RA Fatigue: How Does It Feel? Day 2

Fatigue is a constant topic in support groups or gatherings of people with Rheumatoid Arthritis (RA). Here's what people in my support group have been saying lately.

Joy has been having a tough time:

Just want to ask - can you tell me exactly how you all feel when the fatigue hits really hard? I feel as if my legs won't carry me about, feel so tired just want to sleep all the  time. Have a headache from hell, body just feels like its giving in.

Sorry to moan but this is the worst I felt, if it is the fatigue

Advice from Jill

That is exactly how I feel apart from the headache but then I’m not prone to them. I describe  it as feeling like all my blood has been drained and I’m too tired to even lift a drink or take pills. I also feel like I want to sleep, a lot and then I still feel tired. My advice is to just rest as much as you can, do something that you have to put no effort at all into, fave films or a fave show are my go to for fatigue flares, as there’s no effort involved at all. Rest and baby yourself through it and sleep when you need to, and keep hydrated.

If we were cats people would say, "How cute"

Everyone is always happy to hear from Julie

I am sorry you are now suffering with that AWFUL fatigue!!  I had a bad spell of fatigue last week for about 5 days and really didn't want to do anything.  If it weren't for John, I probably would have just gone to bed, but it is probably a good thing for me that I feel I have to do some things that have to be done regardless of how I feel.

 

This sounds awful but when I have that awful fatigue, I feel like I think I must have some dreadful blood disease that is turning my blood into some kind of mush.  I felt so bad last week that I told John that maybe I ought to see the hematologist again and have her run her 17 blood tests.  She did that twice before and all she could find was "anemia of chronic disease".  I am going to discuss seeing her again next time I see my Internist.

Yes, but I might not get better

Mary weighs in

It really sucks doesn’t it?! For me, this unbelievable fatigue hits, I just can’t fight it, I have to lay down. I start to feel nauseated then I start to hurt all over, I can be looking at the TV but not really getting what’s on, like I can’t even think and all I can do is lay down and sleep. A good nap does help, for a little while. One problem though is I can not get comfortable! I hate it when I’m so tired and then can’t get to sleep because no matter how I lay or sit just not comfortable. Martin says he thinks I don’t fall asleep as much as collapse from exhaustion. Fortunately I don’t get headaches very often. You are not moaning, Joy. This is our life. It is what we deal with. I feel one of the most frustrating things is people just not understanding. I know some think I am lazy, don’t care, am anti social when it couldn’t be farther from the truth. I used to be one of the most active people you’d ever meet! I worked 40 plus hours a week, would go to the gym, take care of the house and girls, bowling league 2-3 times a week, go out with girlfriends until late at night and get up after a couple hour of sleep and go go go again no problem! Now, I don’t know how I ever did it all! One day at a time. Now, if I am out and about one day the next day I’m pretty much worthless. Ugh!

Joy at  least feels that someone understands

Thanks for letting me know how the fatigue affects you .. I know what you mean when you say you are looking at the TV but not really taking in what's on .I worry in case

people think I am lazy .... You are right when you say people don't understand ....but as you say this is our life .Like you I used to be very outgoing but that's not going to happen again now you take care Mary.

I wish spinach helped

Back to me:

I can't say I have better answers. I see a lot of research papers where they tell you that exercise will help. Just don't say that to everyone with RA. It's not a 'one size fits all' equation. Many do their best to exercise. It's tough when the result of exercise is often increased fatigue for days after.

One point to remember is that as you age you lose muscle mass, so at the very least try to develop your muscles by doing as much as you can. 

Here is a recent paper advising cognitive behavioural therapy.

Honestly this is the one that makes the most sense to me: Physical Function Continues To Improve When Clinical Remission is Sustained in RA Patients

Yay remission!


Link to RA Blog Week Day 2 for the rest of the blogs

Long-term Arthritis Limits Her Lifestyle

My lovely friend Julie was kind enough to detail some of the ways that having rheumatoid arthritis complicates her life. This is not the most optimistic post ever seen here, but I have to agree that it makes things less fun when you have to plan every detail in advance as if you are a one person army. Here are some of her experiences. Go Julie!

Several years ago, I came down with a very bad upper respiratory illness that turned into pneumonia.  The doctor did a chest x-ray and they found a nodule.  Of course, everyone was afraid that it was a cancer.  I was sent to a pulmonary specialist (probably one of the best doctors that I have ever been to see).  His office told me to bring EVERY chest x-ray that I could find - any that I had ever had.

From looking at the previous x-rays that weren't very good, he thought he saw a small spot on one of the previous x-rays.  He said he was very suspicious that it might be a rheumatoid nodule.  I had more x-rays, a CAT scan and a Pet scan.  From all of the testing, he determined that it was indeed a rheumatoid nodule in my right lung - but to be on the safe side, he had CAT scans done every year for 5 years.  As the nodule remained stable, he released me.  He said a cancer would grow quickly and be the size of a baseball or grapefruit.

