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

Your Life Vest Is Under Your Seat

Coming home from vacation this notice was in front of me for five long hours on the plane.

Every time I noticed it I was reminded of an article I read recently called "Sitting Is the New Smoking".  

 

That article along with the instruction in the plane "Your life vest is under your seat" should be a wake up call for all of us with sit-down jobs and/or online obsessions.  

Getting up and getting moving is the new life vest!! It's under your seat. You just have to get up and use it.

 

I talked to my sister about linking these two thoughts. She said "It's a stretch," which is also exactly what we need.

You have to get up and walk around to save your life.

This is even more important for those with chronic illness and more so with a musculoskeletal (MSK) disease. There should be a special pamphlet given to MSK patients with a warning, similar to warnings on cigarettes.

 

amckinnon   Suggested for knowledge transfer brochure

When I was diagnosed with RA years ago fatigue and pain were always with me. It seemed totally logical not to stress my joints or to do more than I felt was possible. After fifteen years of very little exercise it should have come as no surprise that my bone density was decreasing rapidly.  

BUT it was in fact a huge surprise. I know the doctor can't tell you everything at diagnosis but I would have expected some health care professional to tell me the facts: Since RA affects the bones there were steps I needed to take to prevent osteoporosis. Some of these steps could include taking calcium, doing some type of exercise to help my bones and taking vitamin D. 

My first reaction, after shock at another diagnosis, was anger. Why did I not know this? Maybe I was reading too many mysteries and not enough medical information but "what the doctor knows" was not readily available before widespread use of the internet. What I knew about my particular area of chronic illness I found in magazines and the newspaper.

It just never hurts to state the obvious. This is why a more co-ordinated approach to treating inflammatory arthritis, like Dr. Irwin Lim's clinic in Australia, is such a good idea. As you see from the link he has a vision! 

Here's another post from Dr Lim about osteoporosis in case you want to know a little more.

 

knitted by Cathy Beattie

With a shortage of rheumatologists internationally, and so many of us with prioritized problems and lists of issues longer than our appointments, we need to coordinate with those wonderful people known as allied health care professionals. That would include physiotherapists, occupational therapists, dieticians, orthotists, exercise physiologists and others.

When you read medical advice that suggests a team of healthcare professionals can be a big plus with chronic problems, one of the groups they were thinking of was people with musculoskeletal problems.

The Best Judge of How You're Doing With RA

For a long time now it has been easy to find stories online about other people's experiences with treatment of autoimmune diseases. Some are from patients who are frustrated by doctors who treat them based on their lab test results.

                                Semi shredded lab tests and X-ray reports

Those doctors don't seem at all like the ones I "meet" in social media, and are certainly not like my own doctor. The main area that slowed down treatment in my case was a lack of "the language" and lack of knowledge about treatment strategies.

Dr Theodore Pincus's recent article titled "Documenting the Value of Care for Rheumatoid Arthritis, Analogous to Hypertension, Diabetes, and Hyperlipidemia: Is Control of Patient Self-Report Measures of Global Estimate and Physical Function More Valuable Than Laboratory Tests, Radiographs, Indices, or Remission Criteria?" is at this link. That is one of the longest titles ever.

He says that there is no single biomarker for diagnosis, management or prognosis in RA patients. In fact the most significant way to measure the future quality and quantity of life is the individual patient estimate of status and physical function on the Rapid3 or MDHAQ form. He sees this as the best way to explain improvement in quality of life with biologic therapies.

He specifically states that "The most significant markers for future quality of life and premature mortality in RA are not laboratory tests, radiographs, indices, or remission criteria but individual patient self-report measures of patient global estimate of status or physical function." I take this to mean that YOU are the best judge of how you are doing.

                                                            YOU at the center

Dr Pincus is consistent in what he says. I read this article in The Rheumatologist from 2011 where he discusses past and current research and usage of the MDHAQ and RAPID3 scores from patient questionnaires and his appreciation of their value. That makes so much more sense than looking at markers and telling patients who are miserable  "Just look at these lab reports. You're doing improving nicely."

