Flippy - I Rant, You Read
Monday, March 16, 2009
the wee hours
If Anyone Wants to Learn More About Fibromyalgia
This book is a collaboration between a Fibromyalgia specialist and a Fibromyalgia patient. It tells people what to expect, what they might be capable of, not how to buy multi-level marketing vitamins from a “Fibromyalgia Center”, known for requiring patients to buy certain proprietary supplements in order to remain patients. Those centers are well-known for not helping their patients do anything except empty their bank accounts. Here’s a cheap way to get an education - The Fibromyalgia Network. You can sit down and read until your hearts and minds are content. There is no shortage of articles explaining what it is, what the symptoms are, what makes it worse (ahem, STRESS!), what may (not everyone responds to the same treatment) make it better, and why, and how all patients are different. In fact, Leigh-Ann and I have completely different symptoms other than the pain & fatigue. By the way, when I was in high school, I was writing bad poetry about things I knew nothing about, but it made me sound experienced and worldly (I thought), and I even have a song writing credit in ASCAP. Quoting the Dali Lama doesn’t make someone insightful & deep, it makes someone a computer user. When I was in high school, I had no idea what real pain and overwhelming fatigue were. I would get a good night’s sleep and I would be all better by morning. When you have Fibromyalgia, you can’t get a good night’s sleep, because one of the problems of FMS is non-restorative sleep.
If you don’t like that site, then the Wikipedia entry on
might be the thing you’re looking for, as it comes from a wide variety of material and links out to many different sites. None of these sites are trying to sell you anything, I might add.Or, there’s always a documentary for just about everything, and FMS is no exception.
”One Woman’s Story” from CNN: “Nancy’s condition progressed from mild aches and general tiredness to the point where she had trouble walking from room to room. “It was December of 1989,” recalls Nancy, now 49. “I tried to stand up and felt excruciating pain in my arms, legs and neck. I couldn’t even make it out of the room.” The name is not the only similarity. Although fibromyalgia is chronic, the symptoms may cycle through various stages of severity. Nancy says she slips in and out of “remission” often. “Today is a good day,” she says, “but I never know what will happen next. At any given moment, I might experience pain that impairs me to the point of debilitation. I just have to take each day as it comes.” And, in fact, it’s a complete mystery what each day will bring. I’ve cancelled clinical study appointments at the last minute, although they’re used to that, after working with FMS patients on a study. When our clinical study meds were taken from us by Pfizer, more than one patient called in, unable to make it to the office for an appointment. Because we get paid for those visits, I doubt anyone was cancelling just for the hell of it. I know that when we cancelled, we consulted with each other and decided that, yeah, there was no way that we could get up, shower, and drive across town for the appointment that day. And, our doctor completely understood.
Saturday, March 14, 2009
early morning
Why some people can’t just exercise their problems away…
Following my rambly complaining is an italicized snippet from a new study on how exercise affects those with ME/CFS (CFS is often linked to FMS, and ME is what FMS is called overseas), and why they can exercise one day, but then don’t have the energy to keep going day after day. This, because I was told that I should be “exercising and not taking massive amounts of pain meds”. Because, as we all know, our families & friends are often much much more knowledgeable about our physical conditions than we are or our doctors are. This morning, I picked up a ton of poop in the yard (it was maybe four days’ worth) and while I was doing it, I felt kind of okay. It was nice outside and I like being able to do things. However, when I was done, I crashed for close to 18 hours, and all I have to show for my efforts is exhaustion and sciatica in both butt cheeks. Oh, and a clean yard. I feel like we owe our neighbors to do as much as we can to clean up the yard, not to mention, we don’t want Eli or Cricket to attempt to “clean up” the yard with their own grotesque methods.
