Using Orthotics in Rheumatoid Arthritis

In case you wonder what orthotics or orthoses are, here's a picture of the side view of one of my insoles beside a foot (not mine). With the side view you can see the layers that provide the support and cushioning.

Using insoles that are custom made for my feet has meant less pain, and keeps me from limping most of the time.

This week I read an abstract about a clinical trial done in the UK. It was called "Clinical effectiveness and cost-effectiveness of foot orthoses for people with established rheumatoid arthritis: an exploratory clinical trial". Though I looked for the full paper I could not gain access to it prior to writing this. I have since read the full paper. It makes my conclusions less clear cut.

The conclusion of this trial is that even though "semi-rigid customized foot orthoses can improve pain and disability scores in comparison to simple insoles" that providing them is not worth the money on a Quality Adjusted Life Year (QALY) basis. 

Fake money for false savings (IMO)

They conclude this despite the fact that people with rheumatoid arthritis (RA) have "greater difficulty with activities of daily living, increased fear of falling and greater self-reported foot impairment." 1

The pain and disability experienced by people with rheumatoid arthritis who have involvement of their weight bearing joints will frequently lead to damage to the ankles, knees or hips due to poor gait mechanics. 

It is estimated that one in three adults with RA will fall once or more times per year (Stanmore et al, 2013) with younger adults falling as often as older adults. Additionally 68% of people in the UK who have RA are reported to be physically inactive. In fact I have wondered for years why anyone thinks that a "Walk" is a good way to raise funds for RA.

People who have pain and disability when they walk are less able to remain in the workforce, accomplish normal chores and errands and often experience social isolation.

As a person who has been using customized orthotic insoles for over 32 years I would like to say that my experience of these insoles includes 1,664 weeks of use which is 350% more hours than the whole clinical trial in total which included 41 (only 29 completed the study) people for a term of 16 weeks. (464 actual person weeks of usage). 

I realize that the experience of one person is not research - it is qualitative and experiential, and yet the sheer length of time people with RA must live with this pain and disability should not be so easily disregarded. My 1664 weeks provides a perspective on the length of the trial.

Through the use of custom made orthotic insoles I have been able to delay most of the surgeries I have needed for up to twenty years. I would maintain that a 16 week trial is far too short to come  to conclusions about long term efficacy, and that this trial has limited exposure to experiential evidence, based on the short duration and small sample size.

Increased surgery and the future need for custom-made footwear might quickly erode the short term savings that would seem to benefit the healthcare system, while leaving patients with more pain and increased disability.

There is no sign that patients were involved in this trial in any way beyond being subjects. I would like to see some patient involvement in the outcomes that are to be measured in future research.

Engaging with Surgeons

After years of enduring lengthy waits to see my orthopedic surgeon, almost to the extent of needing two books plus sudoku and lunch to keep me occupied, I got a nice surprise this week.  

After I checked in for my appointment, the request for x-ray was sent electronically. Images of my feet and ankle were needed and the tech actually asked me which ones should be done. Having this input made me feel that my informed choice mattered more than in past years where the order went in and no one asked me any questions. 

X-ray machine

I returned to the check-in desk and waited only 15 minutes. 
The secretary who is usually monumentally inaccessible was available and pleasant. For this doctor the time required was a speed record - under two hours.

But this story is not about hospital process improvements. It's about how much my experience has changed through becoming an engaged and educated patient.

I hardly had a chance to get bored in the exam room before a Fellow came in (a fully trained surgeon but not permanent staff)  He was very pleasant and asked about what hurt. He warned me he was very good at finding the most painful spots (true). After looking at my feet and poking at the appropriate areas we talked about my ankle which he said looked only a little worse than on an old x-ray. It turns out the new pain is from the subtalar joint - one of the necessary but not well known joints which is below the ankle.

RA in foot

He went away and came back with my doctor and another surgeon who seemed to be visiting. All three looked at the two xrays (this week vs 2008) and my foot with keen interest and then called the resident to come in and tell them what he was able to learn from the image.

So now there are 4 surgeons in the room. The resident got the findings right and picked out the bad joint. Since each foot had had past surgeries the doctor gave a mini-lecture about the methods used then and now. Then another surgeon joined the crowd. They agreed it was end stage (Stage 4*) rheumatoid arthritis in the foot and a fine example of deterioration from a teaching point of view, seldom seen now with better treatments to prevent damage.

They said my foot looked better from the back than they would expect, and wondered how far I could walk, did I have orthotics, and said an ankle foot orthotic (AFO) brace  might help. I showed them my very helpful brace and the Dr said they could inject cortisone into the joint if I wanted, but would be hard to do since there is now so little joint space

Then they had a spirited discussion about what kind of surgery would be the best choice and seemed to agree that the one I have been ducking for the past 8 years was the one for me. A triple arthrodesis. Did I want it in 6 months or a year? So much for wait times.

