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October 12, 2012 11:56 PM Subscribe
Tips and tricks for dealing with fibro fog.
I've essentially been in a flare for almost 5 months, with pain getting worse again. There are so many things I want to do (work on an online A&P class, get back to the programming course I started) but my brain just won't cooperate.
I have told my pdoc and rheumy about this and they pretty much just shrug their shoulders (this is in S. Korea).
Anyone have any tips or tricks to get on with my life. I work 1-9, go to bed around 10 and get up about 8. Lately I've been reading kiddy lit (Yay for Anne of Green Gables) because that's the only level of difficulty I can seem to handle.
Am I going to be stupid for the rest of my life? I feel like I lost a huge part of myself (the fog was one of the reasons I left grad school with only a MA). Am I really just losing my mind?
Do ADD type meds help (not that I'd really bring it up to the pdoc unless there was a very good reason).
I've essentially been in a flare for almost 5 months, with pain getting worse again. There are so many things I want to do (work on an online A&P class, get back to the programming course I started) but my brain just won't cooperate.
I have told my pdoc and rheumy about this and they pretty much just shrug their shoulders (this is in S. Korea).
Anyone have any tips or tricks to get on with my life. I work 1-9, go to bed around 10 and get up about 8. Lately I've been reading kiddy lit (Yay for Anne of Green Gables) because that's the only level of difficulty I can seem to handle.
Am I going to be stupid for the rest of my life? I feel like I lost a huge part of myself (the fog was one of the reasons I left grad school with only a MA). Am I really just losing my mind?
Do ADD type meds help (not that I'd really bring it up to the pdoc unless there was a very good reason).
Fibro is not well-defined as a pathology, so many different psychiatric drugs tend to be used (mostly off-label) for treatment. I will broadly classify the most commonly used psych meds as follows:
Drugs that tend to be stimulating:
Modafinil
Adderall and other classical stimulants
Welbutrin
Drugs that tend to be neutral:
SSRIs
SNRIs
Borderline:
TCAs
Drugs that tend to be fog-making:
Gabapentin/Pregabalin
Anticonvulsants
Antipsychotics
That doesn't mean drugs in the first group are necessary good or that drugs in the last group are necessarily bad. Every drug has its trade-offs, and not everyone will respond to them in the same way. A drug that is too stimulating may disrupt your sleep or otherwise rev you up without actually improving your quality of life. A drug that is often sedating may improve your symptoms significantly. There are no simple guidelines.
posted by dephlogisticated at 1:00 AM on October 13, 2012
Drugs that tend to be stimulating:
Modafinil
Adderall and other classical stimulants
Welbutrin
Drugs that tend to be neutral:
SSRIs
SNRIs
Borderline:
TCAs
Drugs that tend to be fog-making:
Gabapentin/Pregabalin
Anticonvulsants
Antipsychotics
That doesn't mean drugs in the first group are necessary good or that drugs in the last group are necessarily bad. Every drug has its trade-offs, and not everyone will respond to them in the same way. A drug that is too stimulating may disrupt your sleep or otherwise rev you up without actually improving your quality of life. A drug that is often sedating may improve your symptoms significantly. There are no simple guidelines.
posted by dephlogisticated at 1:00 AM on October 13, 2012
Irrelevant anecdote through which I am absolutely not implying anything but merely wish to share:
I spent some time working with a psychiatrist who has had a surprising amount of success in sending fibromyalgia patients to therapy under the assumption that they are expressing repressed PTSD. Generally he didn't tell them that beforehand.
I know that sounds crazy.... but I was personally shocked at how many of those patients later began talking about all kinds of serious physical or psychological trauma in their lives that they had just swept under the rug until a second, seemingly minor event triggered a full blown physical expression of that pain and they didn't realize it until now.
He also recommended various forms of massage and some kind of body-sensing-enhancing meditation to reconnect the discord between body and mind. It wasn't a magic bullet but the memory problems, lifting that pervasive mental fog seemed to be the biggest change.
