IGX

Anyone have any experiences either themselves or people close to them with CFS/ME?

My wife had glandular fever a couple of years ago for about six months, and has never fully recovered. Her symptoms seem to suggest CFS/ME with some depression thrown in for good measure.

Interested in hearing any experiences. If you'd prefer, feel free to PM me.

Sent you a pm

Don't know the age, but get a blood work up with complete hormonal including all aspects of Thyroid. I'm around a lot of women in my age group who have to play chemist to manage, along with fitness, diet, etc..
Any questions, ask.

Tom

She had a full blood test done recently and was told all was fine.

Beer Jew wrote:Anyone have any experiences either themselves or people close to them with CFS/ME?

The only guy I know with Chronic Favg Syndrome started this trhead.

TomFurman wrote:Don't know the age, but get a blood work up with complete hormonal including all aspects of Thyroid. I'm around a lot of women in my age group who have to play chemist to manage, along with fitness, diet, etc..
Any questions, ask.

+1 on thyroid. Diagnosing hypothyroidism by blood tests is fallacious. Similar to diagnosing diabetes by testing insulin levels. Chronic Fatigue Syndrome is certainly a complex and multifactorial issue, but I have personal experience where desiccated thyroid pretty much cured it.

A good primer in popular language (and a very good website): http://www.stopthethyroidmadness.com/ch ... -syndrome/

It's probably the gluten. Not sure why but women with CFS seem to hate the gluten.

Similar to diagnosing diabetes by testing insulin levels.

Ivor Cummins posted an interesting video on that
[youtube]http://www.youtube.com/watch?v=w0nV-_ddXoc[/youtube]

Is that old guy on Instagram?

I don't trust any expert who isn't on Instagram.

I developed hypothyroidism and no one diagnosed it until I spent a week in the hospital for a chronic migraine (I had a migraine for six months). This was even after having half my thyroid removed because I grew a large complex cyst on it. I didn't develop migraines until the tumor showed up and I was sleeping ten hours a night and taking a three hour nap every day.. It wasn't diagnosed because my tsh and everything else was in the "normal range". Turns out my normal range is at the very bottom of the spectrum and getting treated with synthroid pretty much solved everything. I'm on a very low dose and I adjust it as needed to feel good under the direction tion of my endocrinologist.

syaigh wrote:I developed hypothyroidism and no one diagnosed it until I spent a week in the hospital for a chronic migraine (I had a migraine for six months). This was even after having half my thyroid removed because I grew a large complex cyst on it. I didn't develop migraines until the tumor showed up and I was sleeping ten hours a night and taking a three hour nap every day.. It wasn't diagnosed because my tsh and everything else was in the "normal range". Turns out my normal range is at the very bottom of the spectrum and getting treated with synthroid pretty much solved everything. I'm on a very low dose and I adjust it as needed to feel good under the direction tion of my endocrinologist.

This is one of the biggest problems of modern medicine: we tend to trust numbers and pictures more than patients' symptoms. Whereas the latter - to make someone actually feel better - is the whole point of treatment in the vast majority of cases.

syaigh wrote:I developed hypothyroidism and no one diagnosed it until I spent a week in the hospital for a chronic migraine (I had a migraine for six months). This was even after having half my thyroid removed because I grew a large complex cyst on it. I didn't develop migraines until the tumor showed up and I was sleeping ten hours a night and taking a three hour nap every day.. It wasn't diagnosed because my tsh and everything else was in the "normal range". Turns out my normal range is at the very bottom of the spectrum and getting treated with synthroid pretty much solved everything. I'm on a very low dose and I adjust it as needed to feel good under the direction tion of my endocrinologist.

May I ask what diagnostic test found it? My wife has had chronic pain for over three years, which developed during pregnancy, and while her TSH has been normal at every blood panel, she's certainly had the sensitivity to cold, dry skin, and a couple of the other non-specific symptoms.

It wasnt actually "found", my neurologist decided that the thyroid might be the culprit and had an endocrinologist see me in the hospital. If you can, it might just be worth getting a consult with an endocrinologist. They will pick up on things your regular doc wont.

