Chronic Fatigue Syndrome? Depression? Something else?
August 14, 2014 4:36 PM Subscribe
I'm a 31 year old male who is in "picture perfect health" according to the 10+ doctors I've seen in the past 10 months while trying to figure out what is wrong with me. Looking for someone who has had or known someone with CFS, Depression or similar symptoms to possibly provide some insight.
Symptoms
1. Malaise - Started in October of 2013. Varied in intensity day to day. Strongest at night but lasts all day. Generally a feeling of “I'm about to get sick”. That first day of a cold or flu feeling. Almost a toxic feeling running through my body, slight sore throat, general malaise feeling. Muscle ache (mainly in limbs), slight headache.
2. Fatigue - Started in December of 2013. Generally is less intense on days when malaise feeling is stronger and vice versa. The fatigued has varied in intensity from total body shut down (rare) to a fatigued/low energy feeling/want to sleep feeling (common). Muscles and whole body feel tired. Little motivation to work.
3. Depression - This started in late December for the first time and is the first I have ever experienced in my life. Have an episode about once per week now and is usually triggered by hopeless thoughts regarding my undiagonsed illness.
4. Lactose Intolerance - Started about the same time as the malaise (October 2013).
5. Weight loss - about 15 pounds since October 2013 (from 160 to 145). Maybe due to paleo diet/anti candida diet though?
Doctors seen:
*2 PCPs - All standard blood tests done. Completely normal. HIV negative.
*2 IDs - Lyme and Mono tested. Negative for both.
*Gastroenterologist - CT Scan normal, Endoscopy found minor GERD but everything else normal, Colonoscopy found benign polyps but everything else normal
*Psychologist - Said I was probably depressed but said depression wouldn't explain malaise?
*Allergist - Standard testing done. All normal.
*3 Endocrinologists - Hormone levels and other endocrine/thyroid tests normal
*Orthopaedic Surgeon - Said metal plate implant in arm was not cause of symptoms
*Acupuncturist - Month of treatment. Claimed adrenal fatigue.
*Homeopathic - Put on paleo/gluten free diet for several weeks. Symptoms still present.
*Chronic Illness Specialist - Put on anti-candida diet and anti yeast medication. Slight improvement but minor.
At this point I was wondering if I possibly had CFS? I really don't fit the criteria TOO well and can still work out at the gym most days and feel a little better after (and the next day or two there are no side effects). It is a struggle b/c I don't feel great, but I able to do it. With the lack of a real cure, I'm hoping this is not what has been troubling me.
If not CFS, could this ALL be caused by depression? I know fatigue and depression can be a chicken or the egg scenario, but what about the malaise feeling? I feel as if my depression is mild and am generally pretty happy with my life, but I guess sometimes depression is not something that can be controlled?
Any other thoughts? Doctors I should see? Some sort of specialist I have not scene? Or test I have not done?
Note: I posted a similar question a few months ago, but have new information and wanted to specifically ask about CFS and depression in hopes someone may have experience similar symptoms. Thanks for any insight you may have. I'm lost at this point.
Symptoms
1. Malaise - Started in October of 2013. Varied in intensity day to day. Strongest at night but lasts all day. Generally a feeling of “I'm about to get sick”. That first day of a cold or flu feeling. Almost a toxic feeling running through my body, slight sore throat, general malaise feeling. Muscle ache (mainly in limbs), slight headache.
2. Fatigue - Started in December of 2013. Generally is less intense on days when malaise feeling is stronger and vice versa. The fatigued has varied in intensity from total body shut down (rare) to a fatigued/low energy feeling/want to sleep feeling (common). Muscles and whole body feel tired. Little motivation to work.
3. Depression - This started in late December for the first time and is the first I have ever experienced in my life. Have an episode about once per week now and is usually triggered by hopeless thoughts regarding my undiagonsed illness.
4. Lactose Intolerance - Started about the same time as the malaise (October 2013).
5. Weight loss - about 15 pounds since October 2013 (from 160 to 145). Maybe due to paleo diet/anti candida diet though?
Doctors seen:
*2 PCPs - All standard blood tests done. Completely normal. HIV negative.
*2 IDs - Lyme and Mono tested. Negative for both.
*Gastroenterologist - CT Scan normal, Endoscopy found minor GERD but everything else normal, Colonoscopy found benign polyps but everything else normal
*Psychologist - Said I was probably depressed but said depression wouldn't explain malaise?
*Allergist - Standard testing done. All normal.
*3 Endocrinologists - Hormone levels and other endocrine/thyroid tests normal
*Orthopaedic Surgeon - Said metal plate implant in arm was not cause of symptoms
*Acupuncturist - Month of treatment. Claimed adrenal fatigue.
*Homeopathic - Put on paleo/gluten free diet for several weeks. Symptoms still present.
*Chronic Illness Specialist - Put on anti-candida diet and anti yeast medication. Slight improvement but minor.
At this point I was wondering if I possibly had CFS? I really don't fit the criteria TOO well and can still work out at the gym most days and feel a little better after (and the next day or two there are no side effects). It is a struggle b/c I don't feel great, but I able to do it. With the lack of a real cure, I'm hoping this is not what has been troubling me.