I know that sounds like some out-there hippie nonsense, but I am an objective scientist and I think there is something to this, because medication and standard therapy really had no effect on the patients that came into this guy's office. And when the standard options aren't working then sometimes you go to the edge of science and woo for solutions.
posted by hobo gitano de queretaro at 2:04 AM on October 13, 2012 [2 favorites]
I spent some time working with a psychiatrist who has had a surprising amount of success in sending fibromyalgia patients to therapy under the assumption that they are expressing repressed PTSD. Generally he didn't tell them that beforehand.
I know that sounds crazy.... but I was personally shocked at how many of those patients later began talking about all kinds of serious physical or psychological trauma in their lives that they had just swept under the rug until a second, seemingly minor event triggered a full blown physical expression of that pain and they didn't realize it until now.
He also recommended various forms of massage and some kind of body-sensing-enhancing meditation to reconnect the discord between body and mind. It wasn't a magic bullet but the memory problems, lifting that pervasive mental fog seemed to be the biggest change.
I know that sounds like some out-there hippie nonsense, but I am an objective scientist and I think there is something to this, because medication and standard therapy really had no effect on the patients that came into this guy's office. And when the standard options aren't working then sometimes you go to the edge of science and woo for solutions.
posted by hobo gitano de queretaro at 2:04 AM on October 13, 2012 [2 favorites]
Response by poster: First thanks.
hobo... I've been up and down the PTSD thing for years. I did many years of therapy and nearly a year of voluntary hospitalization (the other reason for leaving grad school). I recently had a bit of a PTSD curve ball lobbed in my direction, and I'm trying to process it. Unfortunately, my pdoc doesn't know of any English speaking therapists in my city, and as much as I like him as a doctor I a)don't think he does therapy (although he's a MD/PHD) and b) don't want to do therapy with him.
I know I'll never get my old life back, but where I am right now really sucks. :(
posted by kathrynm at 2:19 AM on October 13, 2012
hobo... I've been up and down the PTSD thing for years. I did many years of therapy and nearly a year of voluntary hospitalization (the other reason for leaving grad school). I recently had a bit of a PTSD curve ball lobbed in my direction, and I'm trying to process it. Unfortunately, my pdoc doesn't know of any English speaking therapists in my city, and as much as I like him as a doctor I a)don't think he does therapy (although he's a MD/PHD) and b) don't want to do therapy with him.
I know I'll never get my old life back, but where I am right now really sucks. :(
posted by kathrynm at 2:19 AM on October 13, 2012
Are you taking any meds for the fibro right now? Just wondering if you might already be on something that is contributing to the fog.
I have had success with Modafinil (generic Provigil) in fighting fatigue and helping with the fog, and I also take Gabapentin for pain. My understanding is that Modafinil is one of those meds that some people say works very well and some get no benefit from at all (at least one of my doctors thinks it's basically a placebo; I say Placebo me up, then). Gabapentin makes me sleepy so I take it at bedtime, but it doesn't increase the fog like its relative, Lyrica, did for me. I was actually reluctant to try Gabapentin after the zombification that happened to me on Lyrica, until my neurologist told me that some people have more success with Gabapentin than Lyrica and vice versa.
Am I completely fog-free? Not a chance. But the meds help, and I try to be patient with myself; I'm in a similar position of having academic work I want to get back to. I think Jandoe's comment is spot-on - I always prided myself on my intellect and forgetting words and other things is immensely frustrating, but I think (and sometimes this is work, especially if you're flaring) that we're still smart. We just have to accomplish things differently from other people.
I have PTSD, too, and I'm so sorry you're having to process a triggering situation on your own. If you're into that sort of thing there's a series of guided meditation podcasts from Meditation Oasis that I have found helpful in getting re-grounded and just relaxing in general. (There are lots of other guided meditation sources, of course; I just prefer these - and they're free.)
I hope this flare passes soon. Feel free to message me if you have med questions or want to talk.
posted by camyram at 3:34 AM on October 13, 2012
I have had success with Modafinil (generic Provigil) in fighting fatigue and helping with the fog, and I also take Gabapentin for pain. My understanding is that Modafinil is one of those meds that some people say works very well and some get no benefit from at all (at least one of my doctors thinks it's basically a placebo; I say Placebo me up, then). Gabapentin makes me sleepy so I take it at bedtime, but it doesn't increase the fog like its relative, Lyrica, did for me. I was actually reluctant to try Gabapentin after the zombification that happened to me on Lyrica, until my neurologist told me that some people have more success with Gabapentin than Lyrica and vice versa.
