Fibromyalgia & Chronic Fatigue Syndrome: Beyond Pain & Fatigue
I don't know about you, but I get really sick of doctor and researchers focusing only on our top couple of symptoms. Yes, I need effective pain relieve. Yes, it would be lovely to wake up refreshed and energetic in the morning. But when we've got several dozen symptoms, doesn't it seem like they'd understand fibromyalgia and chronic fatigue syndrome a whole lot better if they looked beyond pain and fatigue?
When I wrote about multi-tasking recently, I mentioned that it wasn't pain or fatigue that made me unable to continue in my career -- it was the fibro fog. I couldn't multi-task, my short-term memory was shot, I'd get panicky when things got crazy (a complete turnaround from my former self), and I got easily confused and disoriented. Our cognitive dysfunction gets a cursory nod in some research, but only as a broad category -- it's never broken out into its component parts (word-finding difficulties, memory, concentration, multi-tasking, etc.) Doctors don't have much to say about it, either, other than, "Yes, that's common." Gee, thanks, that's really helpful!
Then there's our problems relating to coordination and dizziness. I took a poll a few months ago on clumsiness, and the results were overwhelming -- we're a clumsy bunch! Before fibro, I didn't stagger when I walked, I didn't bump into walls, I didn't reel upon standing and need to lay down to keep from falling. I can drive while in pain, but I can't drive when the world feels tilted at an odd angle.
While our current pain-management options are far from ideal, and so far no one's come up with much to counter fatigue, I really wish researchers would look at our other disabling symptoms. I think they'd find out a lot about the true nature of these conditions that way, which could lead to a better understanding of and treatments for our unique brands of pain and fatigue.
What's your most disabling symptom other than pain or fatigue? Take the poll, and leave comments below about how this symptom has impacted your life.
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Comments
Brain fog is for me unquestionably the worst. I’ve found that energy drinks (like Red Bull), taken in moderation (I rarely will finish a full drink, and maybe only a few sips, and almost never later than early afternoon), are the only thing which can pretty much restore me to near normal concentration (though with some side effects from too regular use of the energy drink, such as tightness of chest and a feeling of hard-to-localize pain (best described perhaps, albeit inadequately, as a feeling of painful tightness in my skin and jaw–a pain I thought had been due to chemotherapy, but which I find recurs with use of ginseng drinks), as well as my mind also racing too quickly, creating excessive libido, or having sleep difficulties).
Dark chocolate helps me to an effective, though milder degree (though not in combination with energy drinks), and if Coke didn’t bother my hiatal hernia, I can use that to gain energy for social situations. (Coke seems to help far more than other caffeinated drinks (coca?), though coffee also helps.)
I know people get all worked up against caffeine, and indeed it can be awful if it destroys the imperfect sleep we may already enjoy, but for me, as someone who had pretty much weaned myself off of caffeine before my fatigue/brain fog, it unquestionably helps restore the concentration I need for work when taken in small amounts.
While it doesn’t affect my physical fatigue, as I still suffer strongly and easily from post-exertional malaise, it can have the added benefit of giving me the mental energy that it takes to get going in doing a little exercise. (The other related trick is avoiding the calories often in such energy drinks.)
The brain fog is the worst. I have lost my sense of self. I cannot write, draw, speak, or function socially as I once did. My relationships with friends have become almost non existent. My husband and daughter suffer when I have a bad spell of fog.
People, upon meeting me, assume I am stupid, mentally unstable, or high! My neighbors all think I’m a drug addict and it’s effecting our standing in our community, One neighbor approached my husband about getting me into rehab; Another threatened to call children services on us.
I own my own online business, but have had to cut it back to one or two hours a week. I am afraid that I’m going to have give that up too.
I’ve found I’ve made some pretty silly decisions/comments that I would not have ordinarily made whilst having an episode. I simply cannot think rationally or logically as I once did.
I have found that focusing on Crocheting or Knitting has helped, but only so long as I am actually doing a project and only so long as I can physically do it.
Caffeine does not help me nor do other stimulants. I’ve almost given up.
Brain fog is definitely the worst for me. As someone with a B.A. in Creative Writing and an M.A. in English Literature, the word-finding difficulties are not only irritating – they’re a blow to my ego.
While I was in college, my friends commented on my almost photo-graphic memory of things I’d read and events from my childhood. I’d ask a friend from elementary school if he remembered a Valentine’s Day party from second grade – and then go into minute detail about what happened at it. I wonder if others of us have had such an experience with older memories?