If not CFS, could this ALL be caused by depression? I know fatigue and depression can be a chicken or the egg scenario, but what about the malaise feeling? I feel as if my depression is mild and am generally pretty happy with my life, but I guess sometimes depression is not something that can be controlled?
Any other thoughts? Doctors I should see? Some sort of specialist I have not scene? Or test I have not done?
Note: I posted a similar question a few months ago, but have new information and wanted to specifically ask about CFS and depression in hopes someone may have experience similar symptoms. Thanks for any insight you may have. I'm lost at this point.
Depression isn't generally something that people have distinct "episodes" of unless they have bipolar disorder, but it doesn't sound like you have that. So I'm not sure how to interpret your explanation of how depression is presenting in your case.
posted by clockzero at 4:46 PM on August 14, 2014
posted by clockzero at 4:46 PM on August 14, 2014
I don't really have an answer for you, but I'm suffering something similar (4+ year of symptoms, lack of most of your body pains, near-constant fatigue that is sometimes manageable but causes some cognitive trouble) so I'll be watching this thread with interest. Have you seen a rheumatologist? I saw one last year when other possible causes and specialists were ruled out. He decided I likely have nothing arthritic - confirmed after my inflammatory levels were low-normal - but may be suffering from Fibromyalgia, where the fatigue is the primary symptom instead of chronic pain. He tried me on Fluoxetine for energy levels - didn't help - and said that a sleep study would be useful because he'd read about a correlation between Fibromyalgia sufferers and a disruption in brainwaves during sleep causing non-restful sleep. I haven't done the sleep study (yet) so I can't confirm if this was a useful/valid course of action for me, but it might be of interest to you.
posted by AthenaPolias at 4:50 PM on August 14, 2014 [4 favorites]
posted by AthenaPolias at 4:50 PM on August 14, 2014 [4 favorites]
You say you had standard blood tests, did these include Vitamin D deficiency? And iron?
I do want to say that my thyroid levels were in the "normal" range however I was experiencing marked fatigue from thyroid problems because they were not at the right level *for me*. Many people can still experience thyroid symptoms (hyper or hypo) while their lab tests come back within the normal range and if the doctor relies only on a lab range and not symptoms, you will not get your thyroid treated.
Also: if you're depressed you're not always aware of it, you could even be in denial of it, to state the obvious, I guess.
I hope you get better.
posted by joseph conrad is fully awesome at 4:55 PM on August 14, 2014 [3 favorites]
I do want to say that my thyroid levels were in the "normal" range however I was experiencing marked fatigue from thyroid problems because they were not at the right level *for me*. Many people can still experience thyroid symptoms (hyper or hypo) while their lab tests come back within the normal range and if the doctor relies only on a lab range and not symptoms, you will not get your thyroid treated.
Also: if you're depressed you're not always aware of it, you could even be in denial of it, to state the obvious, I guess.
I hope you get better.
posted by joseph conrad is fully awesome at 4:55 PM on August 14, 2014 [3 favorites]
Seconding malaise as a symptom of depression, with first hand experience. Depression may not be the cause of *all* your symptoms, but I'd get that treated first.
posted by Specklet at 4:56 PM on August 14, 2014
posted by Specklet at 4:56 PM on August 14, 2014
I can't tell you how many times I had symptoms like this, went to multiple doctors, meds with no results....
Once I had pain with it and the problem was ovarian cysts, which effected hormone levels and all sorts of things. Surgery.
Other than that, try supplements. I haven't been sick in years (even a cold or the flu!) since I started taking supplements. (Only when I start feeling run down. I don't take supplements every day. Just as necessary for a few days or weeks, depending.)
IANAD. I have found doctors don't give a shit about this and tend to overlook or discount deficiencies as reasons for simple symptoms. YMMV.
Could there be mold in your home, car, or workplace?
----
The only other time I had fatigue, depression, and unexplained weight loss was during the period of 9/11. While I wasn't at home (or even in the country) that day, my apartment was a little over ten blocks away.
That's all I can think of. Hope it helps unravel your mystery and you're on the road to full health soon!
posted by jbenben at 5:00 PM on August 14, 2014
Once I had pain with it and the problem was ovarian cysts, which effected hormone levels and all sorts of things. Surgery.
Other than that, try supplements. I haven't been sick in years (even a cold or the flu!) since I started taking supplements. (Only when I start feeling run down. I don't take supplements every day. Just as necessary for a few days or weeks, depending.)
IANAD. I have found doctors don't give a shit about this and tend to overlook or discount deficiencies as reasons for simple symptoms. YMMV.
Could there be mold in your home, car, or workplace?
----
The only other time I had fatigue, depression, and unexplained weight loss was during the period of 9/11. While I wasn't at home (or even in the country) that day, my apartment was a little over ten blocks away.
That's all I can think of. Hope it helps unravel your mystery and you're on the road to full health soon!
posted by jbenben at 5:00 PM on August 14, 2014
I spent 8 years going from doctor to doctor, trying to figure out wth was WRONG with me already....before a friend online said "Hey, have you read this article? It sounds like you." I printed out the list of symptoms (primary and secondary) of fibromyalgia from that article, and checked off 80% of them. Made an appointment with my PCP the next day and asked for a referral to a rheumatologist ASAP. If I remember correctly, pain in 8/18 of the pressure sensitive points was then required for a fibro diagnosis; I had pain in 18/18.
