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Old 09-18-2010, 03:31 AM   #1
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Join Date: May 2006
Location: UK
Posts: 168
benzos HB User
Would appreciate your thoughts. CFS?

In the early part of this year after going countless times to the doc for this that and the other, a young doctor suggested I may have CFS. That was it. It was suggested then dropped. No idea why.
These are my symptoms that have bee going on for at least a couple of years.

Months on end with complete lethargy...all I want to do is lie down, not particularly sleep, just rest. I feel this because I feel drained physically and mentally. May have the odd few days where I seem to be picking up then crash..feel the same again.
Poor concentration...brain fog
Blurry vision on and off
I have fibromyalgia ( 10 years)
Muscle aches but especially joint pains
Acid/bile reflux - always full of wind
Difficulty swallowing sometimes
Difficulty breathing every day comes in bouts..worse for exercise.
I feel slow, in mind and movement, like my battery is about to give up!!
Get confused easily if a lot is going on around me..makes me irritable
Nausea sometimes
tinnitus
Feeling dizzy like near to fainting that passes .
Decreased appetite.
Sinus problems
Low mood but docs have never suggested anti depressants

Had three viruses back to back just before doc suggested I had cfs
Had heart checked..ok. I collapsed on the treadmill though.
Normal blood tests including throid - all ok
Am in menopause
Lung function apparently ok ( my biggest surpirse!)
Always 98/99% oxygen levels when its been tested
Blood pressure reasonable.
Chiropractor says I have several back problems ( spinal)

Its this utter feeling in a fog thing, distant, always exhausted especially if I move around too much. I am only slight in build so its not a weight issue.
Sometimes and like out of the blue, I will get sudden bursts where I feel like dong a lot..talk a lot, move around a lot etc...I havent got bipolar!

Every doc I see just seems to think I am an acid reflux case full stop. I cant seem to get through to them how my life has changed so much. I have never been lazy and have brought up 4 children. Dont want HRT treatment and it hasnt been suggested.
I dont know what to do or think next. I keep hitting brick walls.

Any advice?
Thanks

 
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Old 09-18-2010, 06:05 AM   #2
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Join Date: Jul 2010
Posts: 326
dhurlbert3 HB Userdhurlbert3 HB Userdhurlbert3 HB User
Re: Would appreciate your thoughts. CFS?

You all almost a complete identical to me with the symptoms. I also am raising 2 young children and in menopause. I've had drs go so far as to tell me that i am a full time working mother of 2 young children and to just rest and deal with it!!!!!! Long story short after demanding that my dr look into my thyroid more closely including and ultrasound of it that i learned that i have hypothyroidism and a mass in the right lobe of my thyroid. I'm a month out from having a total thyroidectomy and i'm about 70-80% better now than i was. I'm still trying to get adjusted to my new life and meds but i dont regret my decision. My advice is dont listen to the damn drs that tell you are normal just because your labs are(mine were normal to) and find a dr that will treat you by your symptoms and listen to you. We know our bodies better than they do.

 
Old 09-19-2010, 12:21 AM   #3
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Join Date: Oct 2009
Location: Saskatchewan, Canada
Posts: 58
Sweety2002 HB User
Re: Would appreciate your thoughts. CFS?

See, the thing with CFS is all the blood tests and other tests that they do MUST rule out all other conditions. Then if all tests come back normal, they start suggesting CFS cause they have ruled out other options. There isn't a specific test for CFS, unfortunately.

 
Old 09-19-2010, 01:39 AM   #4
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Join Date: May 2006
Location: UK
Posts: 168
benzos HB User
Re: Would appreciate your thoughts. CFS?

Quote:
Originally Posted by Sweety2002 View Post
See, the thing with CFS is all the blood tests and other tests that they do MUST rule out all other conditions. Then if all tests come back normal, they start suggesting CFS cause they have ruled out other options. There isn't a specific test for CFS, unfortunately.

They have done all routine blood tests. one of which was thyroid. Once that is ok they wont look further because it's been eliminated. I heard that thryoid blood tests were not 100% reliable but who am I to tell a doctor that? I dont know what else test wise they should be looking at. Becuase we dont pay for our health care in UK its difficult for us to call the shots. I am having one last attempt this week and going to see a different doctor in my local surgery. Writing everything down so if I dont have time to discuss it all before being ushered out ( 10 min slot), at least she may have time to read it later and give it some more attention.

I do realise these are symptoms that cover a lot of areas and it must be diffiuclt for them. I got the impression once bloods were ok, heart proved fine and lung capacity isn't an issue they just lost interest.

Thanks for your replies, appreciate it.

 
Old 09-19-2010, 02:59 PM   #5
Member
(female)
 
Join Date: Oct 2009
Location: Saskatchewan, Canada
Posts: 58
Sweety2002 HB User
Re: Would appreciate your thoughts. CFS?

Benzos.........They test a lot of different things besides thyroid. They test for things that can cause fatigue, as the number 1 complaint before diagnosing one with CFS, should be overwhelming fatigue that does not go away with rest or sleep.