So I said that it didn't hurt enough yet to go ahead.  The doctor incredulously said "Five surgeon's opinions here and you're saying no?" 

These days I really feel that I am a full participant in my appointments. Knowing the terminology and what the results of surgery are likely to be I can contribute to the discussion. Fifteen years ago I would have freaked out about the "end stage" and certainly a  lot of what they said would have gone right over my head.

This appointment was actually very enjoyable and a great learning experience. Despite what sounds like grim findings I feel almost the same as last year and now when I do go ahead with the surgery I won't worry about a second opinion! 

Being an educated and engaged patient is so much more interesting than being the passive recipient of treatment advice.

A good looking foot (nice bones)

* If you are really interested in how to characterize the stages of joint destruction in Rheumatoid Disease here is a link to an NIH article and the basics listed there.

- Stage I:
- represents synovitis:
- synovial membrane becomes hyperemic and edematous with foci of infiltrating small lymphocytes;
- joint effusions w/ high cell count (5,000 to 60,000 per mm3)
- x-rays will as yet show no destructive changes, but soft tissue swelling or osteoporosis may be seen;

- Stage II:
- inflamed synovial tissue now proliferates & begins to grow into joint cavity across articular cartilage, which it gradually destroys;
-narrowing of joint due to loss of articular cartilage;

- Stage III:
- pannus of synovium;
- eroded articular cartilage & exposed sub-chondral bone;
- x-rays will show extensive cartilage loss, erosions around the margins of joint, and deformities may have become apparent;

- Stage IV:
- end stage disease;
- inflammatory process is subsiding;
- fibrous or bony ankylosing of joint will end its functional life;
- subcutaneous nodules associated w/ severe disease

---

Stage 4 rheumatoid arthritis is the end stage of the disease. The inflammatory process begins to die down, the joint becomes less functional and may become totally immobile.
There are also some patients who've had rheumatoid arthritis for a long time and have had their joints badly damaged over the years. These patients, who may now have low levels of inflammation, are sometimes referred to as being in "end-stage" rheumatoid arthritis. (Note that end-stage rheumatoid arthritis is not a terminal disease; it's just an advanced stage that not everyone develops.)

Easy Solution for Boots and Orthotics

When winter comes and we have to layer up and wear boots to get through the snow and ice I always particularly hated having to move my orthotics from my shoes into my boots because then you need to do the whole thing in reverse when you reach your destination. To make matters worse you also have to carry your shoes with you.

Contains shoes

But there is a solution that I'm so glad that my friendly orthotist mentioned to me.  It's a high tech solution that is a lot like the boots I had as a child.  (Not exactly the same because the childhood boots had zippers and my Mom was always using a lead pencil on them to try to make the zips work more smoothly.)

Here are the new boots!

Yes, they are light on glamour but my shoes fit into the boots easily and I can just pretend that I am an intrepid explorer. They have great treads and are very warm and waterproof.

Here I am putting them on. It's very easy to do and they close with velcro up the front and at the top.  My shoes stay clean and dry and I don't have to take my shoes and orthotics off and on over and over.

Here's a back view of the boots - they're even adjustable at the top. When you look at who recommends these boots online you find soldiers, sportsmen and hunters.

They are also the perfect boot for people who really need to wear their orthotics or insoles and want convenience. I have not had to take the orthotics out of my shoes all year. That really helps my hands.

If you want to do a search for them they are called NEOS Overshoes and well worth a look if you live in a snowy part of the world. Of course in Florida I don't think even wool socks sell well, much less overshoes.

Update. Here's the tread. Very Important and lessens slips and falls

Self Management: Join The Team

When writing about patient engagement it so often sounds like there are many people out there supporting this effort. In reality there are brief encounters with doctors and their staff members involved in patient care. The rest of the "support" community" such as lab workers and many of the technicians who conduct tests, are so jaded and overworked that often I just feel 'processed'. They are also far more protective of my data than is logical, even telling me that it is illegal to give me info about myself ever because it belongs to the doctor.

I've been fortunate to have allied health professionals who are very encouraging and full of good advice. I owe a lot to physiotherapists, occupational therapists and orthotists.

Sometimes I wonder if it's possible to have a chronic disease and still be considered a member of the "worried well."

                                            Worried and well?

I found this PhD thesis "Capturing daily fluctuations, flare and self-management in Rheumatoid Arthritis: The patient perspective." written by Caroline Flurey.  It has been published as a book and is well worth reading.

