What kind of doctor can help diagnose my issue with fatigue and pain?
July 28, 2012 7:01 AM Subscribe
What kind of doctor can help diagnose my issue with fatigue and pain?
I've been suffering from fatigue, chronic pain, and weakness, plus a slew of other lesser symptoms, and though I've seen plenty of specialists, none of the doctors I've seen know what is wrong. My primary care doctor is out of ideas and now I'm revisiting previous doctors to see if they have any suggestions. So far I've seen a sleep doctor, rheumatologist, urologist, nephrologist, neurologist, and endocrinologist. One possible diagnosis that has been brought up is fibromyalgia, but the rheumatologist didn't think so because I did not have the tender points. Where else can I go to seek answers? I feel like there should be a discipline or practice type that works on these hard to define cases, but I'm at a lost as to what to look for. When I try to look for doctors that specialize in chronic fatigue and fibromyalgia, I find a lot of quacks and woo doctors that practice alternative "medicine". I'm hoping to find comprehensive doctor that practices evidence based medicine, but is going to be really looking at outlier cases and causes, since the obvious causes have been ruled out by the doctors I've seen so far.
I don't even know that fibromyalgia is the cause, but it was suggested by my neurologist I see someone that specializes in those conditions, as in the process of diagnosing it, they might be able to either rule it out definitively, or confirm that it is. Unfortunately the one doctor my neurologist recommended no longer sees fibromyalgia patients. From my searching, rheumatologists in the area that work with fibromyalgia patients don't specialize in it.
If it helps, I'm in Milwaukee, WI. I'm not working and broke so I'm trying to find someplace close to home that maybe insurance would cover.
I've been suffering from fatigue, chronic pain, and weakness, plus a slew of other lesser symptoms, and though I've seen plenty of specialists, none of the doctors I've seen know what is wrong. My primary care doctor is out of ideas and now I'm revisiting previous doctors to see if they have any suggestions. So far I've seen a sleep doctor, rheumatologist, urologist, nephrologist, neurologist, and endocrinologist. One possible diagnosis that has been brought up is fibromyalgia, but the rheumatologist didn't think so because I did not have the tender points. Where else can I go to seek answers? I feel like there should be a discipline or practice type that works on these hard to define cases, but I'm at a lost as to what to look for. When I try to look for doctors that specialize in chronic fatigue and fibromyalgia, I find a lot of quacks and woo doctors that practice alternative "medicine". I'm hoping to find comprehensive doctor that practices evidence based medicine, but is going to be really looking at outlier cases and causes, since the obvious causes have been ruled out by the doctors I've seen so far.
I don't even know that fibromyalgia is the cause, but it was suggested by my neurologist I see someone that specializes in those conditions, as in the process of diagnosing it, they might be able to either rule it out definitively, or confirm that it is. Unfortunately the one doctor my neurologist recommended no longer sees fibromyalgia patients. From my searching, rheumatologists in the area that work with fibromyalgia patients don't specialize in it.
If it helps, I'm in Milwaukee, WI. I'm not working and broke so I'm trying to find someplace close to home that maybe insurance would cover.
I would agree with doing what pie ninja says, mainly because I don't have any great answers to your question aside from going to the Mayo Clinic (they specialize in hard to diagnose cases and they aren't too far from you, but probably not ideal for your uninsured situation). If you were to go there the best move would be to see the primary care internal medicine clinic and let them sort it from there.
posted by treehorn+bunny at 8:05 AM on July 28, 2012
posted by treehorn+bunny at 8:05 AM on July 28, 2012
I work in healthcare please see a pain psychologist and a pain physician but not the kind that get you hooked on meds...where do you live perhaps I can recommend? You should get blood work too.
posted by irish01 at 8:29 AM on July 28, 2012
posted by irish01 at 8:29 AM on July 28, 2012
Omg your in Milwaukee? See Advanced Pain Management...Dr. More O' Ferrall.
posted by irish01 at 8:30 AM on July 28, 2012 [1 favorite]
posted by irish01 at 8:30 AM on July 28, 2012 [1 favorite]
IAAD, IANYD, etc.
It sounds like you have really worked hard at investigating what has caused this, and the specialists you went to seem fairly reasonably picked, in that disorders with any or all of those systems can cause weakness like you're describing. A gastroenterologist might be a thought, but I think honestly the jury is still out on gluten sensitivities, etc.
However, right now you're at that uncomfortable point where they have tested for a lot of known things, and you're left with the things for which there are no tests yet, and that is incredibly frustrating. You may not have a diagnosis any time soon, which leaves you grappling with the unknown. (This is one of those truths about medicine that doctors don't mention; we are unable to give a diagnosis more often than we'd like.)
You could indeed consider the Mayo Clinic, however, given the thorough-appearing evaluation you have had thus far (and I don't know your actual results, etc), I am guessing that you could possibly end up with minimal returns for what would potentially be an expensive trip. Your health is more important than money, but they often will start from scratch with new patients, which is good in theory but can lead to a lot of expensive duplication. Unless they are going to do something that you cannot get near home, or have technology you cannot get near home, I'd think hard before going. It is an excellent place, but not a guarantee. (Disclaimer: I worked there before before I came here.) If you do decide to go, I agree to make their internal medicine clinic your "point-man" for coordinating visits with other specialties.