Thank you! We're seeing our doc for an endocrinologist referral this week.

Chris McClinch wrote:Thank you! We're seeing our doc for an endocrinologist referral this week.

Good luck. I live in a decent sized city with a grand total of 1 endocrinologist. He's a fine doctor but wait times were in the six month range.

DrDonkeyLove wrote:

Chris McClinch wrote:Thank you! We're seeing our doc for an endocrinologist referral this week.

Good luck. I live in a decent sized city with a grand total of 1 endocrinologist. He's a fine doctor but wait times were in the six month range.

Jesus! I'm hoping the DC Metro area will be better, but that's unbelievable.

Tom wrote:

Similar to diagnosing diabetes by testing insulin levels.

Ivor Cummins posted an interesting video on that
[youtube]http://www.youtube.com/watch?v=w0nV-_ddXoc[/youtube]

This is what I don't get about the low-carb controversy:

if they're right, the low-carb guys, that it's all about the insulin response (as the old guy is saying here), then that changes everything. Carbs really are evil, and they have to go. There isn't much of a middle-ground there; it really is all or nothing.

Have had good results with a couple of CFS patients (one young, one older, both female).
Help the autonomic nerve system feel safe (myelinated vagus pathway) - patient improves.

I sent this as a PM, but it might be worth posting publicly:

I have more than a few people very close to me w. autoimmune disorders. This may sound like a totally a-holish thing to say but, because it's IGX, I'll go ahead and say it - the psychological component and its role in inflammation and chronic fatigue is, in my opinion, not given its proper due.

I am NOT saying that there are other components but no one is willing to listen to the idea that, for example, their chronic pain or fatigue may be habit of the mind and nervous system. We talked about the idea that pain is a complicated beeyotch in another thread recently and, for me, with lower back pain that totally wrecked my training for 1-2 years, creating better habits of mind and movement is what lead to recovery.

Having said all of that, there is absolutely NO WAY IN HELL I would ever even hint to anyone (let alone my wife) that the cause of pain or fatigue was psychological unless I wanted to be in the dog house for the rest of my (married) life. But, doing what I can to eliminate stressors, encourage proper nutritional, exercise, and sleep habits, etc does/has made a difference.

Boris wrote:I sent this as a PM, but it might be worth posting publicly:

I have more than a few people very close to me w. autoimmune disorders. This may sound like a totally a-holish thing to say but, because it's IGX, I'll go ahead and say it - the psychological component and its role in inflammation and chronic fatigue is, in my opinion, not given its proper due.

I am NOT saying that there are other components but no one is willing to listen to the idea that, for example, their chronic pain or fatigue may be habit of the mind and nervous system. We talked about the idea that pain is a complicated beeyotch in another thread recently and, for me, with lower back pain that totally wrecked my training for 1-2 years, creating better habits of mind and movement is what lead to recovery.

Having said all of that, there is absolutely NO WAY IN HELL I would ever even hint to anyone (let alone my wife) that the cause of pain or fatigue was psychological unless I wanted to be in the dog house for the rest of my (married) life. But, doing what I can to eliminate stressors, encourage proper nutritional, exercise, and sleep habits, etc does/has made a difference.

+1 Glad you posted that. I know more than one person that had really difficult, hard to pin down maladies that wouldn't respond to anything, become manageable once they got some treatment for their depression. I KNOW their suffering wasn't imaginary, I KNOW it wasn't all in their head, I don't know if the physical caused the mental or vice versa or what, just saying why not pursue both avenues.

I was going to say, IIRC from school, the symptoms of chronic depression and the symptoms of CFS are pretty much indistinguishable on many fronts. Not saying there's no such thing as CFS (though a case could be made) just saying...if depression is a co-morbid condition with just about anything, chances of finding "The One Thing" that fixes the condition are slim.

ccrow - chicken and egg I guess. I don't know if it's something physical causing the depression as one of many symptoms, or the depression causing the physical symptoms.

TerryB wrote:Is that old guy on Instagram?

I don't trust any expert who isn't on Instagram.

at a bare minimum a twitter account, some sort of honorary doctorate, and be familiar with the use and deployment of kettlebells.