A few years ago I went down to southern Ontario to see a specialist about my Osteogenesis imperfecta. Whilst agreeing that I am atypical for my OI, in that I’m tall and most people with OI are short he also added a new diagnosis to my collection: fibromyalgia.

The new diagnosis answered a lot of questions for me as it explains a great number of my symptoms as depicted in the graphic for this Blog. However, treatment for fibromyalgia remains conflicted. Over the counter painkillers, antidepressants and anti-seizure drugs have all been shown to benefit some patients; especially, when combined with physical therapy, occupational therapy and/or counselling.

Unfortunately the weather seems to really affect fibromyalgia symptoms. Cold, damp days and drops in barometric pressure are widely associated with flare-ups in symptoms of the condition, which affects mostly women. Rapid changes in temperature can be problematic too.

On my worst days I feel as so I’m a hundred years old and every bone, joint and muscle hurts. On good days the pain is just there, underlying everything else going on with my health but not front and centre for a change.

So I wish our current weather would make up its mind. We’ve had some really hot days, too hot for me to even go outside as I burn so easily. Then we’ve had the cold, damp days as well. My body can’t seem to decide how to cope with this so my fibromyalgia flares despite the warmth due to the rapid changes in temperature.

Fibromyalgia is much more common than you might think. Recent studies suggest that it affects between 3-6% of the world’s population with 75-90% of those people being women.

To date, the cause of fibromyalgia remains unknown. Genetic studies are being conducted to see if genetics has a part to play. In many cases fibromyalgia is triggered by an accident or trauma of some sort. In other cases there seems to be no rhyme or reason as to why one person gets it and others don’t. It will be interesting to see the results of the ongoing research in this area over the coming years.

In the meantime, I apologise to those of you that I have had to cancel plans with due to a flare, or lack of spoons, and very much appreciate your understanding. With luck, we’ll see effective treatment within my lifetime!

Chronic pain… bring on the warmer weather please!

For the past few weeks our weather can’t seem to decide which season it is. Just as we thought spring was really here we got more snow again. Thankfully, it didn’t hit us as hard here in Sault Ste. Marie, Ontario as it did in other parts of Canada.

Regardless, for those of us who suffer chronic pain it was a bitter setback. Many people with chronic pain are adversely impacted by the cold and damp. So having had a few days of warn sunshine our bodies were starting to feel a little less painful. Just a touch, but enough to really relish it.

Today the sun is shining, and the sky is blue. The temperature is 5C and a light jacket or heavy sweater is all that’s necessary. (Even if Kevin is wearing the heavy winter jacket he bought here in Canada, back home in Australia where it’s the same temperature but Winter for them!)

Unfortunately the warmer weather doesn’t completely take away the chronic pain, it just alleviates it. It maybe gives us an extra spoon or two to work with. So please remember to be understanding of your friends and family members who suffer with it.

They would love to wake up one morning and no longer be in pain. As that’s extremely unlikely to happen we carry on the best that we can. But oh so thankful that the warmer weather may finally be here to stay for a while!

If it’s not dog poop, it’s mud! Spring seems to be here….

This is my back garden right now. Though you should replace the toddlers with an elderly female shepherd/husky mix and an 18 month standard poodle. They seem to love the mud just the same.

So trips outside now include wiping 8 paws! Which usually means that one dog spreads as much mud around the floors as they possibly can while I wipe the other dog’s paws. Then the first dog gets in the way of the second dog having their paws wiped as they’re jealous of the attention. It’s an experience!

It’s a good job I’m working from home and nobody can see me from the waist down on any of the WebEx meetings that I attend. I’m usually covered in mud too by the time all 8 paws are wiped off.

BIzarrely both dogs are trained to wipe their feet but neither seem to be able to remember the concept! At least most of the time it’s just the floor which wipes clean pretty easily.

Then last night I got quite the surprise. Rather than making my bed yesterday I’d pulled all the covers back to air out the bedding. Apparently at some point I forgot to shut the bedroom door for in a perfectly straight line, right across my king size bed, were two lines of 4 prints. It almost seems a shame to wash the sheets they did such a great job of getting such perfect prints!

I will be glad when this specific part of spring is done with and the flowers start to come up and I can let the dogs out without being ready for the mud tussle on their return!!

Oh, and I’m still battling the spring poop…. but I think it’s winning 🙁

I know that I live in Canada, but I’m sick of the snow…. but thankful for Epi Pen cases.

I’m so tired of the snow. Most of winter didn’t bother me this year as I was too sick to be able to get out anyway. However, that I’m now feeling relatively better I really want to be able to get out and walk a little. Even to use the snowshoes that I bought in the sale at the end of last season.

As long as I’m careful the outdoors is one of the safest places for me as allergens get dispersed quickly and people are less likely to be wearing scents out walking. So it’s relatively safe, at least until hay-fever season starts anyway!

Now that March is here the snow is starting to get me down. It wasn’t so bad when it was just here, and the roads had been cleared, but we’ve had a number of thaws and refreezes in the last couple of weeks, followed by new snow dumps. This makes it tough to drive and even more tough to get out and walk safely.

I start respiratory rehab next week and will be walking inside under close supervision and precautions for my allergies. I now have two Epi Clips which are the best invention ever. Using an Epi Clip I don’t have to carry big bulky anaphlyaxis kits, I can clip my pens to my waistband and put my inhalers in my pocket while I walk.

Before the clips the best that I could do were the Epi Pen waist bags but they take a little longer to open and get the pen out in an emergency and I don’t have a lot of time these days.

For home use, I have Epi Pens on my fridge in a magnet case.

I also have two full cases for complete anaphylaxis treatment which each contain two Epi Pens, inhalers, liquid Benadryl, and tablet antihistamines too. The first is a Trio pouch that is always in my purse (handbag). Mine is bright red so that it is easy to spot; the second is an Anaphylaxis Emergency Response Case (AER Case) which is insulated to keep the contents cool. This in combination with Kool blankets and similar cooling aids help to keep my Epi Pens cool enough when I’m traveling and staying in warmer places.

May I soon need them again!!

As I can’t travel very far at all right now, I can’t go away to avoid the snow and get a short break from it as I usually would around this time of year (Reading Week or March Break).

Therefore, would who ever is praying for snow – please just stop!!