Exhausted, confused, and in pain
But isn't my blanket nice!
Fibro's been my suspicion since April. I also have a problem with my knees I didn't know about, and am awaiting more blood test results because of a potential inflammatory problem that showed up on the initial tests (I wasn't processing information by the end, but Mr. Elephant knows).
I am so proud of myself. Not to brag, but I have a real talent for developing nasty, chronic conditions that no one takes seriously: depression, asthma, and now, fibromyalgia. Of course, people who know what bipolar disorder is tend to sit up and take notice when that is mentioned. But otherwise, I'm the queen of the "I think you're malingering" or "Oh, get over it already!" illnesses.
The fun part is that all the meds they want to put me on are contraindicated for people with bipolar disorder, and given my recent bout with the crazies, I'm very reluctant to go on any medication. There are meds for pain and meds for fatigue. When I asked about clearing up the cognitive problems (the worst symptom of all), the doctor just smiled at me and said nothing. Or maybe he did, I can't remember.
I can't remember. That's pretty funny.
I'm going back to this doctor (who was not an asshole, although very strange) next week. Between the rheumatologist and the psychiatrist, maybe a treatment plan will be worked out. I hope so, because as of right now, there is no plan. I have one prescription for a non-narcotic pain pill, but don't know if I can take it yet (has to be approved by my shrink). Theoretically, with fibromyalgia, one can get from disability to normal functioning, but no one has told me how that's supposed to happen.
Anyone out there with a diagnosis of fibromyalgia/chronic fatigue syndrome? I'd really appreciate any feedback or advice you can give me: spotted_ele@hotmail.com
24 comments:
I am sorry for the diagnosis, but glad you have a diagnosis. I plan to research some alternative options. As with a friend whose (who's?) son was recently diagnosed with Autism, we investigate ALL possible treatments. Will bathing in buttermilk enhance or detract from your spots?
i am so glad you finally have some answers. it's a new day!
have you/would you ever consider holistic treatments? acupuncture, herbs, and homeopathic remedies might provide relief from everyting.
i have a dear friend suffering from M.S. and she has opted for that treatment over conventional methods.
i have nothing but praise for the benefits of acupuncture and the likes. bodywork is such a good thing.
just a suggestion.
SE:
I am sorry to hear that, and I hope they can come up with a combo of meds that works for you as well as possible.
Whoo! A diagnosis!
Okay, so it's a sucky diagnosis, and I'm really sorry of that, because I know a little bit about what it entails, but man, a diagnosis, plus confirmation of being right? That goes solidly in the "whoo!" category.
Bright side. Must look on the bright side. And I hope they come up with something for the cognitive problems, because man, I know how that's worn on you.
Here's to hoping your rheumatologist and psychiatrist can figure out a good treatment plan.
I was diagnosed with fibromyalgia in June 2005. I took all the pills they offered me, but I only felt worse. One of the meds they gave me to help "regluate my sleep cycle" made me so zombified that I was afraid to be left alone to care for my daughter. I also have chronic depression and anxiety issues so I felt I was in a fine mess. Finally, in a fit of desperation, I dragged ass to the bookstore and found this book by Dr. R Paul St Amand. I was skeptical, because a lot of it sounded a bit quacky and I couldn't find a lot of info to back up this guys claims, but out of desperation I tried the treatment he outlines in the book. I think the diet portion was the most helpful, though I took the guaifenesin too for about a month. Anyway, within a few weeks I was feeling so much better, the knots in my back, the tender points the aching joints, were so much improved. I was able to start walking and swimming. Another thing that I think helped me was waking up earlier (5:30) in the morning to get my sleep cycle regulated. Sorry to have gone on so long, I just know how helpless you could feel in the face of this diagnosis, and I thought you'd want to know that one of your readers faced it down and in a year's time I've gone from couldn't get off the futon, falling asleep in mid-sentence, forgetting things and mental confusion that forced me to drop out of school to relatively good health, better than average energy levels and almost no pain. Good luck!
Julie-Same here, it feels good to just know. And yes, the buttermilk will fade my spots.
Cameo-I'm willing to consider anything with good evidence, and that won't interact with my current batch of meds! I think acupuncture has been shown to provide relief for FM, hope it's not too expensive. Thanks for the suggestions.
RE-Thanks for your kind thoughts, they help a lot.
Madame-Yeah, a confirmed diagnosis is a relief. And being right? Very nice. Last time I was right, I had to have surgery to remove my galllbladder. ;)
Those cognitive problems, oh they suck. No reading = no happiness.
Beansa-Thank you so much for commenting!
