Hi to all, I have not yet been diagnosed with Fibromyalgia, (my neurosurgeon says I have it and my family doc and pain doc say I have myofascial pain). When I look up symptons besides neck pain, shoulder pain, facial pain, head pain and headaches which I have had for 5 years everyday I saw in someones diagnostic charts that people with mitral valve prolapse and fibro cystic breasts are prone also to fibromyalgia. I also have Epstein Barr Virus and CMV which is a liver problem that stays dormant in your system and you have flare ups every once in a while. I have flare up 3 to 4 times a year which is a sore throat, swollen lymph nodes and sinus problems. Does anyone else that has been diagnosed with fibro have any of these health issues to go along with it.
I have no idea like many of you what it would be like to feel normal!!!!
Thanks for listening.
Lyn in Michigan :angel:
I have had surgery on my cervical spine (fused C5/6/7 with titanium pins and plates and donor bone.) It is a lot to go through to be told, sorry your operation didn't help take your pain away, you probably have fibromyalgia!!!! great!!!!!

I got the fibro cystic breasts a few years ago for the first time. It was from a new birth control pill I started. I even went up a few bra sizes!! Hurt like the dickens!! Felt like it did when I was breast feeding and the milk gets clogged up! Needless to say, I don't take any BC pills anymore.

I will also get it if I drink too much caffeine.

Hi to all, I have not yet been diagnosed with Fibromyalgia, (my neurosurgeon says I have it and my family doc and pain doc say I have myofascial pain). When I look up symptons besides neck pain, shoulder pain, facial pain, head pain and headaches which I have had for 5 years everyday I saw in someones diagnostic charts that people with mitral valve prolapse and fibro cystic breasts are prone also to fibromyalgia. I also have Epstein Barr Virus and CMV which is a liver problem that stays dormant in your system and you have flare ups every once in a while. I have flare up 3 to 4 times a year which is a sore throat, swollen lymph nodes and sinus problems. Does anyone else that has been diagnosed with fibro have any of these health issues to go along with it.
I have no idea like many of you what it would be like to feel normal!!!!
Thanks for listening.
Lyn in Michigan :angel:
I have had surgery on my cervical spine (fused C5/6/7 with titanium pins and plates and donor bone.) It is a lot to go through to be told, sorry your operation didn't help take your pain away, you probably have fibromyalgia!!!! great!!!!!
........ Hello Lyn, i too have fibro cystic breast , a mild mitro valve prolapse, And a whole lot of other problems. I was dxd in July with FMS & AS after over 5 years of testing and doctor visits. Have you been to a rhuematologist yet? They can do even more test to see what they come up with. Good luck And let us know what you find out. :bouncing:

add me to the list, ladies. i have fibro cystic breasts and now it is thru my entire body. started when i was 29. i am 49 now. caffeine and nuts cause black fluid to come out of my nipples. i also have fms and cmp and a few other goodies to round it all out. almost had both breasts removed at 30. decided to keep them and face cancer if and when it came. so far not a nasty cell in there. doctors 20 years ago were lopping off breasts (like crazy) with fibro cystic claiming they would lead to cancer.
peace,
bluelakelady

Hey y'all, what exactly is mitral valve prolapse?

Count me in ... fibro cystic breast disease, too. I was diagnosed many years ago - after I had my first child (she's 16). It's been off and on... but lately has been on... I've been drinking alot of coffee at work, so I know that's the culprit. I wonder if there's a connection between FMS and FBD?
God bless, Jen

Count me in ... fibro cystic breast disease, too. I was diagnosed many years ago - after I had my first child (she's 16). It's been off and on... but lately has been on... I've been drinking alot of coffee at work, so I know that's the culprit. I wonder if there's a connection between FMS and FBD?
God bless, Jen

same here ladies, fibro plus cystic breast disease.

Hi, I have mitral reguratation, I think one is the blood going in and the other blood going out, not sure about this though. I wa born with a heart murmur and was told the reguratation is the cause of the murmur. Do not know if I have breast dd but sure get breast pain. I have to check with my Dr. about that.

