"I Had a Nightmare Dream"

Here's a conversation about pain between two good friends who gave me permission to use their words, and whose names are changed.

"I had a nightmare type dream where I was in a car with others and I lost control on a curve.  I regained control quite quickly and no one was hurt.  Now that's quite a telling dream, huh?"

That's what one of my support group friends reported when she woke up in the morning with her feet and lower legs hurting like the dickens - she said they were "on fire". So she took her pain med and looked forward to feeling better because she had a busy day planned...

With a forecast for strong thunderstorms, a high of 90 and very high humidity she blamed some of it on the weather. She said "I wish my doc would let me take more medication on the bad days but he is worried about the changes in the brain that opioids make."

"Oh well...when I hurt enough I guess I will complain louder."

Gail replied "I do wish the doctor would listen to what you’re saying about the pain Robin. I’d say, what about what the constant pain does to the brain and how you feel in yourself?

Gail went on to comment that she had one of those days yesterday where the pain meds just didn’t cut it; by the afternoon she felt awful, stiff and painful and the fatigue hit super hard. I held off but relented with extra pain meds by 6pm and my evening was much better. Does anyone else have days like that where you’re literally counting the minutes to the next pain med dose?" 

Robin told us "Out of the 24 hours I get relief for approximately 8 if you consider how long it takes for the med to reach all the brain sensors for pain and then the time it begins to start back to "normal".  I was counting the hours yesterday to when I could take the second. 

Exactly Robin, replied Gail. Which pain med are you on? I’m on Di-hydrocodeine and that takes 50-60 minutes to metabolize in the liver. I then get between 4-6 hours before they wear off. I do know what you mean too about how fascinating it is, the way one day your elbow for example can be in absolute agony and then next day, nothing! Sometimes hour to hour is like that, it’s a crazy disease for sure

I am on hydromorphone 2mgs.  I feel better today. So I was able to sleep from 7-9 but it wasn't refreshing sleep.  I'm not sure I will ever have that again. 

I know my friends use a variety of methods to stay mobile, to distract themselves from the pain socializing and doing creative activities and yet this is not always enough. 

Another member of our group takes a very low dose pill usually only once a day, and yet despite the fact that she is stable and also almost 80 she is forced to make an extra visit to the doctor every month to get a new prescription. he feels he is doing her a favour because she is his only patient on any opiod at all and if he did not do this she would be forced to go to a pain clinic.

Things are getting very difficult for patients with chronic pain who just want to be able to function for at least part of the day. Every drug we take has an inherent risk of course. If I could not take Nsaids I don't know what I would use as an alternative, and yet Nsaids commonly cause cardiovascular and stomach problems, especially as you age. The alternative medications for pain are all risky and we are being warned about almost every painkiller.

It seems that patients are more and more expected to find their own remedies and many of us are very skilled in using every strategy we find already. Where do we go from here?

I actually saw an article where orthopedic surgeons were discussing cutting back on strong painkillers. I will admit I could do with less than a week's worth usually, but don't even try t talk to me about mindfullness two days after one of my joints has been fused or reconstructed.

This post is part of RA Blog Week. More blogs on this topic can be found here.

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