I'll second the psychiatrist, too, because nubianinthedesert is absolutely correct; malaise is indeed a symptom of depression.
posted by The Almighty Mommy Goddess at 5:02 PM on August 14, 2014 [2 favorites]
I'll second the psychiatrist, too, because nubianinthedesert is absolutely correct; malaise is indeed a symptom of depression.
posted by The Almighty Mommy Goddess at 5:02 PM on August 14, 2014 [2 favorites]
My husband was in the ICU with Lyme disease two weeks ago. He tested negative on the first test given a few days prior to his symptoms worsening (and so no antibiotics, which led to this acute presentation) and then he tested negative in the hospital. Then they tested a third time, because everyone who looked at him was like, 'christ, that's Lyme disease' and that's when we got a diagnosis. There are many other tick borne diseases. Can you find out how many Lyme tests they did, which ones, and whether they did a full panel (for the 'misc' category of Things Ticks Can Do To You)?
This is all going to be purely internet speculation, I know you understand that, but fwiw, my husband also lost fifteen pounds.
posted by A Terrible Llama at 5:02 PM on August 14, 2014 [3 favorites]
This is all going to be purely internet speculation, I know you understand that, but fwiw, my husband also lost fifteen pounds.
posted by A Terrible Llama at 5:02 PM on August 14, 2014 [3 favorites]
Have you had a sleep test? Sleep apnea, and restless leg syndrome, to name two, will rob you of deep and restful sleep and make you feel like crap. Take it from someone who has severe sleep apnea and whose CPAP changed her life.
Not everyone with apnea is overweight, and not everyone snores. Especially if you sleep alone, you could have apnea (or restless leg or another sleep disturbance) and not know it. Insist on a thorough, preferably in-lab sleep test.
posted by Rosie M. Banks at 5:03 PM on August 14, 2014 [3 favorites]
Not everyone with apnea is overweight, and not everyone snores. Especially if you sleep alone, you could have apnea (or restless leg or another sleep disturbance) and not know it. Insist on a thorough, preferably in-lab sleep test.
posted by Rosie M. Banks at 5:03 PM on August 14, 2014 [3 favorites]
Did any of the doctors check your gut bacteria? There is a growing body of evidence linking poor/out of balance intestinal bacteria and depression and other symptoms similar to what you describe.
posted by OnTheLastCastle at 5:07 PM on August 14, 2014 [1 favorite]
posted by OnTheLastCastle at 5:07 PM on August 14, 2014 [1 favorite]
Response by poster: Thanks for all the comments. It means a lot that total strangers would help like this!
OnTheLastCastle: Haven't had my gut bacteria specifically checked but have been taking a strong probiotic for a while now with no noticeable change.
Sleep related responses: I sleep with my GF about half the time and she pretty much sleeps on top of me and hasn't noticed anything. For the most part, I feel like I am a good sleeper, but will talk to a doctor about the sleep apnea possibility.
A Terrible Llama: I haven't completely ruled out Lyme yet, so will see a Lyme specialist soon.
Fibromyalgia responses: I don't feel like the pain described in the FM symptoms fit my body ache/sick feeling type symptoms. I don't really think I have tender points like that. It's more of a whole body, toxic feeling and not very strong, just bothersome.
Depression: Will definitely speak to a psychiatrist, I have been very opposed to taking antidepressants my whole life but at this point, I've had enough doctors and people tell me it's worth a try, so I think I will.
jbenben: What supplements worked for you if you don't mind me asking? Also, I think my place is mold free, but I am moving in a couple days so I guess we'll find out!
posted by kvoorhees at 5:19 PM on August 14, 2014 [1 favorite]
OnTheLastCastle: Haven't had my gut bacteria specifically checked but have been taking a strong probiotic for a while now with no noticeable change.
Sleep related responses: I sleep with my GF about half the time and she pretty much sleeps on top of me and hasn't noticed anything. For the most part, I feel like I am a good sleeper, but will talk to a doctor about the sleep apnea possibility.
A Terrible Llama: I haven't completely ruled out Lyme yet, so will see a Lyme specialist soon.
Fibromyalgia responses: I don't feel like the pain described in the FM symptoms fit my body ache/sick feeling type symptoms. I don't really think I have tender points like that. It's more of a whole body, toxic feeling and not very strong, just bothersome.
Depression: Will definitely speak to a psychiatrist, I have been very opposed to taking antidepressants my whole life but at this point, I've had enough doctors and people tell me it's worth a try, so I think I will.
jbenben: What supplements worked for you if you don't mind me asking? Also, I think my place is mold free, but I am moving in a couple days so I guess we'll find out!
posted by kvoorhees at 5:19 PM on August 14, 2014 [1 favorite]
Wait - she sleeps on top of you? I mean, literally smushing you? Could that be limiting your breathing during the night?
posted by joseph conrad is fully awesome at 5:25 PM on August 14, 2014
posted by joseph conrad is fully awesome at 5:25 PM on August 14, 2014
You mention a diet change. Have you considered that maybe the food you're eating is making things worse?
posted by chesty_a_arthur at 5:27 PM on August 14, 2014 [1 favorite]
posted by chesty_a_arthur at 5:27 PM on August 14, 2014 [1 favorite]
Response by poster: Lol that was a hyperbole of sorts but I'm just saying she would notice something. And I'm sleeping all week usually (see her on weekends). And in regards to thyroid questions, all three endocrinologist asked a million questions, reviews results, did ultrasounds and said my issues were not endocrine related.
posted by kvoorhees at 5:28 PM on August 14, 2014 [1 favorite]
posted by kvoorhees at 5:28 PM on August 14, 2014 [1 favorite]
OnTheLastCastle: Haven't had my gut bacteria specifically checked but have been taking a strong probiotic for a while now with no noticeable change.
