Friday, January 26, 2007

But does HGH work for fibromyalgia?

Here’s an article about a recent study which seems to show that HGH isn’t particular effective as being a fountain of youth for healthy adults.  However, the study didn’t use HGH to treat any less-than-healthy people, so there’s still hope it may be a useful aid in treating fibromyalgia:  Growth hormone not anti-aging solution

Posted by Leigh-Ann on 01/26 at 10:29 AM
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Sunday, January 21, 2007

I’m a Las Vegas Loser

As of today, I am a Las Vegas Loser.  Not the kind who comes to town to say goodbye to their paycheck, but the kind who signed up to participate in the Las Vegas Review Journal’s “weight-loss contest”.  In fairness, it’s not a contest as much as it’s a group effort to lose weight (I wish someone else could do my share!), but there are small prizes along the way for people who are meeting their weight-loss goals.  There are about 112 people involved (I think that’s what was said), and today we had our first official weigh-in, and we posed for a group photo.  The event will run for one year.

I’m not exactly sure what compelled me to write in to the newspaper to volunteer.  I’ve wanted to lose weight for a few years now (I’ve gained about 30 lbs. in the past four years), and I think the casual, experimental feel of this event appealed to me.  There are people of all ages and from all walks of life involved; we can follow any diet and/or exercise plan that we wish to achieve our goal.  There are tentative plans for a few guest speakers to talk to the group, but other than our required monthly weigh-ins, we’re really on our own.  I’ve always been a bit of loner and have never done well working under a buddy system, so this type of setup is perfect for my personality.

I have no idea how well or how poorly I’ll do.  My goal is to weigh 135 in one year.  Today, after getting home from the weigh-in and photo shoot, I was so exhausted that I took an oxycontin, an oxycodone, and a Skelaxin, and I’m still in pain, as well as suffering from extreme fatigue (I’m writing this entry from bed, on a laptop).  I have visions of daily walks on the treadmill, but this illness is so unpredictable—that treadmill walk may leave me so incapacitated that I’m unable to work, and that will be unacceptable.  I want to try to lose weight by exercising rather than changing my diet, but I’m not sure how much exercise I can tolerate.  Sometimes a trip to the grocery store is all it takes to send me back to bed for the day.  I know that increasing my strength and endurance would improve my quality of life, though.  This process will be a lot of trial and error.

My preferred weight-loss plan has always been Weight Watchers, so that’s what I’ll defer to if I decide to start formally planning snacks and meals.  I love to cook, but that’s another taxing activity—will I be able to cook every day and still get my paid work done?  Will my medications allow me to lose any weight?  All these things and more will be answered in the next twelve months.  I really, really want to work hard to achieve my goals, but if I can’t reach the goal, I’ll get satisfaction from knowing I did all that my body will allow.

Posted by Leigh-Ann on 01/21 at 10:21 AM
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Tuesday, January 16, 2007

The co-founder of Petsmart has CFS

I go around assuming that successful people must be healthy people, then I’m proven wrong by this article: Chronic fatigue drug in trial stage.  The article is primarily about Michael Manson, the co-founder of PetSmart, who’s suffered with CFS for almost 20 years, as has his business partner.  Who knew?!  Manson was part of the recent trial that tested Valcyte on CFS sufferers, and he feels just about cured.  The whole thing is very exciting, and I’d love to get in on a trial in my area.  I checked out the price of the Valcyte medication and six months worth would cost over $5000, so I’d be happy to exchange their meds for my voluntary guinea pig-ness.

Posted by Leigh-Ann on 01/16 at 01:54 PM
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Monday, January 15, 2007

Report from my last appointment

I saw the pain management doctor on Wednesday, and he prescribed 5mg of oxycodone for me to take as needed for break-through pain.  So far I’ve only taken it twice, both pills on the same day, but it’s nice to know I have it.  He wanted to prescribe Percocet, but I was hesitant to take the acetaminophen if I didn’t truly need it.  With the oxycodone, I can add-on something like ibuprofen if I feel it’s necessary, and I’m better able to keep track of what I’m taking.  The doctor also offered to increase my oxycontin to every 8 hours, but that seemed excessive, and I didn’t want to deal with an increase in side-effects.

