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Posts Tagged ‘fingers’

In an earlier post, I outlined how RA can impact much more than bones including many organs and soft tissues. One group of soft tissues that can be damaged by RA includes those involved with the musculoskeletal system. The musculoskeletal system involves a complex interaction between muscles, bones, joints, and various connective soft tissues – all which can be the target of RA.

Erosion of bone tissues in joints is on of the trademark symptoms of rheumatoid arthritis. Through complex autoimmune biochemical processes, the body’s immune system attacks it’s own tissues like it was a foreign invader. A cascade of signaling chemicals promotes the production of bone cells called osteoclasts that erode bone tissue and surrounding cartilage. This kind of gross damage…

Read more at http://rheumatoidarthritis.net/living/attack-on-connective-tissues/

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The last four days have been a grand time of celebrating our oldest son’s college graduation. It’s been a whirlwind of events including his senior engineering project presentation, three formal ceremonies of various sizes and durations, dinners, and a large party hosted at our house. This meant much physical activity around the yard and house the principal of which was 10 hours of smoking five large pork shoulders for 50 people (it was tasty and you should check out the website http://www.amazingribs.com/).

Tired_brown_bear_050701_01Going into this set of events, a nagging thought persisted…”I’m going to pay for this later.” Sure enough, by Sunday evening I could barely walk, my fingers were swollen and throbbing in pain, and sheer exhaustion washed over my body causing me to collapse. I knew that going to work Monday morning would not be possible.

Many argue that movement and exercise is critical medicine for arthritic joints stating that it relieves pain and stiffness (see these websites – Mayo Clinic, NCHPAD). In addition to potential positive impact on joints and muscles, exercise is obviously important for other reasons include cardiovascular and mental health. But my experience over the years has been that exercise and movement causes rebound pain and stiffness. Yet, I know that I’m missing out on the benefits of exercise.

It’s interesting to read some of the recommendations from medical websites. From WedMD…“Regular exercise can actually reduce overall pain from rheumatoid arthritis.” In my experience with RA, exercise always causes more pain. There are many times when I’ve had to stop movement because the pain got worse. WebMD also makes this statement, “Regular exercise improves functional ability and lets you do more for yourself.” This may be true for some but the functional ability of my ankles and Achilles tendons actually got worse after exercising. The tendons tore at a quicker rate and my orthopedic surgeon and physical therapist both recommended that I avoid any activity that puts stress on the tendons.

Can exercise actually be contraindicated for RA? Kelly Young at RA Warrior has an excellent series of posts about this topic. She concludes, “If you can, you should; if you can’t, you shouldn’t.” At the Health Central RA website, Dr. Borogini wrote a balanced article about the topic and makes an excellent suggestion which is in alignment with Kelly Young’s statement, Rest More When RA Is Active, Exercise More When It Is Not. The Johns Hopkins Arthritis Center website makes a great observation about movement and RA.

Acutely, resting of involved joints can assist with pain management and decrease the inflammation of the involved joint. However, the potential side effects of inactivity include decrease range of motion, loss of strength, altered joint-loading response, and decrease aerobic capacity.

This leaves those with active disease in a real quandary.

The conclusion that must be drawn from the recent set of weekend experiences is that my RA is not under control and I should probably avoid strenuous physical activity. But of course, I already knew that going into the weekend. The difficulty lies in the fact that life must go on and I was not about to miss this once-in-a-lifetime celebration. I just have to be ready to pay the consequences afterwards.

Creative Commons Photo Credit: http://commons.wikimedia.org/wiki/File:Tired_brown_bear_050701_01.JPG

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While waiting for the next treatment plan to be revealed by my rheumatologist this Friday, the RA beast seems to be running at will. Joint swelling, redness, warmth along with fatigue are at levels rarely experienced during this RA journey. And this means that pain levels have also increased. At one point a few days ago, finger joint pain induced wincing almost to the point of tears making me ready to pull out the “big gun” painkillers. Friends came over to play spades and it was difficult to hold the cards. Besides the regular squaking joints, joints that tend to lay low, rarely speaking that RA is there, are now screaming loudly. Such was the case a few days ago when the elbows were quite conspicuous. Laying down to bed was anticpated in an effort to get some much needed rest. But the pain was too great. Adding insult to injury, knees and ankles joined in the chorus and throbbed incessantly in an effort to gain attention. Rest was not to be had. No amount of tossing or turning helped. I arose out of bed and stumbled back downstairs and turned on the TV. Of course, this was Thursday night and the live coverage of the tragic events in Boston were unfolding. Attention was rivted to the talking heads trying to get the latest scoop until I crashed from exhaustion somewhere around 2:30 a.m.

Sleep with RA can be an elusive goal. While not inspired by RA but likely by his own personal battles, a poem by the famous English writer Samuel Taylor Coleridge captures the “Pains of Sleep” while living with rheumatoid arthritis.

English: Image of poet Samuel Taylor Coleridge...

