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Anyone been diagnosed with Chronic Fatigue syndrome? I feel like maybe my symptoms are not due to depression. I do not want to start more meds because they don't solve the root problem. My mood is stable.

Symptoms: I lay in bed for hours, everything is draining, exhausting despite sleeping 10+ hours every night....Brain Fog....Moving Slow like I'm carrying lead.....Dry eye syndrome (I have RX for this)....Dry itchy skin (I have RX lotion for this)...Cold feet.....Low Blood pressure.....

I want to pursue other medical tests to rule out other causes. Tests so far:

Thyroid + antibodies (normal)

Vitamin D & Folate (normal after supplementation)

Iron (normal- but slightly low end)

Nutrition (I eat protein daily, healthy diet, avoid sugar)

I know I need to exercise again, but lately due to this lethargy I am really struggling to even shower and cook... it's totally debilitating.

 

My GP suggested maybe a Sleep test (although I don't snore in sleep). I will be getting some Cardio function tests. I'm ordering a sun lamp. is there anything else I could get checked out?

 

 

Edited by Blahblah

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49 minutes ago, Blahblah said:

My GP suggested maybe a Sleep test (although I don't snore in sleep). I will be getting some Cardio function tests. I'm ordering a sun lamp. is there anything else I could get checked out?

Here's a link I found, that lists all the tests you could get done, when trying to diagnose chronic fatigue syndrome:

https://labtestsonline.org/conditions/chronic-fatigue-syndrome

You have already done some of the recommended tests, but there are more.....Also, you might think about asking your GP for a referral to a neurologist or a rheumatologist.........Sometimes these types of specialists might be better at diagnosing Chronic Fatigue Syndrome.

Edited by CrazyRedhead
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It's now called "myalgic encephalomyelitis" because they feel it more closely represents the etiology of the condition.

Two symptoms I remember was exercise intolerance and flareups when getting sick. Do you have these too?

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2 hours ago, CrazyRedhead said:

Here's a link I found, that lists all the tests you could get done, when trying to diagnose chronic fatigue syndrome:

https://labtestsonline.org/conditions/chronic-fatigue-syndrome

You have already done some of the recommended tests, but there are more.....Also, you might think about asking your GP for a referral to a neurologist or a rheumatologist.........Sometimes these types of specialists might be better at diagnosing Chronic Fatigue Syndrome.

Thanks CR .... This lists a variety of tests to do. I wouldn't say that the duration has been 6 months though.  It seems really bad the darker & colder it gets. Doctors all tell me its depression and/or stress because nothing in my blood tests indicate any sort of physical problem. 

44 minutes ago, mikl_pls said:

It's now called "myalgic encephalomyelitis" because they feel it more closely represents the etiology of the condition.

Two symptoms I remember was exercise intolerance and flareups when getting sick. Do you have these too?

Thanks @mikl_pls I never get sick actually, maybe once per winter. I only had a bit of a cold/sore lymph nodes a month ago, after taking a long flight, but was over it in about a week. I don't think I have exercise intolerance. I have some dizziness and get out of breath fairly quickly. 

I mainly feel drained and out of shape (its been months since really exercising or going to gym). Months ago, when I was running, I would get a very high pulse rate pretty quickly. Stimulants raise my resting hard rate, which is normal i suppose...

I just started my stimulant again (after a 2-month break). I was hoping it would turn things around....maybe in the next week?

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3 hours ago, Blahblah said:

Anyone been diagnosed with Chronic Fatigue syndrome? I feel like maybe my symptoms are not due to depression. I do not want to start more meds because they don't solve the root problem. My mood is stable.

Symptoms: I lay in bed for hours, everything is draining, exhausting despite sleeping 10+ hours every night....Brain Fog....Moving Slow like I'm carrying lead.....Dry eye syndrome (I have RX for this)....Dry itchy skin (I have RX lotion for this)...Cold feet.....Low Blood pressure.....

I know this won't solve all your problems, but are you drinking water? I feel largely like you feel so I know that's not a miracle answer, but I know that when I make a point of drinking water throughout the day it helps a bit with energy and focus (and personally I can use every bit of energy that comes my way). Otherwise, I sympathize.

