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]

Crying out for Purpose

I sometimes feel like a "Jill-of-all-trades" with just a job, not a life work that I love or a true calling. I have several people close to me who have that sense of having purpose and have been able to pursue their passion. I don't know what mine is, and I'm almost 40.

There have been times in my life where I thought I knew what my purpose in life was supposed to be, but I've never followed through (like next level of schooling) for a variety of reasons. I got my BA in Cultural Anthropology but never pursued anything in that field. Some things I've tried: acupressure, herbalism, nursing assistant with the intention of doing hospice care, basic dance instructor...


Past Pursuits
Acupressure: did very well at this for several years but struggled at the end with lack of continuing education and mental/physical fatigue (did I mention my high level of empathy as well as my EDS?). I can go into this more at a later time - loooong story.

Herbalism: I entered a group apprenticeship for a year and left after ~4 months in complete frustration. The teacher was not teaching anything that was promised and got sidetracked by another student to focus on flower essences, which I just couldn't believe in. I wanted the true, traditional herbalism and this teacher was supposed to be reputable. This coincided with one of the biggest mistakes in my life - I turned down an interview with the National Park Service for a guide job at Mesa Verde in Colorado because I had enrolled in this apprenticeship program. Made the feelings of frustration and being cheated even worse.

Hospice home-health aid/nursing assistant: My beloved grandmother died and was in hospice care at home. I was so impressed by the hospice workers, plus my interest in healing, that I tried to find a meaningful direction in that regard. I enrolled in the local nurses aid training program and did well throughout. I got a job in the facility where the training was done (nursing home) in the dementia wing. I planned to log some hours there and then go on to the home health-aid program. One of the things that drew me to working with the elderly is listening to them and treating them humanely. I say this because too many nursing facilities are horrible. I discovered two problems in my new job: a) I was rushed around so much that I couldn't possibly treat anyone like a human (and most aids didn't!), and b) I had a bad reaction to something that caused my hands to welt up and itch like crazy for a few days. I took those days off and then quit.

Acupuncture: So, with my ideas and skills in tow, I thought I had made up my mind to pursue a career in acupuncture with a focus on pain management. I was excited because one of the best schools in the country was in my State! I was working on my prereqs for a Master's program when life happened instead - let's just say that it was the worst year in my life. I ended up moving 3000 miles away to start over again. I got married and settled here. Since I was now irreversibly thwarted from that path, I've felt lost.

Motherhood: I also felt strongly that I was meant to be a mother. I always thought that meant that I would have a baby; however, God gave me two beautiful, older step-children. Weird how that works. Sometimes the sadness of letting go that dream of having my own baby is overwhelming, but it gets easier with time. Realistically, I could not raise a baby now that my EDS is a challenge. There is a young woman I know who just got pregnant and is so thrilled! She just glows. It makes me wish for the ignorance of my 20s, but that would have changed the course of my life and who knows what shape I'd be in now (plus I would not have met my husband - not acceptable!). Again, I have felt a bit lost since that dream is never going to manifest.

Possibilities
Teaching intrigues me and is what my grandfather has wanted me to do since I was young. I am scared that I will not be able to complete the training in a full classroom because I simply don't have the physical energy and cognitive strength I used to have in my 20s. I like the challenge of learning and I've been told I have a gift for teaching. Some alternatives to full classrooms are tutoring and ESL classes. If I got my Master's, I could teach at the Community College level as well. First, I have to take the GRE's and I am terrified! I cruised through the english part of it in the study guides I bought. Then I got to the math section and couldn't get through the first page!!! I think I have to take a math class before I can take the GREs. :( Did I ever mention how much I hate math and that it's always been hard for me? When we get in a better financial place, I'll sign up for a dreaded class. I don't think the GRE study classes, like Kaplan, offer math classes/tutoring so I'm looking into the community colleges around here. Yikes!

And then there is the healing ministry I feel called to. I want to sit with people who are dying and are alone. I want to listen to those who are challenged by life. I want to help others while helping myself. I also enjoy being an advocate for EDS. Our local area doesn't have a support group and I think it's possible to organize one.

Fears
My great concern is that I will let my energy get sucked away by those in need and I will overextend myself. I have a full-time job with a commute that take most of my energy. I sleep most of the weekend to get enough energy for the next week. Where is the balance?

Have I missed the boat?


What is your purpose in life? If you weren't born knowing it, how did you figure it out?

"One that won't go away"

I meant to write an update to my Resolution and Lent post but wasn't in the mood until now. 

1) Pain management: I've been taking a short-acting pain med for 4 years now. It lasts ~3 hours and then the pain and mental dysfunction/cloud comes back. So, I had a light-bulb moment - my pain med is not making it through the night so I wake up in pain (duh!). I guess taking control of my pain since January has led to brilliant deductions I never thought of before. Feeling stupid? Yes.

2) Morning wake-up time: Well, this change is not going as planned (sorry Jesus). Some of you, including hubby, would say 'of course not', but I was determined. So, I did well for 2 days of the first week then I got sick for three days. Early waking worked for another 2 days and then I overslept two days. I tried for another week or thereabouts and then gave up. Not a good thing to choose for Lent, I guess, but I thought such a motivator would kick my butt into gear. Turns out my butt needs the gear it is already in. 

Sigh
Early into the second week after getting sick, I had an acute care appt with my MD due to that bug. While she was seeing me for that issue, we talked about my pain problems during the night. I've tried everything short of waking up every 3 hours to take pills, which would be ridiculous considering the level of fatigue I have. So she said we need to try a longer acting medication. I was not happy about the options, which are both in the controlled-substances category. Better way of saying it is that I was scared of the options. 

