Sunday, November 30, 2008


I never imagined allergies could be quite such a nuisance.
Hard to believe that just a year ago I was allergy-free. By January I'd become allergic to my cat, dust, indoors, outdoors, was having constant asthma attacks, and was taking 4 medications to help manage it all. And they weren't helping. Well, it seems at least the anti-histamine helped get the asthma under control, but my sinuses were still very unhappy.

That's how they feel today. Kinda like someone took my nose, smushed it, and put it back. Very uncomfortable and not well-suited to breathing, if anything, a hindrance. It hurts, and the sinus headaches are threatening.

I was getting it well under control with the wonderful supplement I may have mentioned before, a mixture of Turmeric, Ginger, Quercetin, Enzymes, Vitamin D, and Green Tea Extract. (I was taking it mainly for the Quercetin and Enzymes, the Quercetin helps block the histamine response, while the Papain thins mucuous secretions (kinda like the evil Guaifenesin) and along with the Bromelain, digestion and a bunch of other things I can't remember more relevant to allergies. The Turmeric, a fabulous anti-inflammatory, anti-oxidant, anti-cancer herb also helps remove plaque from the arteries and brain, as well as blocking central nervous system sensitization. Ginger is an anti-inflammatory and good for the tummy as well.)
Unfortunately, I ran out of it, ordered it online from the mail-order branch of my favorite health store, and it's taking forever to get here. I'd been doing so well, too, hadn't had one of these days in weeks.

Oh well, hopefully it will get here tomorrow, if not I'll just have to drive the hour to go get it...
Anti-histamines and my trusty pseudoephedrine (which I always found a miracle drug for the occasional sinus headache, but taken daily seems to make me nervous, edgy, and cranky) just aren't cutting it...

Saturday, November 29, 2008

Sleepiness Vs Tiredness

I thought this was kind of a cool article for making that distinction, because I know with me at least, I don't get sleepy usually, unless I've had VERY little sleep. I get exhausted, like I need to rest, but even if I want to, I usually can't fall asleep. It's like some CNS overstimulation is going on, and it's hard to turn the brain off. My mind is hyperactive even when I'm dead tired.

Are patients with chronic fatigue syndrome just 'tired' or also 'sleepy'? - Source: Journal of Sleep Research, Oct 7, 2008

by Daniel Neu, et al.
November 22, 2008

It is presently unclear whether chronic fatigue syndrome (CFS) patients exhibit daytime sleepiness in addition to fatigue. Both fatigue, such as that seen in CFS patients, and excessive daytime sleepiness, such as in sleep apnea-hypopnea syndrome (SAHS), remain poorly understood. Both daytime conditions are generally related to unrefreshing sleep and show affective symptoms.

This study's objective was to contribute to the understanding of the relationship between fatigue and sleepiness in CFS patients not co-morbid for primary sleep or psychiatric disorders.

We compared 16 untreated CFS patients (mean age 32.8, all females) with 13 untreated SAHS (mean age 47.7, all females) patients and 12 healthy controls (mean age 32.2, all females).

Objective sleepiness was measured using multiple sleep latency tests (MSLT).

Subjective sleepiness and fatigue were assessed with the Epworth Sleepiness Scale and the Fatigue Severity Scale, respectively.
• Mean Sleep Latency (SL) on the MSLT was significantly shorter in SAHS patients than in CFS patients,
• And CFS patients showed significantly shorter mean SL than matched controls but within normal range.
• Subjective sleepiness was greatest in SAHS patients
• And subjective fatigue was highest in CFS patients.
• Affective symptoms showed highest intensities in CFS patients.
• While higher than the control group on all measures, compared to SAHS the CFS group had higher subjective fatigue and lower subjective and objective sleepiness.

Despite possible overlap in symptoms and signs of both daytime conditions, our data indirectly support the clinical distinction between fatigue and sleepiness.

Source: Journal of Sleep Research, Oct 7, 32008. Neu D, Hoffmann G, Moutrier R, Verbanck P, Linkowski P, LE Bon O. University Hospital Brugmann, Sleep Laboratory, Universite Libre de Bruxelles, Brussels, Belgium. [E-mail:]

The Journey

I was feels like a lot of my posts are coming off as a bit angst-ridden.
Well, writing honestly about Fibro tends to bring that out I guess. It's hard having an invisible, unpredictable illness that no one gets, and that has wreaked havoc on your life. But this blog is supposed to be about The Journey WITH the illness. Life, as a whole. And the freedom to be honest about the role FM/ME play in it. But not just about IT. There's more to it than that. More than the struggle.