Here’s my current FMS medication regimen:

1 x 10mg Oxycodone CR every 12 hours
2 x 20mg Cymbalta every 24 hours
1 x 50mg Vistaril for nausea and itching
1 x 1mg Ativan for sleep before bed
1 or 2 x 5mg Oxycodone as needed (not often)
..,plus my thyroid meds, and an acid-reducer a couple of times per week.  Oh, and Colace.  Lots and lots of Colace!

I’ve taken Provigil just once, and it doesn’t seem to be necessary if I’ve got my pain under control.  With the pain managed, I’m able to stay quite focused on work, and I feel relatively energetic.  At most, I can really work for about six hours straight, but I can slowly pick away at other projects when I’m not feeling very well.  I still have one day a week, at least, when I feel like hell and want to cry at the thought of climbing stairs, but at least I have some decent days in-between.  I’d say that in one week I have two good days, three so-so days, one kinda crummy day, and one super-crappy day.  Those aren’t official terminology :)  I’ve got so many part-time freelance jobs that there’s always work to be done, but I can usually do a little something almost every day.  If I make sure I take both an Ativan and a pain pill before bed, it helps guarantee that I’ll feel slightly human when I wake up in the morning, although I still have trouble sleeping for more than seven hours.

I’m back at school via distance learning, taking veterinary technology.  I should have it all under control until the end of the second semester, when I have to do 200 or so hours of practical work in a clinic, and that will separate the fibromyalgia patients from the students.  That’s when I’ll really find out if I could work full-time at such a demanding job.  Even if I can’t work full-time, I’d have the option of working part-time after graduation, or even working at home doing writing as a “licensed professional”.  I’ve also been fantasizing about going to veterinary school at UC Davis… I’ve got lists of my prerequisites, and I’ve checked off what I’ve already got credits in.  I don’t think I could hack it because it would require moving and lots of money, but it’s fun to dream about.  I’m signing up for a distance learning physics class at the University of Minnesota to meet one of the prereqs I don’t think I have, and to add to my growing list of institutes of higher learning where I’ve earned at least three credit hours.  Some people collect Hummel figurines, I collect transcripts.

Posted by Leigh-Ann on 01/15 at 10:34 AM
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FMS and CFS news roundup for January

I’ve got a mailbox full of fascinating news stories about CFS and FMS treatments, and while I’d love to post them all, it would take forever!  Instead, I’ll post links to the most interesting ones here, and you can check out whatever interests you.  Happy reading!

Posted by Leigh-Ann on 01/15 at 05:10 AM
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Herpes drug may help with chronic fatigue

This story is pretty exciting.  I’ve never been diagnosed with CFS officially, but I think it’s pretty much tied in with FMS.

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STANFORD, Calif., Jan. 9 (UPI) A U.S. study suggests valganciclovir, a drug often used in treating diseases caused by human herpes viruses, may help with chronic fatigue syndrome.  The researchers said they treated 25 patients during the last three years and 21 have responded with significant improvement that was sustained even after going off the medication at the end of the treatment regimen, which usually lasts six months.  The first patient has now been off the drug for almost three years and has had no relapses, according to Dr. Jose Montoya and postdoctoral scholar Andreas Kogelnik of the Stanford University School of Medicine. Valganciclovir is normally used against diseases caused by viruses in the herpes family, including cytomegalovirus, Epstein-Barr virus and human herpes virus-6.  The findings have been published in the Journal of Clinical Virology and will be presented at the biannual meeting of the International Association for chronic fatigue syndrome in Fort Lauderdale, Fla. Copyright 2007 by United Press International

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This story is related to the one above, but mentions the possibility of clinical trials.  Keep an eye on places like CenterWatch.com and ClinicalTrials.com and they should list when trials start recruiting.
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Medical School researchers have identified a promising drug that may prove useful in relieving chronic fatigue syndrome.


Associate Prof. Jose Montoya and postdoctoral student Andreas Kogelnik have seen 21 of the 25 patients they have treated over the past three years with drug valganciclovir improve significantly. Even better, the improvement has been sustained after patients cycled off the drug, an antiviral often used in treating diseases like herpes.

“This study is small and preliminary, but potentially very important,” said Anthony Komaroff, a Harvard Medical School Professor. “If a randomized trial confirmed the value of this therapy for patients like the ones studied here, it would be an important landmark in the treatment of this illness.”

Roche Pharmaceutical has granted Montoya $1.3 million to continue research into the drug starting this quarter. Chronic fatigue syndrome affects one million people worldwide.

