14 years of something

[Bradford]

It started out in high school as IBS symptoms. Then, a few years later in college, I'd find myself zoning out a lot. I lost the energy I had in high school. After I graduated college I felt tired all the time with brain fog that I swear gets worse every year. I slept solid, though. After a few years on Adderall I started having problems sleeping. I took a year of prescription sleep medicine. I then stopped all medications. Fast forward a few years and I'm waking up in the middle of the night almost every night. What's weird is that my brain fog and heavy fatigue are somewhat relieved when I get a poor nights sleep. When I sleep well, which isn't often, I get heavy fatigue and heavy brain fog, making speech, chores, and work very hard. My memory is also shot when this happens.

I don't have joint pain, but do have nerve pain in my ulnar nerve most of the time. When lying flat I'll sometimes get nerve pain in my legs and big toe.

Is this similar to what you guys experience? Any suggestions for figuring out what's going on?

I've had these tests all come back normal: B12, Thyroid (TSH, T3, T4), Glucose, Celiacs, Testosterone (though a little low), Cortisol, Hashimoto's antibodies, ANA levels, and other basic well-being tests.

No matter what, I'm dealing with either insomnia or chronic fatigue + brain fog. Any suggestions on what else I can do?

p.s. I got my IBS under control in 5 years after I eliminated fruit juice, beer, and soda from my diet.

 

[Zensational]

Here's some hope. Have tests done for Epstein Barr Virus.
http://web.mit.edu/newsoffice/2011/antiviral-0810.html

Of course it will have to go through clinical trials but at least there a bright light for us.

 

[adreno]

No flu-like malaise, neurological symptoms, PEM or PENE? How is your mood? From the sound of your symptoms, I would first rule out depression, before I suspect ME. It is well known that sleep deprivation temporarily alleviates depression. On the other hand, PWMEs usually fare worse with sleep deprivation. Adderall use can also cause depression.

 

[Bradford]

Zensational, cool link. Thanks.

adreno, my mood is good. I just live. Don't really care much about things. Don't have mania. Also, I'm not down or sad.

What does PEM and PENE stand for?

 

[aquariusgirl]

Rule out parasites....trouble is tests r not supposed to be very good. Maybe try a a parasite cleanse? See if that changes anything. If it does u could pursue that avenue.

 

[Shell]

PEM is post exertional malaise which is also sometimes labelled as PENE - post exertional nuero exhaustion.
The exhaustion can sometimes be delayed by a couple of days but when it hits it floors you. It's not being tired. I can't quite describe it - but ye gods, if you get PEM there's no mistaking it.
PEM is a primary marker for ME.
I get that neuro pain down the leg into my big toe. It seems to be related to some mild spinal damage that has effected my spinal cord.

 

[maryb]

Shell
how strange.... I first got the pain in my big toe soon after I got ill - I could never explain it to anyone as there was nothing to see - just awful pain which I still get on and off. I have major spinal blockages.

 

[MagicalMe]

I'm going to share my experience later this year after some upcoming treatments, and hopefully there will be some answers. But your experience sounds really similar to mine. I was sick on and off for 8 years and the only abnormal test results I ever had were various vitamin deficiencies. I was diagnosed with everything from IBS to depression (despite not actually being depressed). In 2005 my Celiac panel finally came out positive--even after 8 years of normal results on the same test. I cut out gluten and improved, and then improved further on B12 injections after discovering a long-standing deficiency.

Cut to 2010 and I just crash and burn. Debilitating fatigue, brain fog, insomnia, "just living" like you describe, and major problems with my immune system. All my tests were normal. ANA, anti-thyroid antibodies, Epstein Barr, Mono, TSH, T3, Free T3, Free T4, etc. Normal, normal, normal. Even the saliva test for adrenals and other hormones were normal. So there was a general acceptance among all my doctors that I simply had CFS/ME. So that's what I've been fighting since spring of 2010, with just enough success to where I can get a few good hours in during the day.

Then about a month ago, after reviewing my very limited diet and trying to ensure I'm getting all my nutrients, I decide I'm not getting enough iodine. I buy some liquid iodine supplements and take a single drop/RDA per day. About three days later my throat feels scratchy, like I'm coming down with a cold. It goes away the next day but is replaced by pain and tightness in my throat. Sometimes that pain is so bad that it shoots up to my ears. That made me think of my thyroid again.