I guess I'm afraid of coming off as pessimistic. That's not me. Things have been tough recently. I thought having a place to live in peace would make everything okay. But it turns out, besides leaving behind a life that took me a lot of effort and time to build, for the first time in a couple of years, I wasn't so busy trying to survive that I could ignore things undealt with, turns out they were just lying there, beneath the surface, waiting, and once I had a chance to rest, there they were. Actually, I think survival became my thing, and not having to drive myself so hard sounded great, but in reality, you get used to things, even hard things. Without having to or being able to do that, it was like getting sick and starting the grieving process all over again.

I'm not where I planned to be in life. I can't even pretend, like I did before I moved, that I have things under control. (The truth was, it was a shakily constructed facade, mostly for other people's benefit.) Things have been dark lately, but there are hours, sometimes days, where I again see the light and the world is good and full of promise and hope.
So hopefully, that will show through a little more in the future :)

Friday, November 28, 2008

FM & ME Friendly Holiday Shopping!

We all know the holidays can be stressful. But for us with FM & ME, it's even tougher. I know normal shopping can present varying degrees of challenge for me, personally. But Holiday shopping? Yikes.
So if you can, stay at home, and shop online! Save time, gas, and precious energy!
Check out my store for your books, music, and electronics! All from the comfort of your home.
Jennifer's Amazon Store


Saturday, November 22, 2008

I Need YOUR Help

The long & the short of it:

I need to have some fairly expensive testing done to help the government understand why I can't work. I'm on my last appeal for Disability Insurance, and I can't afford to have to apply again (I already have to wait another year or so to wait for this appeal to be decided) and wait another 1-3 years to see if they decide to grant me something I'd hoped to be able to count on if I absolutely needed it, which I do. My health has gotten worse struggling while I try and see if it goes through. My credit is wrecked, I'm swamped in debt (mostly medical) and it's just luck that I didn't end up homeless.

As I've mentioned before, one of my biggest problems at this point is the Cognitive Dysfunction. It's so bad, I don't even like talking on the phone much anymore, because if it's flaring up, which happens sometimes even on otherwise good days, but is even worse if I'm not feeling well or I'm tired, then I end up going blank, or not being able to think of words, or keep ideas in my head until someone is finished talking, and I'm afraid I'll sound like a total idiot. In person, it's easy to see when I'm thinking hard, or confused, but on the phone, it's just like, uhh, what's YOUR deal?

This was also my biggest challenge when I was still working. I can't multi-task well anymore, couldn't remember things I needed to memorize, or people's faces I didn't see regularly for long periods of time, no matter how important they were. And I used to be great at my jobs, great at multi-tasking, great at all the details. (Temp agencies used to love me, I'd just dive right in, and I worked great under pressure. Not anymore...) The hugest stress, in that last 7 month period I worked, was trying to hide my memory issues from my co-workers, patrons, bosses, and anyone else I dealt with. I felt like a fraud in a way...Not the person on my resume, that's for sure!

It finally dawned on my a few months ago, that if I want the Social Security Administration to believe this, since it's just becoming legitimately clear and scientifically confirmed what a big impact FM & CFS can have on Cognitive Function (See my posts earlier this month on the subject) and they need everything spelled out and scientifically backed up, that I needed to get some Neurocognitive Testing done. I found someone who would do it, and she seemed to be qualified, informed and very competent, as well as willing to work with me and my attorney. She also agreed that things seemed pretty serious. Only one problem: my insurance won't cover it, because apparently it's "Diagnostic Testing", and for that I would have to meet my $2,000 deductible first. Ha! Fat chance. I have $1500 to go, and it starts over at $0 in January!

But I just can't take the chance of not having that testing done. The more I've thought about it, the more I realize that it is vital. Though I have some proof now that I have pretty serious chronic Enteroviral infections, well, I actually had that proof at my last appeal, but even though the titers were high enough that if they had been Epstein Barr my application would've had to have been automatically approved by law, either my attorney didn't emphasize this, or it didn't matter to the judge. I'm seeing a very well known Infectious Disease specialist at the moment, so that might bring more weight to that, but I can't afford to take any chances.
Plus, it's getting so bad lately, many days my brain feels like a cramped-up pretzel from just trying to get through a routine day, (remembering why I walked into this room and why I grabbed my purse, and why my hand is in it, whether or not I took my medications, ugh! )and I'm a little afraid it might be causing damage. (I've read studies indicating this.) But I won't be able to get further testing, or find anyone to try and treat the problem unless I have real proof that something is wrong. (Despite the studies being done, doctors just aren't informed. The doctor who was going to do the tests thought it sounded more like I had Multiple Scelerosis...but the fact is, the Cognitive Dysfunction w/my conditions is just as bad, it's just not as well known.)

