Does anyone here have a teen with chronic fatigue syndrome?

[Denisemomof4]

Never heard of it in teens before. Actually, it would have started when dd was only 11 which drs say is highly unusual.

[Kathryn]

Double post

[Kathryn]

I was one. I got sick at 16. My mom got her first bout when she was younger, as did her mom. It runs in the females in grandma's line. The three of us, as well as my grandma's brother's daughter have all been diagnosed. I'm not sure when she first got ill. My grandma suspects her mother had it as well. My mom's brother's daughter is currently mysteriously ill going on a year now. They're still denying the obvious, though she's had to drop out of sports and can only take half a class load. She just turned 13, so she was 12 when she got sick.

[Spryte]

I know of several teens who had CFS that young. I knew their moms, actually, not the teens. But the CFS was caused by (you guessed it) TBDs, so take that for what its worth - it was a symptom of another condition, technically. Let's see... one girl was a patient of Dr F in AZ, and she battled what's become known as the "Fry bug" for years... thinking it was a form of Bartonella. She now knows what it is, in her 20s, and is doing much better after a long struggle. Another girl had a persistent case of Babesia Duncani. I don't recall details on the others, but they were all caused by TBDs of one sort of another, so this might not be helpful. I'm sure there are non-TBD-related cases of CFS out there, I just happen to know lots of TBD people. :)

 

Oh, and technically, I had CFS as a teen. The docs called it chronic, atypical mono. It started when I was 11 and relapsed and remitted for years. I missed 2 years of school - well, I had home tutors and graduated on time, but was technically absent from PS. (Hmmm, never realized I was partly homeschooled till now, we never called it that!) ...I still have CFS listed on my chart, it comes and goes. I still have the lovely "Fry bug" though, so I'm hopeful the CFS will resolve with treatment.

[Jean in Newcastle]

I know of several teens who had CFS that young. I knew their moms, actually, not the teens. But the CFS was caused by (you guessed it) TBDs, so take that for what its worth - it was a symptom of another condition, technically. Let's see... one girl was a patient of Dr F in AZ, and she battled what's become known as the "Fry bug" for years... thinking it was a form of Bartonella. She now knows what it is, in her 20s, and is doing much better after a long struggle. Another girl had a persistent case of Babesia Duncani. I don't recall details on the others, but they were all caused by TBDs of one sort of another, so this might not be helpful. I'm sure there are non-TBD-related cases of CFS out there, I just happen to know lots of TBD people. :)

 

Oh, and technically, I had CFS as a teen. The docs called it chronic, atypical mono. It started when I was 11 and relapsed and remitted for years. I missed 2 years of school - well, I had home tutors and graduated on time, but was technically absent from PS. (Hmmm, never realized I was partly homeschooled till now, we never called it that!) ...I still have CFS listed on my chart, it comes and goes. I still have the lovely "Fry bug" though, so I'm hopeful the CFS will resolve with treatment.

 

 

TBD - to be determined? :confused:

[Spryte]

TBD - to be determined? :confused:

 

 

Tick Borne Disease. Not Lyme Disease, but a complex of different diseases that overlap.

 

Sorry.

[Jean in Newcastle]

Tick Borne Disease.

 

Sorry.

 

 

That makes a lot more sense!

[dbmamaz]

my sister had repeated mono in high school and got sick w cfs and fibro in her 20s. my daughter was dx'd with fibro at 17, but she seems pretty cfs-ish too, when she's in flare. its more exhaustion that bothers her than the pain.

[Elizabeth in MN]

I developed CFS when I was 13. There is a mom on the High School board who has a daughter with it right now.

[Harriet Vane]

I used to work with an editor who had CFIDS and whose daughter also had it. Her daughter came down with it quite young--somewhere in the 10-12yo range.

[Tiramisu]

I have one who has been really tired since her early teens. Besides low iron that's been pretty successfully remediated, we've not found a physical cause. Now my next one up is also starting to have more issues with fatigue, and I'm afraid of having to deal with another fatigued child. She was sick with a virus not that long ago, but I'm worried that her energy isn't coming back. I may take her in for bloodwork. Both dd's are very different in temperment, activity level, etc.

 

Maybe we need a support group for this.

[Stayseeliz]

I was dx with cfs in 2002 but I didn't think that was the issue. We dug deeper and found out I was hypoglycemic and has other uses. A lot if the time cfs is just used when they can't figure out what's really going on.

[Reya]

I think that CFS is a wastebasket diagnosis.