Hugs, Linda

Hi to all, I have not yet been diagnosed with Fibromyalgia, (my neurosurgeon says I have it and my family doc and pain doc say I have myofascial pain). When I look up symptons besides neck pain, shoulder pain, facial pain, head pain and headaches which I have had for 5 years everyday I saw in someones diagnostic charts that people with mitral valve prolapse and fibro cystic breasts are prone also to fibromyalgia. I also have Epstein Barr Virus and CMV which is a liver problem that stays dormant in your system and you have flare ups every once in a while. I have flare up 3 to 4 times a year which is a sore throat, swollen lymph nodes and sinus problems. Does anyone else that has been diagnosed with fibro have any of these health issues to go along with it.
I have no idea like many of you what it would be like to feel normal!!!!
Thanks for listening.
Lyn in Michigan :angel:
I have had surgery on my cervical spine (fused C5/6/7 with titanium pins and plates and donor bone.) It is a lot to go through to be told, sorry your operation didn't help take your pain away, you probably have fibromyalgia!!!! great!!!!!


Lynn,

May I ask who did your test on EBV? And what lead them to do the test? I show all of the EBV symptoms, but can't get anyone to run the tests. Where should I go and who should I see? Any recommendations?


thanks,
tk

Lynn
I had been experiencing neck/shoulder and headache pain for years. I went to every medical doctor for years and they said stress etc. etc. and only wanted to put me on antidepressants and never took me serious. I have had cervical spine fusion and they still don't take me serious. Anyways after a long story and a lot of years I was recommended to go to a homeopathic doctor and he puts his hands on the outside of parts of your body and says he can tell what you have that way. I forget the name of it but he is very well known and knows what he is talking about.
The first day I went to see him, he said, "I bet you have Epstein Barr Virus". He told me to go back to my medical doctor and ask them to run a liver panel test. Sure enough he was right, it came back that I had a double liver infection which was Epstein Barr Virus and CMV!!!! His nurse told me that he never missing diagnosing that. He gave me supplements that I was on for almost a year, he switched to several different liver supplements but it never did anything for me!!! Frustrating as usual. They say that Epstein Barr is a form of mono. that can lay dormant in your system (viral infection) and affect you quite often if your resistance is low. I have a sore throat and swollen glands several times a year that lasts sometimes for 3 to 4 "Months". My tongue always had a white coating on it and I always feel yuuchy (sp) from it. I think it also makes you feel like you have no energy at all like chronic fatigue syndrome goes hand in hand. They say you can get it when you are a teenager and have it for the rest of your life. It is just a matter of degree.
I don't think they can do anything for it. At least if they can, they haven't told me. If you get diagnosed and they put you on something for it, please let me know as I would be very interest to hear your story.
Thanks
Lyn in Michigan