Am I completely fog-free? Not a chance. But the meds help, and I try to be patient with myself; I'm in a similar position of having academic work I want to get back to. I think Jandoe's comment is spot-on - I always prided myself on my intellect and forgetting words and other things is immensely frustrating, but I think (and sometimes this is work, especially if you're flaring) that we're still smart. We just have to accomplish things differently from other people.
I have PTSD, too, and I'm so sorry you're having to process a triggering situation on your own. If you're into that sort of thing there's a series of guided meditation podcasts from Meditation Oasis that I have found helpful in getting re-grounded and just relaxing in general. (There are lots of other guided meditation sources, of course; I just prefer these - and they're free.)
I hope this flare passes soon. Feel free to message me if you have med questions or want to talk.
posted by camyram at 3:34 AM on October 13, 2012
Are you on any supplements?
Magnesium, combined with Malic Acid, does wonders for my brain function and energy levels. Before this combo came along, I was barely functioning. And Lipoic Acid did things for my mental functions that I can't adequately describe; it was like it changed me from a right-brained sort of person into a left-brainer (even though, it turns out, that whole left/right brain thing is a bit of a myth.
Other possibilities are Coconut Oil (now the big alt treatment for Alzheimer's), Lecithin/Choline, and piracetam. I got modest help from the first two and haven't tried the third. Fish oil aggravates some of my neurological problems, so I use it sparingly, but some people swear by it.
The B Vitamins in general are known to have positive effects on cognitive function and energy, but there are all sorts of ins and outs to them, only some of which I ever bothered to really dig into. They just didn't seem to do me a lot of good.
There are probably a lot of other supplements I'm leaving out. Almost any mineral or vitamin deficiency could, I guess, cause your brain to slow down. It would take years to try them all. Can you ask your docs to do some blood tests? I should point out, though, that a lot of FMSers find that, even when their levels test normal, the right supplements sill help their symptoms.
Is there any other symptom that's arisen alongside the brain fog? Deficiencies in one or two of the B Vitamins can lead to a rash. Lack of magnesium could make you constipated. If you have a second symptom, it could point the way towards an answer.
On the pharmaceutical end of things, I'm afraid there isn't much that looks promising. Lyrica is still pretty big for FMS treatment, I think, but it's far more likely to make you feel stupider than smarter. Cymbalta, though, could be interesting. Or not. It's an antidepressant that increases dopamine and norepinephrine along with serotonin. It's got quite a kick to it and if you're inclined to take stimulants, you might do well to start with this stuff. It'll get your motor running, but it's been approved for the treatment of FMS (in the states, anyway), so you may not have to fight too hard to get a prescription for it, where as you might have difficulty acquiring ritalin or modafinil.
I recently got a big boost in energy and mental clarity when I was diagnosed with and treated for a testosterone deficiency, but it's unlikely that a woman would be messing around in that particular sandbox. Perhaps some other hormone could be low?
posted by Clay201 at 3:48 AM on October 13, 2012 [1 favorite]
Magnesium, combined with Malic Acid, does wonders for my brain function and energy levels. Before this combo came along, I was barely functioning. And Lipoic Acid did things for my mental functions that I can't adequately describe; it was like it changed me from a right-brained sort of person into a left-brainer (even though, it turns out, that whole left/right brain thing is a bit of a myth.
Other possibilities are Coconut Oil (now the big alt treatment for Alzheimer's), Lecithin/Choline, and piracetam. I got modest help from the first two and haven't tried the third. Fish oil aggravates some of my neurological problems, so I use it sparingly, but some people swear by it.
The B Vitamins in general are known to have positive effects on cognitive function and energy, but there are all sorts of ins and outs to them, only some of which I ever bothered to really dig into. They just didn't seem to do me a lot of good.