The Stanford Daily

Posted by Leigh-Ann on 01/15 at 04:48 AM
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Wednesday, January 10, 2007

Back to the doctor (heigh ho)

I’m off to the physiatrist tomorrow—it will be my third appointment.  I’m unfortunately going to be forced to tell him that I’ve been feeling substantially worse since my last visit.  At first I was better, perhaps because I began to take my oxycondone every 12 hours, but for the past four weeks or so I’ve felt absolutely miserable.  I’ve had days where I can barely climb the stairs, days where I can’t concentrate and get no work done, and days when I just want to curl up into a ball and give in.  Today was one of the latter days, although I’m feeling improved after taking about 15mg of oxycodone plus 400mg of ibuprofen.  I hate to think that I might have to take that much medication on a regular basis, but my lower dose of pain meds isn’t cutting it.  Part of my problem is definitely stress-related, but it’s hard to not be stressed when you’re in pain.

Posted by Leigh-Ann on 01/10 at 05:29 AM
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Tuesday, January 02, 2007

Happy New Year

Happy New Year to all the tired girls, allergic girls, girls in pain, and everyone else in-between—may we all find comfort in the upcoming months!

On a totally unrelated note, I wanted to post a link to AGLOCO, a new “get paid to surf” program.  It’s in beta testing right now, but when available you’ll be able to earn money for a few hours of surfing the Internet through a propietary toolbar.  It’s not a lot of money, but if the link gets out and around in the chronic pain community, it could help us all earn a bit of extra cash to pay for exciting things like prescription medication.  I can’t promise it’s not a scam, and I always take these types of ventures with a grain of salt, but the company is run by reputable people who’ve been in the Internet business for a long time, so I’ll hope for their success.  Get paid to browse the Internet.

Posted by Leigh-Ann on 01/02 at 12:11 PM
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Saturday, December 30, 2006

FMS and CFS Conference

The 8th International Association for Chronic Fatigue Syndrome Conference will be held in a couple of weeks in Florida, and it will concentrate on issues related to CFS and FMS.  There’s both a patient conference and a clinical conference—I wish I had the opportunity to attend the former.  Being in a huge group of CFS/FMS sufferers might remind me that I’m not as badly off as many others, and it would also be a good chance to network about doctors and treatments.  If you’re in the area and want information about attending, check out 8th International IACFS Conference, January 10 - 12, 2007.

Posted by Leigh-Ann on 12/30 at 12:35 PM
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Friday, December 29, 2006

If I’m not posting…

...it’s just because I have nothing to say :)

Seriously, I feel like such a bore if I just moan and complain, although this is an FMS blog so I suppose that’s to be expected.  I have good days and bad days.  On my good days (for example, Dec. 23rd and 24th), I feel energetic and happy and pain-free.  On my bad days (every day since), I’m exhausted, feel like my limbs are too heavy to move, and my pain meds work just marginally.  I’ve had to start supplementing the oxycontin with ibuprofen to make it last longer, and to make it work better.  That’s a far cry from when I took OC a few years ago, and it eradicated all my pain completely.  Now I’m lucky to get a window of a few hours without pain (those are very welcomed!).  I’m sleeping very well at night, but after I exert myself, my recovery time is getting longer and longer.  I don’t know if it’s because I’m getting older, or because of the cold weather, or because of holiday stress, or because my illness is just getting worse.  I’d prefer it if isn’t the latter.

My unique FMS pain spot is in the soles of my feet—my heels and the balls of my feet ache like they’re bruised.  It’s not plantar fasciitis pain.  I don’t think I’ve ever had a moment without foot pain over the past year.

In any case, this is just a whiny, “yes, I’m still around” post.  I had a nice holiday, although life getting back to normal seems to be what my body likes best.

Posted by Leigh-Ann on 12/29 at 02:49 PM
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Thursday, November 30, 2006

The Pain from Fibromyalgia Is Real, Researchers Say

Here’s an interesting article which was released as a press release today.  It’s a summary of a study from Current Pain and Headache Reports, Dec. 2006, pp. 403-7.  Bet you didn’t know there was such a periodical, huh?!

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Fibromyalgia often has been misdiagnosed as arthritis or even a psychological issue. Increasingly, though, the scientific knowledge about fibromyalgia is growing, and a new paper from the University of Michigan Health System says there are “overwhelming data” that the condition is real, is characterized by a lower pain threshold and is associated with genetic factors that can make some people more likely to develop fibromyalgia.