Is it over the counter? Those aren't regulated in the US so there's no guarantee you're taking anything more than a sugar pill, unfortunately.
There's no shame in trying a low dose of an anti-depressant since your symptoms could very easily be that. I've had it going on recently and I sleep 12+ hours then after work can nap for 4+ and know exactly what you mean by that almost sick feeling hovering just over your shoulder.
posted by OnTheLastCastle at 5:29 PM on August 14, 2014
Is it over the counter? Those aren't regulated in the US so there's no guarantee you're taking anything more than a sugar pill, unfortunately.
There's no shame in trying a low dose of an anti-depressant since your symptoms could very easily be that. I've had it going on recently and I sleep 12+ hours then after work can nap for 4+ and know exactly what you mean by that almost sick feeling hovering just over your shoulder.
posted by OnTheLastCastle at 5:29 PM on August 14, 2014
OP, I remember your other questions about this. Your doctor can give you a short quiz to see of you are depressed. Mayo clinic used to have an online depression quiz, but it doesn't seem to exist anymore. :(
When Mr. Sunny recently went to the doctor due to fatigue, they checked a bunch of things, including a couple you may not have been checked for: Serotonin and testosterone.
posted by annsunny at 5:34 PM on August 14, 2014
When Mr. Sunny recently went to the doctor due to fatigue, they checked a bunch of things, including a couple you may not have been checked for: Serotonin and testosterone.
posted by annsunny at 5:34 PM on August 14, 2014
I'd continue to look at diet. You'd be amazed at how much certain foods can affect your health, particularly when the wrong types of food get into the wrong types of people. It's not just gluten (which is probably not gluten but actually fermentable, poorly absorbed, short-chain carbohydrates (FODMAPs)) and it doesn't necessarily manifest as a GI problem. Unfortunately, food intolerance is really not very well understood, and it can be incredibly difficult to identify what the culprits are.
Perhaps start keeping a food diary, noting/scoring your good days and bad days (particularly severity and timing), and see a dietitian.
Best of luck.
posted by kisch mokusch at 5:41 PM on August 14, 2014
Perhaps start keeping a food diary, noting/scoring your good days and bad days (particularly severity and timing), and see a dietitian.
Best of luck.
posted by kisch mokusch at 5:41 PM on August 14, 2014
OP: I don't know about the rest of your symptoms but gradually losing some of your ability to digest lactose in your 30s is pretty common so I'd be tempted to chalk that one up to "getting older blows".
posted by Justinian at 5:46 PM on August 14, 2014 [1 favorite]
posted by Justinian at 5:46 PM on August 14, 2014 [1 favorite]
I know you said you're a good sleeper but I have idiopathic daytime sleepiness which means that I'm tired all the time and no one knows why. At first the doctor thought I had sleep apnea but the sleep test showed that I didn't stop breathing. I took another sleep test which showed that I could take a nap basically anytime during the day and go to sleep no problem. They think that for whatever reason, my sleep is not restful so I take modafinil to help be a normal person. So that's a possibility. Good luck!
posted by kat518 at 5:47 PM on August 14, 2014 [1 favorite]
posted by kat518 at 5:47 PM on August 14, 2014 [1 favorite]
Response by poster: Justinian: Yes, definitely understand that but just thought it may tie in somehow due to it coinciding with the malaise so closely. I know a lot of immune and health issues stem from the gut.
annsunny: Ya, I've done a lot of depression tests online and they show that I am. I really don't understand how this happened b/c I feel like I should be happier than ever, but I guess this isn't something I have control of (ie Robin Williams, which really made me open my eyes)
Diet: I pretty much eat only meat, fruit and vegetables at the moment and have tried a few diff diet plans over the course of the past 6 months or so with no noticeable difference yet.
OnTheLastCastle: Sent you a PM.
posted by kvoorhees at 5:52 PM on August 14, 2014
annsunny: Ya, I've done a lot of depression tests online and they show that I am. I really don't understand how this happened b/c I feel like I should be happier than ever, but I guess this isn't something I have control of (ie Robin Williams, which really made me open my eyes)
Diet: I pretty much eat only meat, fruit and vegetables at the moment and have tried a few diff diet plans over the course of the past 6 months or so with no noticeable difference yet.
OnTheLastCastle: Sent you a PM.
posted by kvoorhees at 5:52 PM on August 14, 2014
It's worth keeping in mind that some of your symptoms could have different causes from each other.
