One Patient's Positive Perspectives

Posts tagged ‘Inflammation’

Lupus, tendons and the happy sometimes pedestrian

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Shopping in shoes that hurt

There is nothing more difficult to bear than walking in shoes that make your feet hurt.  When lupus focuses on the tendons in my feet and ankles, my ankles swell and it seems no pair of shoes is comfortable.  Usually, I have worn my high quality sneakers to go shopping.  Lately, I have worn them to work with slacks to baby my swollen tendons.  However, on Saturday, my sneakers were soaked in a deep puddle during the morning’s drenching rain storm.

nike-air-flightposite-gold-puddle

Sneakers soaked in a deep puddle!
Photo credit:
http://theshoegame.com/articles
/nike-air-flightposite-photography.html

Even in Arizona, we have very cold weather in January and February, and with several days in a row of non-stop rain, it was too cold to wear wet sneakers on a shopping trip.  I slipped my prescription orthotics into a pair of reasonably comfy flats, and set out shopping on Saturday.  What a mistake!

Let me back track a little and explain.

I had put off shopping for a family member’s birthday as long as possible because of the inflammation in my joints for the past couple of weeks.  Now, my time was gone to buy some other gifts I also needed, so Saturday was my last available chance to shop for them.

cchttp://bellablvd.typepad.com/bella_blvd/ 2009/10/designer-spotlight-brittny-lejeune.html

Gift Shopping on Sore Feet

Before I was finished shopping at the first store, my feet were hurting and the back top edge of my shoes was riding too low on my heel because of the orthotics.  The shoe back was pressing into the back of my aching Achilles tendons, and very soon I could hardly take another step.  My feet were not going to last the afternoon without some serious intervention!

As soon as possible, I finished up quickly at the first store and then hobbled to my car to drive to the nearest Kohl’s department store.  I had only one mission in mind to do first – I would buy some new, comfortable shoes before destroying my tendons in what I was wearing.  I was determined that giving up on the shopping trip was just not an option! I thought, maybe I could also find something that looked better than sneakers to wear to work on lupus flare days.

Let me give a little more background.

butterfly on foot 2

Lupus Patient who shredded
her Achilles tendons

I know a lupus patient who shredded her inflamed and swollen Achilles tendons when she was in lupus flare several years ago.  Now, she is wheelchair bound without hope of repair for her ruined tendons.  Then, a few years ago I shredded one of my own Plantaris tendons where it branched off the Achilles tendon in my right calf.  At the time, I had been in a lupus flare and was performing some mildly athletic activity.  Unfortunately, I forgot to consider the risk of tendon injury during flare.  Then a couple of years ago, I came within a few steps of shredding the tendons in my heel while walking back and forth between the hotel and events at a legal conference in Boston.

Therefore, now, I am very, very careful when my tendons are swollen or sore.

Achilles tendon injury
Photo Credit:
http://www.scripps.org/articles/
3372-achilles-tendinitis

By the way, shredding an Achilles or Plantaris tendon is suddenly and excruciatingly painful.  While my torn Plantaris tendon hurt a great deal and grounded me for a couple of days, I understand that an Achilles tendon is much, much worse.  When the Achilles rips, it has been said to feel like a gun shot in the calf.  Plantaris tendons are optional, but Achilles tendons are essential when it comes to walking.  Since I like being able to walk, I really like the idea of keeping my remaining leg tendons as healthy and whole as possible.

shoes_if95092

Ultra-light, comfy and supportive

So, my Saturday shopping goal was achieved before the afternoon was over.  First, I found the new pair of shoes that helped me finish the rest of my procurement mission.  I found a pair of Sketchers Go Walk slip on shoes that are now my new favorites.  They were a little more pricey than I would have liked, but are light as a feather, and are amazingly comfortable and supportive.

I have even worn them to work for the past two days.  I think they have contributed to the improvement and healing of my sore foot and ankle tendons, because tonight, my feet and legs are much less painful.

Finding suggestions for reasonable lupus accommodations

Walking today with little pain

Today, I walked between buildings across the campus of my workplace without hurting my feet and ankles, and was even able to keep up with my associate as we crossed the plaza. For the past three days, my feet have been better than they were at the beginning of my Saturday afternoon shopping expedition, or for that matter, at any time in the past two to three weeks.  What a relief!

Tonight, I sit here as a much more comfortable and happy sometimes pedestrian.

[Note:  The product endorsement contained in this post is unsolicited and completely uncompensated.]