I’ve found that, generally, caffeine helps initially. But then, I rarely drink it at all – maybe once every few months. If I drink too much, though, I have a sped-up feeling and anxiety (as someone mentioned above).
The only thing that I’ve really found that helps, is to play puzzle games (as Adrienne suggested a few posts back) on my iPod Touch or on a gaming console/pc. I found that I was able to carry on a two hour phone conversation with my sister a few days ago – as long as I played Bejeweled 2 in the background. Some might think it rude if I told them that was what I was doing – but she has FMS too and completely understood. Some friends of mine (albeit long distance) are big knitting aficionados – they even own a store – and I’ve been thinking about taking that up.
I have found that Lyrica (I’ve recently re-started it after stopping it about a year ago) does help with the brain fog some – but it also can have a drunken or anxious side-effect that is somewhat counterproductive.
In the above poll, I checked every symptom except for dizziness. And, needless to say, you could keep adding to the list. I would say that other than fibro fog, the problems that affect me most from day to day, other than pain and fatigue, are an overactive bladder, IBS, and severe allergies. I just started on Enablex for OAB after trying two other drugs that didn’t work for me (Detrol-LA and Vesicare).
What I’m really waiting for is the day that CFS and fibromyalgia will be recognized as the neurological disorders that they really are, and for the field of neurology to get behind our cause. I’m sure that most CFS/FMS patients could tell you that rheumatologists haven’t helped us that much and that the field of neurology would probably meet our needs better.
One of the problems is that there are no easy tests to confirm our diagnosis, and sending all patients for functional MRI’s or brain SPECT scans would be unrealistic without a new drug that would help our neurological problems more significantly.
So, I guess we’ll just have to wait it out some more. Hopefully, we’ll get some good news soon about Ampligen. At this point (after 25 years of being ill), I do want to try new medications, but I can’t afford to try every alternative “miracle cure” out there any more.
It seems like I’ve got the exact symptoms that you do…. the lack of multi-tasking ability really bothers me because I used to ‘juggle’ all kinds of activities at the same time. Now, I can only concentrate on 1, maybe 2 things at once. And if I get frustrated or make a mistake or forget something… the fibrofog sets in and I ’shut down’ mentally. It’s hard to describe to people who don’t have Fibromyalgia.
The clumsiness, too. I’m glad that I’m not the only one who bumps into walls, can’t walk straight (especially next to someone!) or trip over any little thing.
The chronic fatigue at times is overwhelming… like today. I almost fell asleep at the Jiffy Lube place, and I almost fell asleep at the store where I do volunteer work!
It’s so nice to know one is not alone in all of this. To me, the brain fog is also the most debilitating of everything. Being a PA to three managers requires super concentration and multi-tasking at the best of times – This is becoming a serious problem for me! I started drinking Liviton tonic, and it seems to improve the fog and tiredness somewhat, but only until lunch – then we’re back to square one again!
It seems to me that “fibromyalgics” may be people who have been very able. A constant theme is “I used to be able to juggle half a dozen things at once”. Perhaps our expectations of ourselves have been part of the trigger for this syndrome. I know that the less capable I am (either because of fatigue or brain fog) the more frantic I become to prove I can still manage.
We also draw a great deal of energy in order to appear to function normally in a social sense. So effective is our social persona, that many people have no idea of the effort involved in just carrying on a conversation, let alone dealing with someone argumentative or confrontational. My standard “joke” is that I can’t remember the word I need, but I can remember that failed word retrieval is called nominative dysphasia!
Brain ‘fog’ – I hate it, hate it, hate it. ‘fog’ doesn’t do it justice. I can no longer read a paragraph let alone a page without re-reading it whilst gritting my teeth and forcing the info into my brain! aagggh! It is my main concern when looking for new info on CFS. I don’t know if it’s just me but it’s sometimes sort of like I’m intoxicated and nothing feels real – I’ve read all sorts like fermentation of bacteria releasing chemicals etc and will sing from the roof tops if ever I stumble across something that lifts my trance-like state. What is it that’s wrong with so many of us?
GeriG,
I’m laughing so hard over your joke — that’s me exactly. I can handle all the complex medical terminology, etc. … but you get me under any kind of stress at all and I can’t remember what “cheese” is called. Thanks for the laugh!