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Thanks @Unstrung Harp True. I do drink water during the day, but could definitely drink more though. It does make a bit of a difference. I realised its right about that fun time of month too... that could be really whats really killing me this week. meh.

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I believe central sleep apnea is less common than the obstructive sleep apnea most people associate with overweight people and/or snorers but it's a real thing and also very bad for you. Also, periodic limb movement disorder (PLMD) and RLS are real things. My sleep study confirmed I'm an excellent sleeper with lots of periodic limb movements (yes, it's true, I've always been made aware by those who have shared my bed that I kick people in my sleep and toss and turn). However, I don't have PLMD because my movements didn't interrupt my brain waves or sleep or whatever they measure.

I got just about everything tested some years back. Keep in mind I had extreme fatigue, weight gain, and idiopathic hypersomnia (also extreme dry eye and dry mouth but that later just turned out to be a side effect of some drug I was trialing). I saw the rheumatologist to rule out lupus, sjogrens, etc. I got a brain mri w/ and w/o contrast but didn't go so far as to get a pituitary MRI (I guess my pdoc figured the overall one would be sufficient). I saw the endocrinologist who did routine bloodwork and thyroid tests, as well as cortisone tests to rule out (I believe) cushings. For the cortisol stuff, I was offered either the storing your pee in the big red refrigerator jug over the course of 24 hours and then racing to the lab with it and/or saliva test swabs. She was out of the saliva test swab stuff so I just got the big red jug to collect all my pee in and store in the refrigerator. Got the overnight sleep test done as mentioned, but not the daytime sleep study (multiple sleep latency test) which would have been the next step in the natural progression of things.

From all this I learned I sleep great, have a perfect brain specimen, everything normal EXCEPT the routine bloodwork the endocrinologist did caught part of my issues which turned out to be super boring and mundane--single digit Vitamin D levels and single-digit ferritin levels. So I started taking iron every day or every other day and copious amounts of vitamin D and that at least solved my issue of feeling like I was trapped in a 90-year-old's body as far as not being able to walk to the back of a big box store without suffering severe exhaustion. I mean, I was in rough shape. I could barely walk anywhere without feeling like I would faint. I told my pdoc I felt like I had dropped serious IQ points because I just couldn't think right or fast. I was becoming stupider and weaker by the day.

Unfortunately the Vit D and iron supplements did not solve the issue of my sleeping more than most people and being just generally tired and/or depressed all the time but at least I got relief from the worst physical symptoms. At least after all this though, I could give up the search for some underlying non-psychological illness causing my symptoms.

Strangely no one has ever mentioned CFS/ME to me as a possible diagnosis except my primary care doctor always puts it as my diagnosis in my chart that I can see on my after visit summary notes. (She also includes my psych diagnoses too by CFS is usually right on top). She's never mentioned CFS/ME to me though and I've never mentioned it to her. Not sure why she puts it down. Maybe because it's easier to get medicare to pay for certain blood tests? I don't have exercise intolerance so if that's a main feature, I doubt I have CFS/ME. Anyways, I went from be a healthy, fit 30-year-old to a total mess in about a year or two. But, I also had some major life stressors, effexor might have pooped out on me, etc. But the only person who seemed to believe me was my pdoc because I never saw doctors except for her over the years so she was the only one who could really vouch for the person I was before compared to the person I was after and advocate for me that something was clearly wrong/different.

Sorry if none of my relating of my experience is helpful to you.

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On 1/30/2020 at 1:40 AM, aquarian said:

I got just about everything tested some years back. Keep in mind I had extreme fatigue, weight gain, and idiopathic hypersomnia (also extreme dry eye and dry mouth but that later just turned out to be a side effect of some drug I was trialing). I saw the rheumatologist to rule out lupus, sjogrens, etc. I got a brain mri w/ and w/o contrast but didn't go so far as to get a pituitary MRI (I guess my pdoc figured the overall one would be sufficient). I saw the endocrinologist who did routine bloodwork and thyroid tests, as well as cortisone tests to rule out (I believe) cushings. For the cortisol stuff, I was offered either the storing your pee in the big red refrigerator jug over the course of 24 hours and then racing to the lab with it and/or saliva test swabs. She was out of the saliva test swab stuff so I just got the big red jug to collect all my pee in and store in the refrigerator. Got the overnight sleep test done as mentioned, but not the daytime sleep study (multiple sleep latency test) which would have been the next step in the natural progression of things.

