Forefoot in Rheumatoid Arthritis (RA)

With RA you may develop problems with your feet.  The first part of the foot affected is usually the ball of your foot and the toes.  

                                               fitterfeet.com
Before I knew I had RA and while I was looking for a diagnosis my hands and wrists hurt very much, but the most painful symptom of all was sore feet.  Even though I could barely get out of bed in the morning, I continued to think the underlying problem was just too much standing, walking or chasing after my children. 

Once I got a diagnosis I already had damage to the joints of my feet.  The balls of my feet hurt because the fat pads that cushion those bones had migrated. That pain is called metatarsalgia. To deal with this, when it is not bad enough for surgery, you can use a metatarsal pad in your shoes.  

                                     walkwellstaywell.wordpress.com

My toes had started to drift to the outside. This led to a lot of pain and great difficulty finding shoes.  I was always limping and my co-workers probably thought I was faking because one day the limp was on the left and the next day on the right.

My rheumatologist referred me to an orthopedic surgeon.  I had to wait for an appointment because I wanted to have a foot and ankle specialist as my surgeon.  It is a distinct specialty and they are in short supply. My friend had hers done by a general surgeon and it needed to be fixed again.

The doctor recommended a forefoot reconstruction.  It sounds dramatic and it felt that way too, even though it was only day surgery.

You can read all about this on Wheeless' Textbook of Orthopedics but you will need to look up a some of the terminology unless you are very well versed on anatomy.  I looked for pictures of my foot to show you but none of them looked like good examples.  Lots of pictures show bruises but there are no good before and after photos.

This was the first operation I ever had for RA and it made walking easier.  I almost wish I still had the shoes I used to wear so I could show you how they had changed to accommodate my feet.

                                       SophieCrumb.blogspot.ca

My closet has no cool shoes to gloat over.  New Balance is my preferred brand because I like a lot of room for my toes. I would rather walk well and pass for normal than limp everywhere. There is lots of room in my shoes for orthotics, which have been vital to keeping me walking well.

I have now had a forefoot reconstruction 3 times. The technique  has changed the from the first time it was done 20 years ago. In the operation as it was done in the 90's, the surgeons remove a lot of bone at the metatarsals and the lower joint of the toes. People ended up with what the doctors called "floppy toes". 

Now they use pins in the toes to let them heal nice and straight. That method does leave your foot looking much more normal.  In my case though, the toes did not fuse well on the right so I needed to have the surgery redone on the four small toes.

Overall I would have these operations again because of the pain relief that I got from the procedures.  

Here's hoping your feet stay fine.  It is inconvenient to be unable to put weight on your foot for 6 weeks, even though it doesn't hurt much after week 1.

Your mind vs your body

Sometimes you wake up and plan the things you want to do and your body does not agree with the plan.  It seems like your body is the bad twin while the angelic one in your brain is giving you goals to achieve that are good, sensible and forward looking.

It doesn't matter how much I tell myself it's not my doing, it's the RA.  Even though I have a good reason for rationing my energy I still have that sense of being haunted by the things I am not doing.  

Self preservation and pacing is necessary, but even after all this time I don't always convince myself it's true.  Deep down I still feel that I can do anything - it's just that when I do what I think I can do or should do, then I pay for it for days.

Too often before you can even make a good start on an activity your body quits on you. It has many ways of forcing you to do what it wants.  In fact it has the upper hand.  The brain may be the controller but the infrastructure (body) needs to be sound for you to carry on.

So while we sit where the body put us we can wonder about these points:

1. Do I get so little done because of the activity of my chronic disease?
2. Is the  illness worse and making me more tired?
3. If I exercised more would I have more energy?
4. Was I always lazy?  (Note: Reading and eating peanuts was my favorite pastime when I was 11. May have been a bad sign)

RAcanuck put this another way in her blog post:

 "After a while your head can get kind of abusive towards yourself, you should be doing that! Why can’t you do this? It’s like a complete separation between what the disease does and what your mind thinks, is it because our eyes cant see it? or because we feel it and we’re ignored and discounted by most? I and surely most folks were taught to not be lazy and to get things done, it’s not a bad thing really unless you end up with AI disease. Then you're stuck on that mindset and your body is stopped in its tracks, the two don’t jive really."

Before you get too discouraged think of the points made in this article titled  Consequences of the inflamed brain

"sickness behaviors...are not symptoms of weakness induced by the infection, but rather are an organized set of changes designed by evolution to keep the organism (you) from foraging and thus being subject to predation during a time of weakness"

                                       care2.com
I also found another paper titled Fatigue In Chronic Disease which is helpful despite being published in 2000.  Fatigue needs more attention.

A Little Steamed about Somatic Symptoms

You may know that I read papers and abstracts on PubMed on a regular basis and every day I post a link to a research paper that interests me or seems relevant to current online conversations.  

                                                                 bmi-online.nl
When I found one called "Negative and positive illness representations of rheumatoid arthritis" it made sense to me that there seem to be two groups among RA patients. "The smaller group (43%) ... has a negative representation of their illness, attributed more symptoms to their condition and reported stronger perceptions of the consequences, chronicity and cyclicality of their condition, and lower control compared to the positive representation group (57%). (I'm taking chronicity to refer to whether the issue is chronic or acute.)

