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Hi from a newbie

Sun, 12/10/2008 - 12:14pm — Simon

Hi,
Im Simon, i have Fibromyalgia and CFS (its mainly the fibro, especially in my low back, that affects my life the most). i recently joined this forum since I don't know anyone else with it and it would be great to know some people who understand what it is like.

i would be very interested in going to one of the support groups. im in the upper blue mountains, are there any groups close to here? from the list on this site it looks like the closest groups are in the eastern suburbs or the northern beaches. i have a car as of last week and i am reasonably mobile, much more than a year ago, though thats still a long trip for me to do in one go. it should be possible at least on a good day.

the fibromyalgia has been severe since about 2004, with 2005 and 06 being the worst (i could barely walk 50m or leave the house, or sit) and since then i have been in gradual recovery. ive probably had it for most of my life in a more mild form. i have tried all kinds of therapies and things to help it, the thing that has helped me the most has been the books by Dr John Sarno (such as "healing back pain", and also just generally learning to slow down and accept what i have and that i have limits, and to stop trying to push them too far, but just the right amount (which is not always clear, and almost always a lot less than i would like).

‹ Hydrotherapy suppport group coffs harbour ›
Mon, 13/10/2008 - 3:58pm — Marina

Welcome

Hi Simon and welcome,

I am fairly new on the forum as well but it has already been a great place of comfort for me.

I have CFS along with a chronic lower back problem (2 disc bulges L4 / L5). I have never considered the relationship my back problem has with Fibro as I always saw them as independent of each other. My CFS is the more severe of the two at the moment. In another way - I understand completely how everything that has happened is connected. That is another story entirely! My back has this strange habit of flaring up when it chooses without an obvious trigger. When it is really bad I have to take anti-inflammatorys & pain killers which I don't like and believe that may have had a small contribution to running down of the general working of my body over time. When my back was severe and I couldn't walk I had to take the drugs for months on end. Now, in everything I do I try and do it naturally. It is hard though. It can be a vicious circle and patience is most definitely a virtue. I know the best thing for my back is swimming but when I can't get out of bed due to the fatigue it is pretty hard - am sure you understand. When I do manage to get to the pool for a little swim it definitely helps in every way. I totally understand what you are saying about feeling limited. I do have great conquering days of acceptance when I feel okay about the slowness of my new life but then I still have those days when I feel completely limited and frustrated. Although, must say, the more I learn and listen to my body the fewer those days are becoming Smiling

I would love to read that book you have suggested - I'll have to see if I can get it at my local library. I also just read a great book called 'Journeys in Healing' by Dr Shaun Matthews.

There is always more to be said but I fear I am blah blah blah-ing Smiling I chose the most brain foggiest time of day to write of course!

Well, keep sharing and take care..

Marina

Fri, 24/10/2008 - 1:47am — Abbey

Hi Simon There aren't any

Hi Simon Smiling

There aren't any groups in the mountains at the moment (I don't think there have been for a while, I grew up at the bottom of the mountain and for that time, the closest was at Castle Hill) BUT there seems to be something starting at Rooty Hill, which is still probably an hours drive but is considerably closer. Smiling

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Abbey - ME/CFS Society Web Admin

Sat, 25/10/2008 - 9:45am — Simon

Hi Abbey, Thanks - can you

Hi Abbey,

Thanks - can you let me know more details of that group if/when they are available?

I also found this group http://yawa.arthritisnsw.org.au/ which includes Fibromyalgia as "arthritis", which i may check out, though i imagine the Fibro/CFS groups are going to be more relavant to me

How are you finding the web design course? I did one in 2001 and had a business doing that from 2001 to 2004 (techically, I still have it though i havent been doing much with it since then).

Simon

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