From all this I learned I sleep great, have a perfect brain specimen, everything normal EXCEPT the routine bloodwork the endocrinologist did caught part of my issues which turned out to be super boring and mundane--single digit Vitamin D levels and single-digit ferritin levels. So I started taking iron every day or every other day and copious amounts of vitamin D and that at least solved my issue of feeling like I was trapped in a 90-year-old's body as far as not being able to walk to the back of a big box store without suffering severe exhaustion. I mean, I was in rough shape. I could barely walk anywhere without feeling like I would faint. I told my pdoc I felt like I had dropped serious IQ points because I just couldn't think right or fast. I was becoming stupider and weaker by the day.

Unfortunately the Vit D and iron supplements did not solve the issue of my sleeping more than most people and being just generally tired and/or depressed all the time but at least I got relief from the worst physical symptoms. At least after all this though, I could give up the search for some underlying non-psychological illness causing my symptoms.

Strangely no one has ever mentioned CFS/ME to me as a possible diagnosis except my primary care doctor always puts it as my diagnosis in my chart that I can see on my after visit summary notes. (She also includes my psych diagnoses too by CFS is usually right on top). She's never mentioned CFS/ME to me though and I've never mentioned it to her. Not sure why she puts it down. Maybe because it's easier to get medicare to pay for certain blood tests? I don't have exercise intolerance so if that's a main feature, I doubt I have CFS/ME.

Anyways, I went from be a healthy, fit 30-year-old to a total mess in about a year or two. But, I also had some major life stressors, effexor might have pooped out on me, etc. But the only person who seemed to believe me was my pdoc because I never saw doctors except for her over the years so she was the only one who could really vouch for the person I was before compared to the person I was after and advocate for me that something was clearly wrong/different.

Sorry if none of my relating of my experience is helpful to you.

@aquarian  Thank you! This is helpful...Seems we have the same issue. I've done many tests also (including MRI 4 years ago, to check whether i had pituitary tumor) My Obgyn at that time said my SSRI (citalopram) was most likely increasing Prolactin, which in turn was effecting my Thyroid (which had become subclinical hypo). I guess its not only A/Ps that raise Prolactin. Serotonin (SSRIs and SNRIs) can cause it to raise, leading to possible sluggishness, fatigue. My thyroid tests have all been normal the last year though. I have had no change in weight for nearly 15 years....

It's a mystery. My GP is having me do some other tests (I don't even know which) but everything is coming up totally normal. I just took my 80,000 units of vitamin D yesterday (I take the superdose every 3 months).

I haven't had my cardio or sleep test done, should I do a Lupus or Sjorns test? I really doubt I have either of those rare diseases. I've never been a morning person, but the fatigue/napping in afternoon has really become much worse since November...and its not due to any more stress.

I'm beginning to think maybe the Effexor is contributing...I started it 9 months ago. I'm only on 75mg, because higher doses give more side effects....But it helps so much with depression I hate to go off it. I've tried literally every SSRI and SNRI (and they all have sleepy side effect, some like Citalopram, are worse than others)

On 2/3/2020 at 8:00 PM, Sephiroth999 said:

Content removed by Moderator.

The symptoms definitely apply...but I already eat very healthy (no junk food, no sugar, no fried food, little dairy except plain greek yogurt)...

Does Ashwagahnda really help? Or Ginseng? I drink Ginger tea a lot, but you probably have to drink LOADS of it for years for a tea to make much effect... I've tried lots of natural supplements, vitamins, amino acids, and they never really make a very noticeable difference. I have a tough time taking more that 6 pills/meds/vitamins every day. I'd be willing to add supplements again if they have proven benefit.

Edited by Cerberus

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On 2/4/2020 at 7:24 AM, Sephiroth999 said:

Content removed by Moderator.

Is "Jade Screen" a Chinese herbal formula? Like the kind you must take 3 times per day?

