This is the start of my newest Interview Series with people who also have Fibromyalgia.
Her recent hobby is drawing and this is the piece she likes the best.
Now let´s start with the interview!
When did you notice that something was wrong? At what age do you think the first symptoms appeared?
I was young when I first had symptoms. I began complaining about pain at age 8 or so. And had insomnia at a very young age as well.
Normally it takes a few years to get the diagnosis. What was it like for you?
I was diagnosed with Joint Hypermobility Syndrome at 16 and Fibromyalgia at 20. So, yes, a long time. I spent a great deal of childhood going to the doctor for tests and regular bloodwork.
How was your reaction when you finally got the diagnose Fibromyalgia? Were you relieved that your health problems finally had a name?
I suspected beforehand that is what it was. My father had it by then. I had a lot of the symptoms by then. So it came as little surprise. Mostly it was the relief I had the name and the official diagnosis. Being Undiagnosed for so long is so frustrating. You feel embarrassed to mention it because you feel like surely you must be exaggerating.
What are your symptoms? What are the worst ones for you personally?
The worst symptoms for me are pain, fatigue, fibro fog and insomnia.
What other diseases/side effects do you have?
I have Joint Hypermobility Syndrome, Hypothyroidism, Chronic Migraine with Aura, a vestibular disorder of some sort not diagnosed and Major Depressive Disorder.
What medications are helping you?
I have tried a lot. Last one was Lyrica. But the pain clinic put me on slow release tramadol and that has helped the most.
Have you tried alternative treatments? If so, what is your experience?
Over the decades I have tried just about damn near everything and nothing has really helped except consist moderate exercise which is very hard to maintain. Also vitamins like magnesium are necessary for me.
How do your friends and family deal with it? How do they support you?
My mother has been my constant support. She drives me to my appointments (cannot drive with vertigo) and does, when needed, help me out financially.
How do you deal with negative comments about your disease? No matter whether they come from friends, acquaintances or even doctors?
I either throw facts at them. Or mock them with my rather dark, sarcastic humour. I rarely hear that stigma directly… usually, that is behind my back. But when I do I have an exceptionally low tolerance for it now that I am older. When I was younger, I put up with way too much stigma and discrimination because a part of me thought I deserved it.
Do you do any exercises? If yes, what are your experiences?
I do. I do the exercise bike and physio exercises. When I can. It is hard to establish a routine with vertigo and hard enough with pain. But if you start slow and very slowly work your way up it is possible with pain to do it three times a week. Very slowly. Infinitely slow. But you get there. Just the vertigo has really thrown me off my game.
Do you have disability pension?
I have been on disability since November 2017 from work. And government disability about a year later. It isn’t just the Fibromyalgia or the migraines… it is all that pain plus this vestibular condition added together making it so impossible to function for any length of time these days.
What helps you get through bad days?
The really bad days I just have to rest and distract. And understand it is temporary. Binge movies or something mindless. Nap if I need to. I can’t do much more than that.
Do you have a mantra/quote to help you get through bad days?
This too shall pass… like a kidney stone… but it will pass.
Do you keep a pain diary? If so, what do you write down?
I do. I write down pain level morning, noon, and evening. Mood. Meds I took, or treatment. Comment section. If I went outside (for any time at all). If I exercised (for any duration at all).
Do you have an advice to Fibro newbies / Fibro people?
Remember to pace. But not just on bad days. Also on good days. You want to avoid Booms and Busts of pain and fatigue by pacing all the time and thus never exceeding your limits.
Is there anything else that you like to share?
I know Fibromyalgia is a sucky diagnosis with little to no treatment. It can be extremely frustrating and can take a lot of time to find what works for you. To that effect for people recently diagnosed I made a few introduction posts to help with some basics:
Fibro Women Blogs
Chronic Woman Blogs
Chronic Illness Blogs
Official Fibromyalgia Blogs