THE PAINS OF SLEEP

by: Samuel Taylor Coleridge (1772-1834)

Ere on my bed my limbs I lay,
It hath not been my use to pray
With moving lips or bended knees;
But silently, by slow degrees,
My spirit I to Love compose,
In humble trust mine eye-lids close,
With reverential resignation
No wish conceived, no thought exprest,
Only a sense of supplication;
A sense o’er all my soul imprest
That I am weak, yet not unblest,
Since in me, round me, every where
Eternal strength and Wisdom are.
 
But yester-night I prayed aloud
In anguish and in agony,
Up-starting from the fiendish crowd
Of shapes and thoughts that tortured me:
A lurid light, a trampling throng,
Sense of intolerable wrong,
And whom I scorned, those only strong!
Thirst of revenge, the powerless will
Still baffled, and yet burning still!
Desire with loathing strangely mixed
On wild or hateful objects fixed.
Fantastic passions! maddening brawl!
And shame and terror over all!
Deeds to be hid which were not hid,
Which all confused I could not know
Whether I suffered, or I did:
For all seemed guilt, remorse or woe,
My own or others still the same
Life-stifling fear, soul-stifling shame.
 
So two nights passed: the night’s dismay
Saddened and stunned the coming day.
Sleep, the wide blessing, seemed to me
Distemper’s worst calamity.
The third night, when my own loud scream
Had waked me from the fiendish dream,
O’ercome with sufferings strange and wild,
I wept as I had been a child;
And having thus by tears subdued
My anguish to a milder mood,
Such punishments, I said, were due
To natures deepliest stained with sin,–
For aye entempesting anew
The unfathomable hell within,
The horror of their deeds to view,
To know and loathe, yet wish and do!
Such griefs with such men well agree,
But wherefore, wherefore fall on me?
To be loved is all I need,
And whom I love, I love indeed.

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My rheumatologist believes that I may have a combination of rheumatoid arthritis (RA) and ankylosing spondylitis (AS). I have had a positive rheumatoid factor (RF) test and I present classic examples of inflammation and damage in joints commonly associated with RA including in the proximal interphalangeal (PIP) and metacarpophalangeal (MCP) joints in both hands. Add to that list, symmetrical joint presentation in the wrists, shoulders, hips, and knees along with fatigue and it seems like RA. At the same time, my rheumatologist noted limited spinal mobility and many problems with my ankles and Achilles’ tendons which are common with AS. My first autoimmune symptom, which occurred years before joint problems, was inflammatory uveitis in both eyes. While Achilles tendon problems and uveitis can be associated with RA, they are more commonly seen in AS patients. But a test for HLA-B27, a common genetic test related to ankylosing spondylitis (AS), was negative. These blood tests are not 100% accurate and the official diagnosis in my chart is RA (diagnosis code 714).

photo (8)Muddying the water is the fact that I have been through a slew of RA treatments over the past four years in an effort to find a combination that works for the long term. I’m currently on Actemra infusions and now going back to add leflunomide (Arava) in an effort to capture the earlier success with Actemra. While many RA patients find relief from the most common treatments like methotrexate, Enbrel, and Humira, it seems to elude 30-40% of patients.[i] Every person seems to respond differently to various medicines and doses.

This personal evidence leads me to believe that there may be different sub-types of RA. In a recent conversation at the RA site on HealthCentral, the notion of sub-types of RA was mentioned. We already know that there are different types of inflammatory arthritis including RA, AS, psoriatic arthritis.[ii] And each of these diseases presents different patterns and may be treated with similar and/or different medications. But there seems to be a lack of scientifically defined sub-types of RA.

According to researchers from the Netherlands, “Rheumatoid arthritis (RA) is a heterogeneous disease with unknown cause.[iii] Differences in genetic expressions of RA patients were seen by these researchers lending some credence to a genetic link to sub-types of RA. In an earlier study of the genetics of RA in 1989, researchers found a gene called HLA-DR was found in 83% of 149 patients with classical or definite RA.[iv] But no explanation is given for the 17% of RA patients who did not show the gene. In 2010, a group of researchers found four genetic sub-types of RA.[v] Japanese scientists found genetic differences at the molecular level. They stated, “Data from genome-wide screening, transcriptional profiling, and animal models indicate that RA consists with heterogeneous disease subsets.”[vi] Some researchers even found different emotional responses in RA patients.[vii]

While the causes of RA are not completely evident, most scientists suspect a combination of factors including genetic and environmental (see earlier post on the triggers of RA). Scientists are now beginning to unravel the complexities of RA and find that there may actually be a variety of sub-types of the disease. I hypothesize that future research into RA and other autoimmune diseases will reveal that genetics and environmental factors impact the way individuals present symptoms and respond to treatments. This knowledge may lead to definitions of RA sub-types and better treatments in the future. In the meantime, I’ll keep experimenting with treatments in order to find a combination that works.