I have really low blood pressure (like I often get dizzy bending over), I don't know if I need to worry about a supplement increasing it? I wish I could at least find a good quality multi-vitamin so I didn't have to take all vitamins separately 😞

Edited by Cerberus

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Keep in mind there is some debate about whether supplements do anything at all, or anything close to what they advertise. (otc supplements i mean) 

I was like you when I was on SSRIs. The worst was sertraline. On 300mg bupropion I feel normal and can do stuff. This is why I got off SSRIs completely... Well one reason. I was checked for EVERYTHING that would cause fatigue and nothing ever came up. 

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My understanding is that CFS is an autoimmune disease?

 

Some form of AI disease would also make sense, since you report rarely catching flu etc. If there is an upside to autoimmune diseases, it is avoiding most viruses and infection 

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7 hours ago, Blahblah said:

@aquarian  Thank you! This is helpful...Seems we have the same issue. I've done many tests also (including MRI 4 years ago, to check whether i had pituitary tumor) My Obgyn at that time said my SSRI (citalopram) was most likely increasing Prolactin, which in turn was effecting my Thyroid (which had become subclinical hypo). I guess its not only A/Ps that raise Prolactin. Serotonin (SSRIs and SNRIs) can cause it to raise, leading to possible sluggishness, fatigue. My thyroid tests have all been normal the last year though. I have had no change in weight for nearly 15 years....

It's a mystery. My GP is having me do some other tests (I don't even know which) but everything is coming up totally normal. I just took my 80,000 units of vitamin D yesterday (I take the superdose every 3 months).

I haven't had my cardio or sleep test done, should I do a Lupus or Sjorns test? I really doubt I have either of those rare diseases. I've never been a morning person, but the fatigue/napping in afternoon has really become much worse since November...and its not due to any more stress.

I'm beginning to think maybe the Effexor is contributing...I started it 9 months ago. I'm only on 75mg, because higher doses give more side effects....But it helps so much with depression I hate to go off it. I've tried literally every SSRI and SNRI (and they all have sleepy side effect, some like Citalopram, are worse than others)

The symptoms definitely apply...but I already eat very healthy (no junk food, no sugar, no fried food, little dairy except plain greek yogurt)...

Does Ashwagahnda really help? Or Ginseng? I drink Ginger tea a lot, but you probably have to drink LOADS of it for years for a tea to make much effect... I've tried lots of natural supplements, vitamins, amino acids, and they never really make a very noticeable difference. I have a tough time taking more that 6 pills/meds/vitamins every day. I'd be willing to add supplements again if they have proven benefit.

How I got led down the autoimmune path is a PCP I had at the time did an ANA panel on me and I tested positive for one of the antibodies or whatever and combined with my dry mouth and dry eyes, etc (forgot to mention I also saw an eye doctor for the dry eyes). Because of that one positive hit on the ANA panel, that PCP shuffled me off to the rheumatologist to get more of a workup done. Somehow I begged and pleaded to get in to see the rheumatologist within a few months (getting an appt with a rheumy in the major health system I tend to use is almost as bad as trying to get an appt to see a dermatologist). The rheumatologist did a slew of blood tests and at the end of it all after the results came in said, good news, you don't have lupus and you don't have sjogrens. I can list the blood tests he did if you're interested. They're in my electronic chart; it's not like I can actually remember medical things that happened circa 2012.

I still get my thyroid tested pretty thoroughly once a year by my PCP but only once did it come up hypo and when we did more detailed followup testing the results all came back normal. Taking 5000iu Vit D3 a day keeps me in the slightly Vit D deficient (or sometimes just barely over the threshold into non-deficient) range. So if the test says 30 is the threshold for Vit D deficiency, I usually come in around 27 or 33 if I'm lucky.

Personally, I think a sleep study is worthwhile. Not sure if seeing a rheumy would be indicated in your case. Like I said, the only reason I ended up there was the dry eyes/dry mouth plus the one hit on the ANA panel. Plus, I wanted to get as much testing as possible taken care of while I had my employer-based insurance. Plus, I wanted to keep my job and was looking to treat a condition if I actually had one and reduce my symptoms. IIRC, a lot of the autoimmune stuff can be tricky to diagnose anyway, but the rheumy I saw was pretty confident about ruling out any autoimmune stuff for me. And I sort of have to agree at this point.