 

That isn't to say that what someone with CFS is going through isn't real. But I feel strongly that is a label for a set of symptoms that can be caused by any number of things. CFS symptoms warrant further investigation and shouldn't be taken as any kind of "answer."

 

My aunt had severe "CFS" that ended up being linked to seasonal allergies! Rather than getting streaming eyes, she'd just get knocked sideways for a month every spring and fall.

 

My "CFS" is linked to my stupid metabolic disorder that throws all my body rhythms into a loop if it isn't carefully managed--my underlying metabolic muscle disorder messes up my melatonin and reproductive cycles, too, yay, which makes everything go sideways. I get non-typical "depression" (basically, I'm not sad and my mood isn't down, but my body is physiologically "down") that matches CFS symptoms. But it's a byproduct of my metabolic disorder and is managed by managing that as best as I can.

[Jean in Newcastle]

The definition of a "syndrome" is a collection of symptoms without a specific cause that has been diagnosed. This is why Chronic Fatigue and Fibromyalgia are both syndromes and are not diseases as such. You can get different people with the same list of symptoms (or at least many out of a range of symptoms) and have different causes and sometimes multiple causes.

[Tiramisu]

I think that CFS is a wastebasket diagnosis.

 

That isn't to say that what someone with CFS is going through isn't real. But I feel strongly that is a label for a set of symptoms that can be caused by any number of things. CFS symptoms warrant further investigation and shouldn't be taken as any kind of "answer."

 

My aunt had severe "CFS" that ended up being linked to seasonal allergies! Rather than getting streaming eyes, she'd just get knocked sideways for a month every spring and fall.

 

My "CFS" is linked to my stupid metabolic disorder that throws all my body rhythms into a loop if it isn't carefully managed--my underlying metabolic muscle disorder messes up my melatonin and reproductive cycles, too, yay, which makes everything go sideways. I get non-typical "depression" (basically, I'm not sad and my mood isn't down, but my body is physiologically "down") that matches CFS symptoms. But it's a byproduct of my metabolic disorder and is managed by managing that as best as I can.

 

Interesting, Reya.

 

I think I have the fatigue of seasonal allergies without the usual allergic symptoms. I'm a mess every April and May. Once I get through to June, it gets much, much better. It feels like a magnet is pulling me down to the ground. I try to school hard until Spring, knowing that despite my best efforts things tend to fall apart toward the end of the school year.

[dbmamaz]

wow, Reya, I'd love to hear more - my daughter goes nuts when her fibro flares up . . .

[Stayseeliz]

I think that CFS and Fribo can both be just generic "We don't know what's going on" labels. My sister was "dx" with fibro 3-4 years ago and now they think it might be MS. Dig deeper is all I can say!! If I hadn't I wouldn't know about my blood sugar issues and I would've been on an anti-depressant for the last ten years.

[Spryte]

i think Jean and the others (re)stating that CFS and Fibro are syndromes, or sets of symptoms, are right on the money for bringing that up. These are names for a set of symptoms, and it's so important that everyone look for the root cause of their CFS or Fibro - just like one would look for the cause of any symptoms.

 

It's frustrating when there is no apparent cause, but keep digging because eventually a very astute doc might just find it. Or a new breakthrough will happen - as just happened in my case. There has to be a reason.

 

Years ago, when I saw an ID (infectious disease doc), he saw CFS and Fibro both on my chart. He made a motion of crumbling up paper and throwing it in the wastebasket, and called it a "wastebasket diagnosis" (like a PP said). He said we need to find the cause of the syndromes.

[Tiramisu]

I think that CFS and Fribo can both be just generic "We don't know what's going on" labels. My sister was "dx" with fibro 3-4 years ago and now they think it might be MS. Dig deeper is all I can say!! If I hadn't I wouldn't know about my blood sugar issues and I would've been on an anti-depressant for the last ten years.

 

How was your blood sugar problem diagnosed? One of my dd's had very obvious blood sugar problems as a younger child. I don't see the same symptoms now, but I think symptoms sometimes morph as they get older while the problem behind them remains. Maybe the fatigue I'm seeing now has replace the meltdowns, etc.

[SwallowTail]

I had mono that became a persistent viral infection when I was a young teen. It lasted for at least 10-15 years, and my symptoms during that time and now look a whole lot like CFS and fibro. I also got a perrsistent viral infection of Parvo 3 years ago. I agree that there is typically an undetermined, underlying disorder (or confluence of disroders) that causes the collection of symptoms. My current doctor is trying to figure out mine.