I'm thinking about depression here in particular. You think you're depressed. Your psychologist thought you were depressed. You sure sound like you're depressed. So okay, even if the depression isn't causing your malaise, it's possible that you have depression and some sort of food sensitivity, or depression and a systemic candida thing, or etc etc etc. And trying to deal with any chronic health problems while also suffering from clinical depression is going to be a hell of a lot harder than just dealing with the health problems alone.
See a psychiatrist. Look into getting treated for depression. See what improves and what doesn't. Even if it doesn't 100% cure all of your symptoms, it may well help with a lot of them, and that's better than nothing, right?
posted by nebulawindphone at 5:57 PM on August 14, 2014 [2 favorites]
I'm thinking about depression here in particular. You think you're depressed. Your psychologist thought you were depressed. You sure sound like you're depressed. So okay, even if the depression isn't causing your malaise, it's possible that you have depression and some sort of food sensitivity, or depression and a systemic candida thing, or etc etc etc. And trying to deal with any chronic health problems while also suffering from clinical depression is going to be a hell of a lot harder than just dealing with the health problems alone.
See a psychiatrist. Look into getting treated for depression. See what improves and what doesn't. Even if it doesn't 100% cure all of your symptoms, it may well help with a lot of them, and that's better than nothing, right?
posted by nebulawindphone at 5:57 PM on August 14, 2014 [2 favorites]
Response by poster: Nebulawindphone: You're right and I've come to this same conclusion. The depression and fatigue seemed to come on around the same time, months after the malaise. So maybe those are independent of the malaise and getting rid of them would be very helpful. Thanks.
posted by kvoorhees at 6:01 PM on August 14, 2014 [2 favorites]
posted by kvoorhees at 6:01 PM on August 14, 2014 [2 favorites]
Diet: I pretty much eat only meat, fruit and vegetables at the moment
You mentioned that you're still investigating the possibility of Lyme disease, which I presume means that you're living in an area with ticks. Red meat allergy is a real phenomenon, particularly if you've been bitten by ticks. A bit left field, admittedly.
posted by kisch mokusch at 6:07 PM on August 14, 2014 [2 favorites]
You mentioned that you're still investigating the possibility of Lyme disease, which I presume means that you're living in an area with ticks. Red meat allergy is a real phenomenon, particularly if you've been bitten by ticks. A bit left field, admittedly.
posted by kisch mokusch at 6:07 PM on August 14, 2014 [2 favorites]
I was diagnosed with CFS when I was in my early 20's. I was depressed but, I could barely leave my home most days and I was in constant pain so, well, who wouldn't be depressed? CFS is a difficult diagnoses to stick with. I found that I have other things going on with me that, when treated, made the CFS a questionable diagnoses.
I am allergic to everything. Okay, exaggerating, but, I had the standard allergy tests and was told that I was not allergic to anything (bull crap) and then I had the blood test which showed me certain foods that I should avoid (I did, with much improvement). The big one, though, is that I have chemical allergies, which I was not tested for and had to figure out on my own. If I am exposed to lysol or windex products, oven cleaners, industrial glues, glade plug ins, and a whole slew of other things, I feel like I have the flu for a few days. I also have a sleep disorder where I do not reach REM easily. I figured out on my own that I need a good bit of exercise during the day (which I cannot get when I am in a reaction) to sleep at night. It took several doctors and many years to figure all of this out.
This in relation to you- examine your environment. Do you feel better at work or at home? Have you tried using a hepa filter in your bedroom, after clearing it of any possible allergens, including sheets washed with scented detergent and dryer sheets (I'm terribly allergic to dryer sheets)? Your environment may be the cause of your illness. And you may be depressed because you are ill.
posted by myselfasme at 6:15 PM on August 14, 2014 [2 favorites]
I am allergic to everything. Okay, exaggerating, but, I had the standard allergy tests and was told that I was not allergic to anything (bull crap) and then I had the blood test which showed me certain foods that I should avoid (I did, with much improvement). The big one, though, is that I have chemical allergies, which I was not tested for and had to figure out on my own. If I am exposed to lysol or windex products, oven cleaners, industrial glues, glade plug ins, and a whole slew of other things, I feel like I have the flu for a few days. I also have a sleep disorder where I do not reach REM easily. I figured out on my own that I need a good bit of exercise during the day (which I cannot get when I am in a reaction) to sleep at night. It took several doctors and many years to figure all of this out.
This in relation to you- examine your environment. Do you feel better at work or at home? Have you tried using a hepa filter in your bedroom, after clearing it of any possible allergens, including sheets washed with scented detergent and dryer sheets (I'm terribly allergic to dryer sheets)? Your environment may be the cause of your illness. And you may be depressed because you are ill.
posted by myselfasme at 6:15 PM on August 14, 2014 [2 favorites]
As a follow up, the reason I mentioned Fibromyalgia is because my rheumatologist said it can manifest with pain as not the primary symptom, or even a meaningful symptom. Essentially, Fibro is another catch-all disease, much like CFS, in that it's a name given to a general set of symptoms that seem to manifest together but the medical community doesn't understand why or how to treat the disease - and so, they treat the symptoms. You asked for specialists who may help, and you didn't list a rheumatologist among specialists you'd already seen, so this still seems like a potentially valid avenue to pursue.
posted by AthenaPolias at 6:28 PM on August 14, 2014 [2 favorites]
posted by AthenaPolias at 6:28 PM on August 14, 2014 [2 favorites]
Hey. Going against the grain here, but this is about the 5th post I've seen where it doesn't really sound like OP is that depressed, but the commenters want to harp on getting to a psychiatrist and taking anti-depressants. In practice based guidelines anti-depressant are only suppose to be used if you're symptoms are interfering with your daily activities, e.g., from going to work, to regular hygiene.