Lupus arthritis and a string of things

Arthritis and difficult activities

Some of us lupus patients and those with similar types of inflammatory arthritis find that activities of daily living are sometimes nearly an insurmountable challenge.  Sometimes, with inflammatory arthritis, just doing normal everyday activities of life becomes much more difficult than we would like!  Lupus, psoriatic, rheumatoid, gout or other auto-immune or inflammatory arthritis can affect hands, wrists, elbows, shoulders, hips, knees and feet.  The inflammation and pain can impair normal functions, and can be very frustrating at times.

Thankful for what I can do again.

As I was driving to work this week, I pondered a list of some everyday things that lupus arthritis has affected in my personal life. Somewhat recently, I after ten years off of the NSAID Sulindac due to remission of joint inflammation, I started taking it again.  I was greatly relieved that, when added to my other lupus medications (Benlysta, plaquenil, prednisone) the resumed prescription NSAID relieved most of my arthritis symptoms.  The severity of increasingly painful and disabling arthritis in my hands was greatly reduced.

I have the use of my hands back!  I was thankful as I thought about these simple daily activities that I can do again or at least do better.  Just a couple of months ago these activities were at times excruciating and nearly impossible:

Mornings

holding a hair dryer
clipping fingernails
buttoning clothes
putting on pantyhose
buckling shoes
fastening a necklace or bracelet clasp
opening pill bottles
sealing a zippered sandwich bag
pulling the foil seal off a coffee creamer bottle
opening my favorite thermal Starbucks mug

Out and About and at Work

opening a car door
opening binder rings
using a stapler
opening a new bottle of soda
opening a plastic packet of Taco Bell sauce
carrying a shopping bag
walking through a shopping mall
climbing a flight of stairs
putting a case of soda into a shopping cart
pulling credit cards out of a wallet
opening plastic merchandise packages

Evenings

turning the key in a stiff lock
cutting uncooked meat with a knife
turning on appliance switches
opening a soda can or bottle
turning the knob on my can opener
holding a heavy skillet
stirring stiff cookie dough
pushing down the faucet sprayer button
taking off boots
scrubbing dishes

Weekends or Anytime (some of these I still can’t do)

turning socks right-side out
doing the laundry
changing bed sheets
moping a floor
pulling weeds and grass in the garden
walking up stairs
washing my car
playing my violin

Vacations (these are still on the “no” list)

Walking through amusement parks in the daytime
Roller coasters
Canoeing (part of my past)
Hiking

My choice how to respond

When each of these actions is difficult and painful to do through out my day,  I have a choice how I will respond to the frustration and difficulty of the moment.

Can I make the pain go away in that moment?  No.

Can I by wishing it so, make my joints strong and healthy again?  No way.

Can I make my lupus go into remission, or better yet go away?  Certainly not!

However, I can adjust and do things in new ways, slow down, pace myself, and at times humble myself to ask others to help me with what I cannot do myself.

Sliver of light of God’s wisdom

I resolve to not let this minor string of daily inconveniences steal my joy!  Perhaps, if I can just borrow a sliver of the light of God’s wisdom, I can then see reasons to thank Him for these present difficulties.  Out of the little struggles of day-to-day life such as these, our character is formed.

Perhaps, a new list of things that I can still do, despite my lupus, could be prime mental fodder for my next commute.

Lupus rants, ridiculous recommendations, and real reasons to exercise

No miracle secret lupus cures!

I recently read a spirited rant from another lupus blogger about all the mindless things people say and suggest to lupus patients, such as suggesting that enough exercise will “cure” lupus. There is no secret cure for lupus! Yet, many well-meaning people persist in propagating myths about supposed miracle cures.  While some patients do go into full and lasting remission, they still have lupus, able to flare and become active again, without notice or clear cause.

Lupus still remains unpredictable and incurable.  Perhaps some day that will change, but for now, that is still the truth about lupus.

News Headlines

If a real lupus cure were suddenly discovered, it would be sensational news!

We would read about it on the front cover of Lupus Now, Arthritis Today, JAMA, Newsweek, U.S. News & World Report, CNN and Fox News, and the good news about it would go viral on the Internet.

The leading rheumatologists and research doctors would be interviewed on national television news and as guests on major television and radio talk shows.

The doctor who finds a cure…

The doctor who finds a cure for lupus will become a household name and might even win the Nobel Peace Prize in Medicine.

