Often when I interview people for the Identity Doc blog, I find people who have been living with a certain medical condition for a good while. Sometimes, though, it’s a great way to turn the tides by finding someone who has only learned of their diagnosis relatively recently–i think it’s always empowering to be able to find someone who is in a similar stage of their journey as you are.
Beth has only been diagnosed with Fibromyalgia within the last few months. She and I have a lot in common–ADHD, a love of Guide Dogs, writing, and the belief that our stories can help others! Today, for Fibromyalgia Day 2016, I’m happy to have Beth here to share her story.
Hi Beth! Thanks for joining us today–tell our readers a bit about yourself!
Hey there! So I’m Beth – a half-Northern Irish half-Texan (but more Northern Irish than Texan) healthcare linguist and founder of Smart Girls with ADHD. I live in the tiny seaside town of Donaghadee in Northern Ireland with my Scottish husband, Jack, and my folks (we’re living with them while we save up for a house). Then there’s also our cat, Darcy, and our retired Guide Dog, Dylan – a black Labrador. My mother is a volunteer boarder for Guide Dogs for the Blind so you’ll usually find another dog hanging out with us too – right now it’s a beautiful Flat-Coated Retriever named Truffle.
You knew you’d get me mentioning Guide Dogs, didn’t ya? Aww… Okay. Distraction!
Tell us more about your experience with fibromyalgia… When were you diagnosed, how long had you had symptoms, and what did that journey look like?
Thinking of myself as a “person with fibromyalgia” is still a little new and strange actually. I just got diagnosed in February this year but I’ve had the symptoms for as long as I can remember. The pain at the top of my arms has always been the worst for me. I often find my upper arms are too painful for even me to touch, let alone someone else. In fact, when I visit my family in Texas I often get sunburnt on my arms and shoulders because it’s too painful to use suncream on those parts. Even the lightest touch can be agony at times. I just presumed I just had a really low pain threshold! I also got regular headaches and “mystery” illnesses and fatigue that led to me being unable to attend work at times. Only now have I been able to attribute this to fibromyalgia.
My diagnosis actually came about through my Facebook group, Smart Girls with ADHD. It turns out that ADHD, fibromyalgia, and Chronic Fatigue Syndrome (commonly referred to as ME in the UK) may be connected which is something I had no idea about until recently. There have been studies into fibromyalgia and CFS which suggest that they are, in fact, central processing disorders or may even be allergy-related. Either way, a high number of Smart Girls with ADHD appear to also have fibromyalgia and those members’ experiences seemed to mirror my own. I mentioned this to my GP after reading about the pain and tenderness that fibromyalgia causes in your arms and legs which seemed completely in line with my own. Although there are no biochemical or genetic tests available to confirm a diagnosis, my doctor agreed that fibromyalgia seemed to be the likely cause.
What adjustments have you made, if any, since your diagnosis? How has being diagnosed affected you?
Hot water bottles! Using hot water bottles has been the only real adjustment for me but they help SO much. I often get really sharp pains in my legs and arms which I use to try to stretch out, the way you would after exercise. Before I was diagnosed, I saw a physiotherapist for this pain and she told me it was caused by sitting at my desk for too long and was down to bad posture but stretching and massage always worsened the problem. Now that I have a better idea of what’s causing it, hot water bottles have become my lifesaver. As soon as I use one, the pain reduces almost instantly, which is awesome.
What do you wish people understood better about fibromyalgia?
I guess like any “invisible” illness, the best thing anyone could do is to believe others and to accept that everybody experiences pain, and life, differently. I understand that there is a lot of scepticism involved with diagnoses of fibromyalgia (as well as ADHD and mental health conditions, for that matter) but I strongly believe that if the diagnosis itself has the potential to improve someone’s life, then what’s the problem? Yes, there is currently no way for my own diagnosis to be confirmed to 100% accuracy but just knowing that others have similar symptoms to me and discovering that something as simple as a hot water bottle can make life a heck of a lot better has been a game-changer for me.
Has connecting online been a part of your patient journey so far? Why or why not–and if so, what has that looked like?
Not so much with fibromyalgia, to be honest. Right now all of my energy is going into Smart Girls with ADHD, although I have followed a few fibromyalgia advocates on Twitter and Instagram just to begin to understand how other people deal with the condition.
Final thoughts, or anything you’d like to add?
I’ll be continuing to watch out for further research into fibromyalgia. I hope that as more studies are carried out and as we gain a better understanding of the condition, the stigma of this and other unseen illnesses will lessen.
We hope so too, Beth! Please explore the links to Beth’s work focused on Smart Girls with ADHD (…no pun intended!).