Hi...another one with fibro cystic breast disease. Major Ouch!!
~~~Cathy

Lyn,
I use to have bad fibro cystic breasts, but totally went off all caffine and that completely took care of that problem. I do have CMV. I don't have MVP but have pre atrial contractions. It's not serious, just annoying.

Lynn
Sure enough he was right, it came back that I had a double liver infection which was Epstein Barr Virus and CMV!!!! His nurse told me that he never missing diagnosing that. He gave me supplements that I was on for almost a year, he switched to several different liver supplements but it never did anything for me!!! Frustrating as usual. They say that Epstein Barr is a form of mono. that can lay dormant in your system (viral infection) and affect you quite often if your resistance is low. I have a sore throat and swollen glands several times a year that lasts sometimes for 3 to 4 "Months". My tongue always had a white coating on it and I always feel yuuchy (sp) from it. I think it also makes you feel like you have no energy at all like chronic fatigue syndrome goes hand in hand. They say you can get it when you are a teenager and have it for the rest of your life. It is just a matter of degree.
I don't think they can do anything for it. At least if they can, they haven't told me. If you get diagnosed and they put you on something for it, please let me know as I would be very interest to hear your story.
Thanks
Lyn in Michigan

Hello Lynn :wave:

I was also diagnoses with the Epstein Barr Virus in 2002. My blood test result for the EBV (IGM) was at 4.55 and my doctor had explained to me that was very high. She had also diagnosed me with CFS (Chronic Fatigue Syndrome) and had started me on B-12 injection's once a month. The injection's had never helped any, as I would always go home afterwards and go to sleep. My primary doctor at that time had only told me to get plenty of rest and did not offer any other treatment. Your post has caught my eye because I also have the white film on my tongue and have had it for several months. My doctor's has diagnosed it as thrush. I have tried many different prescriptions but it still remains. Sometimes my tongue actually bleeds, and I also can feel the burning pain in my throat as well. I had never heard of CMV until I read your post and then researched it a bit. I am wondering if I may also have that too. I have started with yet a new primary doctor about a month ago and I do have an appointment next week for a physical as he wants to do a blood work-up on me. I have been very fatigued for the last 5 months and spend most of my day sleeping. I had thought that perhaps it could be my fibromyalgia, which I was in denial with this diagnosis for such a long time. But I am also wondering that maybe their is the possibility that the EBV might not be dormant at this time and it could me playing a role in my excessive sleepiness.

:angel: Jeanne :angel:
____________________
~LUMBAR~
Posterolateral Fusion & Infuse with Laminectomy & Discectomy on L4,L5,S1
June 2003
Instrumentation = 2 Rods, 6 Screws, 2 Disc Spacers
FBSS-Failed Back Surgery Syndrome
~CERVICAL~
Straightening of the Normal Cervical Lordosis.
Mild Congenital Narrowing of the Spinal Canal.
C4-5, C5-6, C6-7 Herniated Discs
C4-5 & C5-6 , Cord Flattening at these levels.

Bilateral Chronic L4 versus L5 Radiculopathy
Bilateral Frozen Shoulder - MUA 2/7/05
Fibromyalgia, Arthritis, Bursitis, Tendonitis,
Tendonosis, Pre-Diabetic, Anemia, Asthma,
Acid Reflux, Migraine's, Sleep Apnea
PolyNeuropathy

Tomarrow,
I was dx as CFS/fibro because I also have the fibro tender points. The white coated tongue can also be candida. My fibro doc said that it was a classic sign of candida. This just goes back to what I posted on other topics. People with fibro/cfs have underlying problems such as epstein-barr, CMV, low thyroid, micoplasma, ect. ect. ect. That's why it's such a nightmare to treat. There is actually a great drug that really corrects the fatigue. It's Provigil. The insurance doesn't pay for it tho, and it's very expensive, like $240 for 30. But, i have found it on the internet for wayyyyy less. My doc gave me a sample, and I have tried it. I used just one quater tablet, and I was so amazed how much more awake and energetic I felt. My doc recommended just starting with one quarter tablet, then go up to half tablet as needed. Heck, you could actually make a 30 day supply last months if you didn't need a whole tablet per day. So the cost really comes down that way. Most reg. docs poo poo that epstein-barr could be causing any problems like your having. My fibro doc said ABSOLUTELY that epstein-barr can cause multiple problems. It's a real struggle for all of us. I really wish you well on your quest to get well!!

Jeanne