A real lupus cure would not stay a secret for long!

Reading the other blogger’s rant made me think about exercise, and some of the reasons I do it.  Although a moderate amount of careful exercise benefits lupus patients, it certainly is no cure! However, the right kind and amount can help a lupus patient be a healthier and stronger, and that is a great thing.  I feel better when I exercise, like anyone else with lupus or without it would.  Exercise is always an important part of a healthy lifestyle for any person, including lupus patients.

Exercise is of some profit

A lupus patient needs to be careful not to overdo exercise beyond the level safe for the current state of their medical condition.  Sore, painful joints and inflammation are red flags to take it easy, or to postpone exercise if  symptoms are flaring too much.  Then, when the lupus flare subsides, the exercise can resume or go back to normal levels.

It seems harder to accept a suggestion to exercise from someone who doesn’t have lupus or a similar auto-immune illness. It is easier to accept the recommendation if the advice come from another lupus patient who actually exercises.   Another patient can tell me how exercise it helps them.  Another lupus patient can understand why it is so hard for me to want to think about exercising if every joint hurts.  They also know why when the thought of moving seems like it will take herculean effort, how lupus joint pain and fatigue are counter-intuitive to the idea of movement and exercise.  It is so hard to imagine when it hurts to move, that getting up and moving more will make it hurt less.

Doctors give me reliable treatment advice

The suggestion to exercise is much harder to accept from someone else (other than my rheumatologist) who thinks they know exactly what will improve my lupus, or worse yet,  who thinks their suggestion to exercise, (take a supplement, wear some special metal jewelry, or some other thing) will actually cure my lupus.

I don’t necessarily want to hear these people’s ideas of what they think I just “need to do to get well.”  I want all my serious treatment advisers to have medical degrees!

However, there are some very important reasons why I exercise two to three times each week:

  • My rheumatologist recommends it, and I respect his advice
  • It will help me fight osteoporosis caused by steroids
  • It strengthens my muscles and improves my circulation and tendon health
  • It helps reduce my risk of heart problems that are higher in lupus patients
  • It increases my oxygen exchange, strengthens my lungs and helps my asthma
  • It is good for my digestion
  • It strengthens my spine and reduces the frequency of chiropractor visits for three herniated cervical disks
  • It also helps morning lupus brain fog clear up more quickly as increased circulation stirs up my body’s metabolism.
  • It raises endorphin levels that naturally elevate my emotions/mood and reduces my perception of pain.
  • It helps me fight weight gain from an increased appetite from steroids.

Exercise WILL improve how I feel!

I get my most of my exercise on an indoor cycle with a fluid trainer, and when I have access to an indoor pool, I have really enjoyed swimming.  I also do some gentle yoga exercises to improve my spine and joint health.

Even though there are plenty of people out there with some crazy ideas about how to magically cure lupus, there are some real things we can do to improve our lupus outcomes.

Exercise is something we can definitely do that may improve how we feel, at least a little.

Lupus when picking up paper hurts

turning pages was painful

My hands have given me a lot of trouble lately, and normal actions have been unusually painful.  Amazingly, I can play the piano without increasing my joint pain, but a few very simple tasks have been a different story! Today I was convinced it is time to get help.  Yesterday I found it hurt to rip open an envelope.  Today, I was sitting at my desk at work, turning the pages of a reference binder and realized that even picking up the pages and turning them was painful.  That was the last straw!

I think its time for help.  Lately I have had increasing trouble with buttons and zippers and have had to ask for help.  Even putting on socks or pantyhose hurts, but I am not about to ask anyone to help with those.  (Well, maybe my husband could help with the socks.)  Pushing down the button on the car door handle is almost impossible without using both thumbs, and opening snug jar lids or thermal mugs is downright impossible.  I have even had trouble getting my credit card out of my wallet.  The maintenance dose steroids are not helping.

It has been a long time since I last took non-steroidal anti-inflammatory drugs (NSAIDs) to control the inflammation in my joints and lupus arthritis, not since before Rituxan infusions several years ago.  Now, I think it is time to ask for them again.

