Thursday, September 03, 2009

News High Epstein Barr

People have been writing and asking about why I have not posted lately. Here is an update:

I have received emails requesting updates and new posts. Unfortunately, I have been experiencing severe fatigue, sensitivity to light, sore throat, swollen lymph nodes, ear pain, unrefreshed sleep, muscle pain, and horrendous headaches.

These past few months have been a bit of a challenge because I refuse to let this disabling condition get me down. Do you experience days you feel exhausted, however you cannot shut down completely? I end up lying in bed, practice self-meditation, and pray until at some point or another I fall asleep. The result is the same, I have to be patient and start my path of taking control of my health.

I finally broke down last week and called my PCP. The current symptoms included pain right below my chest, moving up to my neck, arm, and hand, along with extreme fatigue. My current symptoms include swollen lymph nodes, achy and ringing ears, and sensitivity to light and sound, however the worst symptom is fatigue. The doctor mentioned Pleurisy, scheduled blood test, chest x-ray, mammogram, and a head CT. Within a week, I took care of appointments and followed up. The result, I have a high Epstein –Barr reading, Rheumatoid Arthritis, the good news is my cholesterol is great. The doctored mentioned scheduling an appointment with an infectious disease specialist. I asked how that specialist might be able to help me. He said the specialist could monitor my Epstein-Barr, so I am left with a decision as to whether to schedule that appointment. I need to start measuring the duration, severity, and frequency of the different fatigue-related sensations and symptoms. This means I have to start a journal again. It will not be easy, but a necessary part of getting back on track.

Keep in mind, updating your journal will prove to be of importance along with remaining positive. Our own response to the symptoms we are experiencing play a major role in improving our health challenges. Attitude is so important, so I am working on deciding whether I want to schedule an appointment and whether it will benefit me in the end. Medical bills are out of control because of my husbands chronic COPD and other health issues. I will keep you updated.

Meanwhile, remember this phase is temporary and will pass; the key is to stay focused and work on researching data on Epstein-Barr and ME/CFS. People with our illness get used to feeling drained and pain and assume it is fibromyalgia or chronic fatigue. We cannot assume everything is due to our disorders and we must continue to take our supplements, stick to a healthy diet and pace.

Here we go again, starting our journey to improve our health. In order to do this, we have to take an active role in managing our health and well-being. We can eliminate the toxins in our body and start empowering ourselves to take control of our health. Unfortunately, nothing is free and supplements are expensive.

Today’s message is “never take life for granted and controlling our health is a life long process." I apologize for not editing my post, have to take a break.

I hope and pray you have a pain and fatigue free day.



Jo said...

Yes, it's important not to assume everything is fibro or CFS. I have a friend whose daughter died because her pneumonia was put down to her fibromyalgia by the docs.

I'm sorry about the rheumatoid arthritis and Epstein-Barr diagnoses. I know RA can be well managed with modern drugs and the prognosis is much better than it used to be in our grandmothers' days.

Little comfort I know. I hope you feel better soon.

Fibro Viv said...

Hello Jo,

Yes, unfortunately not only does an individual assume it is just another fibro or CFS symptom, however, doctors tend to ignore some symptoms.

I am starting to feel a bit better and going to practice my own tips.

I added your site to my Chronic Health Site list, I hope that is cool with you. I believe it helps to share information and different experiences.

Thank you for your comments.


Charlene said...

I found your blog looking for any/all info. about Epstein Barr online. I've been dealing with it for years and know my symptoms are totally triggered by foods and preservatives but just now trying to deciper which ones. Sulfer/sulfites seem to be a big culprit for example. Anyway, hope you're feeling better and thanks for sharing.


Fibro Viv said...

Hello Charlene,

I have been bad about not keeping a journal so I am not sure what triggered mine. I know I was not pacing and following my own tips!

I am sorry to hear you have been dealing with this for awhile. Maybe we can figure out what else triggers it. I still haven't decided whether to go see an infectious disease specialist. I have yet to visit that type of specialist.

Take care and thanks for the information.

I pray and hope you have a fatigue and pain free day.