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Old 01-24-2006, 10:31 PM   #1
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December716 HB User
Is it worth it to attempt to get a diagnosis?

I definitely suffer from all the symptoms of CFS and have since I was in ninth grade of high school. I did try getting some diagnosis when I was in high school and was completely, totally dismissed. My pains were "growing pains", etc. People thought I was lazy and forgetful. It was very frustrating.

It was incredibly hard for me in high school. In a three month period (a quarter) I missed approximately three weeks of school, all completely related to be so sick and fatigued! And even when I did attend school, the first thing I'd do when I'd get home was go to sleep. I barely had time for homework or anything else. Also, P.E. was the worst for me. I dreaded it and hated it. I'd almost physically get ill from it, especially after the exertion, and the teacher always dismissed me.

I'm in college now and I still struggle with the fatigue and tiredness. I always seem to have to nap when I get home and I usually spend the weekend completely in bed, exhausted and worn out. I had a part time job for a while and I couldn't even manage it! I was so worn out mentally and physically I'd call in sick all the time. I just want to cry sometimes because I wonder what will happen after college. I want to be able to work and feel great and make money.

I've had my bloodwork checked and rechecked and checked again. It was discovered I had a thyroid disorder (hypothyroidism) in high school and I've been on treatment for that. They've adjusted the levels many times to no avail. I take the medicine, but I'm still fatigued.

I guess what I want to know is is it worth it to try and go back and fight the doctors for a diagnosis? Is there even treatment? I've tried over the years to get a diagnosis, but just get frustrated and give up after they run the lab work and say I'm fine. I've been to many different doctors and they always dismiss me, even when I say I can sleep up to 18 hours and feel exhausted still.

Anyway, thanks for any advice or responses. I guess I just wanted to vent because this is something that continues to have my life in a tight grip. It makes everything seem a billion times harder.

 
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Old 01-25-2006, 04:10 AM   #2
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Re: Is it worth it to attempt to get a diagnosis?

You are not alone. Many of us with this illness have experienced misinformation and ignorance from the medical community. I would try to find a doctor who (trully!) specializes in CFIDS. I have also found alternative therapies more beneficial to treat. I think one of the most difficult aspects of this illness is not having it validated by a diagnosis, so in this respect I would push on until you can find someone to rule out all other possibilities, via blood work, etc. so that the proper diagnosis can be made. Don't let anyone try to convince you that your problem is your thyroid (unless it isn't actually under control). I also have Hypo and Hashimotos, but CFIDS is a different animal and will not go away simply because you are taking thyroid meds. Wishing you all the best and do use this board for support, especially since you don't seem to be getting it elsewhere.

 
Old 01-29-2006, 11:17 PM   #3
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Re: Is it worth it to attempt to get a diagnosis?

Thank you for the response! My thyroid level is perfectly fine and has been for years but the fatigue never lets up. I literally have to take a nap whenever I come home from going out (even if my physically activity is nothing more than walking a few steps to the car/store/whatever). Physically activity will have me asleep and resting for a very long time. It's awful and interferes with my life in every single area.

I guess I need to go back to the doctors. It's just so hard. I literally have no energy to even stick it out through the process of getting diagnosed. It's always the same old story. I go in and list off my complaints. They do bloodwork. The results come back completely normal. They offer absolutely no solution, or attribute it to something else. I have no energy to fight them. So on and so on.

I live in an area with two Chronic Fatigue Syndrome Clinics, but you have to have referrels to go there.

 
Old 01-30-2006, 04:31 AM   #4
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Re: Is it worth it to attempt to get a diagnosis?

It's imperative, then, that you get the referrals. The blood work a non CFIDS doc does will always look like you're healthy. You need the specific tests for CFIDS such as Herpes 6, Chlamaydia Pneumoniae, and some Epstein Barr Viruses as well as testing for Mycoplasma and Cytomegalovirus. "Normal" docs don't do these blood tests. They probably don't even know what to ask for and if you ask them to do them they wouldn't know how to intepret them anyway. If you keep seeing these docs likely you will become more depressed with their misinformation which just contributes to more stress; thus, an increase in symptoms.

 
Old 01-30-2006, 06:24 AM   #5
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Re: Is it worth it to attempt to get a diagnosis?