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ShowUsYourHands_badge_125x125There were two primary reasons I started blogging about RA soon after my diagnosis. The first was to tell my own story so that other people with RA could relate to the issues involved with suffering with this insidious disease. If you come here often, you know that given my science background, the the scientific/analytic side of my thinking comes out in my writing. The second reason was to advocate for people suffering with RA and to increase awareness in some small way. And for this second reason I want to draw attention to a wonderful effort called Show Us Your Hands. Read the stories, view the interactive collage (it brought me to tears which is no easy task), read the personal stories, share with friends and family, complete the survey, and financially support the awareness efforts. It’s the stories of real patients who daily suffer with the impact of RA that helps spread the truth about our experiences. Sometimes I get fearful about letting people around me see the physical or emotional impact of RA. But we can’t be afraid to show the truth. Show Us Your Hands gives us the strength and medium to help accomplish this goal!

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450px-Walking_ManThe other day I walked into the kitchen and my wife laughingly said to me, “You’re walking like Frankenstein”. I laughed back because I knew that I was like the “living dead” for many reasons but mostly because of changes in my joints. I have bursitis in both hips which radiates pain down the thigh and in the buttocks (I got two cortisone shots recently and they did nothing – but that’s another story), cartilage damage in both knees, and three surgeries on my ankles. Add to that, I could barely get out of bed and walk around this morning due to sharp pain in the same area of the right ankle that’s had two surgeries. I’ve felt that pain before which was from erosion in the heel bone causing spurs to dig into the Achilles tendon. Yep, I was walking stiffly and probably looked like a monster from a movie.

It’s a natural tendency to make adjustments due to pain or joints that aren’t working as designed. Joint changes from rheumatoid arthritis seem to be inevitable As bone and soft tissues are attacked, damaged, and eroded, the joints can no longer work as they should. Fortunately, disease modifying medications can slow down the damaging biochemical processes. In spite of being on medications, changes are still affecting my movement and activity.

When the term arthritis is mentioned, the first thing that comes to most people’s mind is probably bone damage. With the more common osteoarthritis (OA), there may be damaged cartilage causing bone to rub together. But with rheumatoid arthritis (RA), the immune system attacks the body’s own tissue. The capsule surrounding the joint, called the synovium, becomes enlarged due to an increase of immune cells. Eventually an overproduction of bone eroding cells and enzymes begins to erode bone tissue and soft tissues.[i] The soft tissues that hold the joint together including tendons, ligaments, and cartilage are also damaged.[ii] [iii] When all of these tissues become affected, the entire skeletal structure designed for movement cannot work properly. Add to that stiffness caused by RA, and the result is walking like Frankenstein!

My joints used for walking are changing and the effects are becoming noticeable not just to me, but to those around me. Add to that the fact that any hope for strenuous physical activity is pretty much gone for now. My daughter wants to go snow skiing but the best I could do is drive her there and sit in the lodge drinking cocoa. The hope is that treatments can keep the process at bay long enough so I can avoid more surgeries and using assistive devices just to carry out that common, everyday task we take for granted – walking.

Photo Credit: By Stefan Eggert (User:Berreu) (Own work) [GFDL (http://www.gnu.org/copyleft/fdl.html) or CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0/)], via Wikimedia Commons

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 Definition of TWINGE
transitive verb
1 dialect : pluck, tweak
2: to affect with a sharp pain or pang[i]

A typical day with RA includes gentle reminders such as stiff and tender fingers while typing, difficulty getting up out of a chair if sitting more than 30 minutes, a knee that pops loudly while flexing, elbows that ache, and then there’s the ubiquitous fight with fatigue. After three ankle surgeries on torn Achilles tendons, tendon insertion tears, and bone erosion in the heel, these areas are omnipresent reminders of RA. Most days it’s tolerable and doesn’t impact walking – although strenuous exercise is out of the question. But every once in a while when going up or down stairs a sharp pain comes out of nowhere to scream a very loud reminder. This twinge catches me by surprise. Many times the pain is so bad that I must stop on the stairs and change the way I walk. Many have seen me limp away from the stairs. The sharp pain usually lasts for a few hours before subsiding. Once the major pain is gone, I usually forget it and move on. But the little voice in my head always asks if there is more RA-induced damage that will result in another surgical procedure someday. Ignoring that voice is helpful as there’s nothing to do about it now.

Recovery from sinus surgery seems to be going well. It’s been 10 days and the bleeding is almost gone, breathing is better, headaches are less intense, and energy levels are slowly returning yet with peaks and valleys. The best news is that today was the last dose of the antibiotic Cephalexin. This is the last of four antibiotics taken over the past 3 months. These strong antibiotics impact the GI system in very uncomfortable ways which won’t be missed. Arava will be added back to the RA treatment regimen tomorrow. Of course, Arava brings its own set of GI side effects which aren’t too bad at the 10mg per day level. The next Orencia infusion is Tuesday and I’m glad that I didn’t have to miss a dose during this entire sinus situation. Hopefully sinus infections will be a thing of the past.

Early next week I plan to write a post about the role of cell death in rheumatoid arthritis, genetic links, possible treatments, and how this is connected to cancer. Have a good weekend!


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