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Old 02-20-2012, 06:05 PM   #1
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elloise HB User
Beginnings of CFS?

Following symptoms for 7 weeks now...

- fatigue including body aches, joint aches (right down to my fingers)
- numb and tingly hands
- dizziness
- problems concentrating
- problems remembering things
- trouble sleeping in 3ish night lots
- the rest of the time - able to sleep way too much (an extra 5 hours here and there in the middle of the day with no effect to normal bed times)
- body twitches - eyes, leg
- occassional racing heart at random times
- occasional headaches

I had blood tests and was told I had low B12 - the number was 133. Doc said it's low, but not low enough to be too worried about - he put me on high potency B12 pills which I've been taking for 6 weeks. Will get this retested soon.

Second round of blood tests tested for glandular fever, ross river virus, barma forest, etc - all came back negative.

In both tests I had a high level of inflammation - the number was 15 (I don't really understand this but the DR said it usually means you have a virus of some kind, anyway it stayed 15 for both tests which were a week apart)

Went to a specialist today and he's testing for a whole pile of other things..... he said Chronic Fatigue takes like 6 months to diagnose so just wondering.. does this sound like the beginnings of Chronic Fatigue?

 
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Old 03-11-2012, 02:57 PM   #2
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Re: Beginnings of CFS?

elliose:
Did your symptoms start with any kind of a illness first? Or stress? Or something that triggered these symtpoms? This post is a few weeks old. Any new news? Your symptoms do sound like CFS. Let me know. Hope you found some answers. LaLa

 
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Old 03-12-2012, 03:50 AM   #3
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Re: Beginnings of CFS?

Hi Lala,

It's been weeks of different tests.. and at some stage I tried thinking backwards.... I did actually have major migraines for about 2 weeks (most days) back in October... and had a bit of major body flu symptoms a few days in December... but all the above didn't really start until 9 or 10weeks ago.

I've been tested for lots of things.. (what I can remember)

Glandular Fever
Barma Forest Virus
Epstein Barr
Malaria
Lupus

Everything is coming back negative...

Then last week I had some blood in my stool so Doc wants me to get a colonoscopy to just double check for tumours etc.. not sure if this is related to the other stuff... before that, wasn't having any bowel probs at all

Hmm I'm not sure about stress? There is always major things going on but it doesn't usually effect my body....... not sure about that

I'm still looking forward to finding some answers!!

 
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Old 03-12-2012, 05:04 AM   #4
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Re: Beginnings of CFS?

Elloise:
I am thinking lyme disease. Have you been tested for that? If not lyme, have you been to a rheumytologist for inflammation? Just a few suggestions. LaLa

 
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Old 03-16-2012, 08:44 PM   #5
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Re: Beginnings of CFS?

I am off to get blood tests for Lyme Disease this week. From what I hear though, if this test comes back negative it doesn't necessarily mean I don't have it. If that's the case, and the Colonoscopy comes back fine, my next thought is I'll go to a Lyme Specialist (it's a pain and expensive but if it's Lyme, I don't want to be misdiagnosed with CFS in a few months!)

Thanks for your help

I'll ask my specialist about rheumetology (I think I may have done a test for this... hmm so many tests!!!!)

 
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Old 03-26-2012, 10:23 AM   #6
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Re: Beginnings of CFS?

A Rhumetologist specializes in CFS, FM, ect. They will be a huge help for you!
__________________
~♥Tori♥~
Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
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Old 04-14-2012, 09:26 PM   #7
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Re: Beginnings of CFS?

Turns out my specialist already tested rheumatoid.......

Last week had a CT scan - brain, abdomen and pelvic area

On Tuesday will get results from CT and Lyme Disease

Good times!

 
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Old 04-18-2012, 07:40 AM   #8
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Re: Beginnings of CFS?

In case anyone is interested.... lol.....

CT scans came back all good.

Another urine test result came back too... it says I have very low cortisol.

I am off to get a "Short Cynacthen Test" on Monday (basically they pump you with adrenalin and see what response your body gives.... taking 3 blood tests over 90 minutes)

And then a "Sleep Study" in a few weeks time just to check all bases. I don't think this will help much but who knows! I'll just keep doing all the tests til we get to the bottom of it.

Does any of this stuff resonate with anyone???

 
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Old 04-18-2012, 08:16 AM   #9
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Re: Beginnings of CFS?

Of course we care!

I didn't know cortisol could be tested. I wanna have that done...

I've always felt the same in the sleep steady... I know I sleep deeper because of my muscle relaxer but without it I'm a light sleeper & can't fall asleep till about 3am. I couldn't see them telling me something I don't already know... But there have been a lot of people that found out allot about themselves because of doing it. Hopefully it'll help!

Other than the sleep steady, I run every test possible. It helps ease the mind
__________________
~♥Tori♥~
Fatigue & Derealization (PTSD?) 1999
Hypothyroid~ 2003
Back injury~ 2005
Severe Degenerative Disk, Arthritis, Mild Scoliosis.
Fibromyalgia diagnosed 2009
Neuropathy
Migraines?

 
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Old 04-30-2012, 06:17 PM   #10
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elloise HB User
Re: Beginnings of CFS?

I got results from the short synacthen test today - all responses were normal. So he said the initial low cortisol was (once again) a red herring.

Now for the sleep study at the end of June...

The doctor seems to be coming to a bit of a dead end on all levels..... I think if the sleep study comes back normal he'll just slap on a CFS label, but surely there has to be a cause? How can I just suddenly be sick for no reason...

Does anyone have any ideas as to what else I could get him to test???

Thanks heaps

 
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Old 04-30-2012, 08:07 PM   #11
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Re: Beginnings of CFS?

elloise:
I still think you should explore lyme and i also still think you should go to a rheumy. Usually a high inflammation results is abnormal. I would explore that as well. I am still suffering with a balance issue and tinglling on the top of my head and i have no answers. i also get eye twitching and severe neck pain. Also insomnia. My list goes on and on and i have no answers. The worst part of it is the balance. I don't fall, but i feel off balance. It is awkward to walk. Good luck and keep us posted. LaLa

 
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Old 04-30-2012, 08:27 PM   #12
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Re: Beginnings of CFS?

Thanks for that. I'm thinking the same thing with Lyme. The Lyme test he did came back negative but I think that it's non-conclusive (although he seems to think it's conclusive, he's not a Lyme Specialist and I don't think he knows much about it)

So my next step is Lyme Specialist. I'll get onto that this week.

The inflammation marker is back to normal now - so perhaps I had a virus/something wrong in my system and now it's gone and has set something else into motion? I don't know. Guessing!

I'm sorry to hear they haven't gotten to the bottom of your sickness either. It can be quite frustrating and disheartening but we have to keep positive!

 
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