The thought of being loaded up (on even more) meds makes me very uncomfortable. I will definitely read the book you suggested. The thought of getting up at 5:30 is awful (I'm a night person), but OTOH, my rabbit wakes me up at 6-6:30 for his breakfast, so maybe I'll start getting up. Be very glad you're not my roommate as I will be very cranky.
I thought you'd want to know that one of your readers faced it down and in a year's time I've gone from couldn't get off the futon, falling asleep in mid-sentence, forgetting things and mental confusion that forced me to drop out of school to relatively good health, better than average energy levels and almost no pain.
This is exactly what I needed to hear. Your description fits me very well. Reading about FM, I knew that the prognosis could be poor (permanent disability), but right now, I do need to hear about positive outcomes. Even if this is a permanent part of my life, I'd really like to be participating in life again. I'd really like to be working again. Thanks so much!
Darling I'm sorry. One of my best friends is dealing with Bi-polar and fibromyalgia. I'll give her a call tommorrow (twist my arm *grin*)
Ain't that just the way? I just discovered your blog and although I do not have fibromyalgia, those of us with one diagnosis, as it were, often have several others: depression, anxiety, oh, and my heart beats a bit too heartily so that I faint! So inconvenient. it's all an act though, so no worries. Then there's the matter of the temporal-lobe epilepsy. Oh, I could go on, but fibromyalgia's painful so I'd rather just tell you i'm sorry you are hurting. Also -congratulations on the accurate diagnosis. You do know yourself better than the guy - or gal - in the white jacket!
I will email you because I may have more resources, but I'm off to the potato fields.
oh dear. i'm so sorry to hear all of this. i am totally clueless about most things medical so i can't be useful here but know that you're in my thoughts and i'm wishing you well.
snuggle bumble for me. :-)
xoxo, jared
Congratulations on your diagnosis, Elephant. Information is power. :-)
Marcelle P has FM and is doing pretty well - she has written about the benefits of very careful pacing and exercise really seems to help her.
My condition is not a million miles off and my magic word is balance.
You have to balance your desire to get better with your need to be okay in the present. There are many things that may help you, but these things must be taken slowly.
You have to balance the need to rest as much as you need and the need to keep your body as physically fit as possible.
Similarly with your mind - which is even trickier, since you can't measure a mental exercise as you can measure how far you've walked and so on.
I wish I could write more but I am about to shoot down south to visit my folks. Am thinking of you.
Hi SE,
I'm trying to resist the temptation to offer all kinds of advice about this because I don't really KNOW anything about FM, and especially how it intersects with the other stuff you have going on.
I'll join the ranks of love-and-healing-and-hug-sending fans, though. I wish you all the energy and resources you need!
Love,
YL
p.s. I found some success for other conditions using a combo of homeopathy and acupuncture, and homeopathy is kind of fun just because they ask you wacky questions like, "do you dream about robbers?" and "do you have cravings for slimy foods?"
Lost clown-Thanks very much. And btw, you were a very scary zombie!
Lucy-Multiple diagnoses just make things so much more challenging.
Jared-Thank you. Bumble is getting lots of extra snuggles.
Goldfish-Thanks for your very wise words. Balance is so tricky-I manage it better with pain than with fatigue or cognitive energy. With fatigue, I don't know I'm overdoing it until it's too late. Learning curve, I guess.
Witchy-woo-Those huge hugs are very therapeutic! :)
YL-Thanks for the supportive thoughts. I'm now wondering if I will dream about robbers eating slimy foods!
Hi, I hope you are coping well, it looks like you have a lot of good support here. I was trying to think back to when I first got diagnosed, and how I felt. I was relieved, but the more I read about fibro, the more I got pissed off. I felt like this is the diagnosis they give you when they don't know what's wrong with you and they just want you to go away. heh.
I was a certified night owl too, and the thought of waking up that early, well let's just say it took a month of moving back the alarm clock for me to get there. But it somehow got me more in tune with my body. From there I started walking, but only as fast or slow as I felt I wanted to, and only for as long as my body wanted me to. And then I started feeling more in tune with what my body was needing in terms of food - which translated into me eating brown rice and swiss chard with chickpeas for breakfast more than once - but by no means have I become fanatacal or fundamentalist about my diet. The last phase started when I stopped fighting my pain. Not all the time, but I would try to give myself 20 or 30 min a day where I would just lay down and be with myself and really feel what was going on with my body. And I had some insights, like I remembered and injury where I had a pinched nerve in my neck many years ago, and I did some stuff to correct my neck alignment and that helped.