Thanks for sending me your post back. I have outbreaks of my EBV constantly and am very fed up. I have not been diagnosed officially by a rheumotolgist yet but have been told for sure I have chronic myofascial pain. I am sure that you read in my posts that I had an Anterior discectomy and fusion with donor bone and pins and plates but it didn't take the pain away. I had a whiplash car accident 6 weeks after surgery (not my fault) which hasn't helped at all. I am sure I have Chronic Fatigue Syndrome also because I have no energy at all and am getting worse. I have also tried everything for a yeast infection (thrush or candida) and nothing has worked. There is some stuff on line that I might try even though it is very expensive. I will try it and if it doesn't do anything I will just put it with all my other bottles of expensive pills that have done nothing. Sorry I sound negative but that is the way I am feeling.
I hope you are feeling better. If you talk to your new doctor and get any hints for me about the Epstein Barr, I would appreciate it if you would let me know.
I have Epstein Barr but I have Insomnia!!! Which is kind of strange but that goes with the Fibro!!!
Talk to you again soon and take care
Lyn in Michigan :angel:

Hi,
I have had fibrocystic breasts and tested positive for EBV, but only to exposure, not active virus. I believe I did have an active virus back in November/December when my FMS symptoms got totally out of control.

Mitral valve prolapse runs in my family, but I've had two echos and have not been dx'ed with that (yet,lol.)

For the fibrocystic breasts, I used to find that chocolate really aggravated it, but coffee didn't. (???)

I've since given up both, sadly, because of my tremors.

I went to the dr. yesterday and was diagnosed with Fibromyalgia. I have to see a rheumatologist as well.
But I also have very mild mitral valve prolapse. I'm otherwise a very healthy person except for female problems. I have very sensitive breasts. Very sore and the like. I have to watch my caffeine intake. I also have had surgery for uterine fibroids.

I went to the dr. yesterday and was diagnosed with Fibromyalgia. I have to see a rheumatologist as well.
But I also have very mild mitral valve prolapse. I'm otherwise a very healthy person except for female problems. I have very sensitive breasts. Very sore and the like. I have to watch my caffeine intake. I also have had surgery for uterine fibroids.

Maria, and Lyn from Michigan,
Add me to,
the female problems ie: fluttery heart palpatations, very sore, lumpy tender breasts, with flu-like symptoms the day or two before my painful periods started, began years ago. I thought it was normal at my time in life, kept telling my pcp, 'that my hormones were out of wack.' I realized after being dx'd with FMS last May '04, that it was actually symptoms of FMS/CFS. I even had a fibrous tumor removed from my breast last April.

The doctor I see in Southern CA, addressed those issues along with the fatigue, hypoglycemia, IBS, and pain thru intregrated therapy treatment; a blend of thyroid med, natural hormones, supplements and prescription meds back in November. The female problems were dealt with right away, no more tenderness in the breasts, no more excruiating periods for the most part.

I see the treatment as being positive and forward looking. I should have more consecutive days that are better as I go thru the phases. Eventually, I will be on a maintenance program with minimal mix of the protocol.

Just want you to know that your symptoms go right along with FMS, the good news is they are treatable, so you don't have to suffer with them.

Through my own searching to understand this illness, I have found that I needed to be open to a mutifaceted approach to treatment which covers the whole body. It meant I needed to be open to having more than one doctor; ie: primary care, pain management, neurologist, physical therapy, sychotherapy, and maybe a Ruemy.

My team consists of 6, but that's a whole other topic, hope to hear from you through your journey.

Keeping looking upward and know that this is the best time to have been dx'd with this, there is treatment that brings hope and light.
a fibro hug,
uvm (I have FMS/CFS/CMP)

It's me again, I also tested positive for HHV6, Epstein-barr, CMV, Mycoplasma Pneumonia, and Candida. 4 of these are active acute at this time. I also tested positive for Hypercoagulation and for a Compromised Immune System.

PS: These are not contageous deseases, they are found in the cellular level and blood, the Immune system usually works correctly and keeps these at bay, but since I have no immune system, they are multiplying and taking over at the cellular level.

I am now started treatment, and have felt very sick for the last 10 days.

I can say I am one day closer to being better, uvm XOXO

Question my friends?

How do you all convince your doc to run tests for EBV? I can't seem to get anyone to do the tests. I have a lot of the symptoms. I DID get a Hepititis test ran. I doubt I have Hep. I don't have any of the symptoms. I asked about the EBV and the rheumy I was seeing at the time, said "no reason".