Oh, and one more thing - I was told that I wouldn’t have had back surgery if I’d won MegaBucks, as if being rich would’ve made the bulging disk disappear, and that my herniated disk was something that was just a normal consequence of an athletic childhood and I could’ve worked through it, if I wasn’t so darned lazy. No, my sore knees from catching are a natural consequence of my childhood of sports. My knees bother me daily, but mostly it’s mild pain that I can ignore. Herniated disk pain is not only pain that you can’t ignore, it can cause permanent nerve damage if you wait too long to have surgery. My only regret about my back surgery is that I waited so long, trying more conservative treatments, while I was only getting worse and worse. The final catalyst that pushed me toward surgery was that I wasn’t just having pain & numbness in my left leg/foot, it started moving into my right foot. Leigh-Ann doesn’t drive, so my “driving foot” is our only link to the outside world, and having my right foot go numb (I’d already developed a limp from losing strength in my left leg, which is where most of my herniated disk symptoms manifested themselves - it started with excruciating pain across my left thigh, then moved down to my left calf, then to my left foot) was really scary. As soon as my right leg became involved, I scheduled the surgery. I should’ve had the surgery four months sooner, when my back surgeon suggested it, because the only thing that happened between December/January and April was that I had those stupidly expensive selective nerve root blocks that, at the very best, gave me a little bit of relief for a day or so. However, a friend of ours was able to avoid surgery because the nerve root blocks help her so much and for so long, so I figured I should give it a chance. Now, I know that since the first one wasn’t a miracle, there was no need for me to have the following two.
I do think it’s possible that if I was rich and didn’t have any financial worries, I might’ve been able avoid getting FMS. It’s thought to develop due to some sort of extreme stress on the body, and it could be either physical or emotional. The pain and surgery might’ve been enough to tip me over the edge, but maybe not if I hadn’t had to worry about the mortgage and medical bills and not being able to work. Regardless, I didn’t win MegaBucks, so it’s a moot point, all the stressors were there and these were the crapass cards I was dealt. The added stress of financial problems and people thinking I’m lying about being sick, only makes everything worse. So, living in the middle of nowhere (cheap nowhere) with just Leigh-Ann and the pets is very appealing. I’m pretty sick of being treated like I’ve made up my illness, that if I just got up and exercised and moved on with my life, I’d miraculously be cured. Yeah, some days I’m lucky to have enough energy to walk to the mailbox. Although, if I could get a job working from home (like the one I had for almost two years), that would relieve some of the financial stress and I know that would make me feel better. (employers, if you’re reading this, I can work fine from home, as long as I can work in the middle of the night, when I’m feeling my best)
In the “it would be funny if it wasn’t so sad” column - I’ve been accused of making up my FMS. I guess that Leigh-Ann’s pain and exhaustion looked like so much fun, that I decided to follow in her footsteps. It just took me 9 years to discover that that was my goal. Fibromyalgia is just like being gay - no one would choose either one, because of how other people treat you when they know. You’re either gross or a sinner for being gay and you’re a liar, lazy, or a drug seeker if you tell them you have FMS and take pain meds. Oooh boy, what fun!
Okay, here’s the snippet I promised you. If you have Fibromyalgia or Chronic Fatigue, you might want to go to the link I posted above, so you can read the whole study. For those of you who think that exercise is a magical cure for all of us, the snippet is enough.
A New Approach. The Pacific Fatigue Lab researchers realized, however, that while researchers may have been asking the right questions they were asking them in the wrong way. Many ME/CFS patients can, after all, get through a single ‘workout’ or a single day or single afternoon at work okay only to ‘crash’ afterwords. Until now, though, no one’s taken a close look at the ME/CFS patient’s ability to produce energy when they’re in a crash – an odd oversight in a disease whose symptoms are so tied to activity. (Indeed, study after study is showing that many variables which test out normal or near normal when ME/CFS patients are at rest are abnormal when their systems are put under stress). With the Pacific Fatigue Lab doing a new exercise testing regime, two exercise tests two days in a row and other tests (now known as the Stevens’ Protocol) they’ve given the post-exertional problems ME/CFS patients have reported for so many years a chance to show up – and they have. Their results are both profound and disturbing. About half of the ME/CFS patients they’ve tested do, in fact, ‘fail’ or significantly under perform in the first single exercise test – they cannot generate normal amounts of energy even when they’re ‘rested’. It’s the rest of the patients that are so intriguing, though. When you give these patients a second test a day later many of them will fail as well—and fail spectacularly. The amount of impairment the Lab see’s can be astonishing - some patients suffer as much as a 50% drop in their ability to produce energy the next day. Ms. Stevens spoke of a twenty-something man whose next day exercise tests were worse that those of a normal 85 year old. In a hospital setting his cardiopulmonary exercise profile would suggest he had heart failure. Revolutionary Findings - According to modern medical science this shouldn’t occur. For decades researchers have shown that human beings, under virtually all conditions and in a variety of disease states, can take an exercise test to exhaustion, recover and return the next day and score the same the next day. It doesn’t matter if she/he has heart failure or end-stage kidney disease – again and again researchers have shown that the human body – even in extremely poor health - has an amazing ability to quickly return to a baseline level of energy. That is until now. But it’s not just that chronic fatigue syndrome (ME/CFS) patients are failing these tests, it’s also the unique way they’re failing them that’s raising eyebrows. Decades of research have shown if you a take a female of W age and have her do X amount of exercise at Y heart rate she will exhibit Z levels of oxygen consumption. Researchers have believed these algorithms are set in stone but they’re not holding up in chronic fatigue syndrome (ME/CFS) patients. That they’re not suggests that something has gone awry in the basic physiological processes the body uses to produce energy in this disease.