Not a great choice.

I had breathing tests done and I have mild COPD and mild emphysema.  He does not want me to take any of the strong Arthritis medications as he has seen too many lung complications with those medications.  I have not been back to see him in awhile so no telling what is going on with my lungs now.  He told me to come back if I noticed any problems and so far - so good.

But - what does a person with severe arthritis do?  They have to try something - right?  Thankfully, I have moderate arthritis and get along with a small dose of prednisone and pain medication plus supplemental treatment like physical therapy, lots of different splints, surgery on my feet, resting, watching my diet, medications for other problems - etc.  I have had several problems due to the inflammation of RA especially in my intestines.  The RA has given me eye problems and I had a 90% blocked carotid artery plus numerous other problems.

It is really a toss-up.  You can treat the RA with strong medications and end up with more internal problems or you can take not much of anything and just struggle along and still end up with internal problems.

I also developed kidney dysfunction and the kidney specialist does not want me to take any of the strong arthritis drugs either - especially NSAID'S.  I have never taken anything but the 1st round DMARDS  (Disease Modifying Anti Rheumatic Drugs) - arthritis medications or prednisone. None of the DMARDs helped me at all.

I am also tired of the awful fatigue and not being able to plan what you want to do because you don't know if you will feel good enough or have enough energy to go through with whatever you might have planned.

They're tired and they can't get up

As the RA has also affected my intestinal tract, I never know if my digestive system will allow me to eat something so I have to be very careful of what I ingest.  It seems like we will plan to go out to eat and when the time comes to leave, I have stomach cramps or some other ailment.

I can't entertain like I used to be able to do as I can't stand up the amount of time necessary to cook.  My feet start to swell and hurt too much and I have to go and sit down.

I resent all of the time it takes just to take of myself - taking medications, putting lotion on arms and feet, drops in my eyes, etc.  I also have to schedule a rest every day after lunch.  That kind of cuts into the day!  I don't like that I can't wear different kinds of shoes and that my clothes have to be rather loose as I can't stand anything tight because it hurts my skin.

I also don't like the fact that I am unable to just get up and go and take whatever comes along.  When we travel, the bed has to be soft enough for me - so we book hotels where we know the beds are comfortable (more expensive).  We also have to book a suite-type hotel with a kitchenette so that I can eat breakfast in the room as I can't function until I take my medication and it has to be with food.  No going down and eating with regular people.

I don't like the fact that I can't be around anyone that is sick because of my weakened immune system.  That lets out many functions at the schools, church, birthdays and more.  My doctor doesn't want me to go near a hospital unless I am the patient.

Like you, in order to get things done, I have to organize everything like a military operation.  So much at a time - no more.

We all know there's more but that is enough for now.

Thanks Julie!

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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.

Identity and Work (Permanent labor force non-participation)

When I was diagnosed with RA I was working part time in a bank as a customer service representative.  The friendships I had with people over many years and with fellow workers were important, but fatigue and painful feet made it difficult to carry on as the RA progressed.  It was a gradual change but continuous and unwelcome.

        (A TD Bank in New York. Surprised to see familiar company elsewhere)

I started working part time in market research at that point and found that sitting down talking on the phone was far more possible for me.  When the company owner found true love (and busted up two marriages in the process) two of us there decided that we could do the job so we made a deal to buy the company. 

It is so much easier to be the boss.  Management accommodates your every need.  I had a great collection of suns and garage sale art in our office and really enjoyed talking to our clients and solving their problems. There was some friction.  My partner at one point said that if she had known the extent to which RA would affect me she never would have gone ahead with the partnership.

                                                                   The sun wall

However all good things come to an end. Our company was purchased; then my contract ended.  Suddenly I had no authority, no employees and a basement full of pictures.  After 20 years of working with no end in sight the sidewalk suddenly ended.

And as you all know working with RA takes quite a toll. When you're doing a demanding job with a chronic illness many find that working is pretty well all that you can manage to do.  We go home and rest after every day and then try to squeeze the rest of our lives into the weekend.  Something has to give and it is often social life, family responsibilities and creative lives that atrophy. 

I have said on occasion that I feel as though my life could be represented by a bonsai tree. It's lovely to look at bonsai but it represents a deliberate stunting and pruning of the tree, both the roots and branches.

This change in life, from working to not working, is tied up in our identities and the way we see ourselves.  As hard as it is to keep working, it's even harder to stop. 

Have any of you found good ways to deal with the new horizon of not working? 

So far I am consoling myself with a rich new group of virtual friends and news from the old office is like dispatches from a war zone. 

Maybe it's time to have fun and play with grandchildren...

Or my "art"... 

This is from the blog post called "I Never Met a Couch Potato with RA"