It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Chronic Fatigue Message Board
Post New Thread   Reply Reply
LinkBack Thread Tools
Old 11-13-2011, 02:55 PM   #1
Newbie
(female)
 
coolcupcakes's Avatar
 
Join Date: Nov 2011
Location: Maine, United States
Posts: 6
coolcupcakes HB User
Pretty frustrated. It's been almost a year without a diagnosis. :/

Hi! I'm new. I've been sick for almost a year, I've had all the blood tests that make sense given my symptoms and they've all come back negative. I've seen a neurologist, but she doesn't think I have CFS or fibro. She thinks my muscles are deconditioned from lack of movement and that I need to start pushing myself, but I started getting my symptoms when I was active and I have tried pushing myself. Even when I keep going or start slow, my symptoms always get worse, they never get better and that's why I think she's wrong. I've done a of research with CFS and I think I may have it, but I wanted to get outside opinions first.

Here are my symptoms.

Constant symptoms:
-Nearly unbearable fatigue that doesn't get better with rest.
-Muscle pain and weakness, usually my muscles feel stiff and/or sore.
-Extremely low stamina. Simple things leave me sore and exhausted for days, sometimes even a week or more, even if I only do them for only a few minutes.
-Trouble concentrating.

Occasional symptoms:
-Joint pain. The pain also seems to migrate from joint-to-joint.
-Postural hypotension.
-Rashes. They usually show up on my neck or chest and they're red and hot. During the summer I got scaly and dry rashes that left dark patches on my thighs and hips. It only happened once, but it lasted 3 months.
-Swollen glands, only in my groin and more often than not I have a swollen gland there.

I'm pretty desperate for answers at this point, especially because I can't count how many vials of blood I've had to give for testing and still haven't received any answers. I've started having panic attacks, intense agitation to the point where I shake and pretty bad depression because I'm having such trouble coping with being ill, especially since I have no answers and therefore am not getting much treatment. :/

Much thanks in advance to all who've taken the time to read this.

Last edited by coolcupcakes; 11-13-2011 at 03:38 PM.

 
Reply With Quote
The following user gives a hug of support to coolcupcakes:
iwillgtwell (11-14-2011)
Sponsors Lightbulb
   
Old 11-14-2011, 11:07 AM   #2
Junior Member
(male)
 
Join Date: Oct 2011
Location: California
Posts: 19
Brodie179 HB User
Re: Pretty frustrated. It's been almost a year without a diagnosis. :/

Hi Cool, I'm new here too. Welcome. Like you, I've had too many blood tests over the last 5-6 months to count, and they're all negative. Yet I feel like I have the flu (except without the fever) every single day...with many ups and downs. I just wanted to share a couple thoughts...

I don't know how your neurologist can say she doesn't think you have CFS unless she has an alternative diagnosis...something better than "your muscles are deconditioned." Because CFS is a diagnosis of exclusion, by definition, it is the last thing a doctor can rule out. Personally, I would be skeptical of her opinion given your symptoms. Since you're here, I guess you're probably skeptical too.

I'm no doctor, but when someone has fatigue and some of the other symptoms you mentioned, PLUS skin rashes, it often means an autoimmune disease, like lupus. I assume you've been tested for that already?

Other than that, I think all you can do is stay aggressive and keep pushing your doctors to order more and more tests. If you read books on CFS and related conditions, you'll get ideas for more tests that you didn't know about (and your doctor might not either!) But in the meantime, I don't think there's any harm in "self-diagnosing" with a preliminary diagnosis of CFS so that you can start exploring treatments. Many of them are non-prescription and involve dietary supplements, so there isn't much of a downside to trying.

Good luck and please let us know how it goes.

Last edited by Brodie179; 11-14-2011 at 03:10 PM.

 
Reply With Quote
Old 11-14-2011, 05:11 PM   #3
Newbie
(female)
 
coolcupcakes's Avatar
 
Join Date: Nov 2011
Location: Maine, United States
Posts: 6
coolcupcakes HB User
Re: Pretty frustrated. It's been almost a year without a diagnosis. :/

Quote:
Originally Posted by iwillgtwell View Post
It could be Lyme disease. Look up Dr. Joe Burrascano's symptom list for Lyme and co-infections. Lyme is a clinical diagnosis done by a LLMD (Lyme Literate Medical Doctor) as mainstream doctors are not schooled in tick borne diseases. Take care.
I have been tested for lyme and that showed up negative, but thanks for the suggestion.

