For awareness day I have written my usual awareness day article and have been trying to promote awareness through my facebook page Making Invisible Disabilities Visible as well as of course through this blog and tumblr. And naturally I’m wearing purple!
Awareness Article 2013: Canadian May 12 Fibromyalgia Awareness Day Events – a good list of FM Facebook pages in there as well so I won’t list them here.
Awareness Article 2012: Fibromyalgia Awareness Day how much awareness is out there?
This was based on a survey that asked other people about their perceptions of people with FM and their knowledge… it was interesting. At times we feel the stigma is very widespread because we can encounter it often and still encounter it in the medical field so it was interesting to see that perhaps there is more awareness than one might think, or far more than there once was anyway when people didn’t know what it was and if they did it wasn’t a good impression.
My fibro life: I’m not going to tell you the story of my diagnosis because I’ve talked about it before and it is long. Suffice to say I’m one of those early onset childhood sort of cases but back in the day they didn’t really look for that sort of thing, so lots of tests and doctor visits, specialists, and time before diagnosis. Actually was diagnosed when I was 21 or 22 (I can never remember which but it was close after meeting my current common-law spouse so I know around the time) once again brought up all those complaints to a new doctor and said ‘I know this is due to this diagnosis, and that is do to that diagnosis and so on and so forth but it seems Worse, all of it,’ and he of course went ‘Ah sounds like RA’. Of course I insisted it wasn’t because I’d been down that road before but it got me sent to another specialist which finally got my diagnosis so that was all good.
I’m 36 now. And I now also have chronic migraines, asthma, hypothyroidism, hypermobility syndrome, peripheral neuropathy and possibly some spine arthritis (but I have not gotten the results on the MRI yet). Nonetheless, all the comorbids make life interesting. FM has a great deal of impact on the migraines… I suspect a factor in why they went from episodic to chronic in fact because for one my migraines went chronic due to central sensitization which is a key feature to FM, for another lack of sleep is a massive migraine trigger and a huge issue with FM and finally there is the whole light, smell, hearing, chemical sensitivity thing going on with FM that makes the world rather migraine unfriendly. The chronic migraines have greatly affected my ability to function, to work and to cope. The say it isn’t progressive but it does progress doesn’t it? At least when it comes to comorbid conditions and then how They affect the whole picture.
I like to think that I cope with the FM fairly well. I have had it a long time. I went through a rough patch when I was younger and learned a great deal about coping. I learned in University from working summer jobs what jobs Not to work. I also learned that time a great deal of tips to help with studying which helped at work to get around fibrofog and cognitive issues, prior to the chronic migraines anyway. You deal with the symptoms as they come along. Like IBS came along in my early twenties but got worse with the migraines and now still trying to figure that one out. Eczema appeared in my early thirties and figured out how to handle that… lotion and never, ever itch anywhere. Most symptoms you just endure. Some drive you nuts, like tinnitus. I’ve never really had much treatment for doctors so what choice does a person have but to cope as you go and randomly try things out that might or might not help out? About six years ago a neurologist put me on Lyrica as a migraine preventative, that might also help with FM, and I do find it ironic the only one to have actually helped me out FM wise for actual treatment was a neuro treating me for migraines… anyway I remain on it because to a moderate degree it does help. I was also put on a sleeping pill by a doctor, for chronic migraines, because I was, oddly enough, sleep deprived and it was triggering morning migraines that I could not treat which was causing me to miss work (more work). And that was great because I fall asleep a bit faster and wake up less often, but it does not work when you are in a great deal of pain when you go to bed and it does not give you eight hours solid sleep for sure… not with this type of sleep dysfunction… about five hours though which is pretty good. I have constant neck and jaw pain that is pretty severe which I suspect is chronic migraines and FM joining hands and having a party. But my baseline pain is my baseline pain… it is normal for me and so I am not sure what to say about that. I notice it, of course, and I shift position very often to accommodate it, but it isn’t something that I would remark on. What you notice is when you do mild to moderate exercise, walk short to moderate distances, exceed your limits and the pain flares up right then but for days or a week after. And then there are just these flare ups sometimes that I can’t explain where a muscle group like the wrists or the bottom of the feet hurts severely for an extended period of time such that I try all sorts of things to figure out what is wrong or dampen the pain but nothing works and mobility is compromised… and it goes as fast as it came. I honestly cannot even explain why sometimes I walk fifteen minutes and pain will grind into my feet, knees, hips or back… hobbling me down to a very slow shuffle of agony… and yet other times I can walk an hour with only moderate discomfort with a break or two before the pain starts to knock up. I know Lyrica helps with ensuring those episodes of nasty pain from short walking is less frequent certainly but it is random when it occurs.
