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New Member

Date Joined Feb 2007
Total Posts : 1
   Posted 2/1/2007 3:19 PM (GMT -6)   
I'm looking for alittle advice/knowledge/help of any sort. He's my story.
I'm been extremly fatigued for over 5 years now. When I origianlly went to the doctor 5 years ago, my symptems were fatigue followed by anxiety a few months later. The doctor prescribed an anti-depressant. His thoughts were that I had an anxiety disorder. The anti-depressant helped relieve the anxiety, but the fatigue never has gone away. I've been off of anti-depressants for a long time now with no symptems of depression & anxiety. But the fatigue is still there.
I've been to the doctor 3 to 4 times in this period of time and he has done blood work twice with results being normal both times.
I've gone to an allergy specialist where I was diagnosed with allergy's of all kinds. plants, mold, & food, etc.. 
I did a sleep study about 6 months ago and was diagnosed with mild sleep apnea. The doctor told me that about 50% of men have some degree of sleep apnea. Anyway, I've been treating my "apnea" with an oral appliance. No improvments seen so far...
My gut feeling since day one is that there is something going on with my health that the doctor's are missing. I'm thinking that the anxiety that I had was due to my extensive worry about my fatigue. I don't think my sleep doctor gave me the time of day. As soon as he seen the mild level of apnea he just assumed that was the problem.
Here are my symptoms:
  1. Excessive fatigue
  2. neck & back pain
  3. nasal congestion & sinus infections & deviated septum
  4. memory problems
  5. Blurred vision

My quality of life sucks. I feel like I'm just surviving. Not really living. Any thoughts or advice will be appreciated. Thank you. 

Regular Member

Date Joined May 2006
Total Posts : 309
   Posted 2/2/2007 12:03 PM (GMT -6)   
Hi J,
I read your post and it very well could have been written by me.  I am in diagnosis limboland once again myself.
I don't have CFS to my knowledge, but also have fatigue and pain, as well as other symptoms.  At this point I am at the mercy of my oncologist and neurologist and whatever appointments and tests they set up.  It really makes one feel they have no control over their own life.
Something I learned when I was undergoing cancer treatments, was to stop comparing myself and my life to anyone else.  I learned to do what I could, when I could, and not worry about the rest.  I miss the old me - the one who had endless energy, the spotless home.....but she is gone and not likely to come back.  Acceptance is a very hard pill to swallow, but once swallowed, it frees you to make the best of who and what you are now.
Keep pushing your doctors to figure out what is happening with you.  They may have all the letters after their names and the fancy papers on the wall, but YOU know your body and when something is not right with it.  Even though my cancer is more than likely in remission right now, I know something isn't right with me either.  When my original oncologist told me to come back when "I had symptoms", I fired him.  I now see an oncologist who reminds me of a Tasmanian devil.......never  He has tested my blood for everything except PSA (I'm female, no prostate....that I know and I am having PET, CT, and MRI scanning from head to toe to be sure the cancer hasn't snuck back, and to find out what is causing my symptoms.
Your doctors work for you.  You can fire them.  Sometimes it takes a long time to find out what is wrong.  It took me three years to be diagnosed with sarcoidosis, after being called a hypochondriac and Munchausen case.  When it finally manifested itself in my lungs, I had a thoracotomy and was finally correctly diagnosed. 
In the meantime, be good to you.  Find things to do that you enjoy and don't take all of your energy.  I crochet hats for chemotherapy patients.  Knowing that I can touch someone's life without even meeting them goes a long way to helping me feel good about myself.  Sometimes we just have to find new ways to do the old things :)
I wish you the best of luck in your tests.....and will watch for your posts :)
Though we live in a world where anger and hatefulness seem to be the norm, we CAN make a difference, one person at a time.
Full time Chronic Pain and Co-Moderator of the Chronic Pain Forum :)
Never lose faith in the kindness and love of others, you never know when you will receive lemons too :)

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 2/2/2007 5:39 PM (GMT -6)   
J, I don't have a lot to add to the great things that Michelle told you, I just want to say I have found that it is good to trust your gut instinct. If you feel like there is not something right with your body, then keep searching until you find a doc who will help you. You live in your body, know it better than anyone and you are the expert about your body.

Being in diagnosis limbo is a very frustrating place to be because you know something is wrong, but you don't have a name for it.

There are others here who are going through similar things - having no quality of life, but having the docs find nothing wrong.

I am not a doctor or medical professional and am in no way trying to diagnose you, but I just wondered what diseases the docs have checked for so far. When I first got sick with my mystery illness I got a lot of labs done and did a lot of reading and one of the possibilities the docs were looking at was MS which often times has symptoms of severe fatigue and also vision problems. MS can be difficult to diagnose as can a lot of illnesses - that's why so many people are left in diagnosis limbo.