There is a tendency in western medicine to see symptoms as things that must be tamed into submission - that health is just the absence of illness. After what I went through this past year - besides the fibro, my ongoing depression, I also had my appendix out and developed kidney stones woo! - I think there's more to it than that. Fibro taught me a lot just through reflecting on why I hurt in some places as opposed to others, or why my flare ups occured when they did. Sometimes I just had to feel like shit and give up the idea that I was going to triumph over my body thru the force of my will. I don't know if I'm making any sense, it's kind of late for me. But I'm keeping you in mind and heart, and if you want to hear any more about how I dealt or you just need to unload on someone who's been there please let me know.
Hello S.E.
I just wanted to let you know that I'm thinking of you and really hope you can sort out all your meds soon and it is all effective for you :)
Take good care,
Z
Eep. I'm sorry about the diagnosis, but as someone above me commented, information is power. I'm thinking of you!
No advice from me, I'm afraid, as I know nothing about fibromyalgia. Conflicting medication for various conditions are a bitch... I hope there's a way around that.
Hang in there, Spotted E. I hope this goes as well as it can. *hugs*
Beansa-I'd love to chat with someone who's gone through it-your feedback has already been extremely helpful.
Thank you Z, Aishwarya, and Hexy. Your thoughts mean a lot to me.
Hi SE,
New commenter here. Sorry to hear about your diagnosis... but I thought you might be interested in this blog and podcast, produced by a friend's wife here in Atlanta: Fibrant Living
Amber-Thank you very much! I'm grateful for all resources.
what they all said.
and yeah, i'm fairly familiar with "just get over it!" lovely recap with Mom while visiting this past week, about how she never "used" to understand about (my) depression ("get over it" were the exact words)(currently in remission, medicated); naturally the very next day comes an encounter wherein it's abundantly clear that she still doesn't get it and probably never will.
gyarrgh.
i am starting a trial of ADD meds tomorrow. i have some hope for the meds' effect on certain practical matters; less so for others' being terribly understanding if it turns out they don't do the trick (soon enough).
--eh, sorry, my own shit, don't mean to hijack.
Laurelin-The hugs are even more helpful than advice! :)
Belledame-I hope the ADD meds work very well for you. No worries about posting your own info, I find that those conversations are very helpful for me-getting ideas on how others' cope with things.
Right there with you on the family issues. My mother will never get it. She's not only embarrassed by me, but I think is a little *afraid* of the depression. I haven't broken the news about being bipolar. Don't think she could stand it.
So if it helps, I get it, and can empathize over how others refuse to get it.
>but I think is a little *afraid* of the depression.
Oh yeah. And of course the -other- factor in what -isn't- considered in most current approaches to health, especially mental health, is this:
-Sometimes people end up "carrying" shit for other people. And sometimes what you'd think would be abstract--psychic, emotional baggage--ends up manifesting in a very concrete, physical way.-
By which I mean: besides my annoyance at the fact that while my mother is probably right in that she doesn't "get" depression, and that this more likely comes from my dad's side (yeah, she's done the reading, it's just that it all tends to go out the window when she's upset), she sure as fuck ought to "get" anxiety, obsession, and so on, seeing as how her entire family line reads like a page straight out of Portnoy's Fucking Complaint.
and she knows this, but, you know, she has "ways" of dealing with it.
so I end up deciding that "you know what, this ain't working for me," go to the shrink, spend years in therapy, and get acknowledgments that yes, it does seem t be "working," rather amazingly after all, I am "a whole different person" these days...and then followed hard upon by the implication, "so aren't you done yet? why can't you just get it together already?" AND, more irritating (since i already ask myself those questions, duh): she HERself couldn't possibly go to therapy (well, she did make some small explorative movements in that direction I learned recently; don't know what's come of it). Doesn't "need" it; except when she nakedly admits, tears streaming down the face, that she does, or needs -something.-
one day when discussing all this and me gently bringing up the subject again, mom goes, in a strange sort of grudging voice,
"What does it do?"
Bless her heart.
AAHHHHHHHHH
Belledame-I wish we could have coffee IRL. My mom is a lot like yours, except it comes out in an opposite way-just never really talk about problems. When confronted, say "Oh, you know me. That's just how I am." That phrase can raise my blood pressure in two seconds flat.
I get to escape the judgement you get-I don't get questions like "so aren't you done yet". I can rest easy knowing that she's tearing me down behind my back to my sister. She also tears apart other relatives who are depressed. Every time I've suggested therapy for her, it's "Oh you know me".
I can't imagine my mom doing the reading, and then having it all disappear when she's upset (shudder).
yeah, my dad's kind of more the disappear-into-vagueness type. mom is by far the more uh present personality, let's say.
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