Thursday, 29 September 2016

"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.

Tuesday, 27 September 2016

A Dfferent Route To a New Treatment

My road to a biologic drug was different than most I think. Building on my experience as an active patient who often searched for information online, I found an educational resource for doctors online years ago. They are also called CMEs which stands for Continuing Medical Education and have changed in format now.

Though they are meant for doctors, anyone could participate and the format was great. After every few pages there was a quiz, so I could check that I was absorbing the information.

That was the way I learned about the results of the Premier Trial and others that were similar. The conclusions that stuck with me, were those that said anti-TNF drugs improved disease activity and physical function.  What appealed to me most was that biologic drugs were said to give an increased sense of well-being, better physical function, and to decrease erosions and joint damage. I had already seen what joint damage could do and knew I wanted as little as possible. 

After reading these conclusions it seemed to me that my life could be better with more aggressive treatment. With physical symptoms of fatigue and inability to expend energy my life was limited. After working all day I had no energy left for any other aspects of life and I spent my weekends resting and visiting sick relatives. I felt like a doll lying in a room in a dollhouse when there were no kids at home.

Well-being is not something that my doctor ever asked about in his surveys that included the Rapid 5 ( a quick way for doctors to judge disease activity) and HRQL (Health Related Quality of Life)  measurements. Fatigue was not part of them.

Now we see Patient Related Outcomes (the results patients think are important) becoming far more important in treatment decisions and clinical trials for chronic diseases like rheumatoid arthritis. This change is recent and similar to 'treat to target' which is another phrase you may have seen online, far more than in doctor's offices.

I was convinced, but next I had to convince my doctor to take another look at my health. In my experience if you show up looking presentable and a bit perky at the Dr's office they think you are doing fine. Getting that re-assessment is difficult if you seem to be coping adequately. As my first GP (who missed my diagnosis) used to day "If it's not broke, don't fix it."

It took a few appointments to do this, which in RA terms translates to more than a year.  I had to "fail" on another DMARD so that the insurance company would be satisfied. If the new DMARD had worked it would have been great but it didn't. 

Now I am on a biologic. With it I have more tolerance for exercise and I can do more in a normal day. It did give me a better sense of well-being so I am happier and I think I am healthier too.

For an interesting read have a look at this paper that discusses the qualitative or narrative responses that show the outlook of patients - that is the experiences, attitudes and expectations of people like us about the information they receive before they start anti-TNF therapy

I really liked the paper - it sounded like me

This post is part of RA Blog Week. For more on this topic click here

Monday, 26 September 2016

Same Song, Second Verse - An Active vs Reactive Patient

At first when I was diagnosed with rheumatoid arthritis I knew nothing about it beyond what I heard from my (busy) doctor and what I read in a Chatelaine magazine article one year.

Learning how to find reliable information about my own health was complicated by having to google many of the terms I found. At first I thought that I might have a lot of the complications I read about - that was the way I learned what the doctors call "watchful waiting". After a few months with no changes it became obvious what I did not have to worry about. 

This access to the internet has meant we can all find information of any kind, from basic up to scholar or specialist level. This easy availability of information has leveled the field and is changing our traditional ideas of authority.  

Doctors are no longer the only source of facts and ideas about health. Now more patients than ever are comfortable asking informed questions at their appointments, where previously they might have been outside the exam room door before they had a chance to ask their doctor important questions.

The revolving door of healthcare

The individual empowerment that results from knowledge has changed my life in a good way. At the onset, when I was diagnosed I did not do much to help myself for and this lasted about 15 years. I was depressed and anxious and found it hard to deal with the life changes I was forced to accept.

It was encouragement from a physiotherapist and a doctor that started me off on a more active track and now I blog and am active on Twitter. All of those years of experience living with RA had left me with valuable information about how to deal with issues like finding a good team, the benefits of social support, orthotics, physiotherapy…it’s a long list. I wanted to share what I knew so I started to blog about chronic disease. But you can’t just blog – you need readers so I started to tweet links to research studies about Rheumatoid Arthritis (RA) that I thought were important.

