FOLLOW By Email

Wednesday, 20 March 2013

Fatigue and RA

Before I was diagnosed and treated for Rheumatoid Arthritis I had so much fatigue that I would come home from my part time job, lie down on the bed fully dressed and stay that way till morning.  I was so tired I could not even get up to eat dinner, much less make it.  That was when my fatigue was at its relentless worst.


                                      

After treatment started and I began to feel less fatigue it was still hard to keep ahead of it.  My strategy was to spend one day a week in bed resting to recover my strength to get through the other six days.

As I adapted I changed my job and my life, my hobbies and my socializing.


                                Stuck in a groove.  JapanPrint

Finally I settled into a groove - a livable one but not the ideal.  I had enough energy to work full time.  This was an accomplishment I was proud of but I had to go right home after work. Shopping stops or doing errands took too much energy so I did the least possible on weekday evenings.  Weekends were for resting and possibly groceries and visiting elderly relatives.

When I got home from work I would often lie down so I could get through the evening.  The image in my mind as I lay there without energy to even listen to music was of a doll lying in a dollhouse waiting for life to happen. It was profoundly unsatisfying.


                                    warmhotchocolate.com

It takes energy to think and to plan ahead.  If you don't have that you don't make the right choices, or any choices.  I did start to exercise on the advice of my helpful physiotherapist and found that I could do muscle tightening exercise with no ill effects. But when I did the clamshell exercise with a Theraband 5 to 10 times I found that my hips felt like spaghetti for 2 full days afterwords and made me weaker.  


                                   ca.shine.yahoo.com

It was at this point that I noticed in my reading the claims that biologic drugs improve the quality of life and sense of well being in RA. Because of this statement I worked on convincing my rheumatologist to prescribe a biologic for me.  

Of course this was not the only reason I wanted to add a biologic.  I wrote here about how shocked I was to find that joint damage still continued with methotrexate, even when other symptoms decreased, and I couldn't and still can't afford to have any more damage.

After four years on the biologic drug Humira I now have enough energy to exercise and not be exhausted for the two days following. It also means I can do errands even after working all day.  Small gains in a sense but they matter a lot.


                                                        scienceDirect.com

Here's an interesting look at the way inflammation and prolonged response to it can affect the body. In Consequences of the Inflamed Brain Dr Maier and Dr Watkins say "mechanisms that evolved to handle acute emergencies lead to outcomes that nature did not intend if they are engaged too long ... 
outcomes may become established, leading to cognitive impairment instead of brief memory disruption, depression instead of reduced mood, fatigue instead of inactivity, and chronic pain instead of acute pain. That is, physiology can become pathology when a set of processes designed to be relatively brief becomes prolonged."  go on to conclude that inflammatory events can lead to this process which includes fatigue.

I also believe that pain takes a lot of energy to deal with.


                                         stsiweb.org

Fatigue can be affected by our mindset and we can improve it somewhat by cognitive therapy but I strongly believe there is a large physical connection between RA and fatigue.  Having a positive mindset did not affect my ability to exercise and be more active. Taking a more effective drug combination helped my fatigue both now and at the onset.

I believe that other factors have a part to play but that the fatigue is caused by RA and that changing my attitude will only work if I am receiving the best treatment for the physical disease.

5 comments:

  1. Thank you Anet! I understand all of the stuff about keeping a good thought and being positive, blah blah blah, but the truth is that illnesses like RA need to be treated with more than just a smile. I won't insist that western medicine is the only way to go but I will insist that minimizing the pain, fatigue and inflammation of RA by saying that a good attitude will fix it is ridiculous. And further, it minimizes this serious illness, and can set us up to feel like there is something wrong with us because we can’t wish our symptoms away.

    Believe me if changing my attitude would make my feet stop hurting I would jump up and run down the hallway singing songs about sunshine and lollipops. The truth is that a good attitude can help you over the rough patches more than a deep depression, but it’s also important to allow yourself to feel everything, not just the good parts.

    ReplyDelete
    Replies
    1. Nice to see you again Teresa. I've been finding more and more articles about catastrophizing (exaggerated negative evaluation and attention to specific symptoms such as pain or fatigue) and that minmize our symptoms. When I post my RA link everyday I leave those out.

      I did find a good article about managing fatigue in MS and a lot of the advice there would work for us though wold not affect the cause.
      http://www.mstrust.org.uk/information/opendoor/articles/0502_08_09.jsp

      When you say that a good attitude doesn't solve everything I totally agree. I think we have great attitudes and the best thing that does for me is make me keep on going and looking for more ideas.

      Delete
    2. I am with you Teresa.

      Delete
  2. I came across your blog a couple of weeks ago & I have to let you know that I find your posts very informative and helpful! I'm relatively new to RA - diagnosed 2 1/2 years ago - but my disease has kicked into overdrive in the past 4 months and I have been having a lot of pain, joint swelling, and starting to see deformity in my fingers. My rheumy has been very proactive and we're working to find a good drug combination. I completely agree with this latest post regarding fatigue. That is one of the hardest symptoms I've had to deal with and to try to explain it to others is really difficult too. I'm waiting on insurance approval for Humira and really hope that by starting the biologic, I can get some energy back and regain some of my life..... Thanks for your blog and being so inspiring!!

    ReplyDelete
  3. Thanks Cheryl
    I started to write the blog because I learned a lot over all these years with RA and it was so hard to find some things out. Here's hoping you find some useful ideas.
    Though I said I've been on Humira 4 years I looked back and it has been 6 so far. I hope it woks for you.
    Did you ever look at splints? Resting splints at night have helped me over the years.
    Such a plus to have a good rheumy. Mine had tried many combos over the years too.

    ReplyDelete