Keep trying to find answers when I only really have energy to go to work?
May 15, 2011 8:30 PM Subscribe
How can I feel comfortable with a possible diagnosis of chronic fatigue syndrome when I've spent a year going to a doctor who doesn't believe in it and who has made me feel like there is nothing wrong with me?
So over a year ago I posted a question about how I felt ill after giving a blood donation here. I feel like whatever was wrong with me, I absolutely never recovered. For the past year I've gone to my doctor (she's been my doctor for many years now) and I feel like she has absolutely never taken me seriously.
My symptoms are pretty generic but they are incredibly real and only getting worse. Fatigue, intolerance to exercise, joint and muscle pain, low grade cough and sore throat, headaches.
First she put me on Wellbutrin (I'm already on Celexa with excellent success for anxiety) because with a history of depression and a negative Epstein-Barr virus test, that, to her, was the only possible explanation for such chronic fatigue. I didn't feel depressed and the medicine gave me severe anxiety so I stopped taking it. No real follow-up from her regarding my fatigue in another visit where she said it was probably just stress related.
I persisted again and she ran a TSH level on me and that was it. She was very dismissive of me and I would leave just feeling like it must just be in my head.
Anyway, this week I made another appointment at the same clinic, but this time I saw a different doctor (my doctor wasn't available). He did a battery of tests on me (stat, so we could discuss the results that day), actually took the time to explain what could be wrong with me, and he took me seriously. I was shocked since this was not what I was used to. He said it sounded like chronic fatigue syndrome, and after my tests came back (all normal), he said he wanted to move on to more tests like RF factor for autoimmune disorders, but given I have no markers of inflammation, he thinks it is chronic fatigue. He explained that the etiology is unknown, but my abrupt onset and persistent symptoms fit the bill. He also took the time to explain how research is looking into different viruses that could play a role.
He wants me to come back for a second round of blood work (RF factor is what he wanted this time) and a chest x-ray to rule out endocarditis, although he said to follow up with these things with my doctor (the one that hasn't helped at all). I'm actually going to see if I can switch to him permanently at this point.
My main question is, at this point I've felt dismissed for so long, and without a etiological cause for chronic fatigue syndrome, I just feel like I'm "faking" it, like it's not real still. Right now my symptoms are so bad I can no longer exercise (I'm 26, normal weight, active before all this). I have had to call in sick two times this month just to "recover" and I am at the point where those days off do not make me feel better. Most days I go to work, come home, and will go to bed at 6 or 7pm. I sleep great but wake up incredibly sore, fatigued, and stiff. I can barely walk down the stairs in the morning. Some nights I'm so tired after work I can't even be bothered to cook dinner or order out to eat. It's really bad but yet I still feel like it must not be "real".
I feel like I'm just a complainer and this must be how everyone feels or that this new doctor is wrong and just telling me what I want to hear. It's frustrating when the blood work basically says everything is fine but I feel like my body is 90 years old. How can I prepare myself for treatment or possibly going through yet more medical rigamarole to get some answers, when there seems to be none with this disorder anyway, when it takes all my energy to get out of bed and go to work and do my job? I have absolutely no energy left, so how do I keep on going in to multiple doctors? My doctor didn't believe in chronic fatigue syndrome so I guess that left an impression on me and I feel like it's not real either. I'm embarrassed to mention chronic fatigue syndrome when family asks about how I'm doing (they have all noticed my decline) and what the doctors say.
So over a year ago I posted a question about how I felt ill after giving a blood donation here. I feel like whatever was wrong with me, I absolutely never recovered. For the past year I've gone to my doctor (she's been my doctor for many years now) and I feel like she has absolutely never taken me seriously.
My symptoms are pretty generic but they are incredibly real and only getting worse. Fatigue, intolerance to exercise, joint and muscle pain, low grade cough and sore throat, headaches.
First she put me on Wellbutrin (I'm already on Celexa with excellent success for anxiety) because with a history of depression and a negative Epstein-Barr virus test, that, to her, was the only possible explanation for such chronic fatigue. I didn't feel depressed and the medicine gave me severe anxiety so I stopped taking it. No real follow-up from her regarding my fatigue in another visit where she said it was probably just stress related.
I persisted again and she ran a TSH level on me and that was it. She was very dismissive of me and I would leave just feeling like it must just be in my head.
Anyway, this week I made another appointment at the same clinic, but this time I saw a different doctor (my doctor wasn't available). He did a battery of tests on me (stat, so we could discuss the results that day), actually took the time to explain what could be wrong with me, and he took me seriously. I was shocked since this was not what I was used to. He said it sounded like chronic fatigue syndrome, and after my tests came back (all normal), he said he wanted to move on to more tests like RF factor for autoimmune disorders, but given I have no markers of inflammation, he thinks it is chronic fatigue. He explained that the etiology is unknown, but my abrupt onset and persistent symptoms fit the bill. He also took the time to explain how research is looking into different viruses that could play a role.
He wants me to come back for a second round of blood work (RF factor is what he wanted this time) and a chest x-ray to rule out endocarditis, although he said to follow up with these things with my doctor (the one that hasn't helped at all). I'm actually going to see if I can switch to him permanently at this point.