That being the case, what do you do for now? I totally agree with the idea of a Pain Management Doctor, because if at the end of the day we don't have a way to test for what you have, you still have to live with the pain and the fatigue for now! Pain Management docs specialize in the "so how do I stay functional?" question, and not all of the answers involve medication. Then there are the things that everyone knows is "good for them" - good sleep, good nutrition, as much exercise as you can handle even if it's only a short walk to get some fresh air.
I'm sorry you feel so lousy; good luck!
posted by vetala at 9:39 AM on July 28, 2012 [2 favorites]
It sounds like you have really worked hard at investigating what has caused this, and the specialists you went to seem fairly reasonably picked, in that disorders with any or all of those systems can cause weakness like you're describing. A gastroenterologist might be a thought, but I think honestly the jury is still out on gluten sensitivities, etc.
However, right now you're at that uncomfortable point where they have tested for a lot of known things, and you're left with the things for which there are no tests yet, and that is incredibly frustrating. You may not have a diagnosis any time soon, which leaves you grappling with the unknown. (This is one of those truths about medicine that doctors don't mention; we are unable to give a diagnosis more often than we'd like.)
You could indeed consider the Mayo Clinic, however, given the thorough-appearing evaluation you have had thus far (and I don't know your actual results, etc), I am guessing that you could possibly end up with minimal returns for what would potentially be an expensive trip. Your health is more important than money, but they often will start from scratch with new patients, which is good in theory but can lead to a lot of expensive duplication. Unless they are going to do something that you cannot get near home, or have technology you cannot get near home, I'd think hard before going. It is an excellent place, but not a guarantee. (Disclaimer: I worked there before before I came here.) If you do decide to go, I agree to make their internal medicine clinic your "point-man" for coordinating visits with other specialties.
That being the case, what do you do for now? I totally agree with the idea of a Pain Management Doctor, because if at the end of the day we don't have a way to test for what you have, you still have to live with the pain and the fatigue for now! Pain Management docs specialize in the "so how do I stay functional?" question, and not all of the answers involve medication. Then there are the things that everyone knows is "good for them" - good sleep, good nutrition, as much exercise as you can handle even if it's only a short walk to get some fresh air.
I'm sorry you feel so lousy; good luck!
posted by vetala at 9:39 AM on July 28, 2012 [2 favorites]
Don't get mad at the suggestion, but I would recommend a psychiatrist given the history and work-up you have had with no other results.
posted by karlos at 2:58 PM on July 28, 2012
posted by karlos at 2:58 PM on July 28, 2012
It sounds like you are hoping to find a highly skilled diagnostician. Unfortunately, my experience with unusual chronic illness has been that there are few of the sleuthing Dr. Houses of the popular imagination.
Chronic fatigue syndrome, unfortunately, does not have a home among the specialties, so it can be very easy for patients to fall through the cracks. Fibro, as you've found, is usually thrown in with rheumatology.
Co-Cure, which is a support group for patients with CFS and fibro, maintains a Good Doctors List. Here are the listings for Wisconsin.
If CFS is on the table, while there is not *a* test for CFS, there *are* tests that show abnormalities in many CFS patients. The National Alliance for Myalgic Encephalomyelitis (which is what you would hear CFS called in some other English-speaking countries and among many patients in the U.S.) has a list of the test abnormalities on this page.
I have had CFS for eight years and am mostly bedridden, although I've made some significant recovery in the last three years with the help of a CFS specialist who has been treating the illness for 25 years (he's in Asheville, NC). I say that not to frighten you but to indicate that I understand how scary and disruptive these symptoms can be in one's life.
For what it's worth, Mayo has a bad reputation among patients with CFS specifically, and I have a personal friend severely ill with it and who has several other medical problems who was treated terribly callously there. If you have "just" fibro, Mayo is probably serious overkill.
Feel free to MeMail or email me if you like.
posted by jocelmeow at 4:48 PM on July 28, 2012
Chronic fatigue syndrome, unfortunately, does not have a home among the specialties, so it can be very easy for patients to fall through the cracks. Fibro, as you've found, is usually thrown in with rheumatology.
Co-Cure, which is a support group for patients with CFS and fibro, maintains a Good Doctors List. Here are the listings for Wisconsin.
If CFS is on the table, while there is not *a* test for CFS, there *are* tests that show abnormalities in many CFS patients. The National Alliance for Myalgic Encephalomyelitis (which is what you would hear CFS called in some other English-speaking countries and among many patients in the U.S.) has a list of the test abnormalities on this page.
I have had CFS for eight years and am mostly bedridden, although I've made some significant recovery in the last three years with the help of a CFS specialist who has been treating the illness for 25 years (he's in Asheville, NC). I say that not to frighten you but to indicate that I understand how scary and disruptive these symptoms can be in one's life.
For what it's worth, Mayo has a bad reputation among patients with CFS specifically, and I have a personal friend severely ill with it and who has several other medical problems who was treated terribly callously there. If you have "just" fibro, Mayo is probably serious overkill.
