Hi and welcome.
I had swollen Lymph nodes for years with the diagnosis of FM.
It wound up I had three diseases caused by ticks. Lymes, Babesia and Mycoplasma plus EBV.
The only tests it shows up on are specific for Lymes and each disease.
Scans and CBC tests do not show the presence of these illnesses.
Check out the ILADs and LDA ( Lyme disease assoc.) for more info on the right docs and testing.
" your diagnosis will be, the specialty of the doctor you go to."
Im waiting for my rhum to call me he said he was running more blood work since its been a year since last dr did anything he wants to make sure theres no new development of another disease. My previous dr did dest for ebv and lyme dont know about the others.
Just know basic lab tests for Lymes are not accurate. A Lymes doc, LLD, has to do the test and send it to the best lab in the country for the test, igenix labs in palo alto Cali.
I was tested for years at quest labs, suffering with huge lymph at my collar bone so puffed up people gasped. Muscles cramped, body vibrated, headaches and other symptoms and all negative.
Im 37 and have had swollen lymph nodes for 2 years. I was just diagnosed with fibro. No one knows why I have swollen lymph nodes and I'm worried that they ate missing something too. I experience night sweats someone's and hist ba general feeling of being sick. Headaches dizziness its scary. Are you still experiencing swollen lymph nodes?
Have found articles on the internet that tie fibro and epstein-barr virus together. EBV is a result of having had mononucleosis sometime in your life. I have had fibro for about 25 years and came down with EBV a few years ago. It is a horrible combination. I had been under a lot of stress - husband had open-heart surgery - 3-1/2 months later we were in very bad auto accident - husband had very bad head injury that caused "acquired bipolar" and went downhill and died 6 years later - had to care for him through 4 surgeries required after the accident (both shoulders reconstructed, fusions of two neck vertebrae and knee surgery) - during same time oldest son was diagnosed bipolar (had to quit work and move home) and I became his caregiver- 6 years after accident, husband died (on Mother's Day) and 3 months later, son shot and killed himself on our patio, just over the fence from where I was gardening - 5 months later, my younger son abandoned me and hasn't talked to me for 10+ years - in 8 months I lost my entire family - not unusual after a suicide in a family. The deaths were in 2008 same year the bottom fell out of the real estate market and I lost our home. Had a wonderful doctor and he died of cancer in 2010. Haven't found a satisfactory doctor since.
I lived through it all with fibromyalgia.
Fibro has been continuously worse since. Besides the EBV, I have also had a fungal infection caused by too much yeast in my body (not from eating foods w/ yeast or excess sugar) Note: yeast overgrowth has been a problem since fibro diagnosis. It attacked all of my muscles and I could only walk a few feet; my body would bend at the waist and I walked like an inverted "L". Was unable to leave the house for three months. Now I have blocked occipital nerves (nerves in the neck that go into the brain). Research informed me that the percentage of fibro patients with blocked occipital nerves is much higher than the percentage in the general population. This is terribly painful and got so bad that when I turned my head sideways, it would lock and getting it back to looking forward was extremely painful and difficult; it made me scream out loud. Have been getting cortisone shots in my head and it helps - but doesn't feel like it every goes entirely away.
Back to the connection of swollen glands with fibro, my neck glands are swollen much of the time as they are with mono. One doctor encouraged me to drink more water and this does help some of the time. Haven't found any info re a connection of blocked occipital nerves and EBV - but continue to look. My fibro symptoms are getting progressively worse - assume it is the stress and age (am now 76 years old). I find that resting after each task I do - letting my muscles relax before moving on to another task - is very helpful. Found that on a busy day - at the end of the day, my muscles did not shut down and when I went to bed, my muscles were very active doing all the things they had done all day long. It would take hours to calm them and get to sleep.
The only prescriptions I take are zoloft and a stomach acid med due to a Hyatle hernia.
I think supplements work best and most are safer on the vital organs. I do a lot of internet research and often try new products to see if anyone has finally got it completely right. I find that keeping up with the latest info helps with coping.
My mother was very strong and, fortunately, I got her genes. It makes coping a whole lot easier. I still laugh (try to find something to make me laugh every day) My current doctor says I am the only fibro patient he knows that still smiles. I do what I can and don't sweat it if I can't get everything done. I don't get out as much as I'd like; have a very small dog for company.
Hope this is of some help -