My main question is, at this point I've felt dismissed for so long, and without a etiological cause for chronic fatigue syndrome, I just feel like I'm "faking" it, like it's not real still. Right now my symptoms are so bad I can no longer exercise (I'm 26, normal weight, active before all this). I have had to call in sick two times this month just to "recover" and I am at the point where those days off do not make me feel better. Most days I go to work, come home, and will go to bed at 6 or 7pm. I sleep great but wake up incredibly sore, fatigued, and stiff. I can barely walk down the stairs in the morning. Some nights I'm so tired after work I can't even be bothered to cook dinner or order out to eat. It's really bad but yet I still feel like it must not be "real".
I feel like I'm just a complainer and this must be how everyone feels or that this new doctor is wrong and just telling me what I want to hear. It's frustrating when the blood work basically says everything is fine but I feel like my body is 90 years old. How can I prepare myself for treatment or possibly going through yet more medical rigamarole to get some answers, when there seems to be none with this disorder anyway, when it takes all my energy to get out of bed and go to work and do my job? I have absolutely no energy left, so how do I keep on going in to multiple doctors? My doctor didn't believe in chronic fatigue syndrome so I guess that left an impression on me and I feel like it's not real either. I'm embarrassed to mention chronic fatigue syndrome when family asks about how I'm doing (they have all noticed my decline) and what the doctors say.
I'm not a doctor, but I do think that you should be taken seriously. I've dealt with fatigue issues as well for a number of years, and there ended up being a medical resolution for it. This is true for many people, and there are diagnosable conditions with fatigue as a fundamental symptom. To be dismissed out of hand without further testing sounds to me, frankly, ridiculous. Also, it seems much less doubtful that a second doctor would make up problems that match your symptoms, than another doctor might have missed something. Additionally, a doctor that makes you feel poorly about yourself might not be the standard to hold other doctors to.
posted by SpacemanStix at 8:54 PM on May 15, 2011
posted by SpacemanStix at 8:54 PM on May 15, 2011
This seems to me (a non-doctor) like one of two things:
(1) Perhaps this is really just a symptom of a recurrent (but now far, far worse) depression, in which case the first doctor might've been right in diagnosis, but certainly wrong in her dismissive treatment. In this case, it might well be beneficial to seek out and try another antidepressant, keeping in mind that not all depression is evident to the depressed person -- severe lack of affect or motivation is also a clear symptom of depression, even absent sadness.
(2) Perhaps this is in fact CFS, though even if it is, don't discount the possibility that it is being severely exacerbated by (and difficult to dissociate from) a simultaneous recurrence of depression. I'm highly disinclined to suspect CFS alone due to the tone of your writing (i.e., it sounds like something I would write during a depressive episode), though I've also had no experience with CFS and the CFS might be so draining on you as to appear to be depression.
(3) Overall: You are not just faking it. This doesn't ever happen to people normally, not even in the broadest sense of the term. You are genuinely ill; don't ever think otherwise. And, if you have any choice in the matter, do not go back to your first doctor: you're only going to get treated seriously by a doctor willing to treat you seriously in the first place.
posted by matlock expressway at 8:57 PM on May 15, 2011 [2 favorites]
(1) Perhaps this is really just a symptom of a recurrent (but now far, far worse) depression, in which case the first doctor might've been right in diagnosis, but certainly wrong in her dismissive treatment. In this case, it might well be beneficial to seek out and try another antidepressant, keeping in mind that not all depression is evident to the depressed person -- severe lack of affect or motivation is also a clear symptom of depression, even absent sadness.
(2) Perhaps this is in fact CFS, though even if it is, don't discount the possibility that it is being severely exacerbated by (and difficult to dissociate from) a simultaneous recurrence of depression. I'm highly disinclined to suspect CFS alone due to the tone of your writing (i.e., it sounds like something I would write during a depressive episode), though I've also had no experience with CFS and the CFS might be so draining on you as to appear to be depression.
(3) Overall: You are not just faking it. This doesn't ever happen to people normally, not even in the broadest sense of the term. You are genuinely ill; don't ever think otherwise. And, if you have any choice in the matter, do not go back to your first doctor: you're only going to get treated seriously by a doctor willing to treat you seriously in the first place.
posted by matlock expressway at 8:57 PM on May 15, 2011 [2 favorites]
What phunniemee said. I've been through a slew of doctors who all said, "there's nothing wrong with you" or "we can't find anything wrong with you" &c...
You obviously feel something is wrong or you would not be going to the doctor. You are not complaining needlessly. How to get over your previous doctor's apathy and ignorance? Tell yourself that doctors are not gods. They are human beings with their own prejudices and they make mistakes. Even *after* I've been diagnosed with fibromyalgia by both a general practitioner and a rheumatologist, I've been told by another doctor that he thinks I'm faking it. "Attention seeking" is the phrase I believe he used. It's just the way the world works.
I know there's something wrong with me. You know there's something wrong with you. If you believe the diagnosis of CFS is what's up with you, look into it, become informed, and don't let anyone - not even doctors - tell you that there's nothing wrong.
posted by patheral at 8:58 PM on May 15, 2011 [1 favorite]
You obviously feel something is wrong or you would not be going to the doctor. You are not complaining needlessly. How to get over your previous doctor's apathy and ignorance? Tell yourself that doctors are not gods. They are human beings with their own prejudices and they make mistakes. Even *after* I've been diagnosed with fibromyalgia by both a general practitioner and a rheumatologist, I've been told by another doctor that he thinks I'm faking it. "Attention seeking" is the phrase I believe he used. It's just the way the world works.
