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Old 11-07-2005, 07:28 PM   #1
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Nakisa HB User
New to the board and slightly confused >_>

Hey everyone,

Well.. I guess I'll start from the begining...

I used to be a really enthusiastic person - always cheerful, very social, energetic, quick thinking, pretty intelligent and an all round healthy person. I was always out of the house, whether it was just socialising, doing yoga/jujitsu (sp?) or being at college and my diet was really good.
Looking back now, I guess things started during high school (around 5 years ago, now). I'd miss the odd day/week here and there due to being tired, but at the time I put it down to a mixture of just being a teenager and being lazy, lol.
When I started college (over 2 years ago) things only got worse. I ended up taking even more time off and started noticing things like how my concentration was practically non-existant, my memory was getting bad, I was rarely ever 'there' mentally and I was generally not making an effort anymore - I just felt physically and mentally drained all the time.
It got to a point where I couldn't physically go to college anymore (last year). I was sleeping for 17+ hours a day, if I got woken up rather than waking up by myself, I'd have bad migranes (sp?) and so I decided to do my college work at home. Though, the problem was, even though I did eventually wake up, I still felt like I hadn't slept in days (as you can imagine, I nearly failed college..)
Because it gradually got to this point, it took me a while before I started to think "Hey... maybe there's actually something wrong with me?", so naturally I went to see my doctor (this was in January, this year). I explained everything that had happened and he asked for a blood test, when we got the results, it turned out that I had an underactive Thyroid disorder - he put me on levothyroxine and told me to come back for another blood test in about 8 weeks. I felt no difference what-so-ever from these pills... my doctor spent 10 months changing my dosage until the thyroxine levels in my blood were spot on, which they are now. But still, I feel no different, if anything, I've only got worse.
These days, even though I'm always sleeping, I never feel like I have, usually feel like I'm on drugs all the time, I get easily confused, slow at thinking, I have an awfull memory (long term and short), I seem to be less intelligent, I have no concentration at all, I had to stop excersising because it'd only make things ten times worse, I've become really anti-social, never seem to care about things that'd usually bother me (it's like I've become numb to everything), and to be honest, the worse thing of all is that I'm an amature artist... drawing was my world, but I can't even draw anymore because I'm so tired and even when I try, I have no inspiration because I don't feel anything anymore...
My doctor said it could be Chronic Fatigue, though apparently there's no way to test it in a blood test - the only sign of it is low white blood cells (I think?), which mine are. So, I have an appointment with a specialist on the 5th of december.

I guess I'm posting because I don't know what to expect when I go to see this specialist, I mean... what kind of tests will he do? Or, what kind of questions will he ask me? Because I get so easily lost/confused, I'm worried that everything'll go over my head and I wont benifit from anything.
Also, does this sound like CFS to you? I mean, if it is - how do you guys cope? I never have a day where I feel awake, no good spells or anything. Is there anything you find that helps? I think my doctor said something about getting a good balance between activities.. or something.
Oh yea, because these days, I'll admit, my eating habits are uhh.. poor. Are there any types of foods/vitamins you find help?

Hmm... well I guess that's everything xD I don't know much (if anything at all) about CFS, so any information would be great
Oh! I don't know if it makes a difference, but I'm 19 from the UK. ^^

Thanks for taking the time to read my essay!

-Hannah

 
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Old 11-08-2005, 10:37 AM   #2
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TonyaM HB User
Re: New to the board and slightly confused >_>

Hi,
You are describing the exact way I used to be and feel. I would sleep all day, not even want to get out of bed and still feel unrested. I used to get HORRIBLE migraines and feel horribly weak all over. Concentration, intelligence, everything, gone. Then I went on Cymbalta and now I feel SOOOO much better. I still sleep about 12 hours a day but its better than 18 hours a day and I still feel pretty weak but its not NEARLY as bad. And the most important thing, I am looking forward to doing things again and I am HAPPY!!! I wish you luck!

Tonya M

p.s. have you ever thought that you might be depressed?

 
Old 11-08-2005, 11:26 AM   #3
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Nakisa HB User
Re: New to the board and slightly confused >_>

Quote:
Originally Posted by TonyaM
Hi,
You are describing the exact way I used to be and feel. I would sleep all day, not even want to get out of bed and still feel unrested. I used to get HORRIBLE migraines and feel horribly weak all over. Concentration, intelligence, everything, gone. Then I went on Cymbalta and now I feel SOOOO much better. I still sleep about 12 hours a day but its better than 18 hours a day and I still feel pretty weak but its not NEARLY as bad. And the most important thing, I am looking forward to doing things again and I am HAPPY!!! I wish you luck!

Tonya M

p.s. have you ever thought that you might be depressed?
Thanks for replying ^^

Depressed? Nah, that's one thing I'm 100% sure I'm not. The only thing I find depressing is that I'm always tired, but that's understandable, lol.
What's Cymbalta? I'm new to CFS so I really don't have a clue O_o' Though, I'm glad it's working for you! Best of luck to you, too

-Hannah

 
Old 11-09-2005, 12:20 PM   #4
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Join Date: Feb 2005
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ukiahvalleymom HB User
Re: New to the board and slightly confused >_>

Hannah,
Hi, and welcome! Your initial symptoms sound alot like how mine started, however, within weeks and months more symptoms came on, I've listed some that I remember:

Have you experienced pain in the joints, tissue or muscles? Do you feel like you have the flu sometimes, hurt all over from head to toe?...tho, not to the point of throwing up? Do you experience extreme body muscle fatigue in the afternoons or after exercising? Are the cervical lymph nodes enlarged and tender when feeling the worst? Do you have a slight sore throat... or hoarse voice sometimes? How is your blood pressure does it run low...(<115/70)
and your temperature? low (<97.7) or low grade fever (99.0-101.0)? Have you noticed vision changes ie: blurry, night driving a lot worse? Have you experienced adrenaline rushes at the wrong time, or the feeling of 'fight or flight' for no reason and feels like it's flood gate is stuck open?