I hope you continue to post here. Just know that we are here for support. Take care and I'm glad you joined us.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops



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Regular Member

Date Joined Nov 2006
Total Posts : 51
   Posted 2/3/2007 8:16 AM (GMT -6)   
You might also want to ask the doctor to check if you have the tender points associated with fibromyalgia. I was diagnosed with fibromyalgia, but by far the most disabling symptom I have is fatigue. I also have chronic aches and pains, but compared to the fatigue, which has affected every aspect of my life, I consider them fairly mild.

New Member

Date Joined Jan 2007
Total Posts : 11
   Posted 2/3/2007 10:04 AM (GMT -6)   
I am just lik you bee33. I have severe fatigue and am still trying to work full time. The doctor put me on Cymbalta in November. It helped with the pain but not the fatigue. Yesterday he put me on Effexor-37.5 mg. to help boost the Cymbalta. I feel so sad that I can't get a diagnosis- in September he thought it might be fibro- but yesterday when he pushed on some of the tenderpoints he said I didn't feel enough pain. I had EBV in May- I might still be feeling effects of fatigue from that. I need help to get my life back- or accept that it will never improve and I have Chronic fatigue. I need answers to help my family understand.

New Member

Date Joined Feb 2007
Total Posts : 6
   Posted 2/9/2007 11:20 PM (GMT -6)   
jtravers1, it certainly seems possible that you may indeed be suffering from CFS. Unexplained severe fatigue that has gone on for five years along with some of your other symptoms should definitely keep CFS from being ruled out.

Have you checked with any of the CFS organizations to see if there is a physician in your area that has been recommended by CFS patients? That may be a very good place to start. Sadly, there are still many physicians that don't understand the illness and are all too ready to stop seriously pursuing a diagnosis when those tests come back as 'normal'.

I've been sick with CFS for 26 years and while there is no cure, today there is so very much more known about the illness than when I was first diagnosed with it. There are things that you can do to help with some symptoms and much to learn about what to avoid and how to adjust your life to help you maintain as high a functioning level as you possibly can.

The neck and muscle pains can often be helped by taking something like Magnesium Malate. Memory problems can be improved when we avoid 'crashes' from pushing ourselves too hard.

And the first thing I recommend to anyone who is diagnosed with CFS is to also ask your physician about the possibility of migraine. One of the symptoms that many of us developed after getting with with CFS is a new and severe type of headache, often associated with sinus and facial pain. You can ask your physician for some migraine medications, and you may find some real relief from some very bad symptoms.

Hang in there, life is possible with such an illness and you'll find many of us who have trod the path and happy to share what we have learned. :)

Veteran Member

Date Joined Jul 2006
Total Posts : 789
   Posted 2/10/2007 11:13 AM (GMT -6)   
Welcome to HW were happy you have joined us all here. You have already recived some great advice here. I agree with all of the advice you have recived. You might want to read some in the fibromyalgia forums here and see if any of the symtems fit your illness. I was dx 6 years ago with fibro and anxiety,depression 4 years ago and your symtems seem to fit exactly what I go thru. Good luck and I do hope you get to feeling better soon.
I have an illness, My illness don't have me.
Being happy doesnt mean everything's perfect.It means you've decided to see beyound the imperfrctions!God didn't promise days without pain, laughter without sorrow, sun without rain, but HE did promise strength for the day, comfort for the tears & light for the way                                        



New Member

Date Joined Feb 2007
Total Posts : 6
   Posted 2/10/2007 6:35 PM (GMT -6)   
One comment I would like to make is that while CFS patients can become depressed by the circumstances they find themselves in, rarely do we suffer from what would be called clinical depression.

There are many studies available that show major clinical differences between someone with CFS and someone with organic depression.

Many of us also suffer from fibromyalgia, though I can tell distinct differences between the muscle/tissue/joint pain I have from fibro and that occurs when I have a CFS crash and my muscles fill with viral load.

And jtravers1, your back/neck pain may indeed be a virus loading/replicating in the muscles in those areas. I know some of the most pain I have suffered over the years of having CFS were in my back and neck and once when I saw my doctor - who is very knowledgable on CFS - during such an episode he explained that the muscles felt so hard and painful because whatever virus or viruses that are involved with CFS were 'loading' into those muscles at the time.

When that occurs I hit the anti-inflammatory supplements big time! I'll take a dose of Vitamin C, E, and bromelain every few hours and a few Magnesium Malate tablets a couple of times during the day and I can usually get it to simmer down.
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