I know there's something wrong with me. You know there's something wrong with you. If you believe the diagnosis of CFS is what's up with you, look into it, become informed, and don't let anyone - not even doctors - tell you that there's nothing wrong.
posted by patheral at 8:58 PM on May 15, 2011 [1 favorite]
I actually had a hard time believing in chronic fatigue syndrome until I watched The Golden Girls episodes Sick and Tired parts 1 and 2. I don't know if the science held up but it did a pretty good job of showing what people can go through to get a diagnosis. The fact that there isn't a single test that will show you to be sick doesn't mean you aren't. You need a doctor that will take you seriously and it sounds like the second doctor at the clinic fits the bill.
posted by sgrass at 8:59 PM on May 15, 2011 [1 favorite]
posted by sgrass at 8:59 PM on May 15, 2011 [1 favorite]
For what it's worth, here is a funny, cool, online-outgoing guy who suffers from CFS: http://thefrogman.me/
He talks about it on his "about" page and I bet he'd talk to you if you asked him anything.
posted by NickDouglas at 8:59 PM on May 15, 2011
He talks about it on his "about" page and I bet he'd talk to you if you asked him anything.
posted by NickDouglas at 8:59 PM on May 15, 2011
This doesn't answer your question directly but: I had exactly these symptoms for almost 2 years and they turned out to be a side effect of Celexa. When I went off the Celexa (a very slow taper and a very hard withdrawal process) I returned to normal except that I have lost quite a lot of baseline fitness and strength from being ill for so long. My doctor, otherwise excellent and supportive, never considered medication side effects when thinking about my problems. I figured it out from reading somebody's AskMe comment. Going off Celexa made my life worth living again.
I had typed some more stuff but I see others said all of it already. You're not faking; you need a doctor who will take you seriously and hang in with you (which can be hard to find when you're dealing with something hard-to-diagnose; doctors can get frustrated at not being able to solve your problem); good luck.
posted by not that girl at 9:08 PM on May 15, 2011 [5 favorites]
I had typed some more stuff but I see others said all of it already. You're not faking; you need a doctor who will take you seriously and hang in with you (which can be hard to find when you're dealing with something hard-to-diagnose; doctors can get frustrated at not being able to solve your problem); good luck.
posted by not that girl at 9:08 PM on May 15, 2011 [5 favorites]
Response by poster: In terms of depression, I really in no way feel depressed. I think my tone is showing my frustration at this entire process. I am not lacking in motivation or will. I feel incredibly happy in life, just really bummed about my body. I love my job, I have a wonderful house, my marriage is going well, my mom is doing so incredibly its almost unbelievable to me. But my body feels like it is shutting down on me! I'm getting really frustrated because I'm 26 and I should be able to do simple things like walk to my bus stop without feeling drained, or head to bowling with my coworkers after work (that ended up with me bowling a single game, then having to sit out and watch everyone else bowl while they asked why I wasn't participating more even though I wanted to bowl more (I had won the first game even) and me almost unable to get up for work the next day). My doctor just latched on to that given that I have a history of depression but I spent a long time working it out in therapy and discovering the real underlying thoughts and feelings that went along with that. So I really do doubt depression. Plus I'm on Celexa for my anxiety and it is doing an superb job there. I know depression can present in different ways, and the new doctor I saw screened me with a questionnaire for depression. He said he didn't think it was depression at all and given that he spent more time with me in a single visit than my previous doctor has in multiple visits, I think he would have a better perspective of that.
posted by rainygrl716 at 9:11 PM on May 15, 2011 [1 favorite]
posted by rainygrl716 at 9:11 PM on May 15, 2011 [1 favorite]
Response by poster: Thanks, not that girl, for bringing that up. That is one thing this new doctor mentioned as well, so he wanted to know if I'd ever been off of it recently. I've been on Celexa (off and on, at one point up to 80mg) since I was 17 years old, and right now I'm going on about three years on it (20 mg, no change in dosage), so given my history with it he kind of ruled that out, but I might look into it more. It's worth a shot, but I'm a little nervous if my anxiety returns.
posted by rainygrl716 at 9:19 PM on May 15, 2011
posted by rainygrl716 at 9:19 PM on May 15, 2011
Have you been tested for Lyme disease?
posted by JohnnyGunn at 9:42 PM on May 15, 2011 [2 favorites]
posted by JohnnyGunn at 9:42 PM on May 15, 2011 [2 favorites]
Switch to the new doctor and keep trying. As others have mentioned, there are a lot of conditions which can cause fatigue, many of which are treatable. There's a very real possibility that you will get a diagnosis that'll change your life for the better, so keep at it!
How can I prepare myself for treatment or possibly going through yet more medical rigamarole to get some answers, when there seems to be none with this disorder anyway, when it takes all my energy to get out of bed and go to work and do my job? I have absolutely no energy left, so how do I keep on going in to multiple doctors?
At this point, it sounds bad enough that it may eventually threaten your ability to get out of bed and go to work, period. You need to prioritize your health, and that means spending your precious energy on getting your energy back. If there's even a possibility that you might get better -- and there is! -- then I'm sure everyone at work would rather have you take some extra time off to pursue treatment.
posted by vorfeed at 9:54 PM on May 15, 2011
How can I prepare myself for treatment or possibly going through yet more medical rigamarole to get some answers, when there seems to be none with this disorder anyway, when it takes all my energy to get out of bed and go to work and do my job? I have absolutely no energy left, so how do I keep on going in to multiple doctors?
