Wednesday, September 23, 2009

Fibromylagia Study: It's Not All In Our Minds, It's In Our Neurons

Every time I read a report of another medical study, like this article... http://in.reuters.com/article/health/idINTRE58L40T20090922 ...hope wells up and I scan, looking for news of a breakthrough in understanding the causes, and perhaps even finding a cure---hell, even a reliable treatment would be nice---for Fibromylagia or ME/Chronic Fatigue Syndrome. So far, no luck, but at least this one was a blind study, using controls, confirming identifiable neurological abnormalities common to fibromyalgia patients in far higher percentages than in the control group.

I'm linking it here, and I'll be bringing it to the attention of the doctor with the pain management group at Kaiser, because just three weeks ago yesterday, he told me there were no such studies that he knew of. This article doesn't change much, but it's a scrap I'll cherish. Now when I say that I've read that there are measurable neurological manifestations of this disease, I'll have this one more scrap of evidence.

Fibromyalgia victims, tell your doctors. Let's keep them up to date.

Sunday, September 20, 2009

Herbs for CFS/ME

I've just come across this list of possibly helpful herbs. Half of these, Hazel and I have already tried. If you have any experience with any of them, let me know. The full list of ten herbs is here: http://chronic-fatigue-syndrome.suite101.com/article.cfm/best_herbs_for_cfsme

The ones we spent months taking and saw no improvement from are: Astragalus, Eleuthero, Ginkgo Biloba, Ginseng, Rhodiola.

Always hoping for anything that might help.

CDC's Got Goals: 5-Year Strategic Plan

I don't know what it will mean for us sufferers from CFS and ME, but the CDC has published its draft 5-year Strategic Plan for us. If anyone is able to translate from the bureaucratic, let me know what it says. On surface at least, Goal III, Milestone 4 sounds good to me: "Move CFS into the mainstream of public health concerns."

Check it out here: http://www.cdc.gov/cfs/draft_5yr_research_plan.htm

Nortriptyline Machine

I'm off that stuff. Let's see how the machine runs sans Nortriptyline.

I waited and kept taking the med, hoping the NP would return my call, then went off it on my own, and finally got a hold of her by calling again and being transferred through a hospital in-house line. Turns out she had been on vacation and it took 3 days for her to catch up on her desk full of work and her meetings, but, "I got your message and it's on my list of call-backs." But, "yes," she said, "some patients experience the opposite of what the medication is supposed to do, and get more wakeful instead of drowsy." So there's a lesson or two: if the med is too weird, don't wait for the docs to call you back. Trust yourself, go off that weird med. And if the docs don't call back, keep calling them. Squeak, wheel; squeak!

I had hoped I was just going through an adjustment period and the sleep thing would even out. I was enjoying increased energy and decreased pain, but as night after night went by with 4 or 5 hours of sleep, I was less and less able to do anything productive with the energy. By day I knocked about doing scattered chores, wishing I could focus clearly on the more urgent needs piled in my paperwork inbox, and particularly on the search for housing. By night I tossed and turned, practiced every relaxation technique I could, and still lay awake with my wheels uselessly spinning. Spin, wheels; spin.

So I went off the Nortriptyline on my own initiative, after having taken it for one week. The NP wrote an Rx for Gabapentin which according to the Mayo "is sometimes helpful in reducing fibromyalgia symptoms," but its original purpose was to control seizures. Those seizure meds can be weird-and-a-half, so I'll do my research before I take it. I hope I can get enough clarity to read up on it soon. Engage, gears; engage.

After going off Nortriptyline I continued to have fragmented sleep for a few more nights, though this could have to do with my PMS, a really bad endometriosis flare-up, perhaps a touch of flu, Fibro/ME flare-up... who knows? I spent several days hitting 8's and 9's on the pain scale. Release the pressure in a steam whistle cadenza, up that scale: Do, re, mi, fa, so, la, ti, ouch.