I like to think that metafilter is above astrotrufing, but it's always a good idea to skeptical on the internet. I could be completely wrong, but take the advice given with a grain of salt.
posted by jiblets at 6:43 PM on August 14, 2014 [3 favorites]
I like to think that metafilter is above astrotrufing, but it's always a good idea to skeptical on the internet. I could be completely wrong, but take the advice given with a grain of salt.
posted by jiblets at 6:43 PM on August 14, 2014 [3 favorites]
Response by poster: Yes, I will speak with a professional to determine if I am "depressed" and maybe consider medication if necessary. Very against it, but getting desperate at this point.
I broke my forearm 2 years ago and have a metal implant now. I was under GA for this operation and the symptoms sort of came about after this gradually. I also had GA for 3 colonoscopies in Jan (the GI messed up the first one and the second two were to clip perforations). So yes, lots of GA.
posted by kvoorhees at 7:10 PM on August 14, 2014
I broke my forearm 2 years ago and have a metal implant now. I was under GA for this operation and the symptoms sort of came about after this gradually. I also had GA for 3 colonoscopies in Jan (the GI messed up the first one and the second two were to clip perforations). So yes, lots of GA.
posted by kvoorhees at 7:10 PM on August 14, 2014
I had a wide set of auto-immune symptoms with a few unusual symptoms*. Lots of tests, no useful results. One doc labeled it Rheumatoid Arthritis, but with no test results throwing red flags, no treatment. I had realized I didn't tolerate dairy very well, so I stopped eating dairy. One doctor prescribed thyroid supplements, even though I tested low-normal. Thyroid supplements have few side effects and immediately gave me more energy, less constipation, less itchy skin.
In the 6-7 years since I gave up dairy, I have gotten much better. I still have some arthritis in my hands and feet, but haven't had days when just walking was really painful in quite a while. It's purely anecdata, but eliminating dairy is pretty do-able. I miss pizza and cheesy lasagna, but I like being able to walk. Maybe the dairy had nothing to do with it, but I'd rather just leave it out of my diet.
It's hard to know if depression causes chronic fatigue or chronic fatigue causes depression, but it doesn't matter. Anti-depressants help. It kind of sucks that I may be on zoloft for life, but it doesn't suck as much as crippling depression and an inability to get off the couch. It's a nice couch, but it's kind of limiting.
There are diets that claim to reduce inflammation. Inflammation is generally bad for your body, so eat your salmon, tree nuts, blueberries, etc. Reduce added sugar and empty calories (white flour, added sugar, added fats), and eat fiber and adequate protein.
I also keep showing up with low levels of Vitamin D and B vitamins, so I take supplements of both. Good luck, hang in there and keep trying to get better.
*chronic fatigue, stiff joints, symmetrical joint pain in my hands & feet, reactive airway disease/ cold-induced asthma(caused by inflammation), depression, malaise, severe telangiectasia on my feet, ankles, and beginning on my hands and wrists.
posted by theora55 at 7:19 PM on August 14, 2014
In the 6-7 years since I gave up dairy, I have gotten much better. I still have some arthritis in my hands and feet, but haven't had days when just walking was really painful in quite a while. It's purely anecdata, but eliminating dairy is pretty do-able. I miss pizza and cheesy lasagna, but I like being able to walk. Maybe the dairy had nothing to do with it, but I'd rather just leave it out of my diet.
It's hard to know if depression causes chronic fatigue or chronic fatigue causes depression, but it doesn't matter. Anti-depressants help. It kind of sucks that I may be on zoloft for life, but it doesn't suck as much as crippling depression and an inability to get off the couch. It's a nice couch, but it's kind of limiting.
There are diets that claim to reduce inflammation. Inflammation is generally bad for your body, so eat your salmon, tree nuts, blueberries, etc. Reduce added sugar and empty calories (white flour, added sugar, added fats), and eat fiber and adequate protein.
I also keep showing up with low levels of Vitamin D and B vitamins, so I take supplements of both. Good luck, hang in there and keep trying to get better.
*chronic fatigue, stiff joints, symmetrical joint pain in my hands & feet, reactive airway disease/ cold-induced asthma(caused by inflammation), depression, malaise, severe telangiectasia on my feet, ankles, and beginning on my hands and wrists.
posted by theora55 at 7:19 PM on August 14, 2014
I think you are depressed. It will cause symptoms you describe. Sometimes you won't think you are depressed but only have those symptoms. Go to primary care doctor and try a antidepressant for a few months. I'm surprised no doctor has recommended that yet. Depression can sneak up on you and you won't be aware, only that you feel crappy.
posted by nogero at 7:23 PM on August 14, 2014
posted by nogero at 7:23 PM on August 14, 2014
Response by poster: Thanks. Many, many doctors have recommended antidepressants, but I have been against them and perhaps in denial.
posted by kvoorhees at 7:24 PM on August 14, 2014
posted by kvoorhees at 7:24 PM on August 14, 2014
People can have hypothyroid issues and still be in"normal" test range, depending on which endocrinologist you ask. OP, check out hypothyroid symptoms and see if anything else fits and that's a possible route to pursue.
posted by Lardmitten at 7:30 PM on August 14, 2014
posted by Lardmitten at 7:30 PM on August 14, 2014
I've been to various doctors and have had countless bloodtests for a lot of these symptoms. If you haven't gone to a rheumatologist yet, that's a specialist you should probably see.
