Fibro Warrior Wednesday – Nikki Albert

This week I’m getting to interview Nikki Albert. She’s the author of one of the blogs that I love, Brainless Blogger. Nikki is from Alberta Canada. In addition to blogging, she enjoys reading, and writing both fiction and non-fiction. She is in a common-law relationship, and has three cats. She was diagnosed at the age of 21.

What lead up to your diagnosis ?
It was a long process that started when I was about 8 with joint pain. I had a lot of joint pain, fatigue, and insomnia that progressed. What bothered doctors a great deal was that I also tested positive on the ANA test so I had that test every six months as a child to monitor me for things like RA and lupus. I was sent to my first rheumatologist when I was 16 because of the results of that test and he diagnosed me with hypermobility syndrome. He tagged on ‘with soft tissue pain’ as he said in his notes I was ‘developing fibromyalgia’. I never saw those notes or was aware of them at all. As the years went on though symptoms got a lot worse as did a lot of those miscellaneous symptoms that didn’t quite fit in any box. I finally went back to my doctor and said I feel horrid even though my main symptoms are accounted for by these diagnoses I have been given. He did that infamous ANA test again, which I told him would be high, and off to a rheumatologist I went again who then diagnosed me with fibromyalgia. By then I had a family history as well, as my father had been diagnosed a few years prior.

 What was your life like at the time?
I had just met the boyfriend I am currently with now. I think I am lucky in this sense since he was there from the beginning of my diagnosis. Prior to it he knew I had chronic pain but that I had no real understanding of where it was coming from other than the hypermobility syndrome. After, the FM diagnosis explained a great deal of my symptoms. He was there for that initial diagnosis and as things progressed. I was a university student at the time. I initially had a very difficult time coping with the pain and brain fog when I first moved from home to go to school. Ironically by the time I got the official diagnosis I had developed my own coping strategies and learned a lot of moderation.

 How did your family initially handle your illness?
My mother has always been my strongest advocate when it has come to my health. Prior to my diagnosis when she was certain there was something else going on she adamantly pursued it. She always came with me for every doctor appointment as well. She was quite certain I had FM before they said I did as well. My father was diagnosed with it a few years before me so he handled it well enough.

 What do you feel is the most challenging aspect of Fibro?
There are a lot of challenges that present with FM in different contexts. The biggest challenge is the very unpredictability of it all. One day I can walk a good hour with a normal amount of pain the next day I can’t even walk ten minutes without acute pain. Makes no logical sense. Sometimes the fatigue is intense and other times manageable. Fibro fog and other cognitive dysfunction can come out of nowhere making everyday tasks overly complicated. There are times I can cope quite well and other times the combination of symptoms and comorbid conditions make it very difficult to manage simple things.

 Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
I have the hypermobility syndrome which for me causes additional pain, but it doesn’t in all people. I have hypothyroidism and that one has a lot of overlapping symptoms so I have to make sure my treatment is on track as I do not always know those symptoms are from it. I certainly didn’t know the symptoms were from it to begin with… just thought it was a nasty flare to be honest. I have chronic migraines and really it is the FM that doesn’t play well with the migraines. The sleep issues inherent with the FM cause pretty profound insomnia and poor sleep with me. Add in migraines and I get very poor sleep or no sleep. This in turn is a migraine trigger. And that can be a vicious cycle to be in.

What (if anything) have you found/ done that has improved your symptoms?
I take a sleeping pill and this has greatly helped with the quality of sleep I get, which then has improved some of my symptoms. I also take Lyrica which has had a modest improvement on pain. I find sticking to routines to be very important when we can. Sleep routines. Food routines. Habits. I have a very poor memory and it makes things far less stressful to me to have more than one way to track appointments (calendar, computer calendar, and iPhone planner).

How open are you with friends & family about your illness & symptoms?
I have always been pretty open with my family about my symptoms. And fairly reserved with friends. I always felt this sort of embarrassment for being ill or not being able to do all the things others my age could do so I rarely discussed it openly. I would say things like ‘I’m tired because I have chronic insomnia’ or ‘I have chronic pain’ and just keep it rather vague. Until I knew them for a long period of time and then maybe I would divulge more. I have this odd sense people would perceive me as a chronic complainer if I mentioned it. I still do not divulge too much but I also am no longer embarrassed about it. It is what it is. I will be open and blunt if asked anything.

What inspired you to blog about your illness?
Initially it was an outlet for my frustrations. Frustrations I may not openly discuss with people because I don’t want to ‘complain’. I also initially just had one blog for all my interests but realized I had a lot to say about health related topics so I separated them and now have a regular health blog. I blog now about research, awareness campaigns and also about my frustrations.

What is the best advice you’ve received regarding Fibromyalgia?
I don’t really recall getting much to be honest. I do know that when I realized ‘exercise’ did not mean hours of work out time and could mean yoga or going for walks this made a great deal of difference. I had attempted exercise in the past and kept exceeding my limits, causing a great deal of pain and flare ups. Always doing the wrong sorts of things and getting frustrated by it all. Movement is important. Exercise is important. But being within your limits is also very important and increasing slowly.

What was the worst advice that you followed?
I believe it was a protein diet. Perhaps that sort of diet is beneficial to some or even if I tried it slowly but making dramatic diet changes I believe it might be a good idea to have my doctor along for the ride. We can have some problematic digestive concerns with IBS. And those issues can get worse with some dietary changes. Which is what happened with me. Got pretty ill consistently. I find I have to be pretty consistent and careful with my diet. I have been able to make changes but pretty small and careful ones.

What is your favorite way to cope with your life as a spoonie?
I am a strong believer that we need to have ways to distract ourselves from pain. We need to do things just for us that we enjoy… to get out of our own heads and de-stress. It can be anything. One of my favorite pain distractions is reading. I can read a book a day if you let me. Another is creative writing and that is something that will get me out of my own head as well.

What is one thing you’ve learned about yourself since your diagnosis?
I have learned that coping is a fluid process. I can never believe fundamentally that I am perfectly coping. I can end up in denial again and try to push through the pain and refuse to compromise. I did just that when the migraines became chronic and it was a massive mistake. You’d think I would know better. I have learned that I often let this perception of what I think I should be or could be color what I feel about my illness which leads to depression or frustration. Yet despite this fluctuation in coping I have learned I cope. I have coped in various ways and developed various strategies to do so over the years.

Be sure to check out Nikki’s blog – Brainless Blogger. You can also follow her on Twitter, Facebook, and Tumblr.

This post is part of a weekly series. Each week a new Fibro Warrior is interviewed and they share their story here. Be sure to sign up for my newsletter to make sure you don’t miss a single interview.