Anyhow the doctor who was going to do the tests wanted a $150 deposit, and it sounded like it was going to cost AT LEAST $500+ out of pocket...depending on the amount of time, even up past the $1,000 mark. (Her rate was $200-$300/hour I believe, and it was going to take a couple of days, sounded like 2-3 hours each.)

So, I decided to go ahead and start accepting donations towards getting that testing done. It's not going to happen by itself, and the last couple of years I've spent on the verge of homelessness, I didn't really get many offers of help, and the current solution is only temporary, so if I don't get my case approved this time around, who knows what will happen to me.
I'm tired of living on the edge of ruin, all the stress is making me sicker as the years go by, and try as I might, despite constant brainstorming, I can't find a way to make ends meet.
So if I can do anything to avoid that scenario, I will. If some chick can get $20,000+ to pay off purses and shoe purchases, maybe it's not so bad for me to ask for help too.
And maybe it will help people realize that though they may not be AIDS or Cancer, and while we may not be outright dying from them, FM and CFS are two VERY SERIOUS, life-changing, and potentially devestating illnesses, and the number of people trying to deal with them is continuing to grow. Yeah, they're not deadly (usually) but the thing is, you have to go on living...and if you can't work, what do you do? Cognitive Dysfunction aside, my health is still pretty unpredictable. I never know when the Autonomic Nervous System stuff will act up, when my feet will hurt too much to stand more than 10 minutes, or any of the many other symptoms will get to be too much to work through reliably.

So if you have any change to spare, and I mean it, every cent will count; please click on the Donate button on the right sidebar. In exchange, I promise to keep bringing you interesting posts about stuff that might help you and yours :)

A million thanks.


Wednesday, November 19, 2008

Autonomic Nervous System Involvement in FM: Not so Uncommon After All

Suffering from weird heart palpitations, dizziness, low blood-pressure, and almost passing out when you stand up? You're not alone. These are definite issues for me, making it very hard to function when they flare up, and according to Current Rheumatology Reports, December 2008, I'm not alone. Actually, this might address the problems I've been having with feeling like I'm having to remind myself to breathe, too! (It mentions below that the ANS controls respiration as well...)

Autonomic dysfunction in fibromyalgia syndrome: Postural orthostatic tachycardia - Source: Current Rheumatology Reports, Dec 2008
by Roland Staud, MD, FACP, FACR
November 16, 2008

Although fibromyalgia (FM) syndrome is defined by chronic widespread pain and tenderness, additional symptoms, including disabling fatigue and dizziness, are often reported by patients with this chronic illness.

Although nonrestorative sleep may play an important role for chronic fatigue in FM, other mechanisms, including dysfunction of the autonomic nervous system (ANS), need to be considered.

Many important biological functions, such as heart rate, blood pressure, respirations, and bowel function, are tightly regulated by the ANS.

However, dysfunction of the ANS is common in FM and often becomes quite apparent after positional changes from supine to upright.

Although such positional changes sometimes result in syncope, they are more often associated with palpitations and dizziness.

Head-up tilt table testing can be used to evaluate autonomic dysfunction, and is frequently helpful for the work-up of FM complaints, including fatigue, dizziness, and palpitations.

One of the most common events experienced by FM patients during tilt table testing is postural orthostatic tachycardia syndrome, which is defined as a heart rate increase of more than 30 beats per minute after more than 3 minutes of standing upright.

