Saturday, August 25, 2012


Just read an interesting article that was linked from Fibro 360 Community on Facebook, called Dysautonomia in Fibromyalgia & Chronic Fatigue Syndrome by Adrienne Dellwo.  Ms Dellwo has first hand knowledge of Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM) and writes about them at  Ms Dellwo recommends an article on subject called Dysautonomia, A family of misunderstood disorders By , Guide Updated November 13, 2011.  Both articles are quick and easy reading.

The autonomic nervous system is supposed to keep things running on an even keel in your body.  It controls your breathing, heart rate, temperature, balance etc...things that just happen in your body without you having to think about it.  When you have dysautonomia you body is not working how it should be and problems occur.  Here are some of the symptoms they listed:
  • Aches and pains
  • Anxiety attacks
  • Blurred vision
  • Depression
  • Digestive problems
  • Dizziness, sometimes with fainting
  • Fatigue
  • Low blood pressure (especially upon standing)
  • Numbness and tingling
  • Poor exercise tolerance
  • Rapid heart rate
  • Sweating
I'll add a few more from personal experience
  • nausea
  • temperature control
  • trouble sleeping

With my FM and CFS I have had all the symptoms at one time or another and it was only in the past 2-3 years that I have had them for long periods of time with worsening problems with the aches and pains, blurred vision, depression, dizziness, fatigue, trouble sleeping, numbness and tingling, rapid heart rate, bruising, and temperature regulation.  Some days I do great and have very few problems but on the other days...well it is just better I go to bed and stay there cause I don't do well with anything including interpersonal relationships with family and friends.

Read the articles and follow the links to get some valuable information.

Friday, August 24, 2012

WOW! Time flies....

I know I promised to post more frequently but I have been busy and the summer seems to have just slipped by on greased treads!   I first want to say I am doing well and there hasn't been much change in my physical overall well being and I am keeping on keeping on!  Make sense?  Nah...

I went storm chasing this year with Chuck and was really concerned about how I was going to handle it but turns out that it all went well.  I didn't push myself too much and I spoke up when I had an issue.  If you would like to read about the trip I posted daily on my Okienurse Paper and Ink Therapy blog.  To read the first post go here then you can read more if you wish.  I attempted some short 'hiking' around some of the trails to see the sights in Glacier National Park, Yellowstone National Park, and Tetons National Park and managed to walk a mile or two with no untoward effects and enjoyed doing it.  Just took it slow and easy and did my thing.  I ended up having to take more pain medication at night and during the longer car rides but it was a small price to pay for all the fun days that we had.

This is a picture of me at the lower falls in Yellowstone Park.  I really loved it there and we spent 2 days just wondering around seeing the sights and still didn't get to see everything.  I think if you spent a week there it still wouldn't be long enough!

I have been listening a lot to webinars and various self help programs recently.  I think that has been helping me a lot in managing my physical and psychological issues.  I went to the doctor last month due to some gastrointestinal issues like nausea, didn't want to eat and diarrhea!  I had a upper and lower scope done and was told by the doctor that everything looks good there except for a polyp and he gave me some medication for the stomach problems that seems to be helping.  I wonder why it is those of us blessed with fibromyalgia, CFS/ME, and associated disorders have all these problems that never are seen on any tests that are done...makes me wonder why we are so special! 

Well thats it for today and I promise to try and keep up better over the coming months.  I know with the coming of fall and winter we will all be inside more trying to keep the mobility and pain issues under control.  This summer has been nice but I have just about as much problems handling the heat now as I do the cold.