I still think pain wise my FM pain is pretty tolerable (the symptoms can be another story sometimes)… when I don’t exceed my limits. When I do it is a rough patch. It does flare up and then it is makes thing more difficult of course. Slower. Harder to sleep. But thats the chronic pain lifestyle. For example, I would be able to work fine, in an office, with FM if not for the chronic migraines and cope moderately well… but I know others are completely disabled by FM, so I think in comparison it is pretty good. And I certainly don’t enjoy exercise, I’ll tell you that, it never gets better even if I know and see the benefits to fatigue and mood. By exercise I mean fifteen minutes of modified yoga every second day, migraines permitting. And I was walking twenty minutes every second day prior to the whole back lumbar spinal stenosis possibility… but if it turns out I have that I’ll have to figure out how to get back to being able to do this, and if it isn’t that, still have to figure out the back thing. I know the pain could be worse, lets just say that. The fatigue is exhausting You wake up with it and never shake it. It is a physical thing, a muscle fatigue thing at times and a mental fatigue thing at other times. The cognitive dysfunction is disturbing would be a word for it… you know your body can fail you but you should be able to depend on your mind, but FM buggers that right up. And combined with chronic migraines, yeah, an issue. It isn’t just that it is impaired short term, long term and working memory but that certainly is hard to work around. It is this disconnect. This inability to communicate at times because of the loss of words or lack of focus… along with tossing out the wrong words of course. And the constant… freaking constant errors, typos, using the wrong letters like p instead of d, and transposing numbers. It is forgetting names. Events that happened. Events that will happen. Having problems with Facial Recognition… apparently when you are in a crap load of pain when you meet someone if you see them again a week later… no idea who they are, especially if it is in a different context. Actually a different context often throws me. Or a haircut. People have to trigger memories in some way with me… like a game. And I have to communicate in long sentence because I forget the names of objects and things and people and have to go about it the Long way. I know our processing memory is fine. I know I can learn knew things and my IQ is just as awesome as it was… great… just can’t get to that knowledge when I actually need it at the moment. And then there is the whole forgetting how to do routine things or mixing up the order of how to do routine things… ever, say, try to take the keys out of the ignition when you have not taken your foot of the gas or put the vehicle in park? No? I sure the hell have, more than once. Ever see a stop sign and forget what it means? Yep, I have, but remember chronic migraines do not go with driving despite what doctors seem to believe and all pain leads down the road of Fog Land. Obviously now that I’m off work I don’t drive because of the migraines, vertigo and persistent migraine auras… just common sense one would think. Anyway, the cognitive issues do bother me a great deal. It frustrated me at work. I loathed making numerous small mistakes and loathed even more the large ones that I knew damn well I would not have made… because Knowledge had Poofed out of my head and then I remembered Later and had to correct it, if not after the error was made, which was worse by far. Even after constantly triple checking everything. The FM pain in an office not so bad… you shift, you move, you take a walk about, it is what it is. Even when it was pretty bad it was better than a job where one had to walk around all the time or stand all day. The cognitive crap and firbofog and migraine auras… seriously mess with your day. And the migraine pain of course was maddening… beyond maddening really.
I think the lack of sleep has always been something that has plagued me as well. One of my earliest symptoms in fact… in childhood. However, now with the chronic migraines I actually have some serious issues with it even beyond the sleep dysfunction there is. I have always had delayed onset insomnia and wake up frequently and that ‘unrefreshed’ sleep. And like I mentioned a sleeping pill makes this slightly better…. such that I get less morning migraines, which is awesome. However, lack of sleep is a massive migraine trigger. And I never get enough of it. The main problem begins with the fact that although I get less morning migraines my migraines are now daily so they hit about four hours after waking, unless I go outside in the sun or expose myself to another trigger and then it is less, sometimes I can extend it to more… but by the time I go to bed the migraine can be very acute. This leads to the whole ‘painsomnia’… as in insomnia just from pain levels. And since if I could not treat with a triptan when I got the migraine (can’t always treat when chronic) then it won’t work later and not any other option. Which means either a few hours of sleep or no sleep. Which means that migraine will keep on going. Or you will get one worse the next day, in the morning, and it will be brutal. When I was working this would lead to bouts of horrible insomnia and a long brutal status migraine. Just from erratic sleep and pain.
And that really is how FM affects me without going into symptom detail. There are so bloody many of them. In fact here is a post I just made of that 100 Fibromyalgia Symptoms list you might have come across.