So how do you get the EBV test ran? Beg? Plead? Bargain? :)


Thanks,
tk

tk,
Hi, I had written a long respond and then my computer froze..

I wish that regular pcp's can run these tests, mine did run some of the tests like autoimmune antibodies, and Hep panel, along with all the basic blood work. However she said everything looked normal.

Then when I went to the FMS & Fatigue Specialist, he ran 34 vials of blood, some took 3 weeks to get back, for they were sent to a special lab. The first thing he addressed was my low levels of hormones and the hypoglycemia symptoms, thru a thyroid test, from the readings it also showed I was below the normal range in Iron, so that was addressed.

I asked for copies of all the lab, and cross-checked with my the lab done thru my pcp, I found were she had chose not to address the areas that I had tested low and below the normal range. This has gone on for over the last 5 years.

Then this last February, I was tested again, this time for Infectious Deseases, those showed up, some dormant, others active and acute, also the hypercoagulation, and the Throm test revealed the problems with my immune system. I was dx'd with Epstein-barr, HHV6, CMV, Candida, and Mycoplasma Pneumonia, so I am being treated currently for the ones that can be, and hopefully I will start Gamma Globulin IV therapy once approved by my insurance co.

All this confirmed to me that I was receiving the best treatment possible. What the specialist told me when I first saw him, "There usually is something underlying that is the cause of your symptoms, once we stabilize you, we'll test you and find out what it is and then treat you." You'll feel better in time, it could be 6 months or a year.

From what they have told me, along with my pcp, I am one of the toughest cases they have seen.

I hope that it is not my stubborness to continue working that has made it that way?

I sure hope you can find the right kind of treatment, that can bring you hope for the future, uvmom

Ukiah,
I'm just at the beginning of the same kind of teatment you are going threw. I'm seeing a fibro specialist also. She did tell me the same things, that we're most likely dealing with multiple underlying viruses, myocoplasm ect. I'm waiting for all my blood work to come back. She did tell me not to expect a cure, but they thought they could get me alot better. I will happily take better! You sound like your getting good care. I hope you get some real improvement!! Good Luck.

Hello Kbak :wave:

I am sorry that it took me so long to get back to you. Thank you so very much for the information on the Provigil. Unfortunately, at this time I sure cannot afford this prescription. I do have a sister that works as a MA in a doctor's office. Since you had said that your doctor have given you a sample, I am going to ask my sister if her office has any of these samples and give it a try. At this point I can use all the help I can get...

I did see my primary doctor today and he is sending me to the lab for lots of bloodwork. He also stated that the EBV could be effecting me at this time. I have had swollen ankles for a couple of days. What I didn't realize is that I once again have pitting edema in both feet and legs, all the way up to the knees. It seems my dr. was more concerned with this then anything else. But I said that I am not going to any more specialist's as I had this problem over a year ago, and they never found the cause. So it's back to the compression stocking's and low salt diet again. If it's not one thing, it's another with me... Again I thank you for sharing your knowledge and advice.

:angel: Jeanne :angel:

Hello Lyn :wave:

I did see my primary doctor today for a complete physical. I also showed him copy's of my lab test's that showed that I had the Epstein Barr Virus. I explained to him that I am sleeping my life away, and he did say that the EBV could be affecting me. He did order many blood test's and I will try and get to the lab tomorrow. He told me he will call with the results. He was more concerned with the pitting edema that I have once again developed as I stated in my last post. I also have Sleep Apnea and use a CPAP machine at night. I was only diagnosed with this a couple of months ago. I had prayed that the machine would make me feel better during the day, but know such luck yet.

For my thrush or candida I have tried, Nystatin, Mycelex, and a 22 day supply of Diffuclan. None of these meds gave me any relief. If you do decide to try anything on the internet and it gives you any relief, please, please share it with me.