The review paper, in the December issue of the journal Current Pain and Headache Reports, cites recent studies involving pain, genetics, brain activity and more. The paper’s authors hope these findings will lead to a better understanding and acceptance of fibromyalgia and related conditions.

“It is time for us to move past the rhetoric about whether these conditions are real, and take these patients seriously as we endeavor to learn more about the causes and most effective treatments for these disorders,” says Richard E. Harris, Ph.D., research investigator in the Division of Rheumatology at the U-M Medical School’s Department of Internal Medicine and a researcher at the U-M Health System’s Chronic Pain and Fatigue Research Center.

A growing amount of research related to the neurobiology of this condition supports the notion that the pain of fibromyalgia is real. Studies at U-M and elsewhere using two neuroimaging techniques – functional magnetic resonance imaging (fMRI) and single photon emission computed tomography (SPECT) – indicate there is a difference between patients with and without fibromyalgia.

“In people without pain, these structures encode pain sensations normally. In people with fibromyalgia, the neural activity increased,” says Daniel J. Clauw, M.D., director of the U-M Chronic Pain and Fatigue Research Center and professor of rheumatology at the U-M Medical School, and an author of the new paper. “These studies indicate that fibromyalgia patients have abnormalities within their central brain structures.”

In a 2003 paper in the journal Science, a U-M team reported that a small variation in the gene that encodes the enzyme called catechol-O-methyl transferase, or COMT, made a significant difference in the pain tolerance, and pain-related emotions and feelings, of healthy volunteers. Researchers also have found that individual mutations in the COMT gene are related to the future development of temporomandibular joint disorder, also known as TMD or TMJ, a condition related to fibromyalgia.

Together, these studies about COMT and numerous studies with animals suggest that pain sensitivity is determined at least in part by a person’s genetic makeup, Clauw says.

The authors note that there are some legitimate areas of debate regarding fibromyalgia, including disagreements about how precisely it should be defined and whether people with the condition deserve compensation. But none of those disagreements should detract from the acceptance of it as a condition causing real pain, they say.

Posted by Leigh-Ann on 11/30 at 01:15 PM
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Monday, November 27, 2006

Finally, something I can send to my mother

Nov. 24 (UPI)—U.S. health officials have initiated a campaign to erase the perception people with chronic fatigue syndrome are malingerers.  The national Centers for Disease Control and Prevention in Atlanta opened its information campaign this month to help educate patients and doctors that chronic fatigue syndrome is a mysterious but serious disease sometimes triggered by a viral infection with other unknown factors.

Nancy Klimas, a University of Miami School of Medicine clinician-researcher visiting the CDC during its campaign kickoff, said chronic fatigue syndrome is poorly named, based on 20 years of research. “If it were called chronic neuroinflammatory disease, then people would get it,” Klimas said. “Up until now nobody’s been willing to change the name, but now there’s proof” that inflammation occurs in the brain.

The CDC estimates CFS affects at least 1 million people in the United States. Women are affected at about four times the rate as men, and non-white women are affected at a rate greater than white women. Symptoms include exhaustion, joint pain, sleep problems, impaired memory and inability to concentrate.

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In fairness to my mother, she’s never accused me of being lazy… I’m the one who feels I’m lazy, and I worry she might think it.  I sometimes wonder if things go unsaid.

Posted by Leigh-Ann on 11/27 at 12:45 PM
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The feds want to give you something for free

The Federal Government (via the Federal Citizen Information Center), offers a free pamphlet called “Difficult Diagnoses”, for people who have aches and pains yet don’t have something simple and ordinary, like arthritis.  This booklet discusses other possible diagnoses, including fibromyalgia and lupus, and the booklet might be a good way to open a dialogue with your doctor if you’re concerned that your aches and pains “just aren’t right”.  You can order free copies of the pamphlet here: Difficult Diagnoses.