I now think the rapid weight gain must have just been my appetite getting out of control because I was rather depressed and stressed out. Also, I stopped exercising regularly and became almost 100% sedentary which didn't help matters. The fatigue and sleep must also have to do with my anxiety and/or depression too I'm betting. The fatigue and sleeping too much is much more manageable now compared to where I was before so I can't complain too much. I used to sleep entire weekends, only getting up to pee and take snack breaks. Also, I used to sleep a minimum of 12 hours a night. Now I sleep around 10 hours, sometimes up to 12 but usually around 10 hours, which is close to my natural sleep habits. I've always required about 9 hours of sleep throughout my life. People like my mom who functioned for decades on anywhere from 4-6 hours of sleep a night during the work week boggle my mind.

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You just got back on ritalin right? Rebound symptoms after you quit the last time? 

The first time I dropped from 300mg of bupropion to 150, I crashed hard and was tired for a while. 

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14 hours ago, aquarian said:

How I got led down the autoimmune path is a PCP I had at the time did an ANA panel on me and I tested positive for one of the antibodies or whatever and combined with my dry mouth and dry eyes, etc (forgot to mention I also saw an eye doctor for the dry eyes). Because of that one positive hit on the ANA panel, that PCP shuffled me off to the rheumatologist to get more of a workup done.

Taking 5000iu Vit D3 a day keeps me in the slightly Vit D deficient (or sometimes just barely over the threshold into non-deficient) range. So if the test says 30 is the threshold for Vit D deficiency, I usually come in around 27 or 33 if I'm lucky.

Personally, I think a sleep study is worthwhile. Not sure if seeing a rheumy would be indicated in your case. Like I said, the only reason I ended up there was the dry eyes/dry mouth plus the one hit on the ANA panel. Plus, I wanted to get as much testing as possible taken care of while I had my employer-based insurance. Plus, I wanted to keep my job and was looking to treat a condition if I actually had one and reduce my symptoms. IIRC, a lot of the autoimmune stuff can be tricky to diagnose anyway, but the rheumy I saw was pretty confident about ruling out any autoimmune stuff for me. And I sort of have to agree at this point.

I used to sleep entire weekends, only getting up to pee and take snack breaks. Also, I used to sleep a minimum of 12 hours a night. Now I sleep around 10 hours, sometimes up to 12 but usually around 10 hours, which is close to my natural sleep habits. I've always required about 9 hours of sleep throughout my life. People like my mom who functioned for decades on anywhere from 4-6 hours of sleep a night during the work week boggle my mind.

@aquarian I'd love if you could forward me the names of any relevant tests I could take to my GP. I have great health insurance at moment, so I really want to take advantage! I just got back results of some tests (all acronyms, no idea what they are)  The only thing out of range is CPK (normal range for women is 192 U/L and mine is 350 U/L which is higher than the range for men! No idea what that means?

I'm paranoid by googling elevated CPK can indicate: Muscle/tissue damage (either by a heart attack or stroke), Heart inflammation, Pericarditis, Lung tissue death, Myositis, etc. 😳  Apparently, stimulants (ritalin etc) can put strain on your heart, hope it's not this. I'm getting a full cardio test/echo soon.

my Vitamin D is right where yours is. GP gives me 80,000 units tincture every 3 months. I don't know if daily supplementation is better...My Ferritin is also in the lower range, but it is not deficient. I have tested for Thyroid antibodies (to see if you have Hashimotos, which I don't)...

I can't imagine only getting 4-6 hours sleep per night. I would go nuts. I know I need to get back into exercising, but I want to make sure there is no underlying issue.

10 hours ago, argh said:

You just got back on ritalin right? Rebound symptoms after you quit the last time? 

The first time I dropped from 300mg of bupropion to 150, I crashed hard and was tired for a while. 

Yes, I took a 2 month break. I started up again 1 week ago. On 30mg extended, and 10mg afternoon. It doesn't seem to have the same effect as it did before? I do get very noticeable heartrate increase and better focus, but I still feel drained sort of...

Biggest crash happens around 2pm (often after lunch, I'm assuming when it wears off?). i don't sleep, but I must lay in bed for 2-3 hours, dazed and feeling like lead.... I'm afraid I'll need to start upping my afternoon dose, which I'm not happy about.