Thank you. I will try to get a referral as soon as I can. I have had Epstein Barr when I was younger, and Coxsackie virus, which I just read might be linked to it also. You are right, though. Any type of stress does seem to incapacitate me. I had to actually leave school the other day after getting stressed out just to come home and rest in bed. I feel like I'm 90 in a 21 year old body sometimes!

Thanks for listening!

 
Old 01-30-2006, 07:16 AM   #6
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peregrine HB User
Re: Is it worth it to attempt to get a diagnosis?

Quote:
Originally Posted by December716
Thank you. I will try to get a referral as soon as I can. I have had Epstein Barr when I was younger, and Coxsackie virus, which I just read might be linked to it also. You are right, though. Any type of stress does seem to incapacitate me. I had to actually leave school the other day after getting stressed out just to come home and rest in bed. I feel like I'm 90 in a 21 year old body sometimes!

Thanks for listening!
Yes, Coxasackie virus is also often involved in this illness. Take care. Wishing you the best.

 
Old 01-30-2006, 06:46 PM   #7
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Re: Is it worth it to attempt to get a diagnosis?

Quote:
Originally Posted by December716
Thank you. I will try to get a referral as soon as I can. I have had Epstein Barr when I was younger, and Coxsackie virus, which I just read might be linked to it also. You are right, though. Any type of stress does seem to incapacitate me. I had to actually leave school the other day after getting stressed out just to come home and rest in bed. I feel like I'm 90 in a 21 year old body sometimes!

Thanks for listening!
Hi, I can so relate to feeling like 90! That was how I described myself to my doctors in the beginning...2003-2004 until the dx. Now, with the medical treatment I have rec'd for CFIDS, many of the underlying problems and symptoms hav been eliviated. I'm feeling energetic, and enthusiastic about life again, please, don't stop seeking dx and treatment until you have found the right mix for yourself, okay?
uvm

 
Old 01-31-2006, 10:24 AM   #8
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Arms HB User
Re: Is it worth it to attempt to get a diagnosis?

I'd recommend to anyone that has CFS to have a sleep study done. I've found that many time sleeping disorders are overlooked such as sleep apnea, which is more common than people realize. If you really want to pursue any area i would definently recommend that you have a sleep study done on you to make sure that the sleep you are sleep is actuallly helping, the doctors can tell you much more from a sleep study.

 
Old 02-05-2006, 07:06 PM   #9
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Re: Is it worth it to attempt to get a diagnosis?

I don't think I have sleep apnea. I don't snore, nor has my husband (who has watched me sleep before) noticed anything. I also get very good sleep (REM sleep with dreams). It's not that I'm sleepy, just worn out. Achey and fatigued. Not sleep deprived. Sometimes my mind will be completely sharp and everything, but I have to lay down because I am so worn out by everything (everything being going out side for a while, or going to college, etc.)

It's actually really interfering with my life. I get up for school really early (5:00am-ish), and by the time I'm finished with all my classes (usually 12:30pm) I'm so exhausted and fatigued, I just go home and curl up in bed. I do most of my homework there, but the stuff I need to use the computer for (such as reports and everything) I have to wait until the weekend to do.

I don't know how people with severe CFS can function. I wonder what I'm going to do when I finish school. I feel like I won't be able to work. I had to stop working part time last quarter of school because I was so sick with fatigue.

 
Old 08-20-2006, 09:15 PM   #10
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Re: Is it worth it to attempt to get a diagnosis?

if you can sleep without meds and are getting refreshing sleep then i kinda
doubt cfs/cfids, but if you want more extensive testing redlabsusa (.com) has info on more specific tests (like elevated rnaseL among others)

 
Old 08-24-2006, 03:54 AM   #11
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Re: Is it worth it to attempt to get a diagnosis?

Hi there, sorry to hear about your situation. I'm not sure if your blood tests involved any allergy testing, but if it didn't you might find it beneficial to see if you have a food allergy or intolerance. I suffer from a wheat intolerance, and at it's worse can be incredibly debilitating. I underestimated the ability of what an allergy could possibly do to me physically, never again! Chronic fatigue, memory loss, tiredness and the list goes on. Have a read online under wheat allergy/intolerance symptoms, or gluten intolerance, or better yet get a blood test that tests you for most food groups and see what comes your way.
Goodluck and all the best with your health.

 
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