Thursday, June 14, 2012

more on PEM

If you remember a couple of posts back I wrote about PEM, post exertional malaise and how it effects my life.  Not a pretty story I can tell you and I think that without the help of my family it would get even uglier cause they don't allow me to get depressed and stay that way when this hits me.  My daughter loves to tell me that I KNOW BETTER!!  (that means I should listen to my body and not over do!) but it isn't at all easy some days to listen to your body and stop when you should. 

I know I don't rest well, don't eat well, and don't exercise like I should and that adds to the whole problem but...  I could take the drugs they give me to help me sleep but I feel like crap for several days after a 'restful' nights sleep, I literally forget to eat and when I get hungry I end up eating all the wrong foods cause I need to eat right now!  The exercise issue is a two edged sword...if I don't do some I hurt, if I over do I hurt and it is hard to draw the line. 

As Jennifer Spotila JD wrote in her article for Research 1st "PEM associated with chronic fatigue syndrome (CFS) dominates the patient’s experience of the illness, but PEM is generally considered a self-reported symptom because there is no clinical test to easily measure its occurrence and severity."  In the article it goes on to say that PEM may be a clinical indicator to differentiate it from other disorders ie MS, Lupus, other autoimmune. 

Dr. Marvin Meadows is researching PEM also and there Research1st wrote and article and there is a video that can be a little technical but understandable explaining how he thinks.  The article Brain Fog in CFS: What's Going On? provides information about how reduced blood flow due to blood pooling in the legs and abdomen cause insufficiency to the brain causing the fog.  Check out the You Tube video Going With The Flow -- Blood Flow, That Is.  

Today on Research 1st I read an article about Dr. Cook doing research on how linkages in people with the disorders and how exercise causes PEM.  Exercise, Fatigue, Genes and Brain Function: Identifying the Linkages in People with CFS

Lots or research going on out there so there is hope for the future in handling this disorder.  I remember when people with MS and Lupus and... (get the idea) went through the same crap we are with no one understanding and thinking they were faking too.  Difference was they had visible markers showing their disorder.   Support research into CFS/ME, Fibromyalgia and other disorders because even if I don't look sick I am!


TeddyBobCrafts said...

I know that to most people I must look very healthy - walking my dogs, riding my pony and doing all the animal care/house work etc (and even occasionally going for a run!). However, I am in pain all the time - along with all the other symptoms (some of which are caused by the pain relief tablets). Don't even go to see my doctor any more - just cope by myself. Crafting really helps - and having my computer to waste many hours! I understand your struggle with pacing yourself. Problem is that my brain is still very active most of the time, and it actually hurts more to sit around doing nothing - BUT then I can do too much (which varies every day). Gentle hug to everyone else who knows how we feel. Ali x

okienurse said...

I keep on keeping on too and usually do just fine but like you say you learn to live with pain and sometimes that is so stressful it throws me into a flare up. I went swimming today and just paddled around for an hour or so and felt so much better for doing it. I get frustrated going to the doctor and only go when I have to now because he is always wanting to 'fix' me and I tell him I am not fixable but I am coping. I let him know what I need and he prescribes it. Nice guy!