Day 5 off Nortriptyline, and last night I got back to sleep enough times to patch together a fairly restful night. After a week with no sleep and no brains, and four days of extra pain, do I have some brain capacity available for tough tasks? I look at my in-box overflow. I think about my name on the NP's list of calls to return, and hope those other names on the list got their calls returned. I know how it is to return to work after a vacation or illness and have a pile of work waiting. And I know how it is to have only a couple of hours a day, at best, to catch up on things. Not only that. I know how it is for the sickdays to recur, recur over the course of two years, and the pile to keep piling. Always the overflowing in-box, and never caught up. All I can do, is a very little. Remember the advice of Dr. Hain. Do less, think less, eat less, poop less. Nortriptyline jacked up the pace without alleviating the inflammation. Rev up the engine without replacing the worn out gaskets and where you going to be? Side of the road.

If I'm able to pull back into traffic now, it will be in the slow lane. Pain Doc told me when he prescribed Nortriptyline, "The idea is, it will make you drowsy at night and give you more energy in the day. More energy in the day, you get more active, that gets you tired out, and you sleep at night." I'm sure it works that way for some people, but for me it was wasted fuel. No more Nortriptyline for this machine.

Sunday, September 13, 2009

Nortriptyline, Butterbur, Feverfew, oh my.

Old info below. Seriously, for better information go to: http://itsonlymeitsnotmymind.blogspot.com/2012/03/how-not-to-die-and-other-useful.html

Just a quick note about herbs and meds.

A few days ago I started taking Nortryptiline, prescribed by the doctor at the pain management clinic. The first night, I had a ton of trouble getting to sleep. Odd! The med was supposed to make me drowsy, but it was sending me beyond restless to hyper. I tossed and turned, feeling jangled and agitated. After a while I slept shallowly, then woke, slept and had agitated dreams, woke, slept.

I stuck with the medicine, thinking this might just be an initial effect that would wear off. It's been five days now. Still getting less sleep, and more restless sleep, than before. On the other hand, I've also had less pain and more energy during the day. Not pain free, not normal energy. A slight but noticeable improvement. Will the sleep thing settle down? Should I go up to double the dose the second week, as scheduled? I'll be calling the doctor tomorrow to ask.

Meanwhile, a couple of days after I started the Nortriptyline, my family doctor said it would be fine for me to take too the herbs and supplements that the pediatric neurologist prescribed for Hazel. So I'm taking Feverfew, Butterbur, B2 and Magnesium as well as D and Calcium Citrate. Maybe some of my improvement is due to those supplements. It would be nice if I could get off the tricyclic stuff and use just the herbs and vites. However, it's unlikely that these slower-acting measures would already be causing noticeable improvement. On the other hand, Hazel, who is taking the supplements but not the Nortriptyline, has been complaining less often of severe pain, has been able to write and do computer programming, and has had improved appetite.

For the benefit of other ME/CFS/Fibro sufferers: Your doctors might not be aware that we tend to have high sensitivity to medicines. Always start with the lowest possible dose. Tricyclic antidepressants have been known to help some ME/CFS/Fibro patients fight the pain and insomnia. If your doctor prescribes and you decide to try, just remember, you probably will not need or tolerate the higher doses that would be prescribed for depression patients.

Feverfew and Butterbur are herbs that have been tested---so well tested that even a Kaiser Permanente doctor is allowed to suggest them---and proven helpful for sufferers of migraine and chronic headache. The hope is that these will reduce inflammation associated with ME. Depending on the length of time you've been in chronic pain, it may take a couple of months or more for the effects to be noticeable, as your brain has to lay down some new neural pathways and let some old pain-route ones close. Or at least that's what the pediatric neurologist told us.

Hang in there. That's what we're doing. And hey, drop me a comment and let me know you're reading, as Hegge, a fellow ME fighter from Sweden, did.

Edited a couple years later to add: I got off the Nortriptyline after it became clear that I had "an atypical reaction" to it.  I think my reaction may have been typical for people who have ME and not depression. I won't be trying any more psych meds. I'll try to post soon about the things that have helped, the things that haven't, and what I might consider trying next. ~ Creek, 24 Feb 2012

E2A: I've written that promised update. Please check it out here. Thanks! ~ Creek, 12 March 2012

Wednesday, September 9, 2009

Chronic Pain Management Assessment

I had been looking forward to this for about 6 months. Finally, yesterday, I had my appointment with the Chronic Pain team. The physical therapist, psychologist, counselor and nurse all seem like caring and well informed people, so I've still got a lot of hope, but also a little disappointment.

