So exhausted

[Kinran]

For about 1,5 years now I've been feeling really exhausted. I have major problems trying to stay awake at school, and not to mention focusing and doing my work. I usually take a nap once I get home. If I force myself to stay awake, I'll fall asleep in front of the TV/PC anyways. I hardly visit people as I don't have the energy, but tend to go to my grandparents. Sadly I tend to fall asleep there as well, which is quite embarrasing. How many hours I get with sleep doesn't matter.

I freeze pretty much all the time. When my friends are walking around halfnaked, I can pack myself in several layers of clothers and still shiver. I also tend to have problems if it is really hot.

And headaches. Oh God. I usually have headaches almost every day, can't go anywhere without painkillers. It also hurts around my eyes, and sometimes I have migraine.

What else.. It's so hard to know what's relevant as my symptoms come and go. They can last from one hour to two weeks, and then dissapear. That's one of the reasons I've only been to the doc twice in two years now.

Anyways. I'll list the other things I've been experiencing.
- Dizzy. Blackouts. Feel like I am fainting, but somehow I always manage to grab something and stay on my feet.
- Feeling sick.
- tingling or feeling numb in my fingers.
- twitching in my legs. (alot!)
- Feeling that I get a heartattack. Immense chestpain, shortness of breath, feeling numb in left arm etc.
- Pain in my throat. Feels like I have a.. bump there. (Don't know how to explain better)
- Doing weird things like putting a book in the fridge, or other places it doesn't belong. Putting soap on my toothbrush.
- thinking one thing, and writing something else. Usually only one or two words.
- Forget things very fast. Like.. What I had for dinner, names etc.
- Tummyaches. Sometimes cramps, like when I have my period.
- Problems falling asleep. Nightmares. wake up several times every night. Also experienced sleep paralysis, which is really freaky.
- Tend to get really bad when I exercise. If I go all out, I can end up on the floor being unable to stand up. Feeling sick, having immense headaches etc. I also tend to get worse when I am stressed.

I am going to see the doc in two weeks, but I am not sure what to say. What if he tells me that I am experiencing all this because I am a teenager (I am only 16), or because I am depressed (Which I am not. It's not like I don't want to visit friends etc, I simply don't have the energy)? I don't know if I can handle that. I've already been there twice, and that's what he blames everything on. I mean.. Something is cearly wrong with me! Perhaps not ME/CFS as I am fearing, but there has to be SOMETHING right? At least, if I get a diagnosis, people might be able to understand. I might not be bound to my bed, but it's ruining my life. What do you think? Does it sound like it might have ME/CFS, or are my symptoms totally off? And do you have any tips when it comes to my doctor? Anything I can say to make him take me more seriously?

(sorry for my bad english, hope you understand.)

 

[serenity]

it is so hard for us to find an answer when a new person asks "do you think i might have it?" we are not docs so we can't answer that for you, all we can do is advise you to find a good doc who will take your problems seriously, which is easier said than done. i wish i had words of wisdom for the new folks, but i really dont'. just stick around here & listen to what others have to say & decide if you think you fit in.
i'm sure someone else will come along with better answers...

 

[SOC]

Given your symptoms, your parents should be worried. If you have not talked to them about this, do it now.

We can't tell you what is wrong or what to do about it, but your reported symptoms are extensive and complicated -- you should seek help.

Print out the Abridged Canadian Consensus document and give it to your parents and doctor.
http://www.cfids-cab.org/MESA/me_overview.pdf

 

[ixchelkali]

It could be ME/CFS, but there are other things it could be, too. Your doctor needs to take you seriously and check you over thoroughly. Just don't let anyone tell you your symptoms aren't real, or that you're imagining or exaggerating them. It's your body and you have a better sense of when something's not right with it than anyone else. It will help if you can enlist your parents as advocates for you, but even if you can't, don't give up. Get stubborn, pushy and insistant if you have to.

