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Old 04-16-2008, 09:21 AM   #1
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CDS75 HB User
Sick of being tired and far too young to be dismissed.

I am 32 years old. In 2003, (at 26 years old) I herniated a disk at L5-S1 while working as a nurse. I also (within 24 hours) developed muscle spasms b/t my shoulders all the way up my neck (it was a whiplash type injury). I eventually had surgery, after 6 months of the herniation pressing on my spinal cord (workers comp wouldn't allow an MRI, when they finally did I had surgery 8 hours later).

The nightmare stress and pain I endured while in the workers compensation system was unimaginable to say the least. Because of the delay in treatment (or lack of treatment) I was diagnosed with fibromyalgia.

Fast forward to mid 2006, after a suprise pregnancy, I developed severe, unrelenting fatigue. The docs added CFS to my growing list of diagnoses. No added bloodwork to rule out anything else. I have basically been in my house since then. The first year was awful and has only improved slightly since. I cannot care for my children, I cannot work or cook or clean. I am doing well if I am able to shower. I leave my house about 1-2 times per month (usually for doctors appts).

I am now (armed with the slightest increase in energy and workers compensation free) determined to rule out any other possibility. I simply cannot believe doctors would saddle a 32 year old with this kind of diagnosis without more investigation. The problem I find with doctors is they either don't believe the severity of my fatigue and say its depression (HECK YES, I AM DEPRESSED. I am constantly exhausted.), or dismiss me saying Fibromyalgia causes fatigue. Yes, however my fatigue didn't start until 6-7 months after my pregnancy.

I have gone to the CFS/FM support group in my area 5-6 times ...everyone is AT LEAST 15-20 years older than me. They don't understand what it is like to be raising 2 children under 10 while laying on the couch 24/7. My husband is great but extremely stressed out (working full time while taking care of a 2 yr old, and a 10 yr old, and being both mom and dad, and a full time caregiver to me). We do not have extra help besides a cleaning lady every other week.

I think I have found a new general practitioner. I have scheduled a physical for next week and I NEED TO KNOW what tests I should demand. I want to eliminate every other possibility before I accept the next 40 years of my life being confined to my house. I feel like so many doctors are just handing out this CFS sentence without really looking for anything else. I don't care how much it costs. I want my life back.

 
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Old 04-16-2008, 09:32 AM   #2
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Re: Sick of being tired and far too young to be dismissed.

Hi,
I feel your pain. Really. I am 24 and have recently developed all those same symptoms, although I thankfully don't have young children to take care of. My doctor is puzzled so far because my first round of lab results have come back normal. We are waiting on the second batch. She says if we rule everything else out, generally the diagnosis becomes CFS!
Anyway, here are the tests she ordered, so you might want to consider these.

CBC with differential -- counts your blood cells
CMP (complete metabolic panel) -- this includes a test for blood sugar among other things, but if you are concerned about that, there are more in-depth tests as well; also kidney and liver function
cortisol (to check your adrenal glands)
TSH and free T4 (for your thyroid)
There is also T3 for your thyroid

and the second batch...

Epstein-Barr virus IgG and IgM
Lyme titer
ANA panel (this checks for a variety of autoimmune diseases)

Good luck!

Last edited by knittygirl14; 04-16-2008 at 09:34 AM.

 
Old 04-16-2008, 05:28 PM   #3
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Re: Sick of being tired and far too young to be dismissed.

Hi CDS, I too started on a workcomp claim when I was in my 30's. Trust me as soon as I found out almost 9 years later what were my REAL problems I said let me away from you people. So I totally understand that part of what you went through...ugh!

Anyway I agree with Kitty, have other test done. This is what happened to me. When one is ill with bacterial or viral illnesses they get in your bone, muscle, tendons, BRAIN, organs ect ect...They are the underlying problem for I feel from what I have been through and what I have been learning. Majority of our so called conditioins, and diseases are caused from these....

Might I strongly suggest getting tested for Mycoplasma pnumoniae, Chlamydia pnumoniae, cytomeglovirus, Lyme disease (test for lyme is not accurate) but would have a western blot done...Get tested like Kitty suggested for Epstein Barr Virus. Doesn't matter if it is past infection or reactivated infection. They still cause problems There are other herpes they can test for also.