I hope the new paper from Dr Pincus, Dr Castrejon and Dr Yacizi will help to enlighten some of their fellow rheumatologists.

These two charts that I took out of the article in The Rheumatologist really struck me. The top one is pain and its effect on mortality. The lower one is the influence of exercise on mortality.

They measure survival rates from a population in Finland. It's shocking to see what a difference exercise makes to your life and how little pain alone is affects it.  If that doesn't make people exercise nothing will. 

I spent years not exercising because I felt that pain was a good reason to avoid it. Not knowing then what I know now, in my mind pain trumped everything.  

 

                                                        Picture from Arthro-Pilates.com

Here's another significant paper:

Gain in Quality-adjusted Life-years in Patients with Rheumatoid Arthritis During 1 Year of Biological Therapy: A Prospective Study in Clinical Practice http://www.jrheum.org/cgi/content/abstract/40/9/1479

Exercise and Patient Engagement

Of course I plan to start exercising soon.  Here's my exercise bike almost ready to go. I'll use the pylons to keep people out of my way.

                                                                A McKinnon
Given the frequency that exercise and physical activity is recommended it should be heralded as the new wonder drug. In fact it may actually be running ahead of patient engagement in the wonder drug category.

So imagine what an engaged patient who exercises can do!

                           a longer than usual walk today             A.McKinnon

Prescription For Exercise

Last week in the #hcldr tweetchat participants received this prescription for health from Dr Tony Leachon. This is all you need to do to be healthy and live longer.

Thanks to Dr Leachon

From Dr Leachon's tweets I can see he is truly committed to changing viewpoints on disease prevention from the top down. Do you think that when it's a prescription we pay more attention?

Just kidding about the bike but I do exercise. There is nothing wrong with my core so I try to strengthen it to gain muscle and improve my balance. I do a modified form of Pilates while taking care not to stress my back because of worry about osteoporosis. This article by Sherri Betz about Modifying Pilates For People With Osteoporosis works as a guideline for me.  I worry about it because of my family history of back problems.

                                My back mascot - Bone Buddy  A.McKinnon

Hurt, Hurt - RA Playlist

Many of us have pain as a common thread in our conversations.  Hence the title of the post. It comes from Runaround Sue, an oldie by Dion and the Belmonts, and the best Hurt song ever.  

Listening to music is a good way to take your mind off of your body for a while. In fact music is an inspirational plus while writing blog posts.  It doesn't work as well when I try to understand a complex scientific paper unfortunately.  These days focus is more necessary than multi-tasking.

With chronic disease how many of us do not wish for Yesterday?  If only We Could Turn Back Time we think we'd be a lot happier.

Hurt So Good is an unknown concept in the RAD community, Misery is more apt.  For those with neuropathy Needles and Pins might be the song of the day.

                                            Needles and Pins - Neuropathy

Don't try to tell us that Everybody Hurts. That does not go over well: in fact it's a pet peeve. What we really have is All The Things You Never Wanted.

                                Things I never wanted in my house

What we hear from well-meaning friends is Don't Worry, Be Happy. They think that's a sure cure for what ails us when we Haven't Got Time For the Pain.

Really, the King of Pain is after us and we are trapped in a Sea of Heartbreak.  OK, that's a little dramatic. All we have to do is go Off To See The Wizard (rheumy). Hopefully then we'll be Feeling Good.

When that doesn't work I Fall To Pieces and wish for Novacane or  Dilaudid. (Note:Those are not my painkillers of choice, nor are they recommended).

We need to take The High Road so we don't Lose It and go Sliding Down the Crooked Road.  And here we are planning to exercise and the best we can do is Once Around The Block.  Even though we're younger we'll never have the Moves Like Jagger.

And for the final illness indignity All the Money I Had Is Gone.  We pay quite a price to coexist with chronic problems.