At this point, it sounds bad enough that it may eventually threaten your ability to get out of bed and go to work, period. You need to prioritize your health, and that means spending your precious energy on getting your energy back. If there's even a possibility that you might get better -- and there is! -- then I'm sure everyone at work would rather have you take some extra time off to pursue treatment.
posted by vorfeed at 9:54 PM on May 15, 2011
Have you been tested for Lyme disease?
posted by JohnnyGunn
It's a myth that Lyme disease causes fatigue. So says my doc, who thinks I might have CFS.
OP-- stop seeing the old doctor. Continue seeing the new one. Get the correct diagnosis, whatever that may be. Hope you start to figure it out sooner rather than later.
posted by two lights above the sea at 10:08 PM on May 15, 2011
posted by JohnnyGunn
It's a myth that Lyme disease causes fatigue. So says my doc, who thinks I might have CFS.
OP-- stop seeing the old doctor. Continue seeing the new one. Get the correct diagnosis, whatever that may be. Hope you start to figure it out sooner rather than later.
posted by two lights above the sea at 10:08 PM on May 15, 2011
it is certainly not a myth that Lyme disease can cause fatigue. My 16 year old grandson suffers mightily from fatigue since he contracted Lyme. It is a horrible ailment to endure.
posted by JayRwv at 10:16 PM on May 15, 2011 [4 favorites]
posted by JayRwv at 10:16 PM on May 15, 2011 [4 favorites]
Speaking as one who's run the gamut of doctors saying "there's nothing in my specialty that's wrong with you. Have you considered a psychiatrist?" - DON'T let yourself be suckered by the lazy-minded.
Just try not to reach out and BITE the hand that is patting you on the shoulder while its owner patronizes you.
In my case it took years of dismissals and quacks (if you find a CFS 'specialist' more interested in his consulting fees than your symptoms - don't walk. Run.) but that was almost a decade ago and the nice thing is that more doctors are aware of the CFS spectrum these days, and there's less BS to wade through - and there's the big internet to help you wade through it!
Firstly, it is possible to develop a new response to a drug that you have been on long term. Don't rule that out.
Secondly, as mentioned in other comments, the CFS spectrum tends to need a holistic diagnosis.
Here are places to start - you can do the legwork from the sofa with a telephone and an internet connection, and if you're just too damn tired, a good friend to make the phone calls on your behalf:
If you're in the US, the mayo clinic is good_
This ME/CFS support group is also good
And THIS page has a wealth of good resources.
They may not be able to help you directly, but they know about this stuff, and can help you find out where you need to go.
And as for being embarrassed - fifty years ago my asthmatic mother was diagnosed as an attention-seeking hysteric when she stopped breathing. Today her asthma doctor badgers her when she skips appointments because she needs to respect her meds. I recently found a medical text from the sixties in a US public library that said that women who complain of serious period cramps were attention seeking hysterics - ignore 'em and the cramps will go away. Today we can do an ultrasound and see physical evidence of endimetriosis.
Time passes and worlds change - mostly for the better.
Speaking as someone with the profoundest up-close-and-personal respect for the medical profession - western evidence-based medicine can generate a mindset that in the wrong doctor, leads to a summary dismissal of what can't be explained by medical science AS IT CURRENTLY EXISTS. It's lazy and small-minded as hell, but people are people are people - some of them just have medical degrees.
Yes, having an invisible disability sucks eggs. People who give you fishy looks for taking the elevator one floor and mutter snide comments about 'heath-conscious work environments' and "take the stairs, save electricity' - or who look at you sideways for having no energy are NOT your problem. It's not always easy to internalize this - especially if you were a bustling busy person before you got felled by the THING, but repeat it to yourself - sixteen times a day, when you look at yourself in the mirror when you're brushing your teeth in the morning. It took me a decade, but I'm getting there, and the unbelievable things able-bodied-and-small-minded people can pull don't bother me as much as they once did. I know who I am.
I sincerely hope that you won't be dealing with this in the long term, but in the short term, you need somebody to talk to. When you're lying on the sofa, unable to get up - go online and find a local support group.
Google 'invisible disabilities' and "CFS' in conjunction with 'support group' and see if there's anything local - if not, there are lots of online forums - just reading the forums can give you a sense of perspective and a grip on a solid foundation: 'I'm not nuts. My body just isn't cooperating with me right now."
If you had a fractured leg, would you blame - or permit anyone else to blame - a poor mindset when you failed to complete a marathon?
Try these guys:
Right now, you need to embrace some self-love. From your other posts, it appears that you might have a few issues with support within your family, so gather up some friends and have a talk with them. Right now it doesn't matter what the cause IS - the issue at hand is that for some reason you're very VERY far below par and you need help so that you CAN get yourself back on your feet. You need someone to throw a baking party, so that you can fill your freezer with frozen dinners. You need a particularly sweet someone to help you clean the really grotty bits of your house once a week for a while -scrub the dishes and clean the toilet. You may need someone to move a plastic chair into the shower so that you can sit down while you exert yourself scrubbing your hair - think about the things that will make your life easier for you.
