Thursday, June 23, 2011

Women's Pain issues

I ran across another article today that I feel impelled to pass on to people to read. Especially my women friends who are pain sufferers like me. I received an email today from Research1st a group under the CFIDS Association regarding the release of a new chronic pain study by the Institute of Medicine (IOM) that will be released on June 29, 2011. At the request of Congress and HHS, the Institute of Medicine (IOM) is addressing the current state of the science with respect to pain research, care, and education. The IOM has focused specifically on, “identifying demographic groups and special populations, including older adults, individuals with co-morbidities, and cognitive impairment, that may be disparately undertreated for pain, and discuss related research needs, barriers particularly associated with these demographic groups, and opportunities to reduce such barriers.”

Evidently pain in the female population has reached such proportions that the IOM and the Department of Health and Human Services (HHS) are receiving federal funding to do research on the issue. In particular chronic pain issues in women! Yay God!!! About time. One page 13 (appropriate page number) they have a figure/schematic regarding “The Perfect Storm of Women’s Pain Policy” –How discrimination impacts women with chronic pain.
I think any woman with chronic pain could have saved the government a ton of money (if they would have listened to us lowly women) regarding the discrimination in pain management.

This is a worthwhile read! I enjoyed it! I am now looking forward to the new report coming out on June 29th!!!

Tuesday, June 21, 2011

Orthostatic Intolerance

I read an article from Research 1st today about orthostatic intolerance and thought I should share the information in case someone else is having the same problems. Research 1st is a project of The CFIDS Association of America. I copied this next bit from their website, "Research1st, a project of the CFIDS Association of America, the world's largest organization dedicated to making chronic fatigue syndrome widely understood, diagnosable, curable and preventable. CFS is also known as chronic fatigue and immune dysfunction syndrome (CFIDS) or myalgic encephalomyelitis (ME, ME/CFS, or CFS/ME). We’re intensifying efforts across the field to build a critical mass of rigorous research that validates the biological basis for CFS and leads to improved methods of diagnosis and treatment."

Now back to the original reason for this post. The article came about because a woman asked a question on the Facebook site of the CFIDS site and Research1st did some investigation of the question and got back to her. The article "Is It Anxiety or OI?" I think they did a good job answering the question posed by the woman. The gist of it is that they showed a difference in what is SOMATIC (physically real) not PSYCHOSOMATIC (all in your head!) For so long I took care of people that came into the hospital thinking that they were making it up, having a breakdown, seeking drugs etc. but I didn't think it was 'real'. I think that as a health care provider I have learned more about these disorders, CFIDS, FM,RLS, etc by having been diagnosed with them then I ever did as a professional.

I have been having problems with orthostatic intolerance for many years and was told a long time ago that I was having 'panic/anxiety' issues and when that didn't work orthostatic hypotension/hypertension. I would walk into a building and my heart would start pounding and I would become short of breath, head would swirl, legs get weak, and down I would go. Never mind that prior to walking into the building I was fine and I was fine within minutes of the episode! It made no difference if I was going shopping, to church, work or whatever it would occur! Most times I wasn't stressed or anxious at all just doing what I was doing. I would get light headed rising up from a chair, short of breath walking from the kitchen sink to the livingroom, or go to bed at night and have episodes of tachycardia and shortness of breath. Most episodes were new around any type of even light physical activity. Interesting thing was they didn't happen frequently enough it would be come an issue and if I went to the doctor complaining about the tachycardia and the other issues they looked at me like I was nuts.

Read the article! I was happy to see that they did some research to help the woman...and the rest of us out.

Friday, June 17, 2011

Life expectancy for women drops!

Imagine my surprise a few minutes ago while web surfing I ran across this article on CNN. Life expectancy in U.S. trails top nations by Karen Pallarito. The article states that the life expectancy in most U.S. counties lags behind that of the world's healthiest nations, in some cases by 50 years or more, according to a new analysis of government data.

In the article I read that women's life expectancy has decreased significantly and despite the excellent health care we have here in the states the life expectancy is similar to 1957. Oklahoma has 82% of the counties slipping or failing to rise in life expectancy for women. Scary thought since I live in Oklahoma. Some of the causes might be smoking, obesity, heart disease, high blood pressure, lack of exercise, stressors etc.

Wednesday, June 8, 2011

Double the costs

Just read an article on the Fibromyalgia blog that I thought I would pass along.
The article is called STUDY: Direct Medical Costs Are Double for Patients with Fibromyalgia

At first reading I thought that this seems to a waste of needed research money cause we all know that being blessed with fibro is actually a terrible curse! Every time I go to the doctor it is hundreds if not a thousand dollars in money put out on testing. I wondered what powers that be did I piss off so bad that they saddled me with CFS and Fibromyalgia! Now I am resigned to the fact that this is my life that I am saddled with and it is up to me to make of it what I can.

I know that we know the double costs and double standards for sufferers of FM and CFS and I guess with this type of research others will too! It is another blog post on how FM and CFS patients are treated with their 'fictitious' diseases because looks at us don't we look great!!

Thursday, June 2, 2011

XMRV not the cause of CFS now!

There has been new findings about the XMRV not being the cause of CFS as previously reported. Looks like people jumped on a wagon without thoroughly researching the data before publishing it. The CFIDS association published an article out of ScienceNow today regarding a retraction of an article I read on the CFS website few weeks ago. The article has now caused and uproar and there is a demand to retract the article due to lack of evidence. I found the original article by following the original link I put on my blog. It makes me angry that these scientist are so unscrupulous to print findings that haven't been verified or makes up data just so they can get in print. I don't think they or a loved one are blessed with the disorder or they would be working harder to make sure what the put out is verifiable before printing it.

I have been so tired and lacking stamina for so long I was hoping that the retrovirus theory was going to pan out. As the retraction article states, "CFS patients, who have no treatment for their baffling condition, have paid intense attention to the XMRV findings with some already taking antiretroviral drugs marketed to combat HIV." The cure can sometimes be worse then the disease but like them I was going to ask the doctor on the next visit if I could try an antiretroviral drug. I am willing to try just about anything to feel better again.

Hang in there! Someday someone will find out what is causing this and our world will change for the better! I hope!