                                        guardian.co.uk

I'd say that What Doesn't Kill You makes You Stronger isn't  accurate with RAD. Physically you often lose strength.  Mentally it's hard to judge your own strength but we always hope for a Beautiful Day.

Strange Cures for RA

Some days you would think that cures for arthritis abound and those of us who have it have no excuse for not recovering. Some of this cure advice, like the importance of diet and exercise, would certainly be a benefit to anyone, but generally much of it is just old wives tales.  

Exercise is in fact something people with RA take to heart. To use RA Warrior's results from a survey of comments, more people with RA exercise than among the general public, so why are we not more healthy?  Is this the culprit below?

  

                                        IL-17 contributes to inflammatory diseases Photo: Professor Kingston Mills

Have you heard that gin-soaked raisins will cure you of rheumatoid Arthritis (RA)? I can just imagine a little gang of gin-soaked raisins chasing after the cytokines in the IL-17 family trying to have some effect on them.  Even with cute sneakers it's just not going to happen.

                                  NowhereWithMe.com

I have developed a huge resistance to most ideas that don't make sense or are too good to be true in their promises of immediate relief.  There are no ideas in this post except for diet and exercise that have any truth in them if you ask me.

My dad suggested I should drink apple cider vinegar every day. My brother gave me a copper bracelet with dragons on it. It was the copper that is said to be a remedy.

                                  Yourgoldwatch.blogspot.ca

Here's another copper cure we can look at.  And the price is right!! Good thing we all saved some Canadian pennies.

A good friend went to a Chinese druggist and bought special pills to help me. I even tried them but did not notice the difference, though I liked the way they looked.

                                  These are really black balls. The pills were like this.

Let's not forget the magnets either, or the potato juice therapy that some people call a biological treatment.

                                    tensionnot.com

This is only scratching the surface on bizarre cures. You could look at snake venom or bee venom cures, or bury your lower body in sand. Or how about olive oil and kerosene mixed and applied to your joints before a shower?  None of these ideas has any real proof or a clinical trial.  I think doing a trial on these would diminish your professional reputation.   

Though I did see that a scientific paper has been published in the National Review of Rheumatology with this title: Autoimmunity: Will Worms Cure Rheumatoid Arthritis? Do you think it is suspicious that the abstract is absent?

                                        dothegreenthing.com

Insensitive Remarks Slip Out

My online friend Patty was out shopping one day.  She is so troubled by her hands she does not even like to eat in restaurants anymore.  She accidentally dropped a pill in a store and wanted to pick it up so no child would be at risk, and as she tried a little girl said "Mommy why does that lady have witches' fingers?"

                                        realenglishkindergarten.com

I have two of those unforgettable comments in my memory.  Last week at the hairdresser I mentioned to someone I was talking to that I had RA.  When she looked at my hands she said "Oh, how awful"  This was obviously not meant unkindly because she proceeded to give me the name of  a rheumatologist I should see. It just came out all wrong.

Another time, in talking about exercise with a health care professional, she asked me why I would want to exercise for upper body strength with hands like mine.  The minute she said it she regretted it - too bad we can't delete conversations.  Many times I wished I could.

In truth people are trying to help with these ideas and just don't know enough about what to do that is effective. Raising awareness about RA may help us in the long run.

The worst thing I heard was from a friend in the midwest. The members of her church felt that it was a  deficiency in her faith that led to her disease being unremitting - and this from the group where traditionally support and comfort for the sick is thought to be ingrained.

I've found I just need to accept the comments people make for what the people mean to say, not the words that come out.   And no excuse for the happy baby, I just love that smile.

  

Exercises for when you can't exercise

Sunny Day

I have two ideas for easy exercise.  One is the book that I talk about below.  The other is an exercise I got from a physio that changed my life for the better.  Yes, it changed in a small way but if you take enough small positive steps you end up in a better place.

Here's the book:

20 years ago I saw a book called The Arthritis Exercise Book by Semyon Krewer. He is a nuclear physicist who developed severe RA before the treatments were as effective as they are now. 

