Obligatory "it's been a long time" post

I guess I got writer's block, or blog fatigue, or just lost interest since my last post. Really, I think I got EDS overload at the last conference, in a good way, but I also got socked with one month of insomnia just after the conference, which didn't help my desire to write on my blog. Got me off track.

Lots of changes happened at the EDNF since July that I'm still at a loss to understand, and I've felt a bit removed from it since it changed hands. Perhaps once they get the message boards going again I'll feel differently - more connected.

You know how bears hibernate In the winter? I think my hibernation period starts in August. I always get a little low around that time of year for some reason. Not like people with SAD because I perk back up in November. It's weird.

We went to Australia in Sept/Oct and yet I still didn't feel inspired to write. When we got back, I had a major work deadline for end of Oct. Then post-grant recovery. I found out two of my friends have breast cancer (one a rare type and the other has metastatic bc)- a heartache. Then we hosted Thanksgiving. Decembers flew by! I did most of my gift shopping online this year - wow, great feeling to avoid the malls! Went to my parents house for Xmas. At in-laws for NY holiday.

Now it's 2011. Time to start afresh...

Gray matter atrophy?

I've been bothered a lot by my cognitive changes over the last 10 years, which seem to get worse daily. I'm almost 40 so I shouldn't be having much, if any issues with memory, etc. However, those of us with EDS (and people with Fibromyalgia) know that it is all too common to lose thoughts, feel foggy, forget everything, and generally feel stupid. It is very frustrating to me that I cannot remember things that were once very important to me - for instance, I hear something interesting on the news (NPR) and then can't bring it into a conversation later that day. The only condition in which my memory doesn't seem to fail me as much is when there is a visual cue attached to it, which is very helpful especially when I need to find something I misplaced! At this point, how much of what I feel is from the pain, from the meds, or from EDS?

Anyway, because of where I work and my general interest in reading scientific literature, I've heard a lot about gray matter atrophy and chronic pain lately. Basically, the outer part (gray matter) of the brain shrinks and loses volume - it ages prematurely. In depression, treatment with anti-depressants can reverse some of the damage/shrinkage in the hippocampus. Is there anything that can help with pain-related damage to the gray matter? One of the articles below seems to suggest that pain management might be helpful.

I wish I understood this topic better and hope there is someone out there who can alleviate my fears of losing my cognitive skills/function at too early of an age. Maybe there will be someone at the EDNF conference this month who can address this issue? Without hope, there is nothing. 

"The function of gray matter is to route sensory or motor stimulus to interneurons of the CNS in order to create a response to the stimulus through chemical synapse activity. Grey matter structures (cortex, deep nuclei) process information originating in the sensory organs or in other gray matter regions. This information is conveyed via specialized nerve cell extensions (long axons), which form the bulk of the cerebral, cerebellar, and spinal white matter." Wikipedia

"As gray matter decrease is at least partly reversible when pain is successfully treated, we suggest that the gray matter abnormalities found in chronic pain do not reflect brain damage but rather are a reversible consequence of chronic nociceptive transmission, which normalizes when the pain is adequately treated." J Neurosci. 2009 Nov 4;29(44):13746-50. 

"Local morphologic alterations of the brain in areas ascribable to the transmission of pain were recently detected in patients suffering from phantom pain, chronic back pain, irritable bowl syndrome, fibromyalgia and frequent headaches. These alterations were different for each pain syndrome, but overlapped in the cingulate cortex, the orbit frontal cortex, the insula and dorsal pons. As it seems that chronic pain patients have a common "brain signature" in areas known to be involved in pain regulation, the question arises whether these changes are the cause or the consequence of chronic pain. The in vivo demonstration of a loss of brain gray matter in patients suffering from chronic pain compared to age and sex-matched healthy controls could represent the heavily discussed neuroanatomical substrate for pain memory." Schmerz. 2009 Dec;23(6):569-75.[in German]

The EDNF needs help - please

The Ehlers-Danlos National Foundation, a group I highly depend on and gladly volunteer time for, is another non-profit struggling in this fiscal climate. I, and others like me who deal with this underdiagnosed and mismanaged condition, can't afford for the foundation to fail due to lack of funding.

What the EDNF does for me:

• creates a safe place to ask questions about EDS - to understand what is going on in my body
  
• provides a wealth of resources - Medical Resource Guides, Loose Connections, medical articles, etc
  
• helps me educate my doctors and medical professionals about this strange disorder
• allows me to advocate for others who need help finding information and connecting with medical professionals in my area
• creates fun and invaluable learning conferences where I can meet others with EDS and listen to professionals present the latest findings or discuss ways to treat our common problems
• gives me opportunities to use my skills and interests to help others
• creates space to form long-lasting friendships
  
• and so many other things I can't think of right now!

As Eliot Chack, on the EDNF Board of Directors, writes so well:
"Please help sustain our community so it can continue to educate caregivers, patients and their families and carry on the call for further research funding. If you can only give $10, $15, $25 or if you are fortunate enough to be able to give more please do, any amount will help a great organization helping families like ours. Please click below to donate, and thank you for your support." 

I've donated. Can you? Please?