For one thing, I had hoped that the members of the team would be familiar with and receptive to the Canadian and Australian descriptions of ME. Instead, I received another definition of the difference between Chronic Fatigue and Fibromyalgia. More than one doctor has stated to me authoritatively that they're pretty much the same thing, or that Chronic Fatigue can feature pains as well as exhaustion so it gets confused with Fibro. This pain management doc's take on it was that Chronic Fatigue does not involve any pain whatsoever and therefor, since I'm experiencing pain, it's Fibro. He tested the classic pressure points for Fibro and sure enough I felt pain in 11 out of the 18, which he said means it is Fibromyalgia. But what if I had felt pain in only 6 or 7? Then it would not be Fibromyalgia OR Chronic Fatigue. And what about the chest pain which is my most intense and recurring pain, but is not included in those pressure points?

I appreciate his stance that the name is not important: what's important is what it's doing to me. But he also said it's not important why it's doing it. We'll be treating the symptoms, it seems, with coping measures. That's very valuable in its way. But what if the research on ME is correct and there is indeed inflammation of the brain and hypotension causing all this pain? And what if Feverfew could indeed reduce that inflammation and perhaps increased salt would be advisable for the hypotension? I hope that the team will be open to discussing these things, but at the first visit it seemed not. They asked me if I understood what my diagnosis was and why I felt pain, and when I went to the physiological roots as I understand them, which do seem to me to explain my symptoms, I was cut off. Well, they had a lot to get through, and although we had three and a half hours to work with, there was no time to spare for in-depth discussion.

I do appreciate the focus on symptoms over disease names. The intention is a more holistic approach. The team is very much devoted to working with mind-body connections and supporting whole patients to relieve pain. But if there's an explanation why I can't climb stairs without pain and dizziness we could treat causes... if... but... if... Ah, it's all ifs and buts, so why not try their way, I reason. I'll give it a fair trial. This was only the first day. I have 11 weeks of group classes ahead.

They're starting me on the same med that didn't work for Hazel. I'm not Hazel, though. Maybe Nortriptyline will work for me. As in Hazel's case, it's being prescribed for sleep disturbances. First night on it, I'm having the worst insomnia I've had in weeks. I'll give it a fair trial, however, if only to show that I'm cooperative and open to pharmaceutical options. And I'm tired. I don't want to argue, I want to cooperate and receive support. But I'm also going to ask if herbs are an option for me.

It's not that I think all herbs are better than all pharmaceuticals. Ironically, the yucky feeling I'm having tonight reminds me of the herb Valerian, which doesn't help me sleep but just makes me feel woozy and dizzy.

We're all guinea pigs. As long as this condition is unexplained and incurable we sufferers are the lab animals testing the latest theories. They say Nortriptyline works for many sufferers of ME/CFS and Fibromyalgia. I'll keep you posted on my reactions to the drug.

I'd love to be going to the acupuncture clinic that helped me feel so well a little over a year ago. I'd love to be seen by a Chinese herbalist, or a really good homeopath. I'd love to explore any number of alternatives, but this pain management clinic is the alternative available to me at this time, free, and within reasonable travel distance. If the effort ends up being more exhausting than relieving, I can drop it. And I'd love for the Nortriptyline to work, after all.

Monday, September 7, 2009

Miracles: may they become commonplace.

It may not last, but wouldn't it be nice if the end of August turns out, in future retrospect, to have been a breakthrough point? Of course, last night's adventure, Dog Meets Skunk, could indicate a reversal. But let us not think of that at present. Let us remember the happy ending of August.