Source: Current Rheumatology Reports, Dec 2008;10(6):463-466. PMID: 19007537, by Staud R. Department of Medicine, University of Florida College of Medicine, Gainesville, Florida, USA. [E-mail:]

Monday, November 17, 2008

Alternative Treatments for Allergies

My newest in the long list of my ailments is my allergies. I had a very stressful year last year, and I guess that, having to breathe ash-laden air (there were bad fires in CA last year, the sky was brown for weeks, and since it was during a Fall heatwave, I had to keep the windows open) and my already screwy immune system, I developed the allergies from hell. The worst being my allergy to the cat who's spent over a decade with me. Now, obviously, getting rid of her would be like giving up my child. It's NOT going to happen. Plus, it's not just her, I seem to be allergic to all kinds of things, inside, AND outside, so it probably wouldn't help all that much.
So I've been struggling.
I had NO idea how bad allergies could be!
With all the advertisements for anti-histamines on TV, it would seem like all you have to do is pop one, and voila! All better!
Not the case.
Also, I was under the misconception that allergies were like a mild cold. Not that having a cold non-stop would be fun, but...
Now, granted, I did have the sneezing, watery-itchy eyes, stuffy nose thing. That, the anti-histamines seem to have helped. (Along with eyedrop anti-histamines, and washing my hands immediately after touching kitty.)
But I still get EXCRUCIATING sinus congestion, which makes my brain fog sooo much worse, makes me so tired (plus the existing fatigue of course, which I've learned to live with, and was manageable until this point in time) I have to lie down and if I'm really unlucky, really bad painful sinus headaches.
In the past, whenever I had sinus issues, I could take a pseudoephedrine or two, and it was GONE, all better within 20-60 minutes. Now, I'm lucky if they work at all.
There there's the asthma attacks. Those, thankfully, seem to respond well to the anti-histamines, and having an air purifier.

So the big thing is the sinus congestion & subsequent headache, increased fogginess, and fatigue. Not only was the Pseudoephedrine not working, but it was making me jittery, moody, and possibly aggravating my heart & BP issues.

So I did some research and came up with the most unexpected thing: Digestive Enzymes!
Apparently alternative allergy practitioners use them to treat allergies.
Bromelain seemed to be a big one.
The next important supplement was Quercetin. Basically it sounds like a natural anti-histamine. Vitamin C is good as well, as it's good for the immune system.
I'd also been wanting to try Turmeric and Ginger supplements for inflammation (asthma and bodywise) and pain. (Turmeric, along with being an amazing anti-oxidant, clearing plaque from the blood vessels and the brain, also seems to work on the nociceptors, something about preventing or controlling central oversensitization, which causes FM pain and is why nerve pain/epileptic drugs are working for FM.)

I was lucky to accidentally come across a supplement that had all of those, plus Papain, another enzyme. It's definitely helped. Not cured, but helped.

Also, another big help is Neilmed Sinus Rinse. You have to do it for awhile, and keep it up to keep results.

I've read about a technique called BioSet, too, which totally makes sense to me, as it employs muscle testing, of which I am a believer, but of course, no $$ for that yet...The doctor I spoke with sounded confident she could if not cure, get the allergies very under control. Add another thing to my wishlist ;)

A bit worn out now, so more later.

Sunday, November 16, 2008

A New Week

The last one seems to have gone by sooo fast! Time seems to be whizzing by lately. I didn't do as well on the stretching goal as I'd hoped, but I did do more than the week before, so that's something.
I seem to be having a lot of trouble with my legs lately. First pain around my knee. It kept spreading one night, and I was afraid I might have let inactivity flare up my tendonitis, a problem I've had before. It's one of my scariest problems, because when I get it, my knees get so bad...when I walk they scrape and pop and get weak. I ended up using a cane once, it was so bad. And then the hurts to even sit (the bending) and walking is awful, so I'm stuck lying down. The only cure is to strengthen the muscles around them. And keep them that way. So I guess I'd better make getting back to the gym a priority.

Not a small task though. I feel so overwhelmed lately, and I'm trying to get my life under control, but it's been a battle. The CFS seems to have calmed down a bit, but the FM is getting worse. My back is killing me, it flares up over nothing, even if I just get too worn out, and I end up tired, exhausted, and out of breath. I've been wondering if anyone else gets that? It's almost like I forget to breathe. It doesn't feel like asthma. It's almost like I'm too tired and my body forgets or something.

I have a weird new thing in the lower part, too, I've been having this odd pulling sensation near my right hip, like some really thin tissue is being pulled & stretched. It's been there for months, if I move just so, Ow. I guess I should get it checked out, but I'm not looking forward to dishing out more copays. And I know I need physical therapy, too, for this all to keep from getting worse. I'm so exhausted with being broke. But still too sick to do much about it.

