If you could go back in time and talk to yourself (or your loved one) on the day of diagnosis, what would you say?
Oh, wow, wouldn’t you want to say something totally motivational and profound? But honestly, doesn’t the first things that occur to you to be warnings of Doom… ‘you think it’s bad now, well, you know nothing, my friend. Nothing!’ And then just run away laughing like a mad woman. Although… I suppose I could put a hand on my shoulder in comfort and say ‘you will survive… but there will be times when you adamantly will not want to. Still, I’m here so obviously you survived so that’s something, right?’ Or maybe ‘Man, will you ever develop an amazing pain tolerance. Or I should say the ability to hide the insane amount of pain you’re in and not show pain behaviors but still feel a crapload of pain and inwardly screaming. Because looking at you right now I remember the pain you are in and I Wish I were in that pain. You know what I’m saying? No? You will… you will…’ and make sure I trail off ominously at the end there.
When it comes to Fibromyalgia when I was diagnosed I pretty much already knew I had it and I had already fought really hard to cope with the chronic pain and come out the other side. So having the Label was a relief but that was about it because the specialist didn’t tell me anything I didn’t already know and provided no treatment. And I have never really had treatment and I’ve had a lot of crappy doctors when it comes to FM and how they treat someone with that sort of pain… so I developed this sort of mentality that I should downplay the pain and not mention the symptoms because they didn’t want to hear it… they would assume I was exaggerating, was stressed or depressed. So I suppose I would literally like to go back to myself right before diagnosis and tell myself to demand treatment of some sort… demand a plan of action. Tell them that I understand managing FM pain isn’t all about the medications (keep in mind there were no specific FM medications then) but that I needed to know the sort of lifestyle changes I needed to maintain and the sort of exercises I should do and the sort of alternative therapies that help. Because I never saw a specialist again and if I had said hey do something, get started on some sort of treatment and let’s talk again a year or two from now maybe I would have… instead of having it wing it and dealing with doctors who simply don’t care. Instead, I learned to expect no treatment. I learned my pain was just something to be endured silently and I became this stoic person with doctors reluctant to really be open about things lest they give me that ‘look of disdain’. I know I developed a lot of comorbid conditions and other health problems and that the FM pain got worse over time, and the cognitive issues as well… and maybe some of that progression could have been slowed down or halted if there had been even minimal management of the condition. So that would be the most important thing I would tell myself. If I just told myself to stand up for my right to the treatment I could have prevented years of such disinterest from doctors such that I became utterly and completely disgusted, discouraged and disenchanted with how they treat fibromyalgia. Since I know this stigma is so pervasive I just stopped really mentioning it much or expecting much. And I wish I was the sort of person that demanded more from doctors. Instead, I thought, they are there for Other things and FM is something I have to deal with on my own.
When it comes to Migraines… totally different story. I did not know how horrific they could become. I had no concept of how insane they could be or the complexity of treatment. I was diagnosed with migraines with aura in my early twenties. I also had menstrual migraines that later I was told were also migraines… which means I’d been getting migraines since puberty. I would tell myself right away those are migraines because well… it increases the number of migraines a month I was getting and affects treatment. Maybe at an earlier age given the visual aura business. But that being said the migraines with aura were Episodic. Episodic is the Key word here. I was getting anywhere from 3 to 6 migraines a month, not counting the menstrual migraines. They were treated very well with a triptan. I had a very specific visual aura called a scintillating scotoma that informed me that I was getting one so I could take the triptan right away. I thought they were managed and would stay that way. I did not know they could become more frequent or become Chronic. I did not know there were Preventative medications one could take to make them less frequent or intense and maybe help out even at the point I was at then. So on the day of diagnosis I would give myself all this information and say these things are way more complex… maybe even more so given I have such horrible sleeping problems due to the FM or even because of the FM. I would say… these migraines are going to go Crazy when you begin to work full time. So crazy you will be so far into Chronic migraines there will be no looking back… so maybe starting on that preventative treatment five years earlier is a fine idea. I would also say ‘hey that staticy field you see in the air is visual snow. And that white outline you see around people is a corona. Those are both persistent migraine auras so maybe you should mention those. Not that it will help for treatment, but whatever, just a heads up… those auras will get much more diverse and vivid.’ Actually it might have been a good idea to mention those auras to my doctor way back when because I might have seen a neuro faster and they might have put me on preventatives right away. Yeah, I guess I would tell myself to mention that… I didn’t know they were auras because I didn’t know I had migraines and when I did I certainly didn’t know about persistent migraine auras. Granted visual snow isn’t really an aura it is something separate that can occur with migraines, but it is lumped in the persistent migraine aura label. Nevertheless I had that plus other persistent migraine auras while my migraines were considered episodic and I could have benefited from preventative treatments long before the migraines were chronic. https://w.atcontent.com/-/4OkPvk5YeRL/nikki.albert/2QHntVVgjei.text/Panel/Autocheck