This increasing tolerance issue is really annoying. It won't be long before I'm at max and it won't do anything! There is no Adderall where I live. I am currently looking for a f/t job and there is no way I can function and work like this! I won't last a week.

Edited by Blahblah

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16 hours ago, Blahblah said:

Yes, I took a 2 month break. I started up again 1 week ago. On 30mg extended, and 10mg afternoon. It doesn't seem to have the same effect as it did before? I do get very noticeable heartrate increase and better focus, but I still feel drained sort of...

Biggest crash happens around 2pm (often after lunch, I'm assuming when it wears off?). i don't sleep, but I must lay in bed for 2-3 hours, dazed and feeling like lead.... I'm afraid I'll need to start upping my afternoon dose, which I'm not happy about.

This increasing tolerance issue is really annoying. It won't be long before I'm at max and it won't do anything! There is no Adderall where I live. I am currently looking for a f/t job and there is no way I can function and work like this! I won't last a week.

Is something like provigil or nuvigil available where you live? Not exactly amphetamines but could give you energy.

On 2/4/2020 at 2:21 PM, Sephiroth999 said:

Content removed by Moderator.

It's dangerous to state that TCM will protect people from pandemics, especially with the coronavirus going about.

Edited by Cerberus

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On 2/3/2020 at 8:00 PM, Sephiroth999 said:

[Chinese Medicine] Lack of "Wei Qi". (Google is your friend with this one).

On 2/4/2020 at 7:24 AM, Sephiroth999 said:

You could try the classical formula "Jade Screen" it's usually our first-line remedy for Wei Qi Deficiency.

1 hour ago, Sephiroth999 said:

I do not claim any proven benefits to using Jade Screen or any TCM.

1. First, you provide one of our members with an ersatz "diagnosis" from Chinese Medicine

2. You then prescribe what you call a first-line remedy for that same diagnosis from CCM

3. Then you inform us that you have no evidence of any proven benefits of said first-line treatment.

4. You're done here.

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My cousin has chronic fatigue/ME. He is very sick. I send emails but I never know when he will have enough energy to reply.  

I have a lot of fatigue, but it is different.  I can push myself through it to function, but I can sleep 14 hours if I don’t have coffee (even with provigil).  I think mine is due to sleep apnea,( I wear a device but my sleep is fair,)medication, and me. I am hypothyroid but it is controlled with medication.

my sister has an autoimmune disease, myasthenia graves, which makes her muscles weak. She is awake, but she may have trouble breathing and/or swallowing. And can not walk.

they say when you hear hoofbeats think horses not zebras. CFS is real, but I would rule other things out first.

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Speaking of hoof beats and horses, that's what has brought me peace of mind with my current situation. "It's all in my head" as I joke with my pdoc. Because we've ruled out pretty much everything I can think of and I don't think I have CFS/ME based on what I've read about it. But depression, anxiety, and panic disorder are real too, even if they are "only in my head".

@Blahblah

Unfortunately I know little about these tests and don’t really have time to delve into what the results pages look like. But here are the test names at least.

The first time my current (good) PCP tested my thyroid she ordered:

TPO ANTIBODY
T3 FREE
T4 FREE
TSH

(Please keep in mind this was after my pdoc ordered labwork including just a TSH test which showed a slightly elevated TSH level, but my PCP wanted to confirm before doing/prescribing anything. And when my PCP ran the above 4 tests, everything came back within normal range so the slightly out of range TSH level from the labs my pdoc ordered must have been a one-off thing. My pdoc seemed pleased with the thyroid labs PCP ordered.)

The next year my PCP ordered:
T3 FREE
T4 FREE
TSH

The next year (last year) PCP ordered:
T4 FREE
TSH

(I guess now she’s just monitoring to see if I ever do turn hypothyroid in the future?)