Most importantly, you need someone to sit next to you on the sofa and hold your hand while you pick up the phone and start calling the people in these links. You can sort out a return of favors later, if you like.
You'd be amazed at what people will do if you ask.
Go to it!
And if there's anything you want to ask or share - I've been there, I've done it, and I answer my memails.
posted by tabubilgirl at 10:24 PM on May 15, 2011 [11 favorites]
Just try not to reach out and BITE the hand that is patting you on the shoulder while its owner patronizes you.
In my case it took years of dismissals and quacks (if you find a CFS 'specialist' more interested in his consulting fees than your symptoms - don't walk. Run.) but that was almost a decade ago and the nice thing is that more doctors are aware of the CFS spectrum these days, and there's less BS to wade through - and there's the big internet to help you wade through it!
Firstly, it is possible to develop a new response to a drug that you have been on long term. Don't rule that out.
Secondly, as mentioned in other comments, the CFS spectrum tends to need a holistic diagnosis.
Here are places to start - you can do the legwork from the sofa with a telephone and an internet connection, and if you're just too damn tired, a good friend to make the phone calls on your behalf:
If you're in the US, the mayo clinic is good_
This ME/CFS support group is also good
And THIS page has a wealth of good resources.
They may not be able to help you directly, but they know about this stuff, and can help you find out where you need to go.
And as for being embarrassed - fifty years ago my asthmatic mother was diagnosed as an attention-seeking hysteric when she stopped breathing. Today her asthma doctor badgers her when she skips appointments because she needs to respect her meds. I recently found a medical text from the sixties in a US public library that said that women who complain of serious period cramps were attention seeking hysterics - ignore 'em and the cramps will go away. Today we can do an ultrasound and see physical evidence of endimetriosis.
Time passes and worlds change - mostly for the better.
Speaking as someone with the profoundest up-close-and-personal respect for the medical profession - western evidence-based medicine can generate a mindset that in the wrong doctor, leads to a summary dismissal of what can't be explained by medical science AS IT CURRENTLY EXISTS. It's lazy and small-minded as hell, but people are people are people - some of them just have medical degrees.
Yes, having an invisible disability sucks eggs. People who give you fishy looks for taking the elevator one floor and mutter snide comments about 'heath-conscious work environments' and "take the stairs, save electricity' - or who look at you sideways for having no energy are NOT your problem. It's not always easy to internalize this - especially if you were a bustling busy person before you got felled by the THING, but repeat it to yourself - sixteen times a day, when you look at yourself in the mirror when you're brushing your teeth in the morning. It took me a decade, but I'm getting there, and the unbelievable things able-bodied-and-small-minded people can pull don't bother me as much as they once did. I know who I am.
I sincerely hope that you won't be dealing with this in the long term, but in the short term, you need somebody to talk to. When you're lying on the sofa, unable to get up - go online and find a local support group.
Google 'invisible disabilities' and "CFS' in conjunction with 'support group' and see if there's anything local - if not, there are lots of online forums - just reading the forums can give you a sense of perspective and a grip on a solid foundation: 'I'm not nuts. My body just isn't cooperating with me right now."
If you had a fractured leg, would you blame - or permit anyone else to blame - a poor mindset when you failed to complete a marathon?
Try these guys:
Right now, you need to embrace some self-love. From your other posts, it appears that you might have a few issues with support within your family, so gather up some friends and have a talk with them. Right now it doesn't matter what the cause IS - the issue at hand is that for some reason you're very VERY far below par and you need help so that you CAN get yourself back on your feet. You need someone to throw a baking party, so that you can fill your freezer with frozen dinners. You need a particularly sweet someone to help you clean the really grotty bits of your house once a week for a while -scrub the dishes and clean the toilet. You may need someone to move a plastic chair into the shower so that you can sit down while you exert yourself scrubbing your hair - think about the things that will make your life easier for you.
Most importantly, you need someone to sit next to you on the sofa and hold your hand while you pick up the phone and start calling the people in these links. You can sort out a return of favors later, if you like.
You'd be amazed at what people will do if you ask.
Go to it!
And if there's anything you want to ask or share - I've been there, I've done it, and I answer my memails.
posted by tabubilgirl at 10:24 PM on May 15, 2011 [11 favorites]
I had a partner with fibro, and I've seen first hand how hard it can be to deal with some of the stressors of life (and doctors who poo poo you)...
Don't let the "experts" tell you what you feel isn't true. You know how you feel. The spoon theory as mentioned above, is a good thing. I don't have much to add, other than what everyone says - DTSDA (Dump The Shitty Doctor Already). You may or may not find a direct answer to what's causing your ailment, but even if that's the case, you may be able to find something that can help manage it.
Sending good luck and an answer soon.
posted by symbioid at 10:52 PM on May 15, 2011 [1 favorite]
Don't let the "experts" tell you what you feel isn't true. You know how you feel. The spoon theory as mentioned above, is a good thing. I don't have much to add, other than what everyone says - DTSDA (Dump The Shitty Doctor Already). You may or may not find a direct answer to what's causing your ailment, but even if that's the case, you may be able to find something that can help manage it.
