Hi New to this board, wondering if I have Fibromyalgia or not..could somebody help??

[Jenny C.]

Hi There,

I am new to this board...but I have used this health board in the past for my thyroid, and I know how helpful the people were on that board, so I thought I would come on this board and ask for some advice.

I have been struggling with SEVERE muscle aches...It started about 6 weeks ago, where my hip was hurting all the time...then one day, I woke up, and I could barely walk...Now, these past few weeks, my feet have been hurting TERRIBLY, they hurt to walk on them...and my muscle aches are my whole body now...my feet and hip seem to be the worse pain though

I went to the Dr.'s because I have been really tired, and the aches...so they tested me, and two Dr's told me, that I had re-activated Mono...because my Epstein Barr levels are extremely high...I had mono when I was younger, so they said, Mono can re-activate...and this is what is going on with me. They said, this is where the muscle aches are coming from??
So these were walk in clinic Dr.s so they told me to follow up with my PCP..so I did...
Well then my PCP, said, that I don't have mono again, that there is something else going on in my body??? HE Said, my blood work is showing, I had it when I was younger, but not now...but he said, that when your Epstein Barr levels, are SOO HIGH, then this means there is something else going on in the body.
MY friend, said, Fibromyalgia..because she knows somebody who has suffered with these same symptoms and that is what she has.

Does this sound FAMILIAR to anybody?? Did anybody have high Epstein Barr levels, and then were diagnosed with Fibromyalgia?

Help, any advice would be greatly appreciated!!

[gaudet2]

This sounds extremely familiar to me. However, I was tested for 6 months, 7 vials of blood each month and they always came back negative for everything. The last time though, my doc decided to check my Epstein Barr Level and it was positive. Not sure how high it was though. I had mono when I was younger and since my mono spot test this time was negative, she said that the EBV was probably positive because I had mono in the past, but she also said that it was highly likely that it was positive because I probably had Chronic Fatigue Syndrome. CFS and Fibromyalgia are closely linked.

I was referred to a rheumatologist and he was the one who dignosed me with fibro. I have to say that most likely you wont get a diagnosis soon though if you do have fibro. The earliest they like to give that diagnosis is three months after onset of symptoms and usually they like to see at least 6 months. The reason being is that they need to rule out a host of other things that could possibly be wrong that have the same symptoms of fibro. There isn't a single diagnostic test for fibromyalgia. It is a diagnosis of ruling out other things and then a tender point test. If you have at least 11 of the tender points painful, then they will usually diagnose fibro - but only after everything else has been ruled out.

I know this is hard to hear...I went through it for 6 months and there are people on this board that went through the diagnosis process for years. Just stay on top of your PCP and whenever you aren't feeling well, let them know. That is what I did and I credit my perserverence with getting a diagnosis as soon as I did...even if it did take 6 months.

Keep your head up. You have found a great place to come to. There are many threads that have already been started that can help you and you can always start your own thread like this one. I have found this board a life saver...it helps to talk to people that know exactly what you are going through.

gaudet2

[gorgee]

Jenny, it all sounds very familiar, especially the muscle pain and waking up in the morning and cannot walk. The only part that is not familiar to me is Epstein Barr, I have never had mono.

My experience with major tmj/chronic migraines (I have always had them but over time they have gotten worse), myofascial pain syndrome, and fibromyalgia all came on over the last 8 months. That is how fast it happened to me.

Good luck, and I will write more.

Kassandra

[kirstee]

The symptoms are familiar. I would suggest a referral to a rheumatologist, if you have not yet been seen by one. I'm sure there are other FMS patients that have also had the Epstein Barr that you have suffered from.

Blessings,
Kirstee

[Jenny C.]

Thank You to ALL three of you ladies, that responded It really HELPS to talk to people who have gone through and are going through the same things as me...SO THANK YOU, for taking the time to share your stories with me!
I REALLY APPRECIATE IT!!!
Is there ANY certain vitamin that I can take, that will help decrease the muscle aches?? Also, did your pain come on really quickly?? I have had aches for a while, as to where I wake up in the morning, and going down the steps, my feet hurt, and my body hurt...until I get moving...I figured that was just because I am getting older.. but then it was just when I had got sick, that I couldn't seem to shake it, and then this past week...the muscle aches are the worst I have ever in my life felt?? Is this normal, for it to come on soo quickly?
Thank You again, I will keep you all posted...you guys are ANGELS!!
Jenny