To be completely frank, something she might want to test you for is cancer, especially leukemia. The test will probably just be a complete blood count to see what's going on with your red blood cells and white blood cells, and a blood test for liver function. I say that because I had to have that ruled out when presenting a lot of overlapping symptoms with you. This could be a serious physiological issue, so whatever you decide about seeing a psychiatrist and/or about antidepressants, make sure that something dangerous isn't going on (or going on additional to depression, which is a possibility, too).
The digestion issues you've been having (the lactose intolerance, the weight loss) might mean you're not actually absorbing nutrients well, which could also be exacerbating (maybe causing?) your fatigue/malaise/depression. If you're slowly starving to death, that's probably going to make you feel pretty run down and horrible. So make sure that you talk to your doctor about possibilities re: digestion issues. There are a lot of autoimmune disorders that cause digestion issues, too. If you see a rheumatologist, definitely tell her about this, but tell your PCP, too.
Do you have any other really easy-to-observe/track physical symptoms? That will help your doctors narrow things down a bit. For example -- for me, a symptom that has been helpful in figuring out what's going on and whether it's getting better is that I've also been losing a ton of hair. Think about strange physical symptoms like that which might not seem urgent compared to crushing fatigue, etc, but which might be really helpful in terms of giving the doctors something to go on.
I second the idea of taking some supplements, because you might have a deficiency, especially if you have a monotonous diet (I'm also a meat/fish and veg person). Get an iron test before starting iron, especially if you're male (men tend to not need as much iron because they don't lose much on a monthly basis), because too much iron is dangerous. I'm currently taking 5K IU of Vitamin D3 and a B-complex vitamin every day, on doctor's orders, and they're both slowly, slowly seeming to do some helpful stuff for me. For example, my joints have started feeling better. Of course, I've been taking these supplements for weeks/months now -- it can take a while.
Also, I feel *much* worse when I don't take a daily OTC allergy medication for my sinuses (I take Nasacort until more permanent measures can be taken). Breathing problems will do a number on your energy and your mood, so make sure to rule out anything related to breathing. The fall start date for your problems makes me wonder if it's an allergy cycle/season.
All of this could theoretically be caused by depression, but I think you would likely be having other issues related to thinking/coping/mood if this were entirely depression. Personally, I doubt that you're going to find antidepressants to be helpful, because if your issues are primarily fatigue, indigestion/weight loss, and general physical pain/discomfort, antidepressants don't really do much about that stuff. In fact, some side effects that a lot of people get from SSRIs are increased fatigue and a decrease in appetite. If you're interested in trying them, I doubt there's any real harm in doing that, but I wouldn't personally be all that hopeful about them taking care of this particular problem.
Of course, I'm not a doctor -- just a patient myself!
posted by rue72 at 7:36 PM on August 14, 2014 [3 favorites]
To be completely frank, something she might want to test you for is cancer, especially leukemia. The test will probably just be a complete blood count to see what's going on with your red blood cells and white blood cells, and a blood test for liver function. I say that because I had to have that ruled out when presenting a lot of overlapping symptoms with you. This could be a serious physiological issue, so whatever you decide about seeing a psychiatrist and/or about antidepressants, make sure that something dangerous isn't going on (or going on additional to depression, which is a possibility, too).
The digestion issues you've been having (the lactose intolerance, the weight loss) might mean you're not actually absorbing nutrients well, which could also be exacerbating (maybe causing?) your fatigue/malaise/depression. If you're slowly starving to death, that's probably going to make you feel pretty run down and horrible. So make sure that you talk to your doctor about possibilities re: digestion issues. There are a lot of autoimmune disorders that cause digestion issues, too. If you see a rheumatologist, definitely tell her about this, but tell your PCP, too.
Do you have any other really easy-to-observe/track physical symptoms? That will help your doctors narrow things down a bit. For example -- for me, a symptom that has been helpful in figuring out what's going on and whether it's getting better is that I've also been losing a ton of hair. Think about strange physical symptoms like that which might not seem urgent compared to crushing fatigue, etc, but which might be really helpful in terms of giving the doctors something to go on.
I second the idea of taking some supplements, because you might have a deficiency, especially if you have a monotonous diet (I'm also a meat/fish and veg person). Get an iron test before starting iron, especially if you're male (men tend to not need as much iron because they don't lose much on a monthly basis), because too much iron is dangerous. I'm currently taking 5K IU of Vitamin D3 and a B-complex vitamin every day, on doctor's orders, and they're both slowly, slowly seeming to do some helpful stuff for me. For example, my joints have started feeling better. Of course, I've been taking these supplements for weeks/months now -- it can take a while.