Sunday, March 08, 2009
terribly early in the morning
Scary Fibromyalgia Study - Accelerated Brain Gray Matter Loss
Firstly, here’s a link to the full study, and then I’ll quote some of the easier to understand (for me, too) parts.
Fibromyalgia patients have abnormal brain gray matter loss These findings reveal for the first time that patients with fibromyalgia have brain gray matter atrophy. Interestingly, the normal age-related decrease in gray matter was accelerated in fibromyalgia patients and related to disease duration. The patients, who ranged from 27 to 61 years of age, demonstrated a yearly decrease in gray matter volume more than three times that of age-matched controls. The age-related decrease was even greater than that observed by Resnick et al. (2003) in a much older group of healthy adults (59–85 years), with the fibromyalgia patients in our study showing a decrease of 3.7 cm3/year and the older healthy subjects showing a decrease of 2.4 cm3/year. Although menopausal status can clearly have an effect on gray matter volume, the fact that more fibromyalgia patients than healthy controls in our sample were not cycling normally is not likely to account for our findings, because the postmenopausal fibromyalgia patients in our study had less gray matter than the postmenopausal healthy controls. The reduced gray matter was even observed in the two patients who were on HRT, which Erikson et al. (2005) showed increases gray matter volumes in postmenopausal women. Structural brain changes related to chronic pain and stress disorders Accumulating evidence now indicates that a number of chronic pain and stress-related disorders, including chronic low back pain, tension-type headache, chronic fatigue syndrome, and posttraumatic stress disorder, are characterized by gray matter reductions, although the specific regions involved differ among syndromes (Villarreal et al., 2002; Apkarian et al., 2004; Okada et al., 2004; de Lange et al., 2005; Schmidt-Wilcke et al., 2005; Chen et al., 2006). The extensive comorbidity among these disorders suggests that mechanistic similarities may underlie brain atrophy, whereas the regional differences in gray matter decline could explain differences in symptoms. Mechanisms and implications of gray matter loss A possible explanation for the decreased gray matter density in these disorders might be atrophy secondary to excitotoxicity and/or exposure to inflammation-related agents, such as cytokines (Apkarian et al., 2004). It is noteworthy that in fibromyalgia patients, gray matter loss occurred mainly in regions related to stress [parahippocampal gyrus (Herman et al., 2005)] and pain processing [cingulate, insular, and prefrontal cortices (Apkarian et al., 2005)], which might reflect their long-term experience of these symptoms. Because cingulate and prefrontal cortices are particularly implicated in pain modulation (Apkarian et al., 2005) (i.e., inhibition and facilitation of pain), structural changes in these systems could contribute to the maintenance of pain and symptom chronification in fibromyalgia. Furthermore, gray matter atrophy in areas such as parahippocampal and frontal cortices also appears consistent with cognitive deficits characteristic of fibromyalgia (Park et al., 2001). Longitudinal studies are indicated to determine whether the observed structural changes are the cause or the consequence of the disorder. If confirmed, these findings may provide a rationale for exploring neuroprotective approaches in fibromyalgia aimed at symptom treatment or indeed at their reversal.
But, but, but, I don’t want to lose my gray matter, although it’s probably already too late.