 
Reply With Quote
Old 11-14-2011, 05:14 PM   #4
Newbie
(female)
 
coolcupcakes's Avatar
 
Join Date: Nov 2011
Location: Maine, United States
Posts: 6
coolcupcakes HB User
Re: Pretty frustrated. It's been almost a year without a diagnosis. :/

Quote:
Originally Posted by Brodie179 View Post
Hi Cool, I'm new here too. Welcome. Like you, I've had too many blood tests over the last 5-6 months to count, and they're all negative. Yet I feel like I have the flu (except without the fever) every single day...with many ups and downs. I just wanted to share a couple thoughts...

I don't know how your neurologist can say she doesn't think you have CFS unless she has an alternative diagnosis...something better than "your muscles are deconditioned." Because CFS is a diagnosis of exclusion, by definition, it is the last thing a doctor can rule out. Personally, I would be skeptical of her opinion given your symptoms. Since you're here, I guess you're probably skeptical too.

I'm no doctor, but when someone has fatigue and some of the other symptoms you mentioned, PLUS skin rashes, it often means an autoimmune disease, like lupus. I assume you've been tested for that already?

Other than that, I think all you can do is stay aggressive and keep pushing your doctors to order more and more tests. If you read books on CFS and related conditions, you'll get ideas for more tests that you didn't know about (and your doctor might not either!) But in the meantime, I don't think there's any harm in "self-diagnosing" with a preliminary diagnosis of CFS so that you can start exploring treatments. Many of them are non-prescription and involve dietary supplements, so there isn't much of a downside to trying.

Good luck and please let us know how it goes.
Yup, I have been tested for autoimmune diseases, but thanks for the suggestion that I should treat my symptoms as if I do have chronic fatigue. It couldn't hurt. At this point, I'll try anything that could help.

 
Reply With Quote
Old 11-23-2011, 01:18 PM   #5
Newbie
(female)
 
Join Date: Aug 2011
Location: Copperas Cove, TX, USA
Posts: 1
Annie2415 HB User
Re: Pretty frustrated. It's been almost a year without a diagnosis. :/

Hello Coolcupcakes
I'm new here as well. I can say that I feel your pain and frustation. I've been "tired" for eight years. Doctor after doctor said "You're fine." Labs are are normal. No anemia, thyroid is fine, hormones are fine, etc., etc. You start to feel like you're going crazy. I can only work part-time now, and even with that, I am falling asleep at my computer. The good news is, I had my first appointment with a new doctor yesterday...he came highly recommended from a friend who was sick for years with her thyroid and no other doctor ever caught it. Anyway, I told him about my fatigue and he asked if I had ever been tested for Epstein's Barr virus. I had heard of it before, but had no idea what it was. I did some research and found that Epstein's Barr Virus (EBV) and CFS are linked. I would encourage you to ask your doctor for this test and for you to do some of your own research on it. I was blown away by what I found. I know how frustrating it is to have lab after lab come up "normal", when we KNOW there is something wrong with us. Trust your body and your instincts. It's taken me eight years of this junk to find a doctor who seems to want to find out what's causing it. Here's a little tip that has helped me in the last couple of months. I'm focusing on what I CAN control with this. I've made some very healthy dietary changes that have taken the edge off the fatigue...I can get away with a one hour nap now as opposed to a 3 or 4 our nap: I eliminated ALL artificial sweeteners (those things will kill you), I take a good multi-vitamin, eat plenty of fresh fruits and veggies, drink lots of water. The hardest part for me has been to be patient with myself. I judge myself way too harshly. I have to remind myself that it's NOT my fault, that I'm NOT lazy. I also work on eliminating as much stress from my life...you'll find in your research that stress can be a trigger. Anyway, I don't know if the EBV is the culprit behind my fatigue, but it sounds like it just might be...since everything else comes up normal.

