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Chronic Fatigue Message Board

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I'm 16, and I have, for much of my life, been dealing with symptoms that I only recently discovered were most likely the result of Chronic Fatigue Syndrome. Prepare for a long post, I gotta vent.

I suppose I had a "gradual onset", although I have heard the hypothesis that gradual onset is actually caused by rapid onset at a young age, yet the body is able to repair, but symptoms return over time. I'm not really sure I know which I believe, but regardless, I have had symptoms appear over the course of my life.

In around 3rd grade, the earliest symptom I remember was joint pain and muscle pain. I stopped all sporting activities because it just hurt. It was not nearly as bad as it is today, but my joints and back always seemed to have a slight ache. I was a kid, I had no idea what was going on.

I had visited the hospital a few times, my mom had taken me a night when the pain was particularly bad. The doctor accused me of seeking attention, and turned me away, and after that, nobody in my family really seemed to believed me anymore.

Fast forward a few years later, perhaps when I was around 11, and I suffered from a rather odd ailment. In one day over a very short period of time, one of the lymph nodes in my neck swelled to a gargantuan size, at it's beak it was probably about half the size of a golf ball. I started a course of antibiotics, no help. Then I started a course of even stronger antibiotics. No help. Then they took a CT of it, and found no explanation. Eventually, it went away on its own. Never had an explanation.

Next came, you guessed it, allergies and asthma! They appeared extremely suddenly. That's the thing about all of these occurrences. They were spaced out, but they all appeared pretty much instantly. One day I was fine, the next I was coughing my *** off. Got diagnosed, got allergy shots, got better. Managed to tolerate my school (the main offender, lots of mold) and stopped shots recently.

After that, I had a rather persistent sore throat. Not because of allergies, at least I don't think. It comes and goes, but it's extremely common for me to get. I always thought to myself "maybe this is how everyone's throat feels?" Looking back, I remember when it didn't feel this way. It was nice.

Mind you, I can't exactly remember every time a symptom reared it's head, I only have a few memorized because of the long medical pursuit many of them entailed.

Fast forward to about a year and a half ago. My pain was pretty constant, I guess I was to the point I didn't even really think about it. When you live with joint and muscle pain since you were 8, you kinda become a bit desensitized, block it out. Every once and a while it kept me awake at night, but I managed.

Over a couple of weeks, I started to get headaches, the gradually built up. I didn't tell anyone for a while, I ended up taking 2 Asprin, 2 Aleve, and 2 Advil before I went into school just to make it through the day. I eventually confessed when it got extremely bad, it had become a migraine. I was also tired. All the time. I had been sleeping at 10 and waking up at 6, and I had been fine. But suddenly I just couldn't keep my head up. I was sleeping in class. It was debilitating. However, something else developed.

My mom and grandma had Interstitial Cystitis, and I got to inherit it too! Bam, bladder symptoms hit me like a rock. This is another post for another forum (although I'm happy to say that my treatment regimen is really helping me). This originally made me think Lyme Disease or Post-Lyme (I had the rash as a child), but my blood tests showed no signs of antibodies, so it was ruled out. Since I am responding to treatment for IC, I don't think the two are linked. However, we didn't actually even consider this until about 2 months ago, so all my testing was done with both sets of symptoms in mind. Just a note.

So, time for migraine treatment as I was sent to a urologist for the other stuff. They gave me the heavy stuff. Maxalt that knocked me out for 16 hours at one point, in fact. But my headache was continuous, every time it remissed, it came back. I even took a two week course of Prednisone, no luck.

It took me over four months to kill that headache. Eventually, I got it gone with tinted glasses and blood pressure reduction (can't remember the exact drug).

But after that headache, I never felt right. My memory felt less sharp. I was forgetting things quicker. I could read a sentence and forget it. My brain felt foggy, what was easy before seemed so difficult. I am a pretty smart, intellectual person. I always grasped reading extremely well. I could read better than most middle schoolers by the time I was in third grade, and that's not an exaggeration. As soon as it snapped in my head, it was there. I was always smart.

But then I felt dumb. Why was it taking me two weeks to finish a lesson, when before this happened I was doing in excess of 10 a day?

And why was I still so tired? They changed my schedule, but still. I still felt like I didn't get much benefit from sleeping in. Interstitial Cystitis didn't allow more than 8 hours of sleep, anyway.

Now comes a year-long hunt for what caused the symptoms. Probably about four blood tests, eight urine tests, a test involving the quite unpleasant insertion of a catheter, being told by doctors that I am a liar, a CT scan, an MRI of both my brain and spine, and shame from my mother and stepdad. And after we ruled out MS, that was it. Nobody believed a thing I said anymore. I was just lazy, or bored, or depressed, or suffering from PTSD from my abusive childhood despite no other symptoms of it.

And it took me so long to finally figure it out. Interstitial Cystitis, I mean. I figured I would start treatment for overactive bladder, see if it works. But then I realized that you could not have chronic bladder retention with overactivity. That led me to Interstitial Cystitis, something that has a history in my family. It is also linked to migraine headaches and Chronic Fatigue Syndrome.