                                       thiran-muru-arul.blogspot.com

I wanted to be sure that I knew what was meant by the term "illness representation" so I googled and found this definition on the site of the National Cancer Institute. It is the "patient's beliefs and expectations about an illness or somatic symptoms" and determines how you cope with the illness.

So in the article about RA it seems some of us are more negative in our feelings about it. And the ones who are more negative have "higher levels of pain and functional disability and, longitudinally, with increases in levels of pain, functional disability and distress." 

That makes sense to me. It sounds as though the group with negative perceptions have good factual reasons for these feelings.  Their reasons are based on facts and on their actual condition more than on their beliefs and expectations.

It upsets me when a physical illness is associated with feelings that patients may have about it and turned around to a perception problem rather than an actual physical problem.  

                                    teachercarilla.blogspot.com

It's important to treat the body and also the mind but I'd rather start with healing the body.

I also found a lengthy neurology article about treating patients with no apparent disease, where the problems are functional.  It is almost a guide to What Not To Say To The Doctor in one section of this detailed article.

I found it at this link:  http://jnnp.bmj.com/content/76/suppl_1/i2.long  You may have to sign up for the BMJ  to see it.  (it's free)

Loss of Voice and Trouble Swallowing

There are many reasons for throat problems beyond the ordinary everyday issues. Lately I have seen blog posts about Rheumatoid Arthritis (RA) affecting the cricoarytenoid joint in the neck. One by Dr Shashank Akerkar and the other by Chronic Curve. 

                            Frank H. Netter   Atlas of Human Anatomy

It's also a subject that RA Warrior has written about more than once. She focuses more on how it can make your throat feel.  It means a lot to hear about the experiences of others.  I also found another article that states that with RA there is a lot of laryngeal involvement and that almost 13% of patients have dysphonia.

Years ago I was having a lot of trouble with pain in the throat along with choking, dryness, loss of voice and hoarseness.  I spent a lot of time on the Sjogren's World forum talking to others and finally found a person who was having similar experiences.  We thought, based on symptoms, that we might have LPR - that is Laryngopharyngeal Reflux (Silent Reflux).  We thought it was more desirable to have LPR  than Sjogren's because there are solutions to LPR.

We looked for information and good sites were scarce.  The best site we found had detailed information posted by Dr Jamie Koufman on the Wake Forest Baptist Medical Center site. Now she is at The Voice Institute of New York.  She has seen over 250,000 larynges which must be a record. Dr Koufman is very generous with information and comes across as very empathic person. 

I found another paper titled Laryngopharyngeal Reflux- A New Paradigm of Airway Disease which can add more facts for you if you are interested.

Armed with this knowledge I got a referral to an ENT (Ear Nose and Throat) doctor and had a most unsatisfying experience. He did not see inflammation, swelling or nodules when he looked at my throat by means of sending a tiny camera down through my nose for a look at my vocal cords.  So that ruled out RA and LPR both of which are usually visible to the trained eye.  This should have been good news and was since it narrowed the possibilities.

After that I had speech language therapy. The voice exercises and vocal hygiene sessions were some help to my voice which was very faint and undependable.  No shouting for me.

So that left Sjogren's Syndrome to blame. You can often recognize a Sjogren's patient by the bottle of water they almost invariably carry.
With Sjogren's Syndrome the lack of saliva in the mouth is a cause of trouble with the teeth and with throat, swallowing and digestion.

                                                                             Dry

A close friend has been Heimliched in public more than once for this type of choking.  Luckily the first time she was having coffee with her doctor and the situation did not alarm him.

Another time it happened at Costco. She has almost finished shopping when she was tempted by a sample of bruschetta.  When she started to choke she was unable to ask for help.   She couldn't breathe and she had no water.  The demo person and others helped her finally and she felt better but so embarrassed. They told her store policy was to call an ambulance so she asked them to wait and just let her go to the washroom first.  Then she abandoned her groceries and unobtrusively left the store.  She laughs now when she tells the story but then it was a panic situation. 

Luckily for me the problems improved, perhaps because of my use of Salagen.  I didn't find any evidence online that the use of a biologic is helpful for dry mouth, throat and swallowing trouble, but mine is better with Humira than it was without.  

                                         Salagen pills                   A.McKinnon



Other papers about LPR
http://www.ucdvoice.org/lpr.html  Centre For Voice & Swallowing at UCDavis Health System

http://www.enttoday.org/details/article/531839/Laryngopharyngeal_Reflux_Gaining_Recognition_as_Distinct_Disorder_Paving_the_Way.html

http://www.enttoday.org/details/article/531839/Laryngopharyngeal_Reflux_Gaining_Recognition_as_Distinct_Disorder_Paving_the_Way.html  

The paper below sees some benefits of TNF inhibitors in ocular inflammation.
 http://www.ncbi.nlm.nih.gov/pubmed/23568177     TNF Inhibition for Ophthalmic Indications: Current Status and Outlook.

An Ear Nose and Throat song

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.