Fickle Fibromyalgia: my pain flare stories

It is like barbed wire is embedded in my flesh, ripping and grinding against my nerves.

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 neruo wants to label everything chronic migraines he is actually just saying things doctors had actually labeled everything FM 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 time I was very 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. What wasn’t 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.

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 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 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. The flare-up nearly crippled me.

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.

One university triggered one was caused by a summer job. One thing about FM 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 FM 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 FM 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.

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 props 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.

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. FM 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.

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2 comments

  1. I have often thought my migraines were part of my fibro, but my neuro said the other day that he thought that fibro could be part of migraine.

    i've been learning a lot more about migraine in the past year and i thought that was a very interesting idea, even if it has no bearing one way or the other.

    one problem for me is that i forget about a flare up after it has happened – i am usually into some other flare up – so when it happens again i have forgotten all the things that helped last time round. i did try to get some support last time i was at a college, but the complexity of the condition/s made it hard for me to be clear about what i was asking for.

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  2. When I was an undergraduate and a graduate student I honestly was completely unaware there were any services available to help someone with FM or later with chronic migraines. I thought those services were for more visible disabilities. But then I was really quite uninformed about all things related to my disability… I had only seen my specialist once for my diagnosis and he offered no treatment or any real suggestions. My doctors also never offered assistence, or recommended any services. I was not aware of the fibromyalgia society existed, if it even did then, or any support groups. So I just tried to cope alone and the hard way and man was it ever the hard way, but honestly I'm not sure what sort of services they could havbe provided except maybe a support group which would have been awesome. I had learned to deal with FM over time but when the migraines became chronic I had a great deal of difficulty adding them into my coping process and functioning at the graduate level. I made it through, but it did affect my level of work in such a way i knew I would be incapable of proceeding to the phd level. I was a philosophy major and I remember the migraines made it difficult to research but more so made it difficult to analyze a text and properly formulate an argument… my reasoning was often circular… like I'd get trapped in a thought and couldn't progress. In moments of clarity, which I had because my migraines were not yet daily, I could actually see how dysfunctional it was and would have to edit and restructure my papers. My GPA only dropped one point on average, but that is a big deal at that level. And my thesis took more editing than actual formulation. It was like I was fighting my brain the entire time. And while it would have been cool to have someone take notes on days I could not make it to class… hard to make up for the inability to think through a migraine. But then again it was a difficult time, with the lack of any support and the fact I was just starting on preventatives which actually made things worse… I suspect people who had better doctors and better treatment and support could make it the long haul. And honestly I have heard there is awesome support available at some universities to be taken advantage of. Problem is people like me have no idea they are there and we are used to having no support at all.

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