There are probably a lot of other supplements I'm leaving out. Almost any mineral or vitamin deficiency could, I guess, cause your brain to slow down. It would take years to try them all. Can you ask your docs to do some blood tests? I should point out, though, that a lot of FMSers find that, even when their levels test normal, the right supplements sill help their symptoms.
Is there any other symptom that's arisen alongside the brain fog? Deficiencies in one or two of the B Vitamins can lead to a rash. Lack of magnesium could make you constipated. If you have a second symptom, it could point the way towards an answer.
On the pharmaceutical end of things, I'm afraid there isn't much that looks promising. Lyrica is still pretty big for FMS treatment, I think, but it's far more likely to make you feel stupider than smarter. Cymbalta, though, could be interesting. Or not. It's an antidepressant that increases dopamine and norepinephrine along with serotonin. It's got quite a kick to it and if you're inclined to take stimulants, you might do well to start with this stuff. It'll get your motor running, but it's been approved for the treatment of FMS (in the states, anyway), so you may not have to fight too hard to get a prescription for it, where as you might have difficulty acquiring ritalin or modafinil.
I recently got a big boost in energy and mental clarity when I was diagnosed with and treated for a testosterone deficiency, but it's unlikely that a woman would be messing around in that particular sandbox. Perhaps some other hormone could be low?
posted by Clay201 at 3:48 AM on October 13, 2012 [1 favorite]
Response by poster: I take Lexapro, Cymbalta and Imiprimine in addition to a benzo (to manage the panic attacks I've been having at work). I take Gabapentin at night because it makes me to uncoordinated to take during the day. Maybe I'll ask my pdoc about trying Wellbutrin again, though I think he'll be against it. I'm barely eating as it is (too much nausea from the pain and the fibro itself) and he's starting to tack on an ED:NOS dx onto my file. He can put whatever he wants. The idiots in the insurance companies in the States will never see it.
I had some lidocane injections in a couple trigger points today and that's helped. Now at least I can get out of bed without using a chair as a crutch. I also take a B complex and I come in just under the wire as anemic, but nobody will treat me for it. I guess I have a lot to talk about once my boss gets me my insurance card...
posted by kathrynm at 5:49 AM on October 13, 2012
I had some lidocane injections in a couple trigger points today and that's helped. Now at least I can get out of bed without using a chair as a crutch. I also take a B complex and I come in just under the wire as anemic, but nobody will treat me for it. I guess I have a lot to talk about once my boss gets me my insurance card...
posted by kathrynm at 5:49 AM on October 13, 2012
"I come in just under the wire as anemic, but nobody will treat me for it."
If it's iron deficiency anemia, then I'd definitely try supplementing with some iron. It seems reasonably low risk.
posted by Clay201 at 7:51 AM on October 13, 2012
If it's iron deficiency anemia, then I'd definitely try supplementing with some iron. It seems reasonably low risk.
posted by Clay201 at 7:51 AM on October 13, 2012
Nthing what everyone else has said re. drug strategies and massage, etc. But I'm going to add in something totally different that has helped me immensely in coping with several chronic/debilitating illnesses (including fibro) that have mental side effects: Engage in EXTREME organization!
Write absolutely everything down. Take notes about everything so that you can sort and prioritize the information later. Keep bunches of to-do lists organized by life categories and amount of time/energy needed to accomplish them. Break those tasks into small, easily addressable chunks. (E.g. no epic-sized tasks like: "Finish dissertation" or "Find job") Devise systems for reminding you when you need to tackle things on the to-do lists. Your system can be electronic, on paper, a hybrid; it can use color-coded geegaws or whatszits with special symbols; whatever, it doesn't matter, just make certain that you have an external brain available at all times for when your organic brain doesn't work.
This strategy won't make you less tired, it won't give you more energy, but it will make it possible for you to maximize the tiny bit of energy that you do have available, whenever you have it available.
3am and you're awake with 1 unit of energy available? Find a 1 unit item on your to-do list and check it off! Find yourself unexpectedly with 5 units of high quality attention and energy? Check your system for long-term tasks to check off that continue to the bigger picture. After all, every 10,000 unit project can be broken into tiny 1 unit chunks that you can tackle when you feel like crap...you just need to very carefully plan to make that happen.