Feel free to MeMail or email me if you like.
posted by jocelmeow at 4:48 PM on July 28, 2012
A couple other things I forgot to mention:
First: when I was sick, I found Bruce Campbell's Recovery from Chronic Fatigue extremely helpful -- I didn't have CFS, but I had a different vague, unhelpful diagnosis, and I found his take on dealing with CFS extremely heartening and useful when handling the day-to-day.
Second: Are you tracking symptoms? If not, that's something to consider -- at the very least, it would give your next doctors more information. Track things like weather, food, exercise and activity levels, length and quality of sleep, pain and energy levels, etc. Sometimes it's much easier to see a pattern when it's written down.
posted by pie ninja at 6:23 PM on July 28, 2012
First: when I was sick, I found Bruce Campbell's Recovery from Chronic Fatigue extremely helpful -- I didn't have CFS, but I had a different vague, unhelpful diagnosis, and I found his take on dealing with CFS extremely heartening and useful when handling the day-to-day.
Second: Are you tracking symptoms? If not, that's something to consider -- at the very least, it would give your next doctors more information. Track things like weather, food, exercise and activity levels, length and quality of sleep, pain and energy levels, etc. Sometimes it's much easier to see a pattern when it's written down.
posted by pie ninja at 6:23 PM on July 28, 2012
Anon, if you want to know who the "big guns" are in CFS treatment specifically, the ME/CFS Wiki has a list. These are the super-specialists who patients travel significant distances to see.
And I just want to say that while there are definitely some "woo-woo" doctors out there in this area, because CFS has no FDA-approved treatments, some of the things that are used and help some folks, like certain supplements, might come across as woo-woo if you've never encountered them before.
posted by jocelmeow at 5:37 AM on July 29, 2012
And I just want to say that while there are definitely some "woo-woo" doctors out there in this area, because CFS has no FDA-approved treatments, some of the things that are used and help some folks, like certain supplements, might come across as woo-woo if you've never encountered them before.
posted by jocelmeow at 5:37 AM on July 29, 2012
Hello Anonymous
I've been dealing with CF?/Fibro?/RA? for @ 15 years. I had a GP who was terrific, but he moved to a practice that doesn't accept my insurance, next terrific doc was a GP who moved out of state(are they avoiding me?). Current doc is a GP who is willing to try lots of tests, lots of referrals, and will work with me on tests, treatment, and ideas. Not a match made in Heaven, but better than the ones in between. Doc-shop for someone who listens and finds you credible.
I don't like taking meds, but 3 things have really helped: Vitamin D - I tested really low, and am taking a prescription dose. Thyroid supplement - perscribed even though my tests were ok. Adderall - I have adult ADD, and have always coped pretty well, but the extended release is a huge help for both ADD and fatigue. It's helped me get moving more, which helps keep my joints from seizing up, and helps with energy. Plus, the fatigue was so bad, I was afraid I wouldn't be able to work.
Does depression cause chronic fatigue or does chronic fatigue, pain, and loss of lifestyle cause depression? Who cares. If anti-depressants help, take them.
That Bruce Campbell site that pieninja cites looks good. Good luck.
posted by theora55 at 7:57 AM on July 29, 2012
I've been dealing with CF?/Fibro?/RA? for @ 15 years. I had a GP who was terrific, but he moved to a practice that doesn't accept my insurance, next terrific doc was a GP who moved out of state(are they avoiding me?). Current doc is a GP who is willing to try lots of tests, lots of referrals, and will work with me on tests, treatment, and ideas. Not a match made in Heaven, but better than the ones in between. Doc-shop for someone who listens and finds you credible.
I don't like taking meds, but 3 things have really helped: Vitamin D - I tested really low, and am taking a prescription dose. Thyroid supplement - perscribed even though my tests were ok. Adderall - I have adult ADD, and have always coped pretty well, but the extended release is a huge help for both ADD and fatigue. It's helped me get moving more, which helps keep my joints from seizing up, and helps with energy. Plus, the fatigue was so bad, I was afraid I wouldn't be able to work.
Does depression cause chronic fatigue or does chronic fatigue, pain, and loss of lifestyle cause depression? Who cares. If anti-depressants help, take them.
That Bruce Campbell site that pieninja cites looks good. Good luck.
posted by theora55 at 7:57 AM on July 29, 2012
This thread is closed to new comments.
I was in a similar situation last year. What (eventually) worked for me, once the doctors and specialists had ruled out all of the obvious big-deal causes, was researching things myself and trying things until I found something that worked. (It ended up being diet/deficiency based -- total surprise, because my doctor had said my diet sounded fine, good actually compared to that of most Americans.)
I should note that the things I was trying were along the lines of exercise, dietary changes, lower doses only on supplements -- nothing major. I did talk to the doctor before making potentially significant changes (like increasing my prescribed Vitamin D dose) or to ask for specific tests they hadn't already run (like a blood lead level, since I had potential occupational exposure and it wasn't something they had thought of).
I've been there, and it sucks -- you have my sympathies. Good luck.
posted by pie ninja at 7:26 AM on July 28, 2012 [1 favorite]