There were interesting insights into the way patients look at their lives. One is the finding of "four different experiences of daily life with RA: 

1. Feeling Good
2. Taking Active Control
3. Keeping RA in its Place, and 
4. Struggling Through." (Mostly male)

The other was this description of flares"
"Two different flare-types have been identified: "Inflammatory Flare" (defined by pain and inflammation) and "Avalanche Flare (defined by the cascading effect of inflammatory symptoms, emotions and life events)." She has great insights and the paper also is a good resource to identify past research relating to daily patient struggles with Rheumatoid Disease.

                                        solar flare from nasa.gov

Speaking of struggles here's a look at what my friend Patty says about things that make her indignant:

"I got copies of all the tests and reports that the specialist is sending to my primary doctor.  Well, on the notes under General Appearance the hepatologist noted: "Looks chronically ill".  Nice, huh? That added to my day. I know pain, anxiety, stress and 30 yrs of RA can make you look sick. I'm sure I will mention this to him when I have my appointment.  I mean, there is another way of saying this, isn't there?"

                                        You don't look at all well

And here is her experience with feet:

"I know a lot of rheumatoid arthritis patients have a high tolerance level for pain. My foot Dr told me that RA'ers really can handle foot surgery. "You can tell who deals with pain everyday"  he said "normal people whine a lot about it". Guess we don't whine as much because we're used to it. Have you tried New Balance shoes? They're a godsend.  My podiatrist recommends them with my orthotics."

                                        Bare feet difficult with RA

Feet were the problem that led to my diagnosis of RA. The pain was too much to deal with for the long term so I chose surgery. Now I have had my forefoot (bones near the toes) reconstructed.

Though doctors don't go out of their way to use this term anymore , forefoot reconstruction  is considered "salvage surgery".  The heads of my metatarsal bones have been removed so I don't get the “walking on marbles” feeling anymore.

                                                              Try walking on these

With good orthotics and an ankle brace my gait looks pretty normal and my feet are comfortable.

  
Even having the above operation does not stop RA It can progress through the foot. It progresses to the midfoot and then to hindfoot. At the hindfoot it can seem that you have pain in the ankle but it is really lower down in the small bones below and in front of the ankle. They can be fused to prevent pain, or they may also fuse on their own.

It's well worth the struggle to gain knowledge and become comfortable with the correct terms to describe your symptoms. It helps you to join your care team.

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.

My Feet Were the First Victims of RA

After almost two years of being sick and having no diagnosis, the problem of dealing with feet I could hardly on walk on was serious. I had to take steps to find out what was the matter with me.  Dr A had no answers so I switched to Dr B - a sports doctor. Neither helped and it seemed that they never would, so I decided to go to a foot clinic.  There I met some enthusiastic residents with many ideas, but when the orthopedic surgeon stepped in he said "Send the lady for a blood test"

So after all that time of feeling that I was walking on knives when I got up in the morning, I had an answer.  The blood test showed unmistakably that I had Rheumatoid Arthritis.  

The Little Mermaid in fairy tales kept going through my mind during that time. That feeling she had of walking on knives when she gave up her tail was the biggest downside of being human.

                                                                     openlibrary.org

Luckily as my treatment plan unfolded with a team of health professionals the OT (occupational therapist) sent me to the hospital foot clinic for orthotics. I think of them as splints for the feet.  They helped: I was able to walk much better with them and had a lot less pain. Over the years the materials used to make them changed.  At the hospital the orthotic workshop used rubber that had some "give" to it.  This was good because I needed something softer to walk on, and they were able to accommodate my toes that were turning under, as well as align my feet properly.

When some of your toes start to stick up above your other toes they rub on the top of the shoe and get swollen sore red bumps. Sheep's wool padding helped with the top of the foot. Because the orthotics were custom made, they allowed little depressions for the toes that needed room below the level of the sole of my foot. The orthotist used leather as a top layer to make a smooth surface.

                                   side view of orthotic, inside view of foot back2feet.com

This is a side view of an orthotic showing the layers used to make it. It is a little short for that foot.

Once I had a pair of lovely to look at orthotics. They were made of acrylic plastic and clear like jelly.

                                     fracturedamy.blogspot.com

They were so disappointing. Lovely to look at and just like walking on concrete. I've been told that RA feet are more sensitive because we lose the fat pads on the soles of our feet.  I can attest to that sensitivity and add to it the other common feeling of walking on marbles.

These days I wear socks with padded feet made for people with diabetes. They give me a little more cushioning. The best socks are actually techno ski socks of pure wool but no one in Florida or the south would want to wear them. It takes a cold climate to appreciate their smart padding.

                                                   smartwool socks
I may never have really happy feet, but with my orthotics I don't limp anymore, and I am sure that my knees and hips are better because of them.

                                 flickr CCCvrcak   Happy Feet