I cannot take any of the over-the-counter varieties such as aspirin, ibuprofen or naproxen, so I need a prescription. Acetaminophen doesn’t count, since it is an analgesic and fever reducer, but not an anti-inflammatory drug, even though it gets grouped in with the NSAIDs.  After a major car accident almost 30 years ago, we tried all the different NSAIDs then available, and one I tolerated was an (old) seldom prescribed non-steroidal anti-inflammatory drug, sulindac.

drugs

After taking all the fancy new high-tech biologic drugs for my lupus that cost thousands of dollars per dose, maybe this old simple medicine that worked before will work again. Perhaps it is the small tree we missed in a vast forest of drug choices.  Sulindac had few side effects and controlled my ballooning joints effectively, long before I ever took methotrexate, azathiaprine, rituximab or belimumab for my lupus.

I’ve decided it is time to mention this new (old) idea to my doctors and see if they agree with my suggestion, or perhaps they will have a better idea.  I cannot accept the idea that lifting a piece of paper should  hurt!

Prognosis and Hope: Lupus Fact #28 – Normal life span expected with current treatment standards

Prognosis and Hope: With current methods of therapy, 80 to 90 percent of people with non-organ threatening lupus can look forward to a normal lifespan.  This puts about 10 to 20 percent of in a somewhat different minority group, but with proper treatment these people can expect to live long, full productive lives, too.

Medication standards for mild/moderate lupus

The prevailing standard of care for lupus patients in the first, low-risk group includes some baseline medications, specific standard diagnostic tests and common sense advice to lifestyle changes.  For the first half of the years since diagnosed with lupus, my treatments were also limited to the following baseline therapies.

Three basic drug standards for mild/moderate lupus

NSAIDs

First, anti-inflammatory and analgesic medications are the most common drugs used to treat lupus, and sometimes the only drug patients need.  Inflammatory symptoms like arthritis and pleurisy respond well to these standard drugs.  Commonly prescribed analgesic and anti-inflammatory drugs include aspirin, acetaminophen, and non-steroidal anti-inflammatory drugs (NSAIDs) like ibuprofen, naproxen, indomethacin, nabumetone and celecoxib.  Some of these drugs are hard on the stomach, or can created problems with a patient’s kidney or liver function and need routine follow-up and blood tests.  My NSAID  of choice has always been sulindac, because it was just about the only one I could tolerate due to my of inability to take all the other common NSAIDs.

Corticosteroids

Second, the Lupus Foundation of America (LFA) discusses the next class of drugs, corticosteroids used to treat flares in mild to moderate lupus cases, as well as in the most severe cases.

“Corticosteroids (also known as glucocorticoids, cortisone or steroids) are synthetic (man-made) drugs designed to work like the body’s naturally occurring hormones produced by the adrenal glands, in particular cortisol. Hormones are the body’s chemical messengers that regulate most of the body’s functions. Cortisol helps regulate blood pressure and the immune system, and it is the body’s most potent anti-inflammatory hormone. Corticosteroids prescribed for autoimmune diseases are different from the anabolic steroids that weightlifters and other athletes sometimes take to increase strength.”

“Steroid medications work quickly to decrease the swelling, warmth, tenderness, and pain that are associated with inflammation. They do this by lessening the immune system’s response. Prednisone is the most commonly prescribed steroid for lupus. Prednisolone and methyl-prednisolone (Medrol®) are similar to prednisone, and some physicians prefer to prescribe these if you have liver problems.”

steroids and cataracts

Long-term steroid use has many potentially harmful effects on a patient, and can lead to complications such as adrenal insufficiency, bone loss, cataracts, and other cholesterol related circulation problems.  My early years of moderate symptoms included times of flare that required the extra power of an occasional burst of steroids to intervene and shut down active lupus.  After many years that followed of daily low dose steroid use, my eyes are beginning to show the beginnings of cataracts, but I have not yet experienced other steroid-related problems.

Antimalarials

Third, the LFA also discusses antimalarial drugs and their cornerstone place in the treatment of most lupus patients:

“Antimalarials are used in combination with steroids and other medications, in part to reduce the dose required of the other drugs. Antimalarials are most often prescribed for skin rashes, mouth ulcers, and joint pain, but also can be effective in mild forms of lupus where inflammation and blood clotting are a concern. Antimalarials improve lupus by decreasing auto antibody production, protecting against the damaging effects of ultraviolet light from the sun and other sources, and improving skin lesions.”

“The two types of antimalarials most often prescribed today for lupus are hydroxychloroquine (Plaquenil®) and chloroquine (Aralen®). Unlike the rapid response seen with steroids, it may take months before antimalarial drugs improve your lupus symptoms.”