We all hold many bacteria's and virus's in our system. When we have things done such as surgeries, stress, or our immune system breaks down it is like opening pandora's box...and these critters get activated.

some is making you exhausted. A persons body just does not get like this, there is something wrong...

I wish you so much luck in finding answers. Keep looking it is your life!

 
Old 04-17-2008, 10:06 AM   #4
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Re: Sick of being tired and far too young to be dismissed.

Thank you both!

I have had the basic tests done:
CBC is usually normal with the exception of when I am sick.
CMP - LDH - 284 High (100-250)
Lipids - LDL Cholesterol 119 High (0-99)

Thyroid - all normal - but I had 2 doctors order labs 4 days apart. Look at the difference in TSH. I thought TSH stayed fairly stable but mine went up quite a bit in 4 days.

2/14/08
TSH 1.093 (0.350-5.50)

2/18/08
TSH - 2.181
Thyroxine (T4) 8.2
T3 Uptake 30
Free Thyroxine Index 2.5

I have been investigating the Thyroid tests a bit, mostly because I have some symptoms of hypothyroidism (the outer 1/3 of my eyebrows are almost gone, I am having a lot of hair loss, acne, hot flashes). I read that they really need to do an thyroid antibody test (which has not been done) when symptoms are showing.

I also show signs of Adrenal insufficiency so I am going to ask to have that tested but I am not sure which specific test to request.

I know they did a lyme titer in 5/05 that was negative but its not a reliable test. I am going to ask for that again and a western blot

I will request the Epstine barr test - thank you both. I know I had mono when I was 10 but it could be reactivated. Do you all know what they do for that?

I just saw a Rheumatologist in the end of March. He ordered :
ESR
ANA profile
RF - which has been positive for me in the past
C reactive protein
Urinalysis with micro
Hand and foot X-rays
- But everything was normal. I have been on plaquenil since september because of finger and toe joint pain. I have heard plaquenil can normalize labs. Has anyone else heard that?
- the Rheumatologist then ordered a MRI of hand and wrist - I got the results of that yesterday: The impression was - MRI CONFIRMS joint inflammation (synovitis) with some early erosive disease.
I was completely shocked because I am so used to everyone telling me my results are NORMAL! I believe those results may indicate early Rheumatoid Arthritis but I am not sure. I go back to him in the beginning of May.

I just got a referral to an endocrinologist (in our area they REQUIRE a referral before they will see you).

2006 - after my pregnancy, my liver enzymes were elevated for over a year. Every doctor who hears that says it is "weird". They are back to normal now.

Knittygirl - thanks for the response. I didn't know about the cortisol until I read your response. I investigated that a bit and I will definately ask for that!

Jojo - thank you for all the virus/bacteria info. I appreciate that. I will ask for all of those! What happens to you if those become reactivated? Is there anything they can do?

Last edited by CDS75; 04-17-2008 at 10:08 AM.

 
Old 04-17-2008, 02:03 PM   #5
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Re: Sick of being tired and far too young to be dismissed.

It is such a struggle trying to get the right tests sometimes. I had my doctor refuse to do thyroid antibody tests because my TSH was "normal" even though it had risen from 1.7 to 2.3 or so. Some national association of endocrinology (don't remember the exact name, but whoever sets the standards) lowered the cutoff to 3.0 recently but a lot of labs and doctors still go by 4.5 or 5.0. So it might be worthwhile to press for it if you are really concerned.
The cortisol is made by your adrenal glands so that should be a way to start looking at adrenal insufficiency. That's my understanding anyway.
Also, I think if you look at your CBC and your lymphs or certain other types of blood cells are high, it can be an indication of fighting off an infection, so that might tip you off. Although mine have always seemed normal. Isn't it frustrating when people keep telling you you're fine when your body is telling you you're not?

 
Old 05-08-2008, 08:44 PM   #6
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Re: Sick of being tired and far too young to be dismissed.

Have you tried juicing? The government recently changed the food pyramid to say everyone should eat 10 or so fruits and veggies a day minimum! The only way I know to do that is to juice everything. Maybe drink more than the recommended amounts. Another option might be to try supplements made from food. bless you!

 
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