Also, I feel *much* worse when I don't take a daily OTC allergy medication for my sinuses (I take Nasacort until more permanent measures can be taken). Breathing problems will do a number on your energy and your mood, so make sure to rule out anything related to breathing. The fall start date for your problems makes me wonder if it's an allergy cycle/season.
All of this could theoretically be caused by depression, but I think you would likely be having other issues related to thinking/coping/mood if this were entirely depression. Personally, I doubt that you're going to find antidepressants to be helpful, because if your issues are primarily fatigue, indigestion/weight loss, and general physical pain/discomfort, antidepressants don't really do much about that stuff. In fact, some side effects that a lot of people get from SSRIs are increased fatigue and a decrease in appetite. If you're interested in trying them, I doubt there's any real harm in doing that, but I wouldn't personally be all that hopeful about them taking care of this particular problem.
Of course, I'm not a doctor -- just a patient myself!
posted by rue72 at 7:36 PM on August 14, 2014 [3 favorites]
If you and your doctor decide an antidepressant is an option, my experience here also may be of some help. This same rheumatologist I've mentioned above put me on Fluoxetine (which is Prozac) for a two-month trial to see if it helped with the energy, primarily. Serotonin is a crucial chemical in your brain, and any interference with i can cause any number of issues - such as fatigue, etc - so perhaps thinking of an SSRI as an "anti-depressant" is enabling your resistance to trying it, whereas thinking of it as what it is - an SSRI, or a medication that addresses a basic chemical imbalance - could help. Incidentally, that two month course was interesting from an experiential standpoint, but it also allowed me to determine that I do not, in fact, need an SSRI and am not chemically depressed, which is an important datapoint when dealing with an otherwise amorphous disorder. Think of the data you can gather more than any other connotations you may have with the general class of drugs, and that may help.
posted by AthenaPolias at 7:37 PM on August 14, 2014
posted by AthenaPolias at 7:37 PM on August 14, 2014
It's possible you have one of the more unusual conditions discussed here, but the overwhelmingly likely possibility is that you have depression, a relatively common condition which would explain all of your documented symptoms. It's not a terrible or frightening thing, it doesn't mean there's something fundamentally wrong with you, it's not a failure on your part. It's just depression. You will be OK. It can take a while to find the right combo of meds + therapy + lifestyle changes to treat it, but that's fine and you can engage your mind by being a detective and trying to work out what your options are. GA can cause depression. Treat your depression like crazy (as in, not just one antidepressant, not just one therapist, if they don't work find new ones) before you start looking everywhere for zebras.
posted by Acheman at 1:20 AM on August 15, 2014
posted by Acheman at 1:20 AM on August 15, 2014
I'm coming to say that I've been battling similar symptoms and mine is definitely tick-borne. What has helped? A long course of doxycycline and lots of raw garlic. I am also pursuing other remedies.
posted by lakersfan1222 at 5:58 AM on August 15, 2014
posted by lakersfan1222 at 5:58 AM on August 15, 2014
Did anyone test your a1c? This sounds a LOT like diabetes. If they haven't, a $20 over the counter test your favorite big box store will give quick results.
Your glucose could look basically ok on test days (fasting, etc), but completely off at other times. An A1C test is a measure of your last couple of months.
posted by moshjosh at 8:04 AM on August 15, 2014
Your glucose could look basically ok on test days (fasting, etc), but completely off at other times. An A1C test is a measure of your last couple of months.
posted by moshjosh at 8:04 AM on August 15, 2014
I realize you tried a GF diet, but formal celiac testing may be in order. Did you use new cutting boards, colander, etc during the GF diet? Any autoimmune diseases in your family medical history?
Do you have any tests indicating nutrient deficiencies, possible malabsorption?
vitamin D levels?
MTHFR? could impact depression
histamine intolerance?
Good luck with your research.
posted by egk at 8:33 AM on August 15, 2014
Do you have any tests indicating nutrient deficiencies, possible malabsorption?
vitamin D levels?
MTHFR? could impact depression
histamine intolerance?
Good luck with your research.
posted by egk at 8:33 AM on August 15, 2014
Response by poster: Thank you for all the ideas! I will investigate them all further. Definitely gives me some hope! If anyone else has ideas, feel free to throw them out there but I think this should keep me busy for a while! Thanks again.
posted by kvoorhees at 11:12 AM on August 15, 2014 [1 favorite]
posted by kvoorhees at 11:12 AM on August 15, 2014 [1 favorite]
There's some evidence that general anesthesia can bring on depression. Ditto lyme disease. There are a lot of possibilities being thrown around. Given your surgeries you've probably also been on antibiotics which could have done a number on your gut microbiome. Probiotics may not help much. Lots of veg and fruit might.
All these things are under investigation, but far from decided though.
Getting on depression meds may help reset things, but I'd look at the old standbys of food, exercise and adequate sleep.
posted by idb at 12:12 PM on August 15, 2014
All these things are under investigation, but far from decided though.
Getting on depression meds may help reset things, but I'd look at the old standbys of food, exercise and adequate sleep.
posted by idb at 12:12 PM on August 15, 2014
This thread is closed to new comments.
posted by nubianinthedesert at 4:45 PM on August 14, 2014 [16 favorites]