Many people think that once you get your Fibromyalgia diagnosis, that’s it. You have fibro, and you can then move forward and attempt to manage it. Well, I wish it were that simple. As I was about to find out after my diagnosis – fibro is blessed with a LOT of comorbidities.
Some of the most common ones I have noticed in support groups are Rheumatoid Arthritis (RA), Lupus and Sjögren’s syndrome. The ones I myself have now been diagnosed with are Restless Leg Syndrome (RLS), Irritable Bowel Syndrome (IBS), Sleep Apnea and now Vertigo. Yay! So I guess you could say having fibro is in no way straightforward, it’s actually a bloody complex thing and these are only a handful of the potential issues, there are many more. I’ve seen a lot of people stating that they developed fibro symptoms after getting Glandular Fever, for example.
I feel like since my diagnosis everything has just snowballed and it is just one thing after another. Just when I think I get my head around one thing, another illness pops its head up and says HEY! Fuck you! There’s a fine line however around if these manifest themselves because of the fibro, or if they were underlying anyway, or are even completely unrelated…
I often find myself in support groups asking something like “I’ve got a super itchy back and my legs itch like fuck after a hot shower, is this fibro?” Truth is, no one really knows. While many people will reply “yes!! This is me!!” and it is easy to put it down as a fibro symptom because so many people experience similar symptoms, this is sometimes very dangerous. Like, if I was to ask “I have chest pains and my heart is racing, is this normal?” lots of people might be all “yes, me too” but it’s more likely that I’m having a heart attack and should really get myself to a hospital. That’s an extreme example, but you catch my drift – while yes, these support groups are amazing and help you to feel more normal, they are also not usually populated by medical professionals and every new symptom should also be checked out by a Doctor.
Is having fibro really a life where we have to just settle for a hundred new diagnoses a year? Even the thought of that makes me feel sad, like I just can’t accept it. So, what do we do? How do we push the medical and scientific world to hear us, study us and make some serious fucking changes in the way they train medical students these days? I wish I had the answer. I mean, I try to scour Google scholar for all the studies that have been done and attempt to get information on the latest medical breakthroughs etcetera; honestly though, I have no clue what the fuck I am doing or reading and usually forget everything straight away. Fuck you, brain fog.
I guess it’s time for me to hunt down like minded people who actually understand all this stuff, can explain it to me and then show me the way to go make some noise for change. Until then, I feel all I can do to make at least some degree of difference is to continue empathising with my fellow warriors. I am a naturally empathetic person, which can feel like a nice quality to have, sure. But the downside of being so sensitive is you gather everyone’s pain and feel it deep within, taking it on as your own and often crying because you can’t make this person’s pain, depression, anxiety or general ailment go away. I know it breaks my heart watching people suffer. So, I will continue writing words of love and support on any person’s post, status or tweet if I believe it can help in any way; sometimes all it can take is one small comment, one person who truly gets it to show some understanding, and thought patterns can change. It’s helped me in the past… we must all pay it forward.
But yes, I am hands down going to also try finding a Doctor who is understanding, thorough and who actually gives a fuck. With so many symptoms and differing comorbid diagnoses there HAS to be more to my story, as there must be with ALL of us. Our medical records are complex and I believe it takes the right person to look at it all together and go “I’ve fucking got it, you have (insert new diagnosis here), everything finally makes sense, here’s a treatment that actually works!!!”
“Every great dream begins with a dreamer. Always remember, you have within you the strength, the patience, and the passion to reach for the stars to change the world.”Harriet Tubman
Wishful thinking? I hope not. I pray to whatever god you believe in that we find our answers, sooner rather than later.