Here are a list of some of the things they can check. You can always use Google to see what they are for, as I had to do.

CBC, ESR, Renal Function, Urates, Calcium, Magnesium, Liver Function, LD, CK, sTSH, Iron Studies, Vitamin B12, Cortisol, CRP, RA, ANA, Urinalysis.

They can also test for HIV/AIDS, and the different types of Hepatitis.

Hope this helps.

 
Old 09-21-2010, 03:54 PM   #6
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Join Date: Sep 2010
Location: Bosnia and Herzegovina
Posts: 2
azra30 HB User
Re: Would appreciate your thoughts. CFS?

Quote:
Originally Posted by benzos View Post
In the early part of this year after going countless times to the doc for this that and the other, a young doctor suggested I may have CFS. That was it. It was suggested then dropped. No idea why.
These are my symptoms that have bee going on for at least a couple of years.

Months on end with complete lethargy...all I want to do is lie down, not particularly sleep, just rest. I feel this because I feel drained physically and mentally. May have the odd few days where I seem to be picking up then crash..feel the same again.
Poor concentration...brain fog
Blurry vision on and off
I have fibromyalgia ( 10 years)
Muscle aches but especially joint pains
Acid/bile reflux - always full of wind
Difficulty swallowing sometimes
Difficulty breathing every day comes in bouts..worse for exercise.
I feel slow, in mind and movement, like my battery is about to give up!!
Get confused easily if a lot is going on around me..makes me irritable
Nausea sometimes
tinnitus
Feeling dizzy like near to fainting that passes .
Decreased appetite.
Sinus problems
Low mood but docs have never suggested anti depressants

Had three viruses back to back just before doc suggested I had cfs
Had heart checked..ok. I collapsed on the treadmill though.
Normal blood tests including throid - all ok
Am in menopause
Lung function apparently ok ( my biggest surpirse!)
Always 98/99% oxygen levels when its been tested
Blood pressure reasonable.
Chiropractor says I have several back problems ( spinal)

Its this utter feeling in a fog thing, distant, always exhausted especially if I move around too much. I am only slight in build so its not a weight issue.
Sometimes and like out of the blue, I will get sudden bursts where I feel like dong a lot..talk a lot, move around a lot etc...I havent got bipolar!

Every doc I see just seems to think I am an acid reflux case full stop. I cant seem to get through to them how my life has changed so much. I have never been lazy and have brought up 4 children. Dont want HRT treatment and it hasnt been suggested.
I dont know what to do or think next. I keep hitting brick walls.

Any advice?
Thanks
BENZOS...I READ YOUR POSTS...YOUR SYMPTOMS SOUND LIKE MINE...
ALMOST EVERYTHING ...IM STARTED FELLING SICK AFTER MY GALLBLADDEE REMOVAL...BEFORE 7 MONTHS...
I DEVELOPE MANY SYMPTOMS SINCE...

DIZZINESS,LIGHTHEADED ALL TIME...FELLING I WILL COLAPS
FATIQUE
WEAKNESS
BLOATED...FULL WIND...METHEORISM
SLEAPNESS AND ALWAYS TIRED
DYAREAH EVERY DAY
NAUSEA FREQUENTLY
DRY MOUTH AND THROAT (ESPACIALY IN THE MORNING)
METAL TASTE IN MY MOUTH OR LIKE SUMPOR
...AND THE WORST FROM ALL IS PROBLEM WITH BREATHING (LABORED BREATHING) AND FELLINGG TIGHTENING IN MY CHESTS ALL TIME

IM VERY DEPRESSED BECOUSE DOCTORS DONT KNOW WHATS WRONG WITH ME...I CRYING EVERYDAY AND THINK I WILL SLOWLY DIE...

MY LUNG FUNCTION IS OK...SpO2 is 98%...AND OTHER TEST ARE OK...
I THINK BILE/ACID REFLUX CAUSES MY PROBLEMS...BUT I DONT KNOW WHAT TO DO...

I EAT SMALLER MEALS WITHOUT FAT,SUGAR...ETC..
MY BED IS ELEVATED...ETS.ETC...

I TAKE MUCH MEDICINE(CONTROLOC,RANITIDINE,REGLANE,PY LOMID,RUPURUT...) BUT IT SEEMS NOTHING WORK...

IM SO TIRED OF SICK FELLING...TOMOROW I WILL GO TO DO SOME BLOOD TESTS...MY DOC THINK IT MAYBE SJOGREN SYNDROME...

BUT I THINK BILE/ACID REFLUX....MAKE ME TROUBLE,...JUST WE MUST TO FIGURED HOW TO FIX OUR HEALTH...I 31 YEAR AND TOO YOUNG FOR THIS TOO MUCH PROBLEMS...

SOORY BECOUSE MY ENGLISH...HOPE YOU WILL UNDERSTAND ME...

BEST WISHES FOR YOU AND ALL...

 
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