Sending good luck and an answer soon.
posted by symbioid at 10:52 PM on May 15, 2011 [1 favorite]
It's great that you've found a Dr willing to listen and work with you. It sounds like he's doing the responsible thing and making sure to cover the differential diagnosis possibilities. What I've found more important than a firm diagnosis is having a short term treatment plan. Something you and the doctor can agree on until and when the condition is confidently identified and a longer-term plan put in place. Sometimes that will be predicated on the DX, but many times there are little steps that can be taken immediately to try and bring symptoms in check. That's the way I started with my GP and subsequently with the Rheumatologist. There's now a team of 5 specialists on my case.
Although I do participate in a couple myself. I'm a little leery of spending too much time in online forums, especially with many of the Rheumatic conditions. They can become echo chambers. But I would definitely encourage you to find some IRL groups. Talking with someone sharing the same condition can be really helpful up to and including coping strategies and comparing notes on healthcare professionals.
Good luck with the new doctor.
posted by michswiss at 11:29 PM on May 15, 2011
Although I do participate in a couple myself. I'm a little leery of spending too much time in online forums, especially with many of the Rheumatic conditions. They can become echo chambers. But I would definitely encourage you to find some IRL groups. Talking with someone sharing the same condition can be really helpful up to and including coping strategies and comparing notes on healthcare professionals.
Good luck with the new doctor.
posted by michswiss at 11:29 PM on May 15, 2011
I can tell you now that the symptoms you describe are not normal. I sometimes feel so tired I have to go to bed at 9, not 6.
Doctors should not say that because they don't know the cause, symptoms don't exist.
Keep with the new guy. You should be able to find treatment that will help.
posted by plonkee at 12:54 AM on May 16, 2011
Doctors should not say that because they don't know the cause, symptoms don't exist.
Keep with the new guy. You should be able to find treatment that will help.
posted by plonkee at 12:54 AM on May 16, 2011
I also have health problems that are "invisible" -- that is, invisible both because you can't tell I'm ill just by looking at me, and invisible because there is no obvious cause.
I've had doctors who believed me and took me seriously. Unfortunately, I've also had doctors that believed it was all in my head, or even worse, that I was making it up. (I had one psychologist--that one of my doctors referred me to--tell my mother to punish me when I couldn't make it to school.) There is a lot of prejudice against invisible illnesses out there. Sometimes that rubs off on the sufferers and makes us wonder if it really isn't all in our heads.
What helps me deal with the general feeling that I'm "faking it" is first:
* If I feel awful, I feel awful. I mean, I know that what I'm feeling is not normal and that there must be something abnormal causing it, even if I don't know what it is.
* I am not the first person to suffer from an illness with an unknown cause, nor am I the first one to be dismissed as hysterical or a faker. Others have gone through the same thing, and then have been "vindicated" as medical science advanced and the cause was discovered. Just because no one knows what's making me sick now doesn't mean I'm not sick or that they'll never know.
* The human body is a marveously complex thing. I find it amazing, actually, that we actually can categorize and understand so many of its malfunction. When I think about all of the things that are going on and all of the things that can go wrong, it seems natural to me that many people will be sick for reasons that aren't well understood.
* Eventually, if a doctor stopped taking me seriously, I stopped going back. I went to doctors who seemed to believe me. That helped, even though none of them were able to do much for me.
Basically -- medical science is fallible. We've made a lot of advances since we believed it was a dreadful sin to do an autopsy and that illness was caused by bad air, but in a lot of ways, we're still fumbling around in the dark. You don't need the validation of the medical community in order for your problem to be "real." They just don't have that kind of ultimate knowledge. Keep that in mind.
You do want a doctor who will take you seriously and who will work with you. A doctor who just dismisses symptoms like yours is being intellectually lazy, and an intellectually lazy doctor is unlikely to be of any use when dealing with a difficult problem. Ditch her. If you can, you might want to see more than one doctor, as well--even if your current doctor is very good, he might know someone with more knowledge in a particular area, for example.
posted by Kutsuwamushi at 3:23 AM on May 16, 2011 [2 favorites]
I've had doctors who believed me and took me seriously. Unfortunately, I've also had doctors that believed it was all in my head, or even worse, that I was making it up. (I had one psychologist--that one of my doctors referred me to--tell my mother to punish me when I couldn't make it to school.) There is a lot of prejudice against invisible illnesses out there. Sometimes that rubs off on the sufferers and makes us wonder if it really isn't all in our heads.
What helps me deal with the general feeling that I'm "faking it" is first:
* If I feel awful, I feel awful. I mean, I know that what I'm feeling is not normal and that there must be something abnormal causing it, even if I don't know what it is.
* I am not the first person to suffer from an illness with an unknown cause, nor am I the first one to be dismissed as hysterical or a faker. Others have gone through the same thing, and then have been "vindicated" as medical science advanced and the cause was discovered. Just because no one knows what's making me sick now doesn't mean I'm not sick or that they'll never know.
* The human body is a marveously complex thing. I find it amazing, actually, that we actually can categorize and understand so many of its malfunction. When I think about all of the things that are going on and all of the things that can go wrong, it seems natural to me that many people will be sick for reasons that aren't well understood.
* Eventually, if a doctor stopped taking me seriously, I stopped going back. I went to doctors who seemed to believe me. That helped, even though none of them were able to do much for me.
Basically -- medical science is fallible. We've made a lot of advances since we believed it was a dreadful sin to do an autopsy and that illness was caused by bad air, but in a lot of ways, we're still fumbling around in the dark. You don't need the validation of the medical community in order for your problem to be "real." They just don't have that kind of ultimate knowledge. Keep that in mind.
