Chronic Pain Patients Need Effective Pain Management

RA is a painful disease.  It damages joints and often has extra-articular manifestations.  My tendons are greatly affected by my RA.  You see, the tendon sheaths are lined with synovial tissue.  We all know how are immune systems zero in on synovial tissue.  My tendons are swollen and inflamed, and they stay that way.

Consequently, many of us depend on controlled substances to allow us some quality of life.  I wear a Butrans pain patch.  I also have two other medications I can use for break-through pain control.  They are all "controlled substances."  Every time I pick up one of these prescriptions, I show my drivers license and sign my name.  I understand why this is necessary.  Evidently, many people have become addicted to prescription pain medications.

There is a difference between being addicted to a drug and being dependent on a drug.  I am dependent on my pain medications.  Without these drugs, I would have no quality of life.  I would be in bed most days...all day long.   I don't "crave" any of the medications.  They don't even mask all of the pain.  This is probably a good thing.  I have never felt "high" or incapacitated by any of these pain medications.

I had an appointment with my orthopedic doctor a few weeks ago.  I appreciate my orthopedic doctor.  He has treated me for ten years.  When the bursitis in my hips wakes me up at night, he injects steroids. I have also had my shoulders injected, and Synvisc and Orthovisc shots in both knees numerous times.

I was surprised during my last visit to my orthopedic's office. I was asked to provide a urine sample.  The test immediately tells the doctor if there are opioids present in your body.  My orthopedic's NP explained to me that a report is generated a week or two later that shows if the medications are present in therapeutic levels.

I found this perplexing.  I said, "So, this tells you if people are taking their medications properly?"  The NP responded with a story.  She said, "Say a patient comes in here and walks out with a couple of prescriptions.  They come back in a month and we do the test.  We find no medications present.  What does that mean?"

I thought a moment.  My first thought was that the patient was not being compliant.  Then a light bulb appeared over my head.  "Oh, I said.  They are selling the drugs?"  She shook her head in an affirmative manner, and I finally understood.

Chronic pain patients are always being questioned about their pain medications.  Sometimes it is family doing the questioning.  Sometimes, it is friends.  Sometimes, it is a doctor.  I walked out of my doctor's office feeling a bit sad.

I was thinking about all of the people who are addicted to drugs.  I was thinking of all the people who work the "system" for financial gain.  Then I thought of all of the people suffering in pain because of the reckless and illegal behavior of a few. 

I am not unhappy about the urine test.  I think it is a good thing that my doctor knows I am taking the medications just as I am supposed to take them. 

I am unhappy about all of us who must have pain medication to function.  I know several RA patients who have been told by their family members that they just need to eat a different diet, exercise more,  take this or that supplement, and they will be cured.   This kind of unsolicited advice does nothing to help the RA patient who is already living with an invisible disease.

People are always questioning us.  How could we look so well, and yet be sick?  How can we be fine one moment, and suffer intense pain the next.  Why do we require so much rest?

The prescription drug situation is just one more obstacle for chronic pain patients to traverse.  This makes me sad.   I am sad because I have no answer.  I do not know how to make this situation better.  Many RA patients are required to see Pain Management Doctors, and sign contracts that say they will not obtain prescriptions from any other source.  That is an issue if and when one must visit the ER.

I do not know where this is going to lead, or how it will end.  My only wish is that people who truly need pain medication are able to have it.  I am blessed to have a GP who manages my pain.  Many RA patients are denied pain medication until they are in so much pain they are confined to bed.  Some doctors, including rheumatologists, often unjustly label their patients as drug seekers.

If you have a RA and are having difficulty finding a doctor who will provide pain medications, please do not give up.  Advocate for yourself.   Keep a file full of your x-ray, MRI, and CAT scan reports.  Take them to your doctor's appointments with you.  Documented joint damage and swelling could help your doctor understand that you are simply asking for help with pain control.  Without pain control, we have no quality of life.

RA Medications: Have You Found Your Silver Bullet?

Actemra seems to be my magic biologic bullet.  I have been on this particular biologic drug since January of 2014.  I switched from weekly injections of 162 ml to the infusions three months ago.

Actemra knocked down my inflammation markers ( CRP and SED rate ) almost immediately.  I did not have any apparent side effects when I was injecting weekly.  The infusions do come with a day or two of down time due to fatigue.  The day of the infusion, and sometimes the day after the infusion, I feel a little sick to my stomach.  All in all, well worth it.

The reason I switched to infusions was because I was approved for Medicare in March of this year.  None of the Plan D prescription drug plans available to me covered Actemra, except for one.  That one had a copay of 1,000 a month.   Medicare covers 80% of the cost of the infusion, and my supplemental insurance covers the rest.  I was told each infusion cost around $5,000.

Actemra does have a foundation that can help those who cannot afford the medication.  You must apply for the assistance every year, but it is a blessing to many.  People who are single and on disability have a very tough time affording their medications.  Their income is fixed.  They cannot work, and no one else in the household is bringing in income.  

