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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 stops...lol.  He has tested my blood for everything except PSA (I'm female, no prostate....that I know of...lol) 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 :)

Michelle

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.

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. :)

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.