[Reya]

The definition of a "syndrome" is a collection of symptoms without a specific cause that has been diagnosed. This is why Chronic Fatigue and Fibromyalgia are both syndromes and are not diseases as such. You can get different people with the same list of symptoms (or at least many out of a range of symptoms) and have different causes and sometimes multiple causes.

 

 

Yes and no. Down syndrome is a single syndrome with a single cause. Asherman's syndrome, also. Asperger's syndrome. There hare hundreds of syndromes named for their symptoms that are caused by single diseases or dysfunctions and so are a very meaningful definitions. CFS isn't one of them.

[Reya]

BTW, the new set of tests for fibromyalgia (including biopsy of the myofascia) is actually exclusive enough to mean something. It removes a ton of people who were given the Dx as a "wastebasket" diagnosis and pares the suffers down to a meaningful group that are sharing the same dysfunction.

[Reya]

Interesting, Reya.

 

I think I have the fatigue of seasonal allergies without the usual allergic symptoms. I'm a mess every April and May. Once I get through to June, it gets much, much better. It feels like a magnet is pulling me down to the ground. I try to school hard until Spring, knowing that despite my best efforts things tend to fall apart toward the end of the school year.

 

 

If it's allergies, allergy meds will make it go away! My aunt is like a new person now. She never thought to take allergy meds for it because her classic "allergy" symptoms were so mild that they weren't really worth treating. Ooops!

[Reya]

wow, Reya, I'd love to hear more - my daughter goes nuts when her fibro flares up . . .

 

 

I have slightly nonclassic myotonia congenita. I was misdiagnosed with fibro once--most people with MC that presents more as pain than "freezing up"-type stiffness are. If you have more pain in your largest muscles, especially leg pain, it's MC, while fibro is more generalized. I do still have all the "trigger points," etc., that people with FMS have, but the reason is very different.

 

I would say "if you have large amounts of stiffness and cramping in your muscles, it's likely to be MC," but the fact is that for me it doesn't feel like what I think a "cramp" should because it's low level and I'm so USED to it. I am most aware of the stiffness only after it's gone, like after a deep-tissue massage when my range of motion is suddenly way greater! I'm always like, "Hey! I didn't know my joints could do that!" So it's hard to say if you have restricted range of motion if that's normal to you!

 

True fibro occurs when something is wrong with the sheet of tissue that coats all voluntary muscles, called the myofascia. I'm not sure if they've determined the cause of the dysfunction.

 

MC is a disorder of the choride ion channels inside the muscle. Here's Wikipedia's explanation:

 

"Muscle contraction and relaxation are controlled by the flow of ions into and out of muscle cells. CLCN1 [chloride ion channel] forms an ion channel that controls the flow of negatively charged chloride ions into these cells. The main function of this channel is to stabilize the cells' electrical charge, enabling muscles to contract normally.

"In people with congenital myotonia due to a mutation in CLCN1, the ion channel admits too few chloride ions into the cell. This shortage of chloride ions causes prolonged muscle contractions, which are the hallmark of myotonia."

So, anyway, the channel's broken, so chloride doesn't flow in efficiently the way it should, so my muscles just stay partly contracted when they are supposed to relax, and they hurt. Having a ton of extra chloride floating around helps some because it means that it's a tiny bit easier for my crappy chloride ion channels to let in the chloride that has to get in for the muscle to relax, and so does restricting potassium, because it's the potassium inside the cells that makes them contract in the first place, and giving them a little less to play with helps.

It's a metabolic pathway, and for some reason, that one pathway being messed up manages to throw off the whole homeostasis thing that my body is supposed to be doing. :p When it's not well managed, I get PDD, SADD, and physiological cyclothymia--meaning that when my body is sending me "up" I don't really feel "euphoric" the way a true person with sub-clinical bipolar disorder would feel and I don't do stupid and reckless things, just like I don't feel sad or depressed when I'm "down" (much less feel suicidal, yuck!). But when my muscles act up and knock my sleep cycle out of whack, I get a physiological "high" that means that I go with reduced sleep for weeks and am very active and productive (I wrote 376 pages from November 9-30th of high-quality work this year--and that's CRAZY productive), while when I crash with a "down" after, it's impossible to stay on top of all my basic commitments, and I sleep 10-12 hours a day. I'm too tired to care about anything and it is a huge struggle to get anything done. Even the smallest tasks are physically exhausting.