Scared
I'm not afraid of the med, I'm afraid of the name. Morphine. It seems unreal to need something that we are taught as very potent and used in major cases of pain. Granted, I am on the lowest dose, so there is a reality to the situation that I am not severely ill. But still... I am more likely to call my new medication by its brand name than the generic we are so familiar with. It doesn't seem to be a stigma issue I am dealing with either. I know... I think it also has to do with the looks people give me when I explain to them I have a chronic painful disorder (if I am wearing braces or am limping, etc). I don't like the sympathy and immediate concern they feel they have to express, though I am guilty of doing the same to others who might struggle with other stuff. I am not ungrateful, I don't like the attention. Add to that the sound of morphine and the concern doubles. It is hard to explain, I am finding. So, I suppose there is an internal and external level of anxiety about the new drug. I don't want the attention that comes with other people's perceptions of what I must be going through if I am on morphine, and it is hard for me to acknowledge that I cannot control my body/pain. It comes down to quality of life, ultimately. 

When I was initially diagnosed in 2006, my doctor at the time discussed the different types of pain medications with me. I was anxious about opiate meds so I accepted tramadol, a short-acting med that helped tremendously in combination with OTC naprosen. The doc called tramadol a "baby"-narcotic with a similar action to the big guys. The naprosen helps with inflammation that the other meds don't cover. 

For pain, there is no huge difference with how I feel on this med vs the tramadol; I just don't have to take pills every 3 hour, which is very nice. At the follow up that I had, we discussed my pain status after 4 weeks on the ms contin. The new med lasts the 12 hours and helps bring the baseline pain down from a 5/6 to a 2/3. Add tramadol (and aleve if needed) to that and I have a 0.

The only problem that doesn't go away with the ms contin is the brain fog, which typically manifest as confusion, spaciness, forgetfulness, and word loss. Tramadol makes me feel like my old self before the constant pain. I can't explain how horrible it is to feel like you used to be moderately intelligent and a good, reliable employee, and now you are incompetent, unreliable and mentally clumsy. So, my doc asked me several questions and suggested that I take the tramadol when I feel this fog come on; that it is that 2-3 level of pain that is still distracting my body/mind from working optimally. It really does help to combine the drugs as she suggested. The only concern she has is the level of seratonin inhibitors in my system between the cymbalta and the tramadol - that I should back off tramadol as much as possible, which is the benefit of adding the ms contin. I went from 6-8 tramadol a day down to ~3, as needed. 

So, I am doing well on my New Year's resolution to manage my pain properly, even though I might be having adjustment issues. Next year, I'll try cutting back on chocolate or some other temptation for Lent. Though difficult, I will have a much easier time managing my chocolate intake than my sleeping schedule (insert big smiley face here). You lose some, you win some. 

Resolution and Lent

This is the year of Control. It is so easy for life to get out of control and for chaos to take over. I've found a few places in my life that I can have power over with the hope of increasing my quality of life. So, I made a New Year's resolution as well as a commitment for the 40 days of Lent that I think I can actually achieve!

1) New Year (and hopefully every year thereafter): Don't chase the pain. Manage my pain level so it doesn't interfere with my marriage, my friendships, my hobbies, and general quality of life.

Lent: Get up at 5:30am EVERY day. 
Self denial - pushing myself out of bed instead of hitting snooze for another 90 minutes. Getting up early when I am NOT a morning person. Fasting from self-indulgence regarding morning snoozing. 

If I make myself get out of bed as soon as the alarm rings, and I do so between 5-6am, I can stay awake (mostly - still require 2-3 cups of black tea and some rest time, but noooo sleeping). I can be a responsible adult and get to work on time and perhaps get some more hours in the day, including nice ones with my husband who IS a morning person. 40 days of 5:30am might actually reset my internal clock for the better - including more restful sleep (more hours does not always equal more restful sleep for me). On the weekends, I can take naps; my hubby does anyway. Might as well join him and the cats.

Issues 1 and 2 are closely tied together. If I wait to wake up until a more reasonable hour during the work week, it is much harder to get up due to pain (snooze button to the rescue) and/or not hearing the alarm AT ALL(!). I am not sure what it is about those extra couple of hours that makes a difference?  Mind you, the pain is there even when I wake up at 5:30, but it is easier to have more power over it at that time. No clue why. But I do have to take my pain meds when I get up regardless of the time. Hmm, I hope that makes sense. When I let myself sleep on a day off, I will naturally wake up at ~8:30am, though it is soooo easy for me to sleep until noon or later! Ha ha!

Started and stopped...

That's how the last few months have been when it comes to writing blog posts. SOOOO much has happened since my last post that it feels overwhelming to edit what is worthwhile posting.

Just to get rolling again, I thought perhaps I could point out the "collection" of blogs I follow (over to the right -->). I intentionally look for blogs related to Ehlers-Danlos Syndrome and Hypermobility Syndrome. I also like to add other blogs I think people would find interesting or useful. There is no way I can possibly read all the entries people write, though I tried at first when I'd just gotten started, but maybe you'd like to add to your reading list.

When I started blogging, one of the things I found so helpful in other peoples' blogs was the lists of blogs they read. I've met some EDS friends through their blogs; I've heard perspectives on the syndrome that I might not have considered; and I hope that maybe someone can use my list to make their own connections. It seems that there are never too many opportunities to meet others with Ehlers-Danlos, or commiserate with chronic pain sufferers, or learn about techniques to keep your marriage and friendships alive when you feel like crap.

So, I invite you to look around and see who you find, what you learn, and if it makes the time between doses of pain meds go a little faster.

Finally, if you have any blogs you'd like to suggest, drop me a line.