I told my mom about IC, she agreed hastily to help. She had it, she knows how bad it is. But then I mentioned Chronic Fatigue Syndrome. A hesitant nod and a moan under her breath. She makes it clear that she doesn't believe it exists.

When I saw CFS for the first time, I knew that was the answer. I knew it. I have nearly every symptom on the list, or have had every symptom on the list. It was currently undetectable. It described me. I saw it, it was a bright revelation.

But my mom never let me see a doctor about CFS. I mentioned it to my primary doc, and he said it was possible, but didn't give any other advice. My mom refused anything more, she just gave me fish oil and an antidepressant (in this case, Stablon, an imported French medication). Now, Stablon is an analgesic, so yes, this actually did help a little bit. Not much.

And I guess I feel stuck. Because I hate the feeling that I am unwanted in the spoonie and CFS community, because I wasn't allowed to get a diagnosis and have resorted to self-diagnosis (an educated one based on test data, but none the less, it is looked down upon.

I have gone through all of the CDC diagnosis steps. I was with my doctors every step of the way through the medical process. I understood every test, every possible disease.

I plan to get a proper diagnosis when I turn 18, hell, maybe the day I turn 18. But until then, I need to vent. And this community, since learning what I have, I guess it's something I want to be a part of, because as someone who went through all of this alone for over a year, I can honestly say, it sucks.

But I guess I feel stigmatized, like nobody would take me seriously. I'm not a physician. I am often excluded from "adult topics" because of my age, and self-diagnosis of disorders is very prevalent among teenagers. It is seen as a sign of ignorance.

Even if I am an exception to the rule, I can't shake the feeling that everybody is shaking their head at me when I try to talk to them or relate to them.

Most people have no idea what it is like to go in for invasive tests, to be ridiculed by the people you are supposed to trust. To be described as a "hypochondriac" or "psychosomatic". But I did everything. I researched Lyme disease, MS, and many other illnesses and ailments. Birth defects, spinal defects. But in the end, when I finally got back that final MRI scan, the last trust that doctors had put in me, I wanted to cry.

I guess when they told me there was nothing wrong, I should have been happy. I don't have MS, that's good, right? Yet I teared up. I looked through everything. I tested for everything. I has more control over this whole investigation than my parents, despite the verbal bashings, they essentially wrote me a blank check and told me to go to town (We have an extremely lavish healthcare plan, despite financial instability). But this was the end.

And I got extremely, extremely depressed. And nobody understood. And I burst out in anger a few times because my parents insisted that I was feeling "all better" when they talked about me to other people.

But that's the thing. I'm not better. My depression is handled, sadness mostly turned to angst because of how I've been treated. My Interstitial Cystitis is responding positively to treatment. My brain isn't as foggy as it used to be and I am at a school that is much easier, but the pains are still very much alive, in fact, the last two months have been hell on Earth in terms of pain, to the point my day-to-day activities aren't even safe.

My parents keep considering me their pack mule. I am given their physical labor.

Sometimes even holding up my phone is a challenge, because the muscles in my arms are so weak and tired. Writing often inflames my hands to the point it is nearly unbearable. And the neck pain, oh god the neck pain is probably the worst.

So why did I come to write this insanely long post? I had an incident of Orthostatic Hypotension that reminded me how frail I am. I stood staring into space confronting darkness as I stood, as my vision blurred and darkened. I was helpless. And I'm scared. And I'm tired. How am I going to get a job? I don't even know.

I feel so battered, and I needed to talk, regardless of who actually decides to read this.

One thing that bothers me so much, as I mentioned, is definitely bearing the stigma of being self-diagnosed. Because you have to understand. I tried, I tried to convince my parents that this is not some phase that will go away, not a cry for attention. But it's over. I got my year to look, and time is up. I interviewed people with CFS, they describe it exactly as I do. Like, exactly. Same words and everything. I noticed immediately. And I think that if I tell people "I'm self-diagnosed" they are going to assume I got these symptoms and jumped to an easy solution. No, it's not like that. I actually went through all the diagnosis steps. I got all the tests. I did.

Anyway, if you read this, I thank you. I needed to get this off my chest. I feel so scared. I have a year and a half until I'm 18, and I have to live like this without any support from my family or recognition from a doctor.

Anyway, this is the end of my rant. However, I figured I would list my CFS symptoms while I'm here.
Mental and physical malaise
Unrestful sleep
Difficulties with memory (lesser of two, short term) and concentration.
Persistent muscle and joint pain.
Frequent headaches.
Tender lymph nodes (comes and goes)
Persistent sore throat (comes and goes, typically around half of month spent with soreness)
Brain fog.
Orthostatic Hypotension (Comes and goes at random intervals)
Eye pain (Throbbing, mainly in left eye, not always apparent but persistent)
Blurry vision (occasional)

Yup, it's a pretty big bag of symptoms. I wouldn't say I have it as bad as some. I reject taking it easy, I know it's wrong, but I need it to feel like I still have a little bit of control, you know? I often do things I know may not be the best, but I do them because I feel like if I don't, I will start to settle and end up living in bed. No offense to people that need to do that, I may someday, but I guess I feel like I'm too young to give up my golden years, even if they have been heavily reduced in quality.

Alright, thanks again for reading, if you did.

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