The Perfect Solution for Managing AxSpa: Trial and Error

The perfect solution does not exist. But, please keep reading.

Every morning I wake up not having any idea what kind of day I am going to have. Sure, I don’t think anyone really knows, but when you are living with axial spondyloarthritis, it’s a real game of roulette.

Energy, pain, brain fog, and mood are all sections of the wheel, and there are 10 balls rolling around to provide endless results. A good pain day might be combined with zero energy, and an okay mood, but thick fog. And, this could last all day, or the wheel might spin for different results every hour. We really don’t know.

With so much uncertainty, it is impossible to plan for a day, but there are a few things you can do to help give you a little more control.

Balance your meds

Oh, sure, let's start off with an easy one!

Yeah, I know, easier said than done, but such a crucial factor in making sure you have a good enough day. The average Spondy has at least 3 or 4 prescriptions in their arsenal. NSAIDs, DMARDs, pain management, and some form of biologic.

Because there is no cure for AxSpA, and medical science is still trying to figure out all the causes and effects of this condition, the rheumatologist’s main cause of treatment is throwing all these pills and injections together and seeing how things turn out. It’s really not as haphazard as it sounds, from all my conversations with people way more educated than myself, this really is the best plan of attack they’ve got.

The problem is, the intended effects and side effects are just as unpredictable as the condition. And truthfully, it’s not always as easy as saying “this drug makes me foggy” and dropping it. Maybe it’s the drug alone, maybe it’s a combination, or maybe it is something else.

I used to fall asleep at 12:17 in the afternoon daily. And I mean hard! 12:16 I am awake, and one minute later my eyes close. I talked to my Rhuemy, and we took a chance that my mid-day pain med was just one too many. So I dropped it, I stayed awake, felt it was fixed. A few months later, around 12:17, I started snoring.

Let’s try something else.

The point to all this, it is important to keep a diary when you start a new med. List your symptoms, intended effects, and side effects. Work with your doctor to find a mix of treatments that will give you a positive experience.

You are what you eat

The kind of day you are going to have could have a lot to do with the food you put in your body. For the average person, sometimes diet can be as easy as following the food pyramid. Get enough proteins, vitamins and minerals and you will have a fantastic day! That is unless you have an endless amount of food triggers like so many Spondys do.

Dairy, sugar, nightshades, starches, and spices are all on the list of common inflammation triggers. Then there are the not so common ones which depend on the person, and the day. And perhaps the weather and alignment of the planets.

To get ahead of this a lot of people have tried testing for food sensitivities with a nutrition expert, or an at home test. One experienced word of advice as someone who has done these tests and discussed diet with every MD who will listen, these tests are a good start, but in no way should they be gospel.

A very wise allergist once told me that "sensitivity" is not a medical term, and can mean a variety of things for individual patients. He went on to tell me that if people eliminated every food they were “sensitive” to, all they would have left is water and dirt.

The best thing you can do is practice an “elimination diet” with daily journals. Completely remove one thing from your diet and for a week see how you feel. After that week, add it back in and if you feel worse, you will have identified the trigger.

Turns out my daily narcoleptic episodes were caused by sugar. When I stopped eating the donuts left in the breakroom, I stopped falling asleep. Once again, this is a process that does not come with easy answers, but getting a handle on your diet can lead to getting a handle on your day.

Managing sleep

Sleep should be the most simple part of human existence. You spend a few hours awake doing stuff, and then you lay down on your bed and your brain switches off for a few hours until your alarm goes off. You wake up feeling refreshed and the cycle starts once again.

If only it were that simple.

Honestly, something as simple as sleep can be more complex than active life. Topics such as, mattress and pillow choice, sleeping position, schedule, sleep Apnea, and nighttime medication are just the tip of the iceberg.

From personal experience, going back to the roulette analogy, six out the 10 balls that determine your day are related to sleep. And I really wish finding a formula could give you repeat performances every night. However, there are some tried and true ways to make sure your sleep is restorative and therefore will allow you a better tomorrow. I’ll list a few I have picked up over the years and found to be moderately successful.

Avoiding nighttime snacking just scientifically makes sense. If your body is busy digesting food when it is supposed to be resting, you will miss out on the reset your body most needs. The same goes for drinking caffeine in the evening. Yes, you might be like me, immune to the effects of coffee. You are not as immune as you think. Besides the increased heart rate, caffeine also constricts your blood vessels, slowing the delivery of oxygen, prevents you from reaching REM sleep, and other effects. Experts advise no caffeine at least 6 hours before bedtime.

If you feel your sleep issues are more than simple things like food or the type of pillow you have, check in with a sleep doctor. You might have something more serious like Sleep Apnea which can cause additional, and worse, health issues.

The perfect solution

The unfortunate fact is that living your best life with AxSpA involves a lot of trial and error. Finding the right balance of meds, eating the right foods, and getting your best possible sleep, takes a lot of work and attention. And, even when you think you’ve got your solution, not every day is going to be the same. Such as life. But, in everything you do in managing this condition, be an active patient and your best advocate.