Sometimes I'm tempted to take up a collection, lol. I mean, there was some girl who did that a few years back, solely to pay off her credit cards because she bought too mahy shoes and purses, and then lost her job and ended up $20,000 in debt. And I guess she was cute or something, because people did it!
Medical bills seem like a much more worthy cause.
Which reminds me...I need to go call in some refills!
Ta for now!

Monday, November 10, 2008

Goal for the Week: Stretching

In an effort to re-introduce some structure to my daily routine, I've decided to take some good advice...and start stretching daily, and nightly. I've made room in the living room for my yoga mat and a chair to do my chair yoga routine, which I pretty much know by memory from watching the Healing Yoga for Aches and Pains DVD so many times.

I've noticed I usually feel so much better at night...It's like it takes my body the entire day to warm up, lose the stiffness, and get going. I feel more productive, more flexible. So I got to wondering if there were any logical reasons for this. Did it just take me all day to warm up? Was it the muscle relaxer I take at night?
Well, I hate that I've even been taking that muscle relaxer every night (though that's how it's prescribed, I just would rather not) and I'm so groggy in the mornings, that doesn't seem to make taking it in the morning a good idea.

So I got to thinking about the idea of getting my body going faster. A good friend of mine goes for a morning walk. While "real" exercise like that, for me, in the morning is out of the question, I do remember when I was in a lot of pain this past summer, and having really tough mornings, even though just the light movement and breathing exercises at the beginning of the video made me want to crumple into a heap on the floor, once I got going it felt great, and I was feeling a lot better, getting through the day much more easily, in a better mood, and more motivated.

So if I can get back in that routine...

Then, I was also reading another blogger who mentioned she stretches at night, and I got to thinking, that that although I feel better in a sense, and more productive at night, it's when I have the most pain. Lately it's been driving me crazy. Tension, cramps, spasms, you name it. Lots of time on the massage chair. And the Thermophore. (Which incidentally, just pooped out on me!)Maybe stretching or Yoga is just what I need to help me relax...The big goal being, to get back on a more normal schedule. Lately, I'm lucky if I'm asleep by 3am, and frankly, I'm sick of it. Especially with the days getting shorter, I want to be up and at 'em, as early as possible. And that's still usually later than most people, even at my best, so...

Wish me luck on my new routine additions. Hell, on the idea of a routine, period!

Sunday, November 9, 2008

Cognitive Dysfunction in FM/CFS and MS: Similarities

The "Fog" is driving me insane lately! My brain often feels like a pretzel, I feel soo socially clumsy and tactless, and I keep forgetting to do important things...I get overwhelmed, just trying to make a decision if I have too many options, or trying to overcome an obstacle. Sometimes just too many noises at once overhwhelm me (like trying to watch TV with the fan on, I get all stressed out.) I feel like I have ADD sometimes too, so hard to focus. It's really tough on the phone, too, because I zone out, or think too slow, take too long to respond, and people on the other end get confused, I get flustered, and...ARGH! Talking on the phone has become the bane of my existence lately!
So I remembered the Doctor who was going to do the Neuropsych testing asking me if I was sure it was FM, if MS had been ruled out, and recalled that it was mentioned in one of the articles I posted, and decided to Google it. Interestingly enough, they did an amazing job of describing the Cognitive Dysfunction in MS, AND it sounds a LOT like what I deal with, so I decided to post it. Would love input on whether or not other people have similar problems to what is described in this article:

Cognitive Dysfunction as a Symptom of Multiple Sclerosis

Ups & Downs, and Life

A good friend of mine had a baby shower this weekend, and I made the hourlong trip back to where I lived until a few months ago to attend. Truth is, I wouldn't have missed it for the world. I've felt bad about not being there for her, I know she's had a tough time, very tired. It's kind of ironic really, because I declined a lot after I moved, so we've both been sitting around being tired and not feeling well, and I keep thinking if we didn't have those 50 miles in between, at least we could keep each other company! Even more ironic, because she was my favorite girlfriend to go out with, on the occasions when I could manage it. Together, we almost guaranteed a good time for each other, and anyone we came across or who came along. Now, she can't drink, and despite the norm being that a drink or two seemed to relax and numb my muscles, ease the fatigue, and make me not care if I was a tactless ditz, making me feel normal if only for just a few hours, I can't seem to tolerate it either now!