My husband will be retiring soon, and he worries about us being able to afford my medications.  I told him we will take one day at a time.  He can still work a couple of days a week, but he doesn't have to work as hard as he is working now.  I feel a bit guilty because I think he could have retired last year if I did not have RA.  

I have two prescriptions that cost 350.00 a month.  One is my Butrans pain patch, and the other is Advair for asthma.  I am in the proverbial "donut hole".  Until we have another $4900.00 in medication expenses, I will be paying half of the retail cost of my prescription medications.  I wanted to see if I could get by using Advair only once a day.  The script is to written for twice a day.  My experiment failed.  I must use Advair twice a day. 

Without the Butrans pain patch and the Actemra infusions, I would be confined to bed.  My quality of life would be minimal because the pain would be intense.  I am thankful for these medications.  I wonder what the future holds, and I think about all of the people with autoimmune disorders who need help paying for their medications. 

For now, I will take one day at a time, and be thankful for each day.  I will continue to follow my own advice............Do not let anyone or anything steal your joy. 

 

RA & Mobility: Are You Worried About Your Future?

Do you ever think about your future with RA?  I notice most people avoid talking about RA as a "progressive" disease.  We are blessed to have biologics and other medications available to us.  These drugs slow RA down.  Still, don't you wonder from time to time just how "progressive" your RA will be?


I started injecting Actemra in January of 2014.  RA was attacking my feet at the time.  None of my toes touched the ground, because my RA is in my tendons sheaths.  My tendon sheaths are tight and inflamed. 




I was anxious to try Actemra.  Gone was the fear I had in the past with previous biologics.  I needed something to stop RA in its tracks.  My rheumatologist told me that she had ten "problem" patients, and she prescribed Actemra for each one of us.


My specialist is highly intelligent, and she didn't mean anything derogatory about calling us "problem" patients.  She isn't the most diplomatic person, but I love her communication style.  It is direct, and to the point. 


I didn't have a problem injecting the new medication.  I had injected Humira in the past.  By the way, Humira shots do sting---even when you warm the med up to room temperature.  I had no problem with stinging when I injected Actemra.  As long as I let I warm up for 30 to 45 minutes, there was no "sting" at all.


Actemra worked quickly for me.  It knocked down my SED rate and my CRP (C-reactive protein ) numbers after six weeks of injections.  It did not stop RA from focusing on my feet. I injected Actemra every week.  Many people inject every other week, and have good results.


Last fall I experienced an abscessed tooth, a sinus infection, and a gum infection all at one time.  I had the tooth removed, and took lots of antibiotics.  During this time I was off of Actemra, and I missed it almost immediately.  The overall stiffness and fatigue levels were overwhelming.


I am back on Actemra now, but I have switched from the injections to infusions.  My fatigue level is better, but my feet are not better. My rheumatologist recently prescribed custom orthotics with metatarsal bars.  I was fitted for those, and I should have my orthotics within a week to ten days.


Once again, I am hopeful.  I am looking forward to getting my balance back.  I am anxious to see if walking correctly helps my knees, hips, and back.


Still, in the back of my mind there is a quiet little voice.  It is whispering to me.  How long will you be able to walk?  Will Actemra infusions be able to halt the joint and tendon destruction?


I don't know the answers to those questions, but I do have hope. I have a great rheumatologist, a great General Practitioner, and an involved orthopedic doctor.  I know they will do everything they can to keep me mobile.


There will probably be a lot of adjustments in my future.  There will probably be many adjustments for you as you live your life with RA.  That is what we do.  We live with RA.  We adjust.  We keep moving............................one day at a time.

Critical Looks

It is such a beautiful fall day, I decided to go into town for a few things.  The sun is shining, the breeze is light, and the temperature is in the seventies.

I have a new puppy, Sadie, who loves to go with mom.  I put her in her booster car seat, and away we went to "slay dragons".   Sadie was happy.  I was happy.

We made three stops.  First on the list was Wal-mart for a few everyday household items.  Our little Wal-mart permits dogs in the store as long as they are in the cart, or the owner is holding him or her.

Sadie loves looking at all of the people.  She sniffs the air.  Her ears perk up as she looks all around.  It is a new world for her, and good for her socialization.

As often happens, I saw many people I know at Wal-mart today.  I greeted them warmly.  It is such a glorious day.  I was in such a glorious mood.

As I turned to head toward the checkout counter, my eyes caught view of one of my acquaintances.  She had that "look" on her face.  You know the "look" I am talking about.  You catch people looking each other up and down quite frequently. 

Personally, I have always wondered why people do that.  It makes me uncomfortable. 

After checking out, I was putting my cart away, and caught another "look" from another acquaintance.  This one was even more "critical".

I am having a good day today.  I don't need my cane.  I have only a slight limp. Two steroid injections a couple of weeks ago are still in my system.