As I met more people online I started to see opportunities to attend conferences and webinars and I realized that my opinions – that the opinions of patients - have a lot of value in healthcare. Knowing this made me feel empowered and engaged. Attending Medicine X was a huge boost because I found I was not an oddball, just a certain type of a health nerd. 

Now I am on the boards of some patient groups and a member of a variety of committees, from the Community Advisory Committee of my local hospital, to government bodies and also research teams. Even though I loved my previous job, this is even more rewarding.

Being involved with working for changes in the health care system has turned into a real and meaningful passion.  It is great to have the tools to make a difference and to encourage others to get involved.

I loved this acronym I found about learning. SML stands for “self-managed learning”– you can choose your preferred way to learn from a variety of resources like video, webinars, articles and scientific papers. We can all choose to learn at our own speed and level, and patients who learn more often do better in the long term in many ways. 

One that is important is social support. Patient experts and patient groups are good sources of knowledge.

Patient Support Group

This blog is part of RA Week. To see more blogs on this topic click here

Monday, 19 September 2016

Seems Like An Old Story Now

By now I have had arthritis for more than half of my life, so it's hard to even remember feeling normal and healthy.

I have rheumatoid arthritis (RA). It’s an autoimmune disease that does not affect any of my relatives, including my 50 first cousins.

When my kids were pre-teens I started to have pain and swelling in my wrists, fingers and feet. I was suddenly so tired after work that I would just lie down and feel unable to get up again, even for dinner. 

I was losing weight too but I thought that was because I switched from Pepsi to Diet Coke. 

My GP doctor seemed to think the symptoms were all in my head. When I said I was extremely tired he said "You're a busy active Mom."  When I told him about my foot pain he said it was because I was on my feet a lot. And when I had an oval cyst on the back of my hand he said they used to call them Bible Thumpers, because if you whacked them with the Family Bible they would go away.

My doctor made me feel that I was exaggerating and incompetent and I felt powerless to change the situation. When I left his office I would feel I should try harder but that brief dismissal did not help me at all. I knew there was a problem - sometimes I actually could not stand up first thing in the morning and had to crawl into the bathroom. 

The last time I saw him he told me to take 12 aspirin a day and come back in 3 months. That did not work at all and I still have ringing in my ears caused by all those aspirin.

Walking Gallery Jacket by Regina Holliday reflects this era

The only way I could think of to deal with the problem was to change doctors. Sadly the 2nd Dr. was no help either. The 3rd was actually a foot surgeon who got the right answer less than 5 minutes after I saw him in his clinic.

During that 2 years it took to be diagnosed I developed permanent joint damage in my hands and feet (also jaw and neck as I found out many years later). One seemingly trivial result was that to this day I wear ugly shoes because it’s better than limping. I have had 10 surgeries to maintain my functional abilities but have a weak grip, can’t garden or vacuum and hate to stand a lot even at parties.

I have taken immune suppressant drugs and NSAIDS for the past 30 years and managed to work up until I retired, though I did need to change my job for one that had less physical stress.

That happened in the 80’s so even when I had a name for my health problem all I knew was what I learned from my doctor. This was before home computers were common and with a job and 2 kids I did not have the time or energy to do all I needed to do, let alone go to the library to learn more.

Things are different now. Last week googled my original symptoms “pain in hands and feet, fatigue, swollen joints" and found a million results in total with 7 out of the top 10 links mentioning RA.

Imagine if I had access to that in the 1980s – I might have known very quickly what was wrong and insisted on seeing a specialist. With knowledge we have power, and it is great to see more and more patients becoming very knowledgeable about their own health.

... to be continued in the next post... Active vs Reactive Patients

This post is part of RA Blog Week at the end of Arthritis Awareness Month. To see more blogs on this topic click here

Monday, 1 August 2016

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 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, 2013a) 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 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.