Anyhow, I got there late, thankfully that wasn't a big issue. But I only managed to stay for two hours, an hour and a half in I was completely exhausted, having trouble breathing (something that seems to happen when I get tired, along with my back hurting up where my lungs are, don't know why that is) then I said my goodbyes (fog, pain, & fatigue ensuring that I left out a couple, I hate that!) and went to lie down in the car for a bit before heading home. Let me tell you, I was SO grateful for my car's cruise control! (And the great traffic! Or rather, lack thereof!)

On the way home, I felt happy and nostalgic at seeing my friends.

But by today though, I just felt sad, and lonely.

Sometimes, I can't feel that life is passing me by, watching my friends and family go on with theirs. I feel a little bit stranded out here, and lost.

Things have been tougher than I thought since I moved. At the time, my main concern was having a roof over my head, and a place to live in peace.
But there are still so many things to worry about.

I feel like I've tried so hard to find a new balance, a new path in my life, but nothing ever seems to work, at least not yet; I find nothing but brick walls. I'm afraid I've become incredibly disorganized, and despite my best efforts, I can't seem to get it together, or find the path to regain financial security and control of my life again.

I'm no longer have the cloud over my head about how I'll come up with the rent, but by the time I'd found the solution to that, I'd already just about driven myself into the ground yet again. After the move, I started having big setbacks. Foot sensitivity causing pain so bad I couldn't be on my feet more than 10 minutes without provoking it. Everything just seemed to unravel from there. Apart from not being to do much of anything, I started having the weird autonomic nervous system symptoms again, heart palpitations & weirdness, orthostatic hypotension, and then my allergies worsened, days on end with sinus pain, worsening my fog, and then when I'd just about got that under control, asthma attacks that left me trying not to panic and struggling to breathe for days at a time. Kind of put a kink in my plans to make a new life in my new city. Increasing doses of Neurontin and new shoes got the footpain under control, but I have new pains sprouting left and right...Some new stuff too, that I think might be nerve pain, a weird tingly tightness in my muscles, my chest, my arms, shoulders. It's not quite pain, but it's maddening nonetheless. And my stamina...It's been a tough pill to swallow, how easily I tire these days.

I've found myself struggling for acceptance AGAIN. I seem to go through the steps of grieving over and over again, and never quite finish them. I've found myself wondering if it's because before, I was struggling so hard to act as normal and make people believe I was as normal as possible, live up to their expectations of an attractive, smart, 20something. But the fact is, my life is anything but normal, and I keep finding myself trying to accept this. That's a huge struggle: letting go of wondering what other people must think of me, and accepting that I am doing the best I can, and that those "other" people have no idea what I struggle against each day from the second I get out of bed, and that that's not my problem. My job is making ME happy. So here's to that!

Friday, November 7, 2008

Studies & Research About Cognitive Dysfunction

One thing I didn't think of until recently, is that it would probably be helpful to have some testing done to verify Cognitive Dysfunction; obviously the SSA was not taking my word for it. It just so happens that a couple of great articles were published about research on just that subject this past year. Some even include suggestions for tests, so I thought I'd share:

Neuropsychological Performance in Persons with Chronic Fatigue - Source: Psychosomatic Medicine, Jul 7, 2008

Speed of Mental Operations in Fibromyalgia: A Selective Naming Speed Deficit - Source: Journal of Clinical Rheumatology, Jul 17, 2008

Fibromyalgia and Cognition – Source: Journal of Clinical Psychiatry, May 2008 (online)

Following is a summary of the article by Jennifer Glass, to give you an idea:

"Patients with fibromyalgia frequently complain of cognitive problems or "fibrofog." The existence of these symptoms has been confirmed by studies of the incidence of cognitive problems in fibromyalgia patients and by the results of objective tests of metamemory, working memory, semantic memory, everyday attention, task switching, and selective attention. The results of these tests show that fibromyalgia patients have impairments in working, episodic, and semantic memory that mimic about 20 years of aging. These patients have particular difficulty with memory when tasks are complex and their attention is divided. Cognitive symptoms in these patients may be exacerbated by the presence of depression, anxiety, sleep problems, endocrine disturbances, and pain, but the relationship of these factors to cognitive problems in fibromyalgia patients is unclear. Standardized tests and treatment have not yet been established for cognitive problems in fibromyalgia patients."

Another great article, based on another study that came out this past year can be found in the April-July 2008 issue of Fibromyalgia Aware Magazine, entitles What Do You Mean, My Brain is Shrinking?! pg 54 by Patrick B. Wood, M.D.