I know that people look at other people a lot.  I suppose that is "people watching."  Still, the looks I saw today were more critical than most.

I imagine these two individuals were wondering how I could be walking with a cane one day and not the next.  They are puzzled.  I get that.

I wish I didn't get those "looks."  I wish everyone understood AI diseases.  As my late mother used to say, "If wishes were horses, beggars would ride."

In the scheme of things, what does it matter?  What matters is this:  I feel better today than I have in a while.  I am happy.  No one is going to steal my joy!

RA Dancer: Refreshing The Body & The Soul

RA Dancer: Refreshing The Body & The Soul

Refreshing The Body & The Soul

I awakened this morning thinking it was going to be a great day, as far as my days with RA go.  My mind was clear.  Everything had crisp edges.  Everything was bright.  Aha, I thought!  No brain fog today. 

Two hours later, I was a completely different person.  The mind fog was back, and it was thick!  Undaunted, I pushed myself to get into my little Ford Ranger truck and drive myself to town.

I live in the country, so “town” is 30 minutes away.  I really wanted a hair cut.  I put haircuts off until I just can’t stand it anymore, and then I am past ready to go.

Methotrexate has not caused me to lose any hair, but the hair it leaves me with is dull and dry as straw.  I use hair products to help, but they cannot work miracles.

I have also been injecting Actemra for two months now.  I may be wrong, but it seems to me that Actemra only compounds the hair “issues”.

So, there I was, driving down a country road, windows rolled down and the wind blowing in my face.  The sun was shining, and I was enjoying the first-day-of-Spring sunshine.

I should have been feeling glorious, but I was only half glorious.  The longer I drove, the more I felt as though I were moving through concrete.  I was stiff.  I was slow.  I was tired.

I made it to town, and managed to sit in the stylist’s chair and not fall asleep as she cut inches of dry hair off of my head.  That, at least, was relaxing. 

I left the hair stylist feeling about the same as when I went in, except my hair was much lighter.  I drove to my husband’s place of employment and picked him up for lunch.  God bless his heart, he didn’t say anything unflattering about my new hair cut.

My husband prefers my hair a little longer, but he understands my dilemma.  It is difficult for me to take care of my hair.  Stiff shoulders and finicky wrists make hair styling such a chore.

My partner of 36 years and I drove to a restaurant that specializes in smoked meats, and had the best hamburger I have hand in years.  Now that I am not out every day working, a good hamburger is a treat.

Again, my husband did not protest, even though I know he eats out five days a week for lunch.  Most of the fare in our small time is also of the hamburger variety.  I am blessed to have such a supportive husband.

After lunch, I drove my husband back to work, and headed home.  I thought maybe I was feeling a bit better, but soon I discovered I was not read for prime time yet.

I took the back roads home.  I didn’t trust myself behind the wheel on the highway.  I had not taken any break-through pain meds.  What I was feeling was simply the heavy, heavy weight of RA fatigue bearing down on my body.

Once home, I took a two hour nap, followed by pain medicine.  I am feeling a bit better now, but still not ready for prime time.

Isn’t it strange how we can feel almost good one minute, and awful the next?  Actemra has knocked down my inflammation markers.

I still have swollen and tender joints, but I was hoping the oppressive fatigue part of our disease would stop ambushing me at the most inopportune times.  Alas, it is not so. 

I know better than to try to fight RA fatigue.  The only thing to do is to rest, and to take pain medications if necessary. 

I did go outside and sit on my porch this first day of Spring.  I removed my socks and shoes so that I could feel the cool porch beneath my feet.

The wind blew through my hair, and the sun warmed my body.  I took a deep breath, and exhaled slowly.  My soul was refreshed, and that cannot be bad for a body that needs refreshed, too. 

Heart Disease And RA: Listen To Your Body

I lost a friend recently.  Officially, she didn’t make it through aneurysm surgery, although she hung on for several days trying to get better.

My friend’s name was Winnie, and she was a very young 75 year-old.  Winnie was funny, smart, and kind.  She brought joy to the world.

The reason I say she “officially” died from complications of surgery, is that we all know how hard RA is on our cardiovascular systems.  I have read several articles and studies stating that most RA patients die from cardiovascular disease.

Winnie had RA for several years.  She was once in a wheelchair.  She battled back from that and was walking with a cane thanks to the new biologic drugs.

Everyone who is living with RA should have a cardiologist consult.  Another dear, dear friend of mine had two stents placed in her heart earlier this week.  She is only 46 years old.

Thankfully, my friend had a “gut” feeling that something wasn’t right.  Instead of attributing her chest pressure and shortness of breath to RA, she went to the ER.

So many of us have more than one AI disease, and we often have other complicating disease process.  It is difficult for us to distinguish between RA flares and true health emergencies.

If you would like to read more about my best friend’s experience with chest pressure and heart disease, please click here.  My friend is a retired RN, and offers helpful information that is easy to read and understand.

In the meantime, please be kind to yourself.  Be well!