Early Fibromyalgia: the One Thing I would Recommend

Early Fibromyalgia symptoms suck, and they are overwhelming to deal with. Like me and most others with fibromyalgia, you’re probably trying to deal with your new situation while juggling a job, maybe a relationship and/or kids, volunteer work and whatever else it is that people do these days. I’m a hermit; don’t ask me.

Pain flares can happen fairly randomly, or with reasons that feel barely connected to our illness. The two main culprits are stress and effort.

Stress: any stress can get in the way, really, but having a stress spike happen quickly, say a few hours, is what will give you a pain flare tomorrow. A big stressful event that keeps you stressed out for days will make you wish you could detach your nerve endings one by one for a couple of days. Finally, the fluctuating stress levels from one day to another (nothing dramatic, just your usual stress levels) will also dictate a lot about how much pain you feel in your daily life.

Effort: your body is now allergic to efforts. Anything you do today, you will pay for tomorrow, and depending on how bad, you may pay for it for 2-3 days. I am talking about things as mundane as doing the dishes, or lifting something heavy, cooking (especially if being at the stove the whole time) but also bigger things. When I moved apartments, I made the mistake of trying to bring as many boxes of stuff myself to lower the moving truck’s cost. I PAID THAT DEBT DEARLY FOR TWO WEEKS.

allergic to effort?

Okay, obviously, that was for dramatic flair. No need for an EpiPen! However, it portrays the situation pretty well. There is a specific vicious cycle for fibromyalgia that makes effort such an enemy.

Don’t be me; be smart

If I had only one tip to give to someone who is newly diagnosed with fibromyalgia, it would be: do not stop doing your daily things.

The pain flare effect

What happens when everything becomes more difficult? Chances are, you’ll do less of it. Like negative reinforcement, being punished for doing activities will lead us to stopping said activities. I used to walk more, go to concerts, swim and dance. I used to draw, knit, play piano, write, make jewelry, bake desserts, and make bread! So many things. Like I said in another blog post, Fibromyalgia seems to start in the hands.

No more baking for me!

Gradually, activities that required lots of precision and work from my hands weren’t so fun anymore. I didn’t want to draw or write anymore, not when 15 minutes was enough to feel like I had late-stage carpal tunnel issues. Jewelry was even worse, considering my favorite type of jewelry to make was wire-wrapping. That will wreck your hands, trust me. As for piano, I couldn’t practice as much as I needed to feel like I was improving, so I got bitter about it.

Bitter?

Disability comes with limitations. Limitations come with frustration. That becomes anger, until it turns into bitterness. Is that healthy? Most certainly not, but no matter how many times I encounter a new limitation, I cannot avoid the outcome.

the vicious cycle

Doing less and less activities, whether it’s exercise or precision work, leads to having less endurance for these activities. Which leads to doing even less activities. See where this is going? Great.

As previously stated: Don’t be me, be smart

If you’re newly diagnosed or still in a fairly early stage of it, make sure not to stop doing these activities entirely. Yes, even if it makes you feel really bad the next 2-3 days. Even if you don’t enjoy it as much due to the pain. I understand; I’ve been where you are. But you don’t want to end up where I am now.

Walking is more difficult for me than it ever was, and going shopping is a dreadful concept. These Walmarts HAVE WAY TOO MUCH SURFACE. When I have to climb up three flights of stairs to get to my apartment, let me tell you, that never ends well. I gave my piano away(to someone who appreciates it so very much! I found some comfort in that) as well as my jewelry tools. No way I’ll need them anytime soon, if ever again.

It only goes one way: down

Trying to avoid pain flares by stopping any activities that trigger them only results in worse pain flares. The pain flares also happen more easily (aka less effort involved now = same pain levels as when you did the full effort) and they are devastating.

It makes sense to want to stop doing things that hurt. In fact, it’s the logical outcome to any limitation I’ve seen; where there is a limit, I no longer go. However, that is how the vicious cycle starts, and what you should avoid.

The rule of inertia

You may know about that rule that translates vaguely to: if it moves, it’s easy to keep it moving but if it doesn’t move, it’s likely to stay that way. It can certainly be applied here! By keeping up a similar level of activity or exercise as much as possible, you’ll be preserving that level of endurance to effort. There is nothing wrong with taking a day off or two whenever you get a pain flare or really bad days, as long as the “usual” remains at a similar level of effort.

If you do not keep that level of effort in your daily-ish life, and weeks, then months, then years go by in which your body was in a more “inert” state, making it that much more difficult to start your old habit of doing these activities again. Not only that, but fibromyalgia will punish you more harshly for much lower levels of effort when you try to start again, which is very discouraging. For a person without fibromyalgia, muscle atrophies from lack of exercise, and that is what hurts when trying to start exercising again.

For people with fibromyalgia, the muscle atrophy is one thing, but the pain flares associated with our illness grow exponentially the more inert you have been.

All that to say

If I could go back to my early days of fibromyalgia, I would make sure to keep up what effort I could. I was never in great shape, but the past 3-4 years have shown me just how much out of shape one can get. And I’m now dealing with these NEXT-LEVEL pain flares following an effort, which makes it feel so impossible. Any basic effort is met with 3 days of full-body pain from top to bottom. And while I can do a burst of effort when needed, I have to think twice about it. Is it really worth the 7-10 days of recovery?

the Chronic Pain tax

The concept of ADHD tax is very interesting to me, and as I was writing this last paragraph I was thinking about how fibromyalgia also has a kind of tax.

Is it really worth X days of atrocious pain?

If not, is there a way to make someone else do it? Most of the time, the answer is yes, if you can pay them. I don’t need to wreck myself for groceries if I just order them and have them delivered. Multiple delivery services of, say, furniture, have the option to pay for them to assemble it when it’s delivered.

Going places with public transport(especially with multiple connecting buses) is absolute hell compared to the ease of getting an Uber. Buying a dishwasher is so much easier than killing your hands, wrists, elbows and back every time.

That all takes more money, but it becomes wildly enticing when the other option is various levels of excruciating pain days. If you have chronic pain or fibromyalgia, what is your chronic pain tax? let me know in the comments!