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My Story

Pam (updated April 2016)

2009

I have had this condition for over 3 years now. It took almost 6 months to be diagnosed. My first reaction was that I was going to beat it. I tried to continue with my life as before and became totally exhausted and depressed. One year on I realized that I had done everything in my power, had swallowed dozens of potions, followed up every bit of advice but the illness was no better. In other words PMR had beaten me.

Now I go with the flow a bit more. Accept that this illness, though not life threatening, is life changing and one day will burn itself out. I pace myself, I lie down when I'm fatigued, no longer try to battle through it. My pain moves about a bit - sometimes in the hands and arms, sometimes in the thighs and buttocks, or shoulders etc. I've stopped asking why or what did I do yesterday to cause this? There is no rhyme or reason to it - it just is.

We need to find the fine line between not giving in to PMR and not overdoing things. Everyone is different and it’s not easy. Energy is in very limited supply. I do something every day to keep my muscles from wasting and my mind alert. I find the best form of physical exercise is swimming/aquafit. It loosens up the muscles in a gentle way and in the water you almost feel like you have regained control of your body. I also walk at least 2 miles (on the flat) about twice per week - jokingly I say I'm going for a waddle as that's how my gait has become!

PMR appears to strike people who have lead both physically and mentally active lives and this makes it even more difficult and frustrating to deal with. I find I drop things, bump my head, knees, elbows, lose concentration, lose my sense of urgency, am less tolerant generally, I swear a lot - didn't used to. I never know if it's the PMR or the side effects of the steroids. Difficult to know where one ends and the other begins. The only thing we can do is keep the chin up and hope.

Pam’s story updated End November 2011

Almost 6 years in this long tunnel and I have been in some very dark places on the PMR journey.

Now, I’m seeing the light!

All blood tests better than for 5 yrs, feeling less pain and more energy
No waddling any more, can climb hills better, can complete task sets during the day without flagging.

1 mg steroid per day – hope to off them by early in the New Year – it WILL be a happy new year!!!!

Good luck to all – take heart – you can also reach this much happier place.

 

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