Even if you don't have MC but another chronic pain problem, pain itself causes a hormonal cascade that, at chronic levels, can mess with all your basic systems and, in fact, create an echo-chamber effect with the pain itself. If you have chronic pain, often part of the reason you hurt so much is...that you hurt. Many doctors who surgically treat certain types of nerve-caused chronic pain use a spinal block for a while during recover to short circuit the pain feedback loop so that your body doesn't keep telling you it's in pain even after the cause is gone because bodies get stupid like that.

One of the best things that I can do--and anyone with a chronic pain condition, because chronic pain can knock your biorhythms to pieces while laughing merrily--is exercise. Exercise is heavily linked to all sorts of hormonal and metabolic pathways, and it can override the chaos that your underlying disorder is trying to cause. I can't exercise like I usually do right now because pregnancy has loosened the ligaments in my hips, and when my muscles cramp, they pull my hips partly out of their sockets, which is just about as much fun as it sounds, so I'm just toughing through it as best I can right now. But usually, 30 minutes every. single. day. can reset my sleep cycle, kick my pain (moderate exercise is inherently good for MC and improves symptoms drastically), and keep everything else from going crazy.

Melatonin is also involved in the reproductive cycle, so melatonin disturbances can affect fertility. Doctors don't really fully understand why and how melatonin interacts with estrogen and progesterone, but they know that it does have SOME role. In "normal" women approaching perimenopause, melatonin drops as fertility does, but supplementing with melatonin increases fertility, at least somewhat, so it's not just on the effect side of the cycle. No one really understands how melatonin interacts with one's reproductive cycles, but sleep disorders are also linked to infertility in younger women, so there is a real connection there.

I'm not an alternative medicine type--I believe that homeopathy is bunk, eastern medicine is often worse than bunk, and anything that herbs can do could be done better by isolating the active components and making sure they are present in the correct doses for the desired effect. But homeostasis in humans is a set of very intricately connected connected pathways, and when you have a disorder in one area, it's kind of like having a toddler running around kicking over the nice, neat, block towers that your body is trying to build. Exercise is so powerful a metabolic and hormonal "reset" that it can do an enormous amount to keep relatively minor problems from becoming huge ones. It is so strongly linked to hormonal changes in the body that it is as effective as ANY medicine on the market for depression, and it is strongly recommended for MANY chronic pain conditions--from rheumatoid arthritis to MC to fibromyalgia. And it also has some of the best CFS results.

So, anyway, my short version of everything above: If you can get out of bed, do cardio exercise. Every day. Do it for only 2 minutes if that's all you can do, but try to work up to half an hour daily, and if you have a chronic pain and fatigue condition, it should improve quite a bit. :)

[Jean in Newcastle]

Reya, I don't want to quote your whole post but that was very interesting. I know that my problem is with my muscles contracting and not letting up. I've tried to get doctor's to pay attention to that for years. I am finally on a finely tuned regimen of higher than normal doses of magnesium, potassium, vitamin D and a tiny bit of calcium (because my calcium runs high) that has helped.

[Reya]

Reya, I don't want to quote your whole post but that was very interesting. I know that my problem is with my muscles contracting and not letting up. I've tried to get doctor's to pay attention to that for years. I am finally on a finely tuned regimen of higher than normal doses of magnesium, potassium, vitamin D and a tiny bit of calcium (because my calcium runs high) that has helped.

 

Potassium for me is baaaaaaaaaaaaaaaaaaaaad. I originally tried that--and BOY, did I regret it! :)

 

For non-broken-chloride-ion-channel people, it's good! Extra potassium is one of the first things to do for cramping muscles for everyone else.

[Jean in Newcastle]

 

Potassium for me is baaaaaaaaaaaaaaaaaaaaad. I originally tried that--and BOY, did I regret it! :)

 

For non-broken-chloride-ion-channel people, it's good! Extra potassium is one of the first things to do for cramping muscles for everyone else.

 

My potassium was on the borderline of where it causes major heart problems. We don't know why, but even with high supplementation my vitamin D, magnesium and potassium hover around the too low mark.

 

BTW - on the whole fibro diagnosis thing - this is why I didn't do the "take the latest fibro pill and call me in the morning" route. I wanted to find out what was causing my particular symptoms. According to one doctor, I'm an onion. Being treated for parasites was a huge step in the right direction for me. Finding out the whole potassium/vitamin D/magnesium thing was another. I still have flares that are "typical fibro". I haven't found a solution for those in 20 plus years yet.