First miracle: I started seeing Dr. Tractor, whose PhD in psychology doesn't prevent her recognizing the physical and practical roots of psychological distress. Aware that I need to find immediate shelter for myself and two kids, that my county caseworker is out of the picture with her own long illness (may she be well soon) and that I was getting no assistance from any government or private agency whose mission it was to assist the homeless and disabled, Dr. Tractor rolled up her sleeves, or rolled out on her treads, and dug in. The first tangible result is that she snagged me an application for a disabled bus pass. Maybe not overwhelmingly difficult, but a solid practical help with something I hadn't been able to do, simple though it might seem. And that bus pass application is symbolic to me of something more: there's now someone in my life who is willing to make it her job to help me negotiate the piles of paperwork and tangles of agencies. Wise Dr. Tractor realizes that homelessness causes stress which exacerbates illness whereupon pain increases isolation and hence depression and disability. She's stepping in and helping break that cycle. Talk therapy is all very well, but I'm really appreciating less talk and more action.

Second miracle: Butterfly's generosity. She's a joy just to talk to: a slight and sweet-spoken elder with her white hair in a wispy bun, fairytale style, atop her head, and her knowledge of every native moth and butterfly and their food plants, and those plants' neighbors, and her caring worldview extending to farthest wars and closest local action. She'll almost always only get gas at one station though it's miles away, waiting to gas up until she's heading that direction, because she supports their efforts to minimize the environmental impacts of petrol pumping. That's the sort of committed person she is. She rescues caterpillars from unstable environments and brings them home to her garden full of native plants, to metamorphose there in safety, then releases them in safe habitat. Her dashboard is covered with tokens of the names of people who have been unjustly disappeared in the war on terrism, lest they be forgotten. And her kindness extended to me. Butterfly loaned me her car so that Hazel and I could travel across the bay to Miracle Three.

Third miracle: the new pediatric neurologist, Dr. Unicorn, another doctor who really gets it. She's the first specialist I've taken Hazel to who had actually discussed her case with her primary care pediatrician prior to the appointment, and who made an appointment for a follow-up visit. That alone was encouraging. Besides that, she understood that Hazel had made a huge effort just to come to the city and be upright and talking. And more, she offered an herbal option.

We'd had a lot of hope for Nortriptyline when it was first prescribed by a headache specialist, but the first week's very slight improvement had been followed by the second week's violent illness in reaction to a miniscule increase of dosage. Hazel was throwing up, which is such a rare occurrence for her, I think she was a tiny kid when last she puked. We had taken Hazel back down to the first week's dose level and continued for 11 more weeks---a total 13 weeks on Nortriptyline---but there was no further improvement. Dr. Unicorn was astonished that the headache specialist hadn't suggested Feverfew and Butterbur.

Evidently Feverfew and Butterbur, with their lovely descriptive old English names, are both proven effective in countering headaches and inflammation. Hazel's continuous headaches won't be stopped by these herbs overnight. Two and a half years of illness have worn their paths in Hazel's brain. But gradually Feverfew and Butterbur can re-route the circuitry away from pain, and Dr. Unicorn believes that two months, perhaps three, may be enough to cause considerable difference.

Despite her fancifully magical name, this neurologist isn't all herbs and potions, however. She also prescribed Midrin for Hazel to try when next she has pain so acute and intense that she can't sleep or eat. It's good to know the big guns are there if we need to draw them, but it's even better to know that herbs capable of actually solving the root problem, without the panoply of side-effects associated with prescription options, are even now working... I picture them like a trail-mending crew in a park, blocking off the paths that lead to erosion and clearing better routes. Dr. Unicorn doesn't know of a specialist in Chronic Fatigue within the Kaiser system, but she said she will look into it, and I believe that if there are any, she'll find them.

Miracle Four: the car. For this I must thank the combined efforts of my sister Bliss and our mom, my nephew Bug, my younger child Holly, a wonderful volunteer from St. Vincent de Paul named Will, and an unknown auto donor. The unknown person donated a car to St. Vincent de Paul, which checked it out thoroughly, had all necessary repairs and maintenance done, put new tires on it and placed it in a lot with perhaps a dozen other such donated and rehabbed vehicles. There, Will met me, Bliss, Bug and Holly and waited while we checked out the vehicles and narrowed down to one prospect. Happily, the one car that passed Bug's mechanical inspection and fit our budget as well, also passed a test drive with flying colors and purring engine.