We can't and won't try to diagnose you, but you can come here for moral support as you go through the process of getting a diagnosis. We all know it's not easy, and probably all of us have run into doctors that have tried to dismiss us. You deserve to be taken seriously. Hang in there.

 

[glenp]

Kinran, I do hope that your doctor does not brush you off. I have done as sickofcfs did and printed a copy of the canadian consensus and taken it to my gp, who very much appreciated it. He needs to give you extensive blood tests to rule out other conditions. Make sure that along with TSH that he gets your T3 and T4 readings, as sometimes they can be off. If he brushes you off it is probably best you find another doctor. You can check your physicians ratings here www.ratemds.com. Also look at

http://www.google.ca/search?q=hummi...&oe=utf8&redir_esc=&ei=x_VETKiACpSesQPwkpy7Dg

When you get lab tests or any others ask at that time to have them send you a copy of the results. Many don't like to do this but it is your right. It helps you help yourself in watching your health

glen

 

[L'engle]

None of this is normal for a teenager, or for depression. I had depression as a teenager and it wasn't like that. I got CFS in university (but lost the depression, except in regard to feeling sick) and started having some of the symptoms you mentioned, but yours sound very severe, especially the chest pain. We're all here to listen. Hopefully you can find a doctor who takes you seriously. If they rule out lupus and a bunch of other illnesses, then what is left is a diagnosis of CFS. Is your family at all supportive of your problems? The people in your everyday life should definitely take this seriously. Good luck. You are so young to have so much to deal with, in addition to ordinary teenage stuff, which I remember was difficult enough with good health. Take care.

 

[Sallysblooms]

Do not be surprised if your doctor isn't sure what is wrong. Keep looking for a doctor that does know and can help you. I and most on the forum have seen many doctors. Many doctors just know normal things and it takes someone special to know beyond the normal problems. So, just keep looking and never give up. We all do a lot of reading here and it takes work to get help sometimes. Best of luck to you!

 

[taniaaust1]

You may well have CFS/ME with those symptoms, but you must get everything else ruled out. It doesnt to me sound at all like depression

I am going to see the doc in two weeks, but I am not sure what to say. What if he tells me that I am experiencing all this because I am a teenager (I am only 16), or because I am depressed (Which I am not. It's not like I don't want to visit friends etc, I simply don't have the energy)? I don't know if I can handle that. I've already been there twice, and that's what he blames everything on.

Your doctor dont sound like he's going to be helpful, many doctors out there know hardly anything about CFS and some dont even believe in the illness so I strongly suggest to give him just one more go and if it dont work out this time, then you do need to seek another doctor. Dont waste your energy on trying to convince a doctor who wont believe how sick you are.

You need to go to him prepared eg as others suggested take in a copy of the canadian consensus CFS defination with you to ask for his opinion. (He should from there if he's any good, test you for other things to rule them out).

Also i strongly suggest to copy some of the CFS stuff from the CDC site.. so he can see that this illness is real!! (in case he is a doctor who dont believe in it at all.. harder for him to argue with the CDC stuff). http://www.cdc.gov/cfs/cfsdefinition.htm
Also http://www.cdc.gov/cfs/cfscausesHCP.htm (you can then get it out if needed... it he tries to say that is only in older women)

These things should hopefully help to make him take your situation a bit more seriously.

 

[caledonia]

Darn my other reply went away.

But anyway, I wouldn't bother seeing this bozo again. I would cancel the appointment and go looking for a new doc now. Check out the Co-Cure Good Doctor's list: http://www.co-cure.org/Good-Doc.htm, and the Prohealth list: http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=1131237

When you get your thyroid tested, besides TSH, also get free T3, free T4, and thyroid antibodies. Often they will just test TSH and say you're normal, when in reality the other values are off, indicating thyroid disease.

I would also do a sleep study since you have a lot of daytime sleepiness.

Also, I suggest stopping exercising and trying to pace yourself as much as possible. Save all your energy for the basics of school and a maybe little low key socializing.