Fickle Fibromyalgia: my pain flare stories

Venturing out of my abode got me thinking about fickle fibromyalgia pain.

Recently I have been thinking about the variety of FM symptoms because some of them overlap with chronic migraine symptoms such that I don’t know which is the cause… such as vertigo; migraine-associated vertigo or FM related vertigo, or the balance problems and even the sensitivity to sound and light. Thing is FM came first and migraines later and then chronic migraines so no matter how much my neuro wants to label everything chronic migraines he is actually just saying things doctors had actually labelled everything fibromyalgia before.

But my trip and any trip actually or any unexpected activity remind me of the fickle fibro pain. How it can hit like lightning in any muscle group or all muscle groups. How it can be a deep muscle ache that gets worse and worse, grinding and deep until your mobility is completely restricted or a sharp nerve pain that arches through you or stings like cold fire or burns.  The pain can be crippling and many of the incidents I remember can be so different and triggered by different things or nothing at all… so fickle.

The first fickle fibromyalgia pain was when I was quite young.

Excluding the aches I had as a child the first sharp crippling pain came when I worked a job where I was standing for eight hours at some customer service job. I remember the pain of doing that but I was familiar with that sort of pain already and not diagnosed at the time. I believe at the time they had said I had ‘hypermobility with soft tissue pain’ so pain from standing was due to me being double-jointed. It sucked but it was familiar.

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What wasn’t familiar was the fact that after enduring it for eight hours and getting home and sitting down, with profound relief, I couldn’t stand up. A brief moment of rest and I tried to get up for supper and pain arched through my legs and they collapsed. Just gave out from the very pain itself.

It was the first time I realized if you have severe fibro pain you cannot stop and rest. There is no point to it because resting and getting up causes severe pain, sometimes causing your legs to just give out but most definitely causing a lot of difficulty in getting moving again because of intense pain… so it is better to just keep going, no matter how slow.

The next incidents of intense fickle fibromyalgia pain occurred when I was an undergraduate in university.

Because that is when my fibro because more severe due to sleep cycle changes and so forth. Also when I was officially diagnosed but not treated (I was told too young to be treated). I flared up really bad one year but there was no reason for it. I was living off-campus at the time. I was physically fit in the sense I walked to school every day. I walked my dog every day. I rollerblade and so forth. Fairly active for someone with chronic pain. I was doing what they want us to do… exercise. The flare-up nearly crippled me.

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My fifteen-minute walk to school went from fifteen minutes to forty minutes and was extremely painful. It took a lot of willpower to achieve. Even when I got there it was difficult to sit at my desk, to actually sit down, and then to sit for the entire time. I just remember trying to pay attention through the pain. And that is why I remember that flare up so much because it reminds me of a migraine…. trying to think through pain and not being able to. That pain was all over pain. It hobbled me pretty good… but it was not just the legs, it was back, shoulders, neck… every damn place. And no cause. It lasted about six months and then was gone. It was in summer and wasn’t a weather thing. Just not sure what was the cause.

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One university triggered one was caused by a summer job.

One thing about fibromyalgia was that I could not work during school. I wasn’t capable of it. Work took too much out of me, so during the summer was my save up money time. But unfortunately, sometimes it took a little too much out of me anyway if I chose the wrong job. We learn that the hard way with fibro being as it is so fickle we learn what jobs we can and cannot work. I learned as a kid, and during summer jobs that standing eight hours is extremely painful but what can you do? Service industry jobs are easy to get when you have no experience.

Next job I learned lifting things repetitively or moderate lifting is a very bad thing to do if you have fibro… I got costochondritis. But I didn’t know it. I started getting twinges of chest pains which I ignored, they got more frequent then more painful then more constant. The local doc said it was stress. So I ignored it and it got worse and worse. Until when I lay down it felt like someone was squeezing the life out of me, pressure and pain. I ended up in the ER one night because it got severe one night when I went out drinking. That doc said he didn’t believe in fibromyalgia (as was common back then) and sent me away. Needless to say, this pain wasn’t going away so I made the trip home to my family doc who did a chest x-ray and told me what it was. I guess because I have fibromyalgia and maybe because I had aggravated it so much by working with the pain it lasted well into the school year. The pain receded very slowly over six months. It has never, ever been as bad as that.

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Graduate school was another massive fickle fibromyalgia flare

When I was in graduate school and I needed to get my thesis signed by all the dudes who needed to sign off on it I had to get my copies printed then run around to find the professors to get them to sign and then get the thesis to the right place in order to meet my deadline. This campus was huge. I did a lot of running around. I can’t walk, walk, go upstairs, walk, walk, go upstairs without beginning to feel pain. It isn’t possible.

So I started getting pain in my hips, knees, and feet. I had to keep going because I needed to get it done. I started moving slower and slower and getting more and more distraught. I was running out of time but I couldn’t physically move faster. At the end I was moving so slowly I might as well not have been moving. I ended up in my department crying because I couldn’t get it done. A professor found me and I explained (I had not been aware I could get disability benefits on campus by the way so no one knew I had fibro) he called my missing prof and got him to come to me and then got someone to bring my thesis to the right place. I was extremely thankful. I was also stuck there for an hour before I could move again. It was embarrassing to me as well. I never wanted to admit it could actually Affect me. Not like the migraines were… and the migraines are what killed my academic career.

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The fickle fibro hellish desk job flare

The next incident was years later because like a good fibro girl I aimed for a desk job and settled into it. But flares for no reason happened anyway. This one just occurred and surprised me because I could not explain it. It started in my feet, in the arches. Severe arch pain in both feet. I could barely walk just shuffle around. I could not really lift my foot and every step hurt. I tried fake arches. An anti-inflammatory cream my doc gave me. Foot exercise. Nothing. It lasted a year and then just gone. Then started in my wrists, both wrists, tendinitis I guess but so painful I could not put any pressure on them, had a hard time writing with them, had to wear a brace at night and sometimes at work. They hurt like that for about eight months and then just stopped.

So when my feel suddenly hurt when I wore those sandals I remembered that pain. Those are flares of pain. And the pain in specific spots. Pains other people get for different reasons but we get those sorts of pains for no reason they are part of our normal life. The aching muscles, and general soreness… that is every day, not a flare.  The skin pain, that is a different kind of pain altogether. The nerve pain also a different kind of pain. Fibromyalgia has a lot of different types of pain.  Because it is fickle. It can hit when you take a fifteen-minute walk, which has happened to me, or not until you have walked for an hour. Random, completely random. And these Hellish Flares of Doom… I don’t know what causes them. Sometimes we overdo it and pay and pay and pay. Sometimes they hit for no reason and we pay and pay and pay. I don’t get it but they are way worse than any other flare we have… and we have enough of them as is.

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