It was one of the hottest days of the year. I was terribly ill, and could barely see the cars, much less negotiate to purchase one. Holly sat in the shade with me and kept my spirits up while Bug completed further mechanical checks and Bliss handled the financial negotiations. With money donated by my mom, we bought Terwilliger Toyota at a very fair price slightly under Blue Book. Another hour, this time in air-conditioned comfort at the nearby offices of AAA, and the car was insured and registered. Bliss took care of all of this while Holly and I waited in comfy chairs, Bug and Holly helping out by running messages from Bliss to me and back when the helpful people at the window needed my driver's license and such. It was a long and exhausting afternoon for a person with ME, as well as for every person with me, but so productive.

I downed a lot of caffeine and analgesics to scrape myself up and prop myself in the driver's seat, but Holly and I made it home while Bug and Bliss went on to parts Southeast. And we made it home with Our Car. After a couple of months of having to beg rides (thank you Butterfly and Bette and everyone else who helped out with a lift here or there) and tote groceries on and off a rattling bus, it's a tremendous relief to have wheels again. I had been forced by lack of transportation to cancel so many medical appointments, doctor visits are now what early September is all about. Doctor visits and, as often as possible, Bette's wonderful gentle yoga classes. I'm so happy to be able to travel to those appointments.

Miracle Five: after the car purchase had drained all available resources, we were down to bare cupboards and no way to pay Flute back for fronting eight months of utilities, not to mention providing the temporary home where the utilities are hooked up. The strain on Flute's economy was placing a strain on a long and valued friendship. We have to find a permanent home and move the heck out of here, and Flute has given me until December 1st to do so, but I had no idea where I would get the money to pay at least a part of what we owe him, or how I would afford once again a moving truck and hired help. To solve this problem, Miracle Five came from Burning Mama.

She was important to me back in film school but we had lost touch. We found each other again via Facebook. She and her art had been to Burning Man, she had a transatlantic life with family here in the Bay Area and back in Europe, she had a little tyke of her own and still the energy to create, to kayak, to do the things I used to love. I was so happy for her and, of course, jealous, but not insanely jealous. I was delighted to be reconnected and hoped she would come for tea and talk when in the neighborhood for kayaking. Life is busy, tea didn't happen, but between travelings and projects Burning Mama took time to think of me. She read my writing and told me to keep it up, and coming from her that meant a lot, since she herself is a writer I greatly admire. I was so sorry to hear that she would be uprooting from the Bay Area and moving with her man and her boy to Europe, but before she left, surely needing all the resources she could muster to finance her relocation, she dropped me a line to offer me a loan. Pride made me put it off for a couple more months, but I caved in and kindly gave her the opportunity to indulge her generosity. No interest, no due date, just someday repay: the check arrived the day after every cent left my account to buy the car. And on I went to Miracle Six.

Miracle Six: yet another psychologist who Gets It! Those of you who read a previous installment entitled "Alas in Wonderland" will remember the culmination of the weirds, a psychological test for which the state paid oodles of money to learn that I am able to fold a piece of paper (an ability which I had never contested). Well, if it was hard on me to have to travel a couple of hours round trip to meet some newly-breeched psychologist who would smirkingly ask me inane questions, how much worse I expected it would be for poor Hazel who can barely get out of bed and stand up for five minutes.

The miracle is, Dr. Sam Hain, the psychologist with whom Hazel's evaluation was scheduled, turned out to be an experience, empathetic, understanding professional. Like Dr. Unicorn, he respected Hazel's huge effort to make it to the appointment. He has known chronic illness himself and truly understands what it is to pass years of youth in crippling pain. Dr. Hain managed to reach Hazel through her pain and exhaustion and not only encourage her to talk, but make her laugh out loud. The tests he ran were intriguing logic problems as well as some vocabulary and math: no paper folding. They actually revealed what sort of material was still easy for Hazel and what types of thought bring her up to a stand. That alone would have made our trip worthwhile.