Tuesday, November 4, 2008

More Proof of Abnormalities in Fibro

I've seen similar studies in the past for years now. Basically it's about measuring blood circulation in different parts of the brain.

Sunday, November 2, 2008

Monthly Poll

Hi Everyone!

I just added a poll for the month of November.
I'm curious to know how many people with FMS/CFS are able to work full-time, part-time, or at all. It seems most people with FM/CFS I have come across, online at least, can't really hold a regular, full-time job, so I want to see how accurate that perception is.

It will be up until November 30th.

Thanks for your input.


A Day in the Life of an FM/CFS Patient: #1

I'm going to try something and make this a series of posts, so if you find you like them, you can read, otherwise skip to the others.
A Day in the Life...Will a glimpse into a day in the life of and FM/CFS patient which illustrates unique challenges faced by people like us every day. Some of us are healthier, and some of us less so. Personally, my abilities fluctuate, from day to day, or week to week, which is another reason I think this might be beneficial, for illustrating that.

I worry that all these details will be tiresome for some people. But then I remember that it is my aim to help people out there going through what I am, and I think that just maybe, if they see their own lives in my words, they will know that they are not alone in dealing with the hassles of life with chronic illnesses such as FM/CFS. I know it lifted my spirits the other day, when reading someone else's blog, I came across a story that sounded like something right out of my life, but that I'd never shared with anyone, because I felt like it was something I alone was dealing with. It was really good to know I wasn't, and next time I find myself in that situation, I will remember that, and I think it will lighten the load a bit.

As for any non-patients reading this blog, my hope is that I will help you to better understand your loved one and what they deal with from day to day, and raise awareness of how these diseases interfere with everyday life, and better understand why we need to raise awareness, and continue to encourage research.

So here goes...

Today started out well. Lazy Sunday. Slept in as late as I wanted.
Got up. Didn't feel tooo stiff, or sore. Place all to myself.
Took my allergy medicine, to stave off the more and more frequent asthma

Ate, watched a little TV, and felt like CLEANING.
This was a big deal. It made me HAPPY! (I grew up with a clean-freak Mom
and I've been known to practically have a meltdown when I have to let someone see my apartment a mess, which I can assure you NEVER happened pre-Fibro). Lately, I've been having a hard time feeling up to anything that practical though, guilt or no. For some reason, my stamina has PLUNGED, meaning I get worn out FAST.
But today, I felt about as normal as it gets, and decided to put it to good use!
So I tidied up the living room. Tidied up and organized the kitchen.
Same for the bathroom. I was hoping to get to the real cleaning, sweeping, mopping, dishes, that stuff, but I was already worn out, feet aching threateningly, and legs tired, and I'd promised myself I'd do some Yoga, too. (Lately I've been trying to put into practice the idea that even if I start out feeling great, and feel really motivated, that's no reason to drive myself into the ground. Simple logic, right? Unfortunately, once I get started, I want to do it ALL. Just call me the Queen of Excess!)I hoped maybe the Yoga would stretch me out, relax my muscles out of
their complaints against the tidying up, and I'd manage just a little more, but I reminded myself not to push it. Still, I got part of dinner cooking on the stove before I got started. I tried to be extra careful not to stretch too hard, as good as it felt, because I've gotten totally out practice the last weeks, and last time, even chair yoga strained some muscles. (That's really a new low, I don't know what's up with that! The great thing about this Yoga program, which I reviewed below, is that even on bad days, it made me feel better, and there was never any real fall but...before. But last time, I could barely walk for a couple of days.)

