Mono and fibro again

[miek]

Hello to all. I read the Barnabev7’s thread (31/5) and felt astonished. I think the connection between mono and fibromyalgia might apply to me too. I am 48 years old and exactly two years ago I was diagnosed with mono. And I haven’t been myself ever since. As the pain in my -swollen- lymph nodes in my neck never really went away I kept going to back to my ENT doctor several times, afraid I had cancer but he laughed that thought away saying that I’m healthier than he (good bloodtests and a nasal endoscopy twice showed nothing out of the ordinary). He said I still have a low autoimmune system, should rest a lot and take multi-vitamins. I feel it’s not that simple. And a couple of months ago I started having most of the signs and sympoms of fibromyalgia, especially this terrible burning muscle pain which comes and goes in waves throughout the day and sometimes even at night as well as tension and migraine headaches, anxiety and depression. Somewhere deep down I know these two must be connected because in the past two years I have not been like I used to be before I had mono, not one single day! I am tired of the pain, I am tired of being afraid, I want myself back and so I decided to see a specialist that can help me. My question is to which specialist I should go? Rheumatologist? Neurologist? And which tests will I probably have to do? Thank you so much for just reading!

 

[NorthernHarrier]

Yes- many of us with FMS and CFS had mono and-or other viral infections earlier. The most important factor in choosing a specialist is, IMO, whether they are familiar with treating people with FMS or other illnesses associated with central nervous system dysfunction. You need someone who understands that multiple-system illnesses require a multiple system treatment approach. They have to be willing to try many different treatments on each patient, as each patient needs a unique treatment approach. They should be willing to listen to you and believe your descriptions of your symptoms, as well. Good luck!

 

[miek]

Thank you for your reply, especially your last sentence "they should be willing to listen to you and believe your descriptions of your symptoms" is so true. Everything starts -or ends- with this.

 

[mariposa]

I agree that the most important way to choose your specialist is to find someone who understands. After reading this forum for a while now, I'm always shocked to see the percentage of doctors who don't *still* seem to know very much about fibro. I know that at first the lack of knowledge was "forgiven" because the diagnosis was so new and doctors had to come up to speed... but after all this time there really isn't an excuse.