When he wrote the book people were often confined to bed if their RA was bad.  Thank goodness that seldom applies to people now. He outlines a lot of exercises that take very small effort but  make your muscles stronger.  He used them to keep some muscle tone so that when he improved enough to get out of bed he would be able to move around better.  You can do many of them lying in bed, as he did.

He outlines the exercises in a very methodical way and over the course of a week covers almost every muscle.  In collaboration with his physiotherapist it's a combination of stretching, repetition and isometric strategies.  He's quite charmingly chatty and doing his routines helped me when I was at my worst

And here's the one exercise:

Oh no! Is that a dagger that I see before me?

Yes it is and for this exercise you imagine that the dagger is pointed at your bellybutton and is endangering the wholeness of your naval.  You can be lying in bed for this.  With the threat to your middle you pull the muscles in your abdomen in to get away from the dagger and hold for 10 to 30 seconds when first starting.  Do 5 to 10 repetitions twice a day. If you get really strong hold it for up to a minute.

As a further enhancement, pull the muscles in and then try  to move them up towards your head. 

It's hard to believe this does anything but I have a story.  After 22 years of RA with almost no exercise at all I started to do this.  After a few months I happened to see a different rheumatologist when I went for a check up.  She felt in my abdominal area, as usual and she actually said that I had good muscle tone in my abs!

I was shocked and very pleased.  It seemed like a miracle that I got results so fast from doing so little. With that impetus I started to try harder with other easy exercises.  I won't say I am in good shape but at least it's a lot better.

Strength and Power with RA

It's been 30 years since I was diagnosed with RA.  The onset was classic in its symptoms but my GP at the time thought all I needed was aspirin.  He said take 12 a day and come back in 3-4 months.  I thought the weight loss that was occurring was due to switching from Pepsi to Diet Coke, and the sore feet were from standing at work.

The result after diagnosis was a long battle with illness and no exercise.  How could anyone expect me to be active?  It was all I could do to keep going. 

I saw a physiotherapist from The Arthritis Society sometimes and she recommended one exercise that stuck with me.  That is the exercise where you act as though someone is trying to stick a knife in your bellybutton.  You draw it in your muscles and tense them while you hold them tight for as long as possible and if you can, try to pull the muscles up toward your chin. 

Well anyone can do that lying in bed so I did it for a few months regularly.  Sometime later I was enrolled in a clinical trial which required frequent visits and doctor exams.  One day I was examined by a new rheumatologist.  In feeling my abs she said I had good muscle tone!!

That was a turning point - it amazed me that so little work could have such an appreciable effect.  The trial did not work out - but I was enthusiastic about exercise all of a sudden and started to work on Pilates in a modified form called Arthro-Pilates which is taught by a Lori Weisbrod. She has inflammatory arthritis herself. Her site is http://www.arthro-pilates.com/  It felt a lot safer to be taking lessons from a person who knew my limitations and is an amazing example.

Lori Weisbrod

Now I have more muscle and strength and maybe I could go farther. After all if a 95 year old can be a yoga master and if someone who starts at age 56 can become a sculpted bodybuilder in her 70s I am sure I can develop more strength and power too - I'm not even a senior yet.

Just One Exercise

It was a start

I spent too many years feeling that I was just not able to exercise for countless good RA reasons.  Then a physio talked me into doing just one exercise. " Lying (my choice) or standing, imagine that someone has a knife pointed at your naval and pull in your stomach muscles and hold them in.  When that gets too easy pull those muscles in and also try to move your naval up towards your neck"

It doesn't need to be a big knife that you imagine.

It was very easy and so I did it for maybe 2 months for 5 minutes in the morning and in the evening.  Then I had to see a different rheumatologist one day and when she was checking that my abdominal area she told me I had GOOD ABS.  Imagine - 20 years of no exercise and under 2 months of doing something easy moves me up to having good abs.  What a motivation that was!

It shows the amazing impact that an offhand positive comment can have. Encouragement is such a key factor in the management of your health life.

Since that comment I have made exercise a larger part of my life.