“Side effects from antimalarials are rare and usually mild; they include upset stomach and changes in skin color. These side effects usually go away after the body adjusts to the medication. In high doses certain antimalarial drugs may damage the retina of the eye, causing vision problems. With the low doses of antimalarials used in the treatment of lupus, the risk of this complication is extremely low. However, as a precaution, people treated with antimalarials should see an eye doctor (ophthalmologist) regularly.”

plaquenil is baseline lupus & RA drug

This third drug, Plaquenil, has been one of my a daily lupus medications for the last twenty-years.  It was the first drug my rheumatologist prescribed for my lupus, and even now, I take it every morning and evening in times of remission and flare.  In the beginning, it took several months for me to see changes they made to limiting my lupus rashes, mouth ulcers and overall disease activity.

Plaquenil is also the first line drug of choice for patients with rheumatoid arthritis (RA), and I have a friend with RA who developed severe rashes while taking plaquenil.  Her inability to take this medication has made the treatment and management of her RA much more difficult, and much less successful that those that I know who tolerate it.  My friend and I often compare notes about our medications and treatment, since lupus and RA often use the same treatments and standard protocols.

Prognosis and future standards of care

Prognosis: normal life span

Even though my lupus has at times entered the higher risk area of organ damage involving my liver and central nervous system, I expect to be able to manage my lupus with the current therapies and lifestyle changes that optimize my health outcomes.  Daily exercise, plenty of rest, a healthy diet, sunlight/UV avoidance and staying within my limits all play a part, along with medications, in managing my lupus.

The exciting new biologic drugs such as the belimumab (Benlysta) I am currently receiving by monthly infusions, are emerging as likely parts of new and developing standards of care for lupus, now and in the future.



Diagnosis and Treatment of Lupus: Fact #9 – Pain and Anti-inflammatory Drugs

Diagnosis and Treatment of Lupus: More than 90 percent of people with lupus will experience joint and/or muscle pain that can be disabling. Lupus causes inflammation in the synovial tissues inside joints of fingers, wrists, feet, ankles and knees. As a result of this inflammation, non-erosive arthritis can develop that causes pain, stiffness and swollen joints.  Decades before my lupus was diagnosed, arthritis was one of the first symptoms of my lupus that appeared as early as my kindergarten years, and recurred all through high school, college and early adult life.

Medications for lupus pain and inflammation

Medications, both over-the-counter and prescription drugs, are used to used to control the pain and inflammation associated with lupus.  Medications for inflammation include non-narcotic analgesics/anti-inflammatory medications such as aspirin, ibuprofen, naprosyn, sulindac, and non-steroidal anti-inflammatory drugs (NSAIDs). Pain medications range from simple aspirin or acetaminophen to strong narcotics used for the most severe lupus pain.  Persistent or severe inflammation at times requires the use of steroid medications to reduce swelling in involved joint tissues.

The Lupus Foundation of America provides the following information on NSAID medications used to treat painful inflammation.

“Pain and inflammation are common in people with systemic lupus erythematosus (SLE). Sometimes these symptoms indicate serious organ involvement which may require powerful anti-inflammatory and immunosuppressive drugs, such as steroids (cortisone, prednisone).

At other times the inflammation is not as severe or does not affect major organs, and a less potent drug is indicated. In these cases, other milder anti-inflammatory and analgesic drugs can be used, especially a group of drugs called the non-steroidal anti-inflammatory drugs (NSAIDs).

While NSAIDs are not approved specifically for SLE by the Food and Drug Administration, they are approved for use in many musculoskeletal pain conditions such as arthritis and tendinitis, which also afflict people with lupus.”

See, the Lupus Foundation of America web site for more information on NSAID medications.

Treatment of lupus arthritis led to a diagnosis

Other approaches to dealing with pain may include various therapies such as applying heat, gentle exercise to stimulate pain-releiving nature endorphins, prayer, meditation, bio-feedback and other non-chemical alternative approaches to pain management.  The most effective methods for reducing and coping with my lupus pain include exercise, heat, acetaminophen and sometimes tramadol for the times I experience the most intense discomfort.

One of the reasons I first sought medical treatment for my lupus arthritis pain was because I was unable to take most over-the-counter NSAIDs, and on my own could find no relief for my pain and joint swelling.  I had intense pain all night, lost a great amount of sleep, and sometimes could not walk without experiencing overwhelming pain and stiffness.  Seeking help for my severe and unrelenting arthritis symptoms eventually led my doctors to find a reason for my symptoms, and this led to my lupus diagnosis.

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