Speaking only for myself here, it's my opinion that people without chronic illnesses have the luxury of being a bit disorganized--because they have so much energy/attention available that squandering 10 units is no big deal to them. For those of us with chronic illnesses, every single unit counts--because we might not get anymore for months to come! So we have to optimize the units we've got when we have them. I've found that being SUPER organized makes that possible.
posted by skye.dancer at 9:54 AM on October 13, 2012 [7 favorites]
Write absolutely everything down. Take notes about everything so that you can sort and prioritize the information later. Keep bunches of to-do lists organized by life categories and amount of time/energy needed to accomplish them. Break those tasks into small, easily addressable chunks. (E.g. no epic-sized tasks like: "Finish dissertation" or "Find job") Devise systems for reminding you when you need to tackle things on the to-do lists. Your system can be electronic, on paper, a hybrid; it can use color-coded geegaws or whatszits with special symbols; whatever, it doesn't matter, just make certain that you have an external brain available at all times for when your organic brain doesn't work.
This strategy won't make you less tired, it won't give you more energy, but it will make it possible for you to maximize the tiny bit of energy that you do have available, whenever you have it available.
3am and you're awake with 1 unit of energy available? Find a 1 unit item on your to-do list and check it off! Find yourself unexpectedly with 5 units of high quality attention and energy? Check your system for long-term tasks to check off that continue to the bigger picture. After all, every 10,000 unit project can be broken into tiny 1 unit chunks that you can tackle when you feel like crap...you just need to very carefully plan to make that happen.
Speaking only for myself here, it's my opinion that people without chronic illnesses have the luxury of being a bit disorganized--because they have so much energy/attention available that squandering 10 units is no big deal to them. For those of us with chronic illnesses, every single unit counts--because we might not get anymore for months to come! So we have to optimize the units we've got when we have them. I've found that being SUPER organized makes that possible.
posted by skye.dancer at 9:54 AM on October 13, 2012 [7 favorites]
Here's a different approach to "to-do" lists that has helped me deal with illness-related physical fatigue and brain fog: just chuck 'em. A list of multiple things to hypothetically "do" is just a tease. I found that I kept making lovely lists of all the things that I needed to do, then throwing the lists away after most of the things on them just didn't matter anymore. This made me feel overburdened and inadequate.
So now I have a mental list that is only ever allowed to have just one item on it -- whatever single thing is my #1 top priority at the time. If I can get to that #1 thing, that's enough. Much of the time, "rest" is item #1, because it really is more important than everything else, since not doing enough of it will surely destroy my ability to do anything else.
I've also found that it helps to keep my environment as non-distracting as possible. Too much noise or motion, or being with too many people, drains my energy very fast, and makes it impossible to focus. Distracting discomforts like being too hot or too cold, or wearing itchy clothes, or being hungry, can have the same effect. Notice things that tend to pull your attention away from where you want it to be, and try to avoid or ameliorate them.
posted by Corvid at 10:17 PM on October 13, 2012 [1 favorite]
So now I have a mental list that is only ever allowed to have just one item on it -- whatever single thing is my #1 top priority at the time. If I can get to that #1 thing, that's enough. Much of the time, "rest" is item #1, because it really is more important than everything else, since not doing enough of it will surely destroy my ability to do anything else.
I've also found that it helps to keep my environment as non-distracting as possible. Too much noise or motion, or being with too many people, drains my energy very fast, and makes it impossible to focus. Distracting discomforts like being too hot or too cold, or wearing itchy clothes, or being hungry, can have the same effect. Notice things that tend to pull your attention away from where you want it to be, and try to avoid or ameliorate them.
posted by Corvid at 10:17 PM on October 13, 2012 [1 favorite]
I have fibromyalgia. I take 5mg Adderall X2 daily and it helps with the fatigue and brain fog.
posted by hotelechozulu at 9:32 AM on October 14, 2012
posted by hotelechozulu at 9:32 AM on October 14, 2012
This thread is closed to new comments.
posted by Jandoe at 12:31 AM on October 13, 2012 [2 favorites]