Sunday, February 11, 2007
terribly early in the morning
What It Feels Like To Be Me, On The Fatigue-Ridden Days
I woke up this afternoon at 3:45pm, after having gotten 12 hours of sleep. That’s pretty rare, but if my body wants to stay asleep twelve hours, it probably needs it. When I work up, I felt horrible. I could barely move, I was so sore. I took my meds - Oxycontin, Oxycodone, Neurontin, and Protonix. I started to feel okay after maybe 90 minutes. I felt pretty decent after about two hours. We sat down at around 7p to watched the taped Leafs game. I was doing a little work on the computer while the game was on. We had dinner at 11p. Right after dinner, I was totally exhausted. Like “I had the flu” exhausted. If like me, you’re fantastic at basic math (haha), you’ll know that that’s about eight hours of being up and around…and I’m ready for bed. Right now, I’m typing this with my head on my knee, with my eyes shut. My fingers are working, but the rest of me is too tired to sit up straight.
I went back to the pain management doctor on Friday for a checkup. He got the results of my bloodwork - I’m anemic and my bloodwork shows that I have inflammation somewhere. He ordered more bloodwork to get at the specifics. He said that it could be related to my bladder issue though. Also, I now officially have the diagnosis of fibromyalgia. Since I already knew that on my own, I guess the good news is that the tests show that I don’t have Lupus or Rheumatoid Arthritis. I never thought I had RA because I don’t really have the symptoms, I don’t think. I’m relieved that I don’t have Lupus, although it remains to be seen if fibromyalgia is any better, practically speaking. In the long run, yes, it’s much better to have FMS. Right now, it seems similar to some of the Lupus symptoms…and now that I’ve read about them, I’m glad Lupus has been ruled out.
Okay, I’m too tired to post. There’s so much I want to rant about, but these days I’m having to save most of my ranting energy for either working…or getting up and going to the bathroom. I hope my appointment on Monday with the urologist takes care of the peeing issue for me. It’s been getting worse and it’s really stressing me out, man. If that gets fixed, hopefully some of the anxiety that goes along with it will disappear, which should help my fibromyalgia a lot.
One thing that I’ve been thinking about lately - when did I actually get fibromyalgia? This all seems fairly new. I’ve been in pain before; carpal tunnel, back pain, etc. But I’ve never had the overwhelming fatigue or the all over pain until fairly recently. I’ve been thinking that my surgery actually was the last straw that led to the fibromyalgia. It fits the criteria and it fits the timing. I think it’s pretty sucky to get surgery that fixes one thing and gives you another. I protest…tiredly. I know that my surgery was definitely successful in fixing the specific pain that I had from the herniated disc. There was no mistaking that pain. This pain is just an icky all over kind of pain. The only severe pain I have that has a specific location all the time is the pain in my left hip, which I usually get when we’re grocery shopping or out doing something. It’s all so weird. And asking for extra pain meds makes me feel like a drug addict, but honestly, I’d be a drug addict that got absolutely no joy or high from my meds, which kind of makes using them for that purpose moot. When I take the meds, I get three possible outcomes: one, my pain goes away; two, I feel nauseous; or three, nothing. The high…never there. I did get a little stoned from my Lyrica when I was taking it, which is one of the common side-effects. But, it definitely made me feel better in other ways too. It’s too bad it was so expensive and that my insurance doesn’t cover it. 90 pills - $199.99 (I was prescribed 2/day) and 270 pills - $599.89 (don’t you like that it’s only .89 versus the .99 in the smaller number?) It is interesting that no matter what the dosage, from 25mg pills to 300mg pills, the price is the same. That’s nice for people who have to have their dosage upped. Well, if I make a ton of money, I’ll tell the doctor to prescribe whatever he wants, although Lyrica makes people gain weight too. I like the weight loss that is the result of feeling crappy and stressed out.
I really should set up another blog, or blog on Leigh-Ann’s Tired Girls blog when I’m whining about feeling crappy. I’m sure I’ve been a big disappointment to the huge number of people who came here in the past few days looking for information about Anna Nicole’s mother. I wrote one “Idiot of the Day” entry about her mom’s appearance on Nancy Grace a few months ago. My traffic tripled on Friday because of Anna Nicole’s weird and sudden death. Poor Anna Nicole - what a sad strange life she had. And here, to get stuck in your head, the theme song to Anna Nicole’s reality show. It shouldn’t just be stuck in my head.