Ok, from the rheumatologist:
ANA PANEL* 
ANA INTERP
UA REFLEX
URINE MICROSCOPIC
UA W/REFLEXIVE CULTURE, UR
REUMATOID FACTOR, QUANT
MONOGAM SERUM INITIAL, BL
C-REACTIVE PROTEIN (CRP)
COMPLEMENT, ANTIGEN (C4)
COMPLEMENT, ANTIGEN (C3)
ANTINUCLEAR ANTIBODIES

From the endocrinologist:
IMMUNOASSAY, RIA
ASSAY FERRITIN (my value was 8 on a standard range of 11-307)
IRON BINDING TEST
ASSAY IRON
VITAMIN B12
MICROSOMAL ANTIBODY
ASSAY THYROID STIM HORMONE
VITAMIN D-25 HYDROXY, BL (my value was 7 on a standard range of 32-100)
ACTH
TOTAL CORTISOL
CORTISOL, FREE (This was the 24-hour pee collection jug one.)

 

*This one was the one ordered by a random PCP I saw once or twice because I’m generally very healthy so I had no PCP from about age 18-ish when my pediatrician gave me the boot to approx age 30 when sh*t hit the fan. I’ve learned my lesson because had I been seeing a PCP all this time, I’d know what my baseline was and also PCP would have likely noticed (like my pdoc did) when I started going downhill because she would have known how I present normally, etc.

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@aquarian Thanks. So has there been anything that has helped or improved things? Doctors always write it off as depression / stress symptom, but I am actually not stressed and my mood has been stable...I slept 10 hours last night and despite setting an alarm at 8:45am, I could not get myself going & out of bed until 11:30am...

@argh Provigil is also a stimulant I'm assuming? Does it have a completely different mechanism than ritalin and adderall? I've been drinking coffee all my life and it doesn't really do much of anything.

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6 hours ago, Blahblah said:

Thanks. So has there been anything that has helped or improved things? Doctors always write it off as depression / stress symptom, but I am actually not stressed and my mood has been stable...I slept 10 hours last night and despite setting an alarm at 8:45am, I could not get myself going & out of bed until 11:30am...

The only thing that dramatically improved some of my symptoms was supplementing with Vit D and over-the-counter iron per my doctor's instructions. Years later, I no longer supplement with iron and my iron levels remain ok. (I'm a vegetarian btw and have been so for 20+ years.)

Also, stopping work and going on short and then long term disability and finally SSDI has of course reduced the stress in my life and that has helped. Also, my dad was in the year-long process of dying (pancreatic cancer) in front of my eyes (and we did home hospice for the last month or two) around the time when all this started so that life stressor moving further into the past has helped.

Maybe therapy has helped? Hard to tell on that front. Oh, and buspar. I tried nuvigil and ritalin but neither helped with energy/sleeping too much. So then my pdoc had me on a small dose of adderall IR. It was helpful but I would get noticeable energy crashes mid-day and I couldn't take it more frequently or at higher doses because it would make it impossible to sleep at night and intensify any already existing anxiety. Well, I must have been on adderall at least a year or more when my pdoc added buspar to my cocktail since apparently it helps some people with anxiety (kind of hit or miss she thinks). Well, the buspar did zero for my panic/anxiety but seems to give me more energy (with no crashes) and I may sleep a little less (though not sure about the sleeping part). So I finally could stop the adderall. I've never heard of anyone else having this effect from buspar though. Also we recently increased my mirtazapine dose from 30mg to 45mg and that's one of those drugs that I believe gets less sedating the higher the dose? So I may have had a tiny improvement in average number of hours of sleep per night since that med adjustment.

Hard to say. Part of the problem now could due to all the weight I've gained and I eat kind of crappy (especially considering I'm vegetarian). Plus, exercise is supposed to help improve energy levels and I don't do much of that anymore. But, on the other hand, my problem started and was most severe when I was still fairly normal weight and just starting to become overweight. And I ate a lot of the same stuff I eat now back then too. So, it's all still a mystery to me. But yeah, now that my dad's dying/death is a distant memory and I no longer have to work, things are better. Plus, the vitamins were life-changing. And, looking back, I've never really had to work consistently full-time at a stressful job in my life so it is possible that I'm just not cut out for a full-time job. I'm still somewhat "young" so maybe work in some capacity will be possible in the future, so I'm not closing off all avenues/possibilities. It was a great job by the way and my employer bent over backwards for me for the most part, but full-time work where you're expected to complete a certain number of tasks, perform at a certain level and show up every Mon-Fri is inherently stressful (for me at least).

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