The Yoga felt really good. I felt things releasing, muscles finding more normal resting positions. A little more relaxed and centered. But, my body felt even more shaky after, mainly from the lower back down, and my shoulders down to my hands. Weak, and shaky. I figured maybe I just needed to lie down, rest, and it would pass. So I did, but it didn't. And the rest of dinner was still waiting to be cooked, so I did it. But I was hungry, and thinking maybe my blood sugar was low. So I drank some milk w/protein mix.
By the time dinner was done, my hands felt so weak, I was afraid they might give out unexpectedly while I was serving (my fingers have been known to do that) so I figured I'd better ask for help.
My Dad, had just gotten here, so...he got to do the honors, and I went and
got my trusty Thermaphore pad to see if it couldn't coax my muscles into relaxing while I ate dinner. Unfortunately, I was too tired to hold much of a conversation, the effort just seemed like too much, so I don't think I was much fun at dinner, maybe, just maybe even a little cranky...
Funny, I'd been sooo happy to have gotten some cleaning done earlier! But
in reality, I realized all I'd really done was give it a lick and a promise. I tried
to tell myself that at least the illusion of cleanliness was something. The place definitely looked a lot better, at first glance, anyhow.
It's just crazy how fast I've gone downhill lately. I'm actually HAPPY to stay home Friday nights and weekends lately, especially after that concert I forced myself to go to. I'm actually kind of relieved that I don't know anyone out here, because if people were calling me to go out, then I'd have to deal with the feelings about a.)Having people think I'm no fun (the horror!) or b.) Wanting to go, and knowing I shouldn't.I find myself having to lie down so much more during the course of the day,
and my blood pressure hasn't even been feeling low lately. Even sitting at the PC is a lot harder on me than it used to be. Usually when I get up, I'm stiff at the waist, takes a second for me to straighten up. Lately the top of my back hurts and is so stiff and bent, I feel like I'm going to become a hunchback! Kinda funny, I guess! Unless I do!I think I'm just wayyyy overdue for a chiropractor visit. Unfortunately, I don't see the finances granting me such a luxury any time soon. No matter how
hard I try, I can't seem to find the energy to get a steady income going.
(I'm waiting on the infamously screwed up Social Security Disability Process. This is Appeal #2, Year 2. Next decision: Approximately 16-22 months.)
So odd, you'd think after hanging in there through the last couple of years,where I didn't even know if I'd have a place to live from month to month,continuously, for TWO YEARS, now that that problem is taken care of, that I'd be doing so much better. But maybe I was on the verge of collapse for a long time, and my body was just gracious enough to wait until the right time.
Maybe it's not such a maybe. Because I felt like it so many times, like I just couldn't possibly go on, keep jumping through all the hoops, keep being disillusioned at things not working out. Being so tired, feeling so sick. I FELT myself pushing myself beyond capacity, and then some more. But it didn't kill me, so I can't on pushing. (Like Missy said in her comment to my last post, bad idea. But I really had no choice.)
It's hard to know what to think. Part of me says, okay, the basics are taken care of, so relax for a bit.
But part of me fears everything is still on the edge of spinning out of control,
and if I don't take steps and take some action, things will go to hell. Part of me says, hey, it should be easier now...take advantage of that and maybe life could be normal again. And part of me also wonders, what if I'm deteriorating from not trying enough? Maybe it was the trying that was keeping me functioning.
These are the types of dillemas a driven, productiveness-obsessed person with a chronic, fluctating illness faces. Especially one who abhored financial instability, and now finds herself stuck in a neverending spiral of it.
So much guilt and confusion.

Oh, and just to top things off, my beloved heavy-duty heating pad blew it's fuse a little while ago. That's where that whole relaxing for now plan blows up. I can't afford to relax. Yoga may be a temporary substitute for the Chiro, but I'm afraid if I put it off too long, I will join my many fellow FM friends who are in constant, excruciating pain, and knowing I might have prevented's just too high a cost. Relaxing is just not an option. You can never truly relax when you're broke, anyhow. I have to find a way to make a living, sick or not. There has to be something I can handle. I can't believe there's not a way...

Well, I have stuff in the works. But sometimes it's just hard to imagine if the pain and stiffness get so bad from the extra time I've spent on this blog in the last week, and if I get so wiped out just tidying up around the apartment, how I can manage more?

No choice but to try though. The good ol' U.S.of A., land that I love, is just not the best place on Earth to be when a chronically ill person.
In England, or France, if my doctors were telling the government I couldn't work, that would be the end of it, I wouldn't be living in the lap of luxury by any means, but at least I could quit worrying, see the doctors and get the treatments I need, be sure to get all my medications, have some peace, and have a better chance at getting better. But here, the government would rather believe some doctors who talked to me for 5-10 minutes than years of medical evidence from my own doctors, and would sooner see me on the streets than help me. It makes me ask, how many people aren't as lucky as I am, and do end up on the streets? I swear, one day I will found an organization to help those people.

For now, I will remember them as I vote on Election Day. Five thousand dollars a year for health insurance just isn't gonna cut it for people with real medical problems, if even for the average Jane. We need universal healthcare, and there are already good examples to follow. We just need someone who isn't afraid to do it.