You do want a doctor who will take you seriously and who will work with you. A doctor who just dismisses symptoms like yours is being intellectually lazy, and an intellectually lazy doctor is unlikely to be of any use when dealing with a difficult problem. Ditch her. If you can, you might want to see more than one doctor, as well--even if your current doctor is very good, he might know someone with more knowledge in a particular area, for example.
posted by Kutsuwamushi at 3:23 AM on May 16, 2011 [2 favorites]
Please prioritise your health over your work here. As others have said you may well get worse before you get better.
My uncle has suffered from CFS for almost 15 years. When he first became ill he went form being a post man (i.e. walking for several hrs a day for work), who went home and did several hrs of gardening or played a round of golf after work (no electric buggies in the UK, so more walking) to being unable to walk from the bedroom to the livingroom in his bungalow. It took a very long time for him to get better. He had to give up work entirely. He literally had to build himself up from being unable to play any golf for a while to playing 18 holes again, one hole at a time for example. I am not saying that to scare you - my uncle is 40 years older than you and as I understand it youth is on your side. But you have to take this serious and prioritise getting better.
Please beware that it is not just physical activity, also mental activity that goes with noisy, busy environments and social interaction that can drain you. That's the first thing that came to mind when you mentioned the bowling episode.
The good news is that there are many strategies you can employ to get better. Go and check out the resouces others have linked and find people locally who can support you. The turning point for my uncle was when he really learned to understand the condition and respect the restrictions it imposes on you. This really started when he met other sufferers who were on the road to recovery, who could teach him how to get adquate rest for example.
posted by koahiatamadl at 4:06 AM on May 16, 2011 [1 favorite]
My uncle has suffered from CFS for almost 15 years. When he first became ill he went form being a post man (i.e. walking for several hrs a day for work), who went home and did several hrs of gardening or played a round of golf after work (no electric buggies in the UK, so more walking) to being unable to walk from the bedroom to the livingroom in his bungalow. It took a very long time for him to get better. He had to give up work entirely. He literally had to build himself up from being unable to play any golf for a while to playing 18 holes again, one hole at a time for example. I am not saying that to scare you - my uncle is 40 years older than you and as I understand it youth is on your side. But you have to take this serious and prioritise getting better.
Please beware that it is not just physical activity, also mental activity that goes with noisy, busy environments and social interaction that can drain you. That's the first thing that came to mind when you mentioned the bowling episode.
The good news is that there are many strategies you can employ to get better. Go and check out the resouces others have linked and find people locally who can support you. The turning point for my uncle was when he really learned to understand the condition and respect the restrictions it imposes on you. This really started when he met other sufferers who were on the road to recovery, who could teach him how to get adquate rest for example.
posted by koahiatamadl at 4:06 AM on May 16, 2011 [1 favorite]
30 male. I've been dealing with disbelieving doctors for about a year now. Every test they did said I was in perfect health except for a "recent but not active mono infection," and they still didn't believe me and said I was depressed, which I'm simply not, etc., etc.. I hit a low about six months ago and couldn't leave my apartment intermittently. Now I'm back to about 85% and still climbing. MeFi Mail me if you want some random (but smart, I think) ideas from all the stuff I tried to get better, some of which might be helpful to you, even though you might be experiencing this for entirely different reasons.
In any case, go with the doctor that's taking you seriously! It's not in your head.
posted by zeek321 at 4:41 AM on May 16, 2011
In any case, go with the doctor that's taking you seriously! It's not in your head.
posted by zeek321 at 4:41 AM on May 16, 2011
I'm going to second or third the recommendation to see a rheumatologist. The symptoms you're describing, especially the morning stiffness, are classic auto-immune symptoms. My experience was not unlike yours, and I even got dismissed by the first rheumatologist I saw before I finally found a good rheumatologist and got treated. 3 years later, my fatigue is mostly gone and my joint pain is a ghost of its former self. I will be on these drugs for the rest of my life, but they work! It may be that what you have can never be diagnosed beyond CFS, but it would be a shame to stick with that diagnosis if another one and the treatment that goes along with it are possible.
posted by hydropsyche at 5:19 AM on May 16, 2011 [2 favorites]
posted by hydropsyche at 5:19 AM on May 16, 2011 [2 favorites]
I'm glad you like your new doctor, but a chest x-ray is not used in the diagnosis of endocarditis.
posted by treehorn+bunny at 9:12 AM on May 16, 2011
posted by treehorn+bunny at 9:12 AM on May 16, 2011
My bff has suffered with fatigue for the last 12 years, starting around your age. Pain, stiffness, etc. She's been diagnosed with fibro, then CFS, and lately it was getting worse. She saw a new clinic recently and they think it's chronic lyme (despite the test having been called negative in the past). She and they seem pretty positive about making big improvements, and she's already doing some better for the B12 shots they decided she needed.