I understand you feeling negative at times as I also feel the same way. I am also sorry to hear that your fusion has also left you in pain. I regret ever having mine, although I also need a cervical fusion. I told my neuro surgeon that I will wait as long as I can before I agree to have another fusion. I had done the damage in my neck when I have dove into my pool incorrectly and slammed my head on the bottom. I have been told that I am lucky that I was not paralyzed.

I will keep you in my prayer's for some pain relief.

:angel: Jeanne :angel:

Hello Tk :wave:

My primary doctor had run the test for EBV. All that I had told her at that time was I had absolutely no energy. During her examination she had also found that I had swollen glands in my neck. She had sent me to the lab without telling be what test were being done or what she might have been looking for. At that time I never read anything when bringing the paper work to the lab. Gosh, now I read everything....lol She had called me when she had gotten the results and had me schedule an appointment. But the only treatment she offered was B-12 injection's and told me to get plenty of rest. The nurses didn't believe me when I told them that after each injection I had gone home and went to sleep. Finally I told my doctor not to even bother giving me anymore as they weren't do anything for me.

I now see a Rheumatologist and he never ran any testing that I know of to check for EBV. These days I get copy's of everything. But if your rheumy won't order the test, perhaps your primary doctor will. And if you have many symptoms to EBV and your primary doesn't order the test, than I would suggest finding another primary doctor. I have switched primary doctor's three times in the last 2 years. Remember that you hire them.... I wish you the very best.

:angel: Jeanne :angel:

Tomorrow,(Jeanne)

Thanks for your very special reply!

I am so frustrated about getting any of these tests run! I want EBV, CMV and the HHV6? (not sure if I have that right), but for sure the EBV.

I called my rheumy's office again today, but they are only on half days Friday, so IF I hear from her, it won't be until Monday. But I AM going to call my PCP and ask if he will order the test at the lab for me. He told me I have CFS, but it was in "passing" as I was complaining of the glands being swollen and the extreme fatigue, but that was it. He really doesn't want to treat my FM but I begged him, cuz, my rhuemy apparantly is disturbed by my request to have Chostochondritis officially added to my file and won't return any of my calls. He said it would be okay as long as it remained simple. I even called an Infectious Disease Doc's office today and the secy there told me that I would have to be reffered by my PCP and that HE would choose which doc or which office was best for me, I wouldn't choose. I told her that I COULD in fact suggest a doctor I wanted to see and if he agreed, he would refer me to the doc I want. She still said it would be up to my doctor to choose which doctor and hospital facility I would go to. I told her again that my PCP has been my doc for 8 years I think I know him pretty well, and if there is a paticular doc I want to see, and he feels this doc can help me, he will refer me if necessary. But she wasn't hearing me! LOL I asked for their fax so that my doc could fax over my records, and she said that my doc could contact THEM. I wanted to come through the phone! I don't know what she thought I was going to do with her fax number. I guess fax her a bunch of Porno pictures or something! LOL Anyway, I AM going to call my PCP Monday and plead with him to order these tests, that it would ease my mind to have them done, and that I'll be paying for them anyway. See, he is at a "satallite" clinic and they do "limited" blood work there, I would have to go out to the big clinic that is attached to the hospital to get the blood work done. At least that's what he's done before. Unless, they can pull the blood and transfer it, but I know they can't run those specialized tests where he is at, they have to be run out at the big clinic.

I just hope he says yes. I know there is something underlying wrong. I haven't felt well in over 6 months. I had E-Coli last year. I feel different than the normal FM. I have specific joint pain, and specific muscle pain that pops up out of the blue. My ankles are sore in the morning. I have the sore glands in my neck and especially under my arms. I run a low grade fever throughout the day. I am usally low, 97.6 is normal for me. I have felt "sick" for three weeks. I have pain when I pee pee (I'm so proffessional aren't I? LOL) and my urine is very strong smelling, though it is clear. And I am getting headahes that are different than my regular tension headaches. Just a nagging ache right on top of my head. Wierd.

So, hopefully I'll be posting back with a "yippee" that I was approved to have the test done. If not, I'll just pull my own blood! LOL

Here's wishing you and everyone a good spirit,
tk

good spirit

How is everything?

Lyn in Michigan