Jenny C.
04-12-2008, 10:24 AM
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!!
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!!
Sponsor
gaudet2
04-12-2008, 02:29 PM
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
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
04-12-2008, 03:29 PM
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
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
04-12-2008, 08:16 PM
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
Blessings,
Kirstee
Jenny C.
04-13-2008, 07:46 AM
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!!:angel:
Jenny
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!!:angel:
Jenny
baserockermom
04-13-2008, 09:15 AM
Hi, and welcome! All but the Epstein Barr stuff sounds familiar to me. Have you had any major stress or injury? If it's any hope to you, if what you have is a flare, flares do subside. It sounds like that is what you are going through. Have they tried steroids? Hope they can get a solution for you to help with what sounds like a flare.
ctheri
04-13-2008, 11:42 AM
My Eipsteen Bar levels came back high around the same time my Chronic Fatigue was diognosed, the same time they did every test known to man to try to figure out why my extremeties were going numb (fancy having shocks sent through your body to see how long it takes for your brain to register it anyone!?) And why I couldn't concentrate enough to even drive home (I forgot how to get home and that I'm supposed to stop at a stop sign.)
They didn't diagnose me with Fibro until I went to a Rhemy Dr... YEARS later... I walked around for over 7 years beliving it was all in my head... So don't give up!
-Cindy
They didn't diagnose me with Fibro until I went to a Rhemy Dr... YEARS later... I walked around for over 7 years beliving it was all in my head... So don't give up!
-Cindy
kirstee
04-13-2008, 07:35 PM
Try taking Malic acid and magnesium as directed on the label. Also Manganese, 5 mg daily (take separately from calcium supplements). Coenzyme Q10, 75 mg will improve oxygenation of tissues and will help increase energy supply to the cells. Lecithin (as directed on abel w/meals), also promotes energy and enhances immunity, aids in brain function.
So long!
Kirstee
So long!
Kirstee
Jenny C.
04-20-2008, 07:56 AM
Hi, and welcome! All but the Epstein Barr stuff sounds familiar to me. Have you had any major stress or injury? If it's any hope to you, if what you have is a flare, flares do subside. It sounds like that is what you are going through. Have they tried steroids? Hope they can get a solution for you to help with what sounds like a flare.
Hi Ladies,
First, I want to THANK ALL OF YOU, who have given me GREAT ADVICE, and THANK YOU FOR ALL THE GREAT SUPPORT!!:)
BASEROCKERMOM...Yes, I have had major stress recently...so maybe this is what triggered it.
Thank You for letting me know, about Flare Up's and that they do subside..
I am feeling MUCH, MUCH BETTER now for the past couple of days...so I was thinking, Maybe it wasn't Fibromyalgia, after all...since I am feeling soo much better, I was thinking maybe it was some sort of a virus, that has caused my severe muscle ache.
All of the blood work my Dr. has done soo far, is NORMAL...we are still waiting on a few results to still come back though.
Thanks for letting me know, that you have Flare Up's and Flare Down's with this...I was thinking, that once you got Fibromyalgia...then the pain NEVER left...I STILL HAVE ALOT TO LEARN...I have NO IDEA what to expect with this..so thank you for sharing your information.
When you get Flare Down's does your muscle ache completely leave?? How long does it normally stay down, before you get a severe Flare up again??
I still have the muscle ache, but it is dull...that unbearable pain, has left...YAHOO..SO I am hoping it NEVER COMES BACK..:)
Thanks again, for all of your great information, any more information you have..please feel free to share it..this is all new to me, so I have alot to learn, and to figure out what is going on with me.:)
Hi Ladies,
First, I want to THANK ALL OF YOU, who have given me GREAT ADVICE, and THANK YOU FOR ALL THE GREAT SUPPORT!!:)
BASEROCKERMOM...Yes, I have had major stress recently...so maybe this is what triggered it.
Thank You for letting me know, about Flare Up's and that they do subside..
I am feeling MUCH, MUCH BETTER now for the past couple of days...so I was thinking, Maybe it wasn't Fibromyalgia, after all...since I am feeling soo much better, I was thinking maybe it was some sort of a virus, that has caused my severe muscle ache.
All of the blood work my Dr. has done soo far, is NORMAL...we are still waiting on a few results to still come back though.
Thanks for letting me know, that you have Flare Up's and Flare Down's with this...I was thinking, that once you got Fibromyalgia...then the pain NEVER left...I STILL HAVE ALOT TO LEARN...I have NO IDEA what to expect with this..so thank you for sharing your information.
When you get Flare Down's does your muscle ache completely leave?? How long does it normally stay down, before you get a severe Flare up again??
I still have the muscle ache, but it is dull...that unbearable pain, has left...YAHOO..SO I am hoping it NEVER COMES BACK..:)
Thanks again, for all of your great information, any more information you have..please feel free to share it..this is all new to me, so I have alot to learn, and to figure out what is going on with me.:)
linda looney
04-22-2008, 02:08 AM
Just to throw in another question, do have spots on your body that feel like bruises all the time, near your joints? This would occur bilateraly. For instance, before my diagnosis, I had this spot on my right elbow that I would rub and always wonder why it felt bruised. It wasn't until I knew about the FIBRO tender points that I discovered I had them all over on both sides of my body. Sometimes not in the exact same location on one side as the other, but near or on the joint. Take a little time to examine the areas around your joints by gently pressing two fingers against the skin and seeing if you feel any kind of pain (like a bruise might feel that was just started). It would be tender to the touch, and the level of pain may vary.