I don't know how well her experience maps to yours, but this stuff is painfully real for lots of young people. And I don't know how you'll find the will to keep trying, except to know that sometimes it does get better. And the main way it does is to find Really Good medical professionals who will take this stuff seriously and try to help you. So nthing sticking with the new guy, at least until you need something different. And, yeah, look into some of the support groups - you'll find your experience is all too common there - and remain hopeful about it getting better.
posted by ldthomps at 9:47 AM on May 16, 2011
I don't know how well her experience maps to yours, but this stuff is painfully real for lots of young people. And I don't know how you'll find the will to keep trying, except to know that sometimes it does get better. And the main way it does is to find Really Good medical professionals who will take this stuff seriously and try to help you. So nthing sticking with the new guy, at least until you need something different. And, yeah, look into some of the support groups - you'll find your experience is all too common there - and remain hopeful about it getting better.
posted by ldthomps at 9:47 AM on May 16, 2011
Here's what gets me with this issue. You've got fatigue. You are tired. Your doctor tells you "This is all in your head. You need a shrink."
You go to the shrink.
Your shrink tells you, "This is all in biology. You need medicine to alter this biological illness."
If that's where we'll wind up we should START with neurobiology in the first place and look at how each organ in functioning, how metabolism is working, how insulin in being processed, liver enzymes, blood brain barrier, etc etc.
Because that is what the researchers are looking into when they make these "psych meds" to being with.
All in all, you are getting what every one who firsts starts having fatigue or other mild symptoms should have, a comprehensive look into how your body is functioning and what the hell is going on.
If psychiatry tells us "It's biology" then that's really what the psychiatrists should be doing too. But don't believe that medicine is the only thing that alters biology. The food you eat, the relationships you have, the way you feel about your place in the world, past emotional wounds, trauma, ability to share difficult emotions, feeling valuable for your contributions, the amount of hugs and laughter and personal sharing etc etc--- all of these things affect your physical well being do.
PLEASE enjoy everything this new doctor has to offer, ditch the old one. Even if it were "in your head" that can affect your biology and a proper support for the way your body is struggling might be found by looking at how your body is functioning.
posted by xarnop at 11:31 AM on May 16, 2011 [3 favorites]
You go to the shrink.
Your shrink tells you, "This is all in biology. You need medicine to alter this biological illness."
If that's where we'll wind up we should START with neurobiology in the first place and look at how each organ in functioning, how metabolism is working, how insulin in being processed, liver enzymes, blood brain barrier, etc etc.
Because that is what the researchers are looking into when they make these "psych meds" to being with.
All in all, you are getting what every one who firsts starts having fatigue or other mild symptoms should have, a comprehensive look into how your body is functioning and what the hell is going on.
If psychiatry tells us "It's biology" then that's really what the psychiatrists should be doing too. But don't believe that medicine is the only thing that alters biology. The food you eat, the relationships you have, the way you feel about your place in the world, past emotional wounds, trauma, ability to share difficult emotions, feeling valuable for your contributions, the amount of hugs and laughter and personal sharing etc etc--- all of these things affect your physical well being do.
PLEASE enjoy everything this new doctor has to offer, ditch the old one. Even if it were "in your head" that can affect your biology and a proper support for the way your body is struggling might be found by looking at how your body is functioning.
posted by xarnop at 11:31 AM on May 16, 2011 [3 favorites]
Nthing the recommendation to see a rheumatologist as well as keeping this new doctor. Even if it's not what's wrong with you, it will be good to rule out.
Best of luck on what may be a long journey to a diagnosis. There are advances in medical research all the time, but that doesn't mean they make it down to front line GPs quickly. If your doctor can't figure out what's wrong with you, it's time to talk to a specialist. If your doctor doesn't support seeking specialist support because "it's all in your head", it's time to change doctors.
posted by immlass at 12:04 PM on May 16, 2011
Best of luck on what may be a long journey to a diagnosis. There are advances in medical research all the time, but that doesn't mean they make it down to front line GPs quickly. If your doctor can't figure out what's wrong with you, it's time to talk to a specialist. If your doctor doesn't support seeking specialist support because "it's all in your head", it's time to change doctors.
posted by immlass at 12:04 PM on May 16, 2011
Chronic Fatigue can easily lead to what feels like a very physical, instead of emotional, depression.
Chronic Fatigue can mimic depression.
So, many health care professionals treat depression instead of CF. Many depression meds can help, so I think it's worth trying.
You've found a doctor who is good at listening; I'd stick with that doc.
I was diagnosed with CF at one point, then with Rheumatoid Arthritis(RA). What helps is getting some sunshine and fresh air as often as possible, and getting exercise as often as I can. Every bit of physical conditioning I lose, I may never get back.
Anti-depressants helped with energy, but I've hit a wall with effectiveness.
As you've read here, Your experience is real, and you deserve valid, respectful help. Good luck.
posted by theora55 at 3:29 PM on May 16, 2011
Chronic Fatigue can mimic depression.
So, many health care professionals treat depression instead of CF. Many depression meds can help, so I think it's worth trying.
You've found a doctor who is good at listening; I'd stick with that doc.
I was diagnosed with CF at one point, then with Rheumatoid Arthritis(RA). What helps is getting some sunshine and fresh air as often as possible, and getting exercise as often as I can. Every bit of physical conditioning I lose, I may never get back.
Anti-depressants helped with energy, but I've hit a wall with effectiveness.
As you've read here, Your experience is real, and you deserve valid, respectful help. Good luck.
posted by theora55 at 3:29 PM on May 16, 2011
This thread is closed to new comments.
And tell your family. If they live close by, they can help you out by going to appointments with you and taking notes, doing simple tasks like grocery shopping, and be there for emotional support.
posted by phunniemee at 8:46 PM on May 15, 2011 [10 favorites]