Posted by Leigh-Ann on 11/27 at 12:34 PM
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Using Lyrica to fight FMS pain

Here’s a fairly new article from WebMD:  Lyrica May Relieve Fibromyalgia Pain.  To summarize, The seizure drug Lyrica may offer extended pain relief for people with fibromyalgia.  That’s according to new research presented at the 2006 annual meeting of the American College of Rheumatology (click the link to read the entire article if you want to know more).  Interestingly, we think Flippy has FMS, and when she was given Lyrica as treatment for her back pain (pre-surgery), she found that Lyrica made a huge improvement in her overall comfort level and sense of well-being.  Unfortunately, her insurance company refused to cover Lyrica for pain treatment, and it was so expensive, we just couldn’t afford to keep her on it for longer than about six weeks.  She also seemed to develop a tolerance to it quite quickly, so taking it would have become even more expensive over time.  Lyrica is probably most-easily compared to Neurontin, yet it’s also a lot like the SSRI/SNRI medications, so it can reduce depression but also should be tapered and not quit “cold turkey”.  In any case, it’s nice to know that someone is thinking of us at their conventions and during their studies!

Posted by Leigh-Ann on 11/27 at 12:24 PM
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Sunday, November 26, 2006

Annoying legalities

I had my second appointment with Dr. Joseph Gnoyski (fibromyalgia/chronic pain specialist) this past Tuesday, and was pleased.  Once again the office was perfectly on time (even though the waiting room was a bit crowded), and the office had asked that I prepare a “follow-up” sheet in advance of my visit, outlining how I was feeling, mentioning meds which needed refills, and listing any issues I needed to discuss with the doctor.  I really like how organized they are, and how they seem to want to listen to what I have to say!  I did have to do the “dice roll” for random urine testing for illegal drugs, but I rolled a nine and was cleared for this visit.  I guess I should ask what they’re checking for—I know I’m only taking what I’ve been prescribed, but I’m curious out what drugs they specifically think are problematic.

I’ve found that 10 mg of oyxcontin just hasn’t been controlling my pain very well, so Dr. Gnoyski requested that I start to take 10mg every 12 hours instead of every 24.  He said that was the way OC seemed to work best—it should be in the body consistently.  He wrote me a prescription for 120 pills, enough to carry me for two months until my next appointment.

We took the prescription to our regular pharmacy on Tuesday afternoon.  Everyone who works there knows us—we get scrips filled all the time, and we also do our grocery shopping at the store, so it’s not as if we’re unfamiliar faces.  The pharmacy tech looked at my prescription and said they didn’t have enough pills in stock to fill it.  I asked if they could just give me what they had in stock, and let me pick up the rest later, but they aren’t allowed to do that.  I can have all or nothing.  She said they’d order the pills, but she doesn’t expect them to be in until next Tuesday at the earliest.  They have to be special-ordered and hand-delivered or some such nonsense.  The oxycontin I had on hand ran out yesterday, so now I’ve got no meds until next week.  I don’t know who to be angry at—am I being inconvenienced by a federal law or a state law?  Or, is it just a state pharmacy board regulation?  How crazy is it that the pharmacy MUST dispense ALL my pills at the same time, and must deny me even 4 or 5 pills to get me through to the expected delivery date?  Their only suggestion was that I try another store (but I have a feeling the pharmacies are only “allowed” to stock a limited number of oxycontin pills at one time), or to get the doctor’s office to write me a new prescription.  That prescription would have to be picked up in person, of course, because they aren’t allowed to be phoned in.  I think it’s all really, really stupid.

The doctor warns me to be careful while picking up my oxycontin prescription, because some of his patients have been robbed outside the pharmacies and their pills stolen.  Thanks to the illogical laws here, if anyone wants to try to rob me next week, they’ll get their hands on 120 pills instead of just the 60 they would get if I was allowed to pick up my pills on two separate dates.  As usual, laws surrounding prescription and OTC drugs seem to always be about inconvenience for law-abiding people.  I also now have to come up with twice as much money for my cash-pay prescription, because I can’t stretch out my payment over two months.  It’s frustrating, yet these pills eradicate my pain and give me my life back, so I’m willing to jump through hoops of red tape to get them.  I just wish I didn’t have to.  It’s like I’m being punished for needing them.

I’ve wanted to post more, but have been bogged down by a slew of new part-time jobs (thank goodness for mental clarity!), and by participating in NaBloPoMo on The Blog Pound.  All this writing is good practice, but it doesn’t allow me much free time.  At least I’ve had the energy and ability to stay focused and to get the jobs done—my new doctor has made life a lot more enjoyable than it had been.

Posted by Leigh-Ann on 11/26 at 11:12 AM
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