.  Yes, the RA Warrior site will benefit from sales, receiving three dollars from each sale. Those funds will be used to help defray the costs of this site. Printfection handles all customer service.

If you do not need a T-shirt? We do have other products in progress. Or you can always make a donation via PayPal or credit card.

 Link to RA Warrior’s Printfection store page.

Recommended reading:

• RA Awareness: 5 Ways We Can Spread Awareness of Rheumatoid Arthritis
• RA celebs? Celebrities and Rheumatoid Arthritis
• Video post: How Rheumatoid Arthritis Impacts Lives

Thank goodness for Rheumatoid Arthritis pain?

A few months ago, I had a discussion with a friend about Rheumatoid Arthritis pain. The friend does not have Rheumatoid Arthritis. We were speaking academically.

At that point, I began to consider how the medical world views Rheumatoid Arthritis (RA) pain. I realized that doctors and researchers examine RA pain from the outside. They think they look at it objectively, measuring it the way meteorologists measure rainfall.

Last week, I was naively reading some study about pain threshold (PT) and Rheumatoid Arthritis. The researchers get to decide whether RA patients have a low pain threshold.  It was only mildly aggravating. Thank goodness I have real RA pain to give me perspective.

The “H” word?

Then, I clicked on a link. All these six syllable words start to numb you. It said “catastrophizing” about pain can lead to a disorder called “hypochondriasis”. Wonder what that is. What a minute – that’s a form of another word: hypochondriac. Hey, I know that word.

You’ll have to read the Arthritis Foundation article yourself to get the full flavor, but Dr. Hassett says “signs that overfocusing has become a mental health concern are preoccupation with minor physical complaints, seeking repeated physical exams and tests, extensively researching a condition, feeling that doctors and specialists don’t understand the problem, and seeking constant reassurance…”

Is it me? Or does that sound a little bit like being part of an RA blog or forum? When I read the definition to my kids, I asked them, “What does this describe?” They thought it sounded like your average RA patient. Ouch.

“Overfocusing” for survival?

Did you ever see the Twilight Zone? Imagine with me for a moment…

A doctor diagnoses you with a disease that will slowly eat away at you like an alien force inside your body. The disease is completely invisible, but the doctor gives you potent medicine. However, he never warns you what the side effects might be or gives you ways to cope in case they raise their ugly head.

Should you be more afraid of the disease or the medicine? You don’t know where to begin, but you have to find answers. They’re not in the newspaper. They’re not on television. Your bff doesn’t know what to tell you.

Of course, you go online to “extensively research.” What other window to the world do you have? You can read case studies and journal articles or abstracts. You can compare hospital sites to forums and message boards. New news, old news, good news, bad news, it’s all there for you to sort through.

The doctor sounds like he doesn’t want you to go to the dreaded internet where you might find something that would challenge his authority. But frankly, isn’t it like he put you in the backseat with a blindfold on and drove you there and dropped you off? Maybe you’re lost – or maybe you are about to be found – in the Twilight Zone.

Coming soon, we’re asking more about measuring pain threshold and wondering what doctors think: “Does Rheumatoid Arthritis Pain Really Hurt that Much?”

Related articles on the blog:

• The Difference Between Osteoarthritis and Rheumatoid Arthritis
• Hysterical Symptom Diagnosis, Part 1
• Checklist for Moderating Side Effects
• Rheumatoid Arthritis Warrior Joins Healthcare Blogger Code of Ethics Network

The irony of Rheumatoid Arthritis sleep issues

Rheumatoid Arthritis (RA) patients need quantity and quality sleep to in order to fight debilitating pain and fatigue. Rest is one of the only things that can enable those living with RA to function in a somewhat normal manner. In my opinion, it is second in importance only to RA disease fighting medicine.

Sleep can also be the only refuge from persistent pain. However, for those with RA, getting enough sleep can be a problem as we discussed yesterday. Rheumatoid arthritis patients frequently complain that restful or adequate sleep is elusive.

Promoting sleep with RA

Priority 1 is falling asleep: Falling asleep with RA may require special preparation. We may need to confront things head on which can interfere with the rest we really need. This way, we do everything in our power to promote sleep.

Tips to confront things which interfere with RA’ers sleep:

• Pursue physical comfort. Deal with pain and discomfort as much as possible ahead of bedtime. This not only includes pain medicine, but also could include heat patches or creams. An example of addressing problems ahead of time might be taking a heartburn preventative if you need it. Look for your ultimate mattress, pillow, and cover as if it’s your Holy Grail.
• Attempt to relax. Release the intense stress of another day living with RA. Things that might help include gentle massage, warm bath, chamomile tea, a brief conversation w/ a loved one, fragrance, music, light or boring reading, and soft loose clothing.
• Watch out for medicine. Some drugs or meds interfere with sleep. These may include various vitamins, cold medications, prednisone, and blood pressure medicines. Check with your pharmacist. Some can take methotrexate at bedtime successfully, but it if bothers you, you can back it up a few hours.
• Be careful about food and drink: Some foods and drinks promote sleep and some interfere. Caffeine is the obvious one, but watch to see what bothers you, such as sugar. A typical safe snack is a banana or a turkey sandwich with milk – full of L-tryptophan and potassium to fight leg cramps. Alcohol and nicotine are usually no-no.
• Take hormones earlier in the day. Many hormones such as estrogen or thyroid supplements can interfere with sleep if taken near bedtime.
• Treat illness. It is not known which aspects of the RA disease process may cause sleep problems, so treating RA adequately may help sleep. Other medical issues may include sleep apnea or endocrine problems which can affect circadian rhythm.

Priority 2: Finishing strong by getting back to sleep

Going back to sleep can be a separate problem. The most important thing is to plan ahead. Set out whatever you may need when you awaken: medicine or pain cream, fresh dry clothes or pillowcase, extra blanket, a drink. Hopefully, you can get back into bed within a few moments without ever turning on the light. (Some of the Resources below include tips about this.)

My personal favorite sleep tips

Okay, a bonus: my personal tips. No footnotes – just what works for me:

• A combination latex-rubber bed with a thick feather bed on top. Very lightweight feather comforter and duvet which are easier on my fragile fingers.
• A bath with menthol-infused salts.
• Turn the clock away from your face. Don’t look at a clock if you wake up.
• Slow, deep breathing.
• A dim blue LED nightlight.

Finish this post with your own favorite tips. How do you promote good sleep?

Some Really Helpful Resources:

• 15-part series by a doctor on How Stuff Works.com  with lots of general good sleep advice.
•  Lists from Healthkey of more meds which may interfere with sleep.
• Dr. Sears’ lists of foods to help sleep.
• WikiHow: Dozens of tips on how to fall asleep.
• 32 mattress buying guides on ConsumerSearch.com

Related posts:

• A serious look at problems with sleep and RA: Rheumatoid Arthritis Sleep Issues (Great reader tips!)
• A humorous look at sleep and RA: Encountering Signs of Rheumatoid Arthritis: A Modern Princess and the Pea
• Comparing Risks and Benefits of Rheumatoid Arthritis Medicines