I look it up and it turns out that iodine supplements are really bad for AutoimmuneThyroiditis, because it stimulates a thyroid hormone that is the target of the anti-thyroid autoimmune reaction--but only if you have autoimmune thyroid disease.

I go to the doctors and guess what--my TSH and T4 indicate that I have hypothyroidism, which has been around long enough to cause macrocytic anemia, and I have an abnormality on my thyroid that my doctor discovered after a thyroid palpation.

So next week I have another appointment for a thyroid ultrasound to check out the abnormality, and there will be more blood tests.

Why this has happened I have no idea. The answers I have been given is that it was subclinical hypothyroidism, or that my thyroid levels wavered back and forth for a long time and it was merely about catching it when it was low. Or that it's now so bad it's finally showing up. It could be that I have chronic autoimmune thyroiditis in addition to CFS, or simply that, what I thought was CFS, was actually thyroid disease.

What's interesting are the symptoms I didn't have that are typically associated with hypothyroidism, like dry skin, thinning hair, edema, weight gain, brittle nails, etc. In addition to the normal blood test results, that's part of the reason thyroid disease was crossed off the list of possibilities.

My entire experience makes me wonder how many people with CFS actually have some kind of subclinical autoimmune thyroid disease.

Anyway, I'll share all the details when I know what my thyroid results are and how my treatment is working. Maybe there are others out there like me that have been diagnosed with CFS, but actually have a treatable illness.

 

[Shell]

I think it's a good question MagicalMe to wonder how many of us have either comorbidites with ME or who don't actually have ME or CFS but something else entirely.
I've just read how the Wessley School helped form recommendations that no tests other than the absolute basic ones should be done. This is a sure way of not finding out what is making someone so sick and therefore not treating it.
While I am sure this has short term benefits to Government and insurance industry finances, I can't see how it has any long term benefits as leaving people sicker for longer only means they will be much sicker soon enough and unable to work. But no one ever accused politicians of reasonable thought.

 

[xks201]

You must treat the low testosterone with testosterone injections and possibly an aromatase inhibiting estrogen blocking drug. Did you get your estrogen (e1, e2, e3) and SHBG tested? If your T level is "a bit low" this means it is extremely low. The average T level was 800 50 years ago. The reference range now includes all ages of men, sick and healthy. It is not right. 800ng/dl is a healthy testosterone level. If yours isn't at least 700 ng/dl you need replacement or you will continue to have all of the fatigue and brain fog. Docs will tell you it's nothing to worry about because they do not want the responsibility of treating you. For example, the reference range here is 300ng/dl-1200ng/dl. anything under 500 is seriously not healthy, yet 300-500 and you are told you are fine. If yours was slightly low I'm assuming it was even lower than this number which basically means you are making the testosterone levels of a prepuberteral boy.

It started out in high school as IBS symptoms. Then, a few years later in college, I'd find myself zoning out a lot. I lost the energy I had in high school. After I graduated college I felt tired all the time with brain fog that I swear gets worse every year. I slept solid, though. After a few years on Adderall I started having problems sleeping. I took a year of prescription sleep medicine. I then stopped all medications. Fast forward a few years and I'm waking up in the middle of the night almost every night. What's weird is that my brain fog and heavy fatigue are somewhat relieved when I get a poor nights sleep. When I sleep well, which isn't often, I get heavy fatigue and heavy brain fog, making speech, chores, and work very hard. My memory is also shot when this happens.

I don't have joint pain, but do have nerve pain in my ulnar nerve most of the time. When lying flat I'll sometimes get nerve pain in my legs and big toe.

Is this similar to what you guys experience? Any suggestions for figuring out what's going on?

I've had these tests all come back normal: B12, Thyroid (TSH, T3, T4), Glucose, Celiacs, Testosterone (though a little low), Cortisol, Hashimoto's antibodies, ANA levels, and other basic well-being tests.

No matter what, I'm dealing with either insomnia or chronic fatigue + brain fog. Any suggestions on what else I can do?

p.s. I got my IBS under control in 5 years after I eliminated fruit juice, beer, and soda from my diet.