I have CFIDS, orginally dx with FMS, here's the Great News, with treatment of the underlying causes I feel so much better!

Good luck with the specialist, please keep us posted, so desire to hear about other treatments from around the world. We are hear to be a listening ear and offer support from our own experiences, uvm

Last edited by ukiahvalleymom; 11-09-2005 at 12:30 PM.

 
Old 11-10-2005, 08:54 AM   #5
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Nakisa HB User
Re: New to the board and slightly confused >_>

Hey uvm,

Hmm.. I often get really achey knees and back (lower and higher). Can't say that I feel pain in my muscles, though I do experience a lot of muscle weakness (I even find it difficult opening jars these days ;_; ). I've never had the flu before, though I often feel like I'm full of a cold, even if I haven't left the house in days. As for excersise, I can't even do that anymore because I feel so weak. What are cervical lymph nodes? *clueless*. I can't say that I get sore throats that often, I do get them but not frequently enough for me to think of them as a symptom. I have no idea what my temperature or my blood pressure is, though I feel cold 24/7 (I usually drag a blanket around with me, lol). As far as my vision goes, it's awfull. When I feel at my worse it seems like my vision's lagging and I often get little blind spots here and there - I try to avoid driving especially at night (I'm worried I'll end up crashing..).
I've never had the adrenaline rushes that you mentioned - I noticed a few people say they have better days than others but, if I'm being honest, I never have a good day.

There were a few other things I forgot to mention as well, I usually experience palpatations and pains in my chest - I had a 24 hour heart monitor for this, the results came back 'relatively normal'. I also get stomache pains quite often that I can't explain (as in, I haven't eaten anything dodgy recently e.t.c.) and for as long as I can remember, I've always had bad hair loss. Another thing is that I suffer from Focal Migranes, I never used to experience those up until a few months back but these days they're becoming more frequent. I have no idea if any of these things could be related to CFS, though...

I was also tested for Anemia and Diabeties, I turned out to be *slightly* Anemic so I was on some iron pills for about a month but now that's all ok, as for the diabeties - there are no probems there.

Those are all the symptoms I can think of right now (including the ones in the first post).

What's CFIDS, dx and FMS? (Like I say, I'm new to this so I've never heard of these things before). It's great to hear that your treatment is making you feel better! It's nice knowing that people with CFS are feeling like they're recovering

Take care and all the best!

-Hannah

 
Old 11-18-2005, 12:01 PM   #6
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woozyguy HB User
Re: New to the board and slightly confused >_>

hi Hannah,

I have CFS and I am on T3. I think it has helped. What were your thyroid results? You say that your doc said you had an underactive thyroid. Are the results normal now then? If so what are the T4, T3 and TSH levels? These together can tell you how your thyroid is functioning. Also what dosage of thyroxine were you on? Some people need both T4 and T3 for optimum wellness. Have a look on the thyroid board of this site and you may get some help there. You seem to get a lot of brain symptoms like me. Do you get this weird off-balance feeling in your head and general uncomfortable feeling which you cant stop feeling and thinking about? I do. It is really annoying at the moment. I still think the T3 is helping even if it is not curing me completely.
Take care
Martin

 
Old 11-18-2005, 05:30 PM   #7
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Nakisa HB User
Re: New to the board and slightly confused >_>

Quote:
Originally Posted by woozyguy
hi Hannah,

I have CFS and I am on T3. I think it has helped. What were your thyroid results? You say that your doc said you had an underactive thyroid. Are the results normal now then? If so what are the T4, T3 and TSH levels? These together can tell you how your thyroid is functioning. Also what dosage of thyroxine were you on? Some people need both T4 and T3 for optimum wellness. Have a look on the thyroid board of this site and you may get some help there. You seem to get a lot of brain symptoms like me. Do you get this weird off-balance feeling in your head and general uncomfortable feeling which you cant stop feeling and thinking about? I do. It is really annoying at the moment. I still think the T3 is helping even if it is not curing me completely.
Take care
Martin
Hey Martin,
I don't know what the levels are, I've never got told numbers or whatever with my results... the last time i went back about my thyroid, my doctor said something along the lines of "your thyroid should produce enough thryoxine for your body, when it doesnt, the brain picks up on this and sends out a hormone to kick start the thyroid (in a sense) so if we can pick up these horomes in a blood test, that's how we know your thyroid is starting to struggle. At the moment, this is what's happening to you, however the thyroid is managing to keep up again, so you shouldn't have any problems anymore." This was after not taking anything for 2 months (before that I had taken 100's, 50's and 75's of levothyroxine to see which suited me better).
I really have no idea what T4, T3 and TSH levels are -What are they? O_o' I never get told the details as they only confuse me/I forget them anyway.

About the off-balance and general uncomfortable feelings, I have them all the time, even when I was taking the levothyroxine I never felt any better, it made no difference whatsoever (other than when I was on the higher dose I got the shakes real bad...)

Take care and all the best

-Hannah

 
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