More, Dr. Hain's approach completely acknowledged and validated Hazel's struggle with this enormous burden. None of the barking of "sit up straight, go for a walk, do some chores," with which other doctors have insulted this severely ill child. Dr. Hain discussed the physical processes, the brain inflammation and the blood pressure drops, that keep Hazel weak and in pain, as well as the psychological effects of over two years of living like a mushroom, as he put it, lying quietly in the dark.

Dr. Hain asked me what sort of kids were around us, for social contacts for Hazel---just a lot of future farmers roaring around on quads? Nobody who could share interests with an unconventional kid like Hazel? I rose to defend our area ---oh, he was good at baiting! --- and mentioned for example the kid among my acquaintance here who had recently completed a brilliant artistic achievement. And Hain snapped back at me sarcastically, "Great. So you want her to socialize with a bunch of overachievers?" What Hazel needed, Hain suggested, was friends who were also mushrooms.

This is no time to be type A, Dr. Hain reminded us. This is no time to push, to try, to do. This is the time to do less. "Think less, do less, eat less, breathe less, poop less." Such a gift: accept where we are. Further, he applauded Hazel's bravery. Few other doctors have acknowledged what a huge effort Hazel is making just to survive. I've tried to tell Hazel myself, when she laments being a burden to me and wishes she could help me, that she is in fact helping me. I tell her that she's doing what she needs to be doing, resting. I tell her that's her job.

Dr. Hain recognized too that the rest we're getting is not real rest: that relief from stress can't come from merely lying down, while the longer you lie still the more things you are aware of that you're not getting done, and the more the unmeetable demands of the world distress you. He acknowledged that what we really need may not be possible. Real rest, a couple of years at least of knowing there's no need to fear, of knowing with a certainty that everything will be alright. I kept silent, turning an oblique cheek, to hide from Hazel the tears pouring down my cheeks. Acknowledgement of someone else's burden is a wonderful thing, and it hurt me so that I can't do anything to reassure Hazel and relieve her burden of worry and fear.

Dr. Hain went further. He told Hazel that she's brave. He repeated the compliment several times: "You are so brave." And it's so true. My beautiful elder daughter hasn't complained when her younger sister has been able to take classes at the junior college, act in summer stock, go traveling, while Hazel lay as quiet as possible riding the tides of pain. She hasn't raged at the loss of her teen years, though perhaps she should. She hasn't thank goodness tried to end the pain with suicide or resorted to drugs. She is so very, very brave and I'm so proud of her, and I glowed to hear someone else recognize my child's achievement.

If the miracles keep on coming, maybe they'll create a way for Hazel to become a regular patient of Dr. Hain's. As it is, out MediCal insurance won't cover that and we have no money to pay out of pocket, so it can't happen now, but it is my hope that someday Dr. Hain can help Hazel some more. For now, the lack of paperfolding, the advice to be touched more and to get annoyed more, and above all the understanding and appreciation that he gave Hazel in that one visit make Dr. Hain a miracle-worker in my book. Well, okay, in my blog.

Miracle Seven? No, the gods deserved a day of rest. That's all for now, and plenty. Perhaps there were some more miracles in the Big World with all of its horrors and heartaches. I hope so. And come to think of it, maybe there was in fact a seventh miracle for me, in the form of a sort of sabbath. The six miracles restored me. They gave me blessed rest from struggle, and the wondrous sensation of being supported. I've emerged with that wonder of illogic, hope. I feel certain that somehow, sometime soon, what we really need will come to us. Some more challenges and recreational activities for Holly, so she doesn't lose her teens stuffed in a house with two invalids. Some mushroom friends for Hazel, and the ability to rest a real unworried rest. For us all, a home, permanent and affordable, so that we don't wake in the wee hours wondering where we'll next rest our heads. Maybe over the long term, with enough stressors removed and enough real rest, maybe, maybe, healing.

If you have your health, breathe deep and feel the miracle of it. If you haven't got health, take hope. We're going to be all right, all of us. I don't know it for a certainty, but in good moments I have a sneaking suspicion. Everything will be alright, even when Dog Meets Skunk. And now, I'm off to prepare another tomato bath, so I can get back to yoga breathing. Namaste.

Friday, September 4, 2009

Wonderful Week

Soon as I can, I'll post about my good week. Right now I'm still recovering from it.