I hope some of this helps and/or encourages you.

Annie

 
Reply With Quote
Old 11-23-2011, 02:21 PM   #6
Newbie
(female)
 
coolcupcakes's Avatar
 
Join Date: Nov 2011
Location: Maine, United States
Posts: 6
coolcupcakes HB User
Re: Pretty frustrated. It's been almost a year without a diagnosis. :/

Thanks for your reply. I'm definitely doing what I can to get better. I'm exercising again because I'm in physical therapy, I'm eating much healthier, drinking more water and sleeping at more regular times, sometimes I can't stand being awake still though, but I'm still constantly fatigued and my joints are acting up. I have no idea if it's EBV. Are the tests for that reliable? I've had mono before and my doctor tested me for it a few months ago and it came back negative.

Last edited by hb-mod; 05-21-2012 at 02:21 PM.

 
Reply With Quote
Old 11-24-2011, 01:47 PM   #7
Junior Member
(female)
 
Mamas in Pain's Avatar
 
Join Date: Nov 2011
Location: United Kingdom
Posts: 13
Mamas in Pain HB User
Re: Pretty frustrated. It's be almost a year without a diagnosis. :/

I've just waited for my diagnosis: worth the wait!
Chronic fatigue syndrome, Raynauds and Fibromyalgia.
Keep fighting for it and eventually, you'll see a professional who can help.
Huge hugs - never give up hope!
__________________
My main experiences are with: Autism, Hypospadias, CHD, ToF, CFS, Raynauds disease, Caesareans, B-feeding, HBAC, and FMS.

 
Reply With Quote
Old 11-26-2011, 11:20 AM   #8
Newbie
(female)
 
coolcupcakes's Avatar
 
Join Date: Nov 2011
Location: Maine, United States
Posts: 6
coolcupcakes HB User
Re: Pretty frustrated. It's be almost a year without a diagnosis. :/

Quote:
Originally Posted by Mamas in Pain View Post
I've just waited for my diagnosis: worth the wait!
Chronic fatigue syndrome, Raynauds and Fibromyalgia.
Keep fighting for it and eventually, you'll see a professional who can help.
Huge hugs - never give up hope!
Thank you for the hugs. I know waiting for a proper diagnosis will be worth it.

 
Reply With Quote
Old 03-30-2012, 04:15 PM   #9
Newbie
(female)
 
coolcupcakes's Avatar
 
Join Date: Nov 2011
Location: Maine, United States
Posts: 6
coolcupcakes HB User
Re: Pretty frustrated. It's be almost a year without a diagnosis. :/

I was recently diagnosed with bipolar with severe physical symptoms. Just thought I'd let you all know.

 
Reply With Quote
The following user gives a hug of support to coolcupcakes:
social357 (04-18-2012)
Reply Reply

Similar Threads
Thread Thread Starter Board Replies Last Post
Constantly changing vestibular disorders diagnosis but could it be CFS? vickym1984 Chronic Fatigue 5 12-08-2010 09:25 PM
need help with diagnosis: high ESR, high MCV; granular casts, renal epithelial kitkatt79 Chronic Fatigue 6 04-06-2010 10:38 AM
Frustrated... does anyone else have this problem?! kiya Chronic Fatigue 7 08-29-2008 02:13 AM
Advice For Fatigue, Not Sure What Else To Do, Other Than Just Ignore It clyde77 Chronic Fatigue 1 02-18-2008 12:35 AM
Is it worth it to attempt to get a diagnosis? December716 Chronic Fatigue 10 08-24-2006 03:54 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



CFIDS (3), sleepykitty44 (3), paulapage1980 (3), wigs123 (3), Brodie179 (3), ladybud (3), mare50 (3), RickinOH (3), neveragain444 (2), mads12 (2)

Site Wide Totals

teteri66 (1136), MSJayhawk (941), Apollo123 (855), janewhite1 (823), Titchou (769), Gabriel (743), ladybud (667), sammy64 (666), midwest1 (654), BlueSkies14 (610)



All times are GMT -7. The time now is 05:01 AM.



Site owned and operated by HealthBoards.com™
Copyright and Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!