Since I was diagnosed with FMS after a bout with Mono, I also have CFIDS/CFS or Chronic Epstein Barr Virus (CEBV) as well... Some days the fatigue is worse than the pain from the FMS.
How many of you have been diagnosed with Chronic Fatigue Syndrome or have had Mono?
Oh no, Les!! You know I will have to look all that up, but am so sorry you have to battle all of this disease at your age! At least you are getting a clearer diagnosis, and can properly research, get meds and fight!! I mean it little one, you have to stay determined! You have to get well enough to enjoy some of your young life, because it is fleeting! You turn around and your grandkids are having kids and you think, "Where did it all go?"
I'm here for you, we all are, anytime, and I will look all of those up!!
Well, you would have to have such a controversial diagnosis, sounds just like autoimmume disorders, except they are calling it immune deficiency, where autoimmune is immune overdrive! Keep going to the Dr, make sure it is a good one, because this diagnos is could change from the sounds of it!
I'll be checking in with you, or you can leave me e-mails here! Anytime, Les!
Holy crow! That's a lot on your plate at such a young age, as SK points out. I'm sorry that you have to deal with this at your age, when you should be able to be going out and having fun. The good part of your youth is that there will be so many better treatments in the future that you'll have the opportunity to experience. That IS something to be thankful for. People in my grandmother's generation just suffered with these miserable diseases with nothing to help them.
It is just me or does CDIF sound almost word for word like FMS? Are they the same disease, with slightly different symptoms? The similarities are stunning. And how does immune DEFICIENCY cause nearly the same symptoms as immune OVERDRIVE??
Epstein Barr - I thought it was an earlier name for Fibro. Nope. Sounds pretty nasty on its own. It's strange how all of these bugaboos seemed to jump onto you one you had the mono. You have to wonder if some illnesses/traumas open the immuno floodgates to all of these related illnesses, and what the mechanism is that allows the floodgates to open?
At any rate, I'm glad you're here and hope you get a lot of support and comfort. Welcome!
Well, Lesley, I am unhappy to say that I found many, many, many, many, MANY similarities in what I'm going thru and CFIDS. More so than even Fibro. So yes, maybe you do have another person here who has it or both diseases.
How nice, sounds like doctors treat CFIDS with even less interest/respect than fibro. Goodie.
I kinda wish I hadn't looked it up.
Aww, thank-you Susan, you are so sweet!! I was under the impression that the terms CFS & CFIDS seem to pretty much be different labels for the same problem. CEBV (Chronic Epstein-Barr Virus) IS a bit different as it is diagnosed after the E-B virus has been activated as with Mono yet the symptoms seem to stick around. I have been taking a treatment that works well for the fatigue. I cannot thank you enough for your support, it means a lot to me. I thought that FMS & CFS commonly coincide, which is why I originally posted this thread.
I have had mono before and also have CFS or CFIDS (whatever the doctors are calling it now).
I had mono in college and didn’t return to normal after it resolved. Many years passed before I was awarded the CFS/Fibro diagnosis. Lucky me!
Wish you the best,
I apologize if the information you read upset you in any way! However, as we very well know, no one--no doctor in this WORLD--has the right to say we don't feel a certain way when we DO! Keep your chin up! :)
Renie and Sheila and Rachel are such experts on this...I know there is a connection, but some believe it is a doorway to lupus, now before you get upset, what makes no sense to me is how you can relate an immune deficiency to an immune overdrive. Two opposite problems of the same system BUT very similar symptoms. This could be the reason you have Fibro. Remember what my Univ Prof Rheum told me, FMSis a condition not a disease, it is caused by chronic pain changing the brain, to treat the FMS, you must find the cause of the pain. Of course I am not a med professional, so this is supposition...
What kind of specialist to you see, Les?
Haven't talked to you for a while, sounds like you are still fighting the fight!! Cheer up, you are in good company, now we have to talk you into getting a Doctor you trust and adore. This will ease much of your pain. As always, I wish you well on your journey!
A treatment that works well for the fatigue? Are you sharing girlfriend?
Totally agree, a good doc helps so much!
Oh good heavens, no, please don't apologize! These illnesses are terrible things but it helps us to better understand one another when we read up about them. I just read discussions about CFIDS - very sad and depressing. (I realized it's prolly not what I'm going through, though.) Must say, Fibro sounds more painful but less isolating. I feel so badly for anyone with CFIDS - just a horrible disease! But I did post a study with some encouraging info about CFIDS and Fibro, so you might want to take a look.
HUGS!!! to you, my dear. What a tough disease to deal with!
Poor Sunflower! I had no idea about this disease and how nasty it is until I did some reading. I hope you're not in the peak of an episode currently. I know we all have nasty stuff to deal with but it seems like at least we get used to our own nasty stuff. When you see what others deal with it really puts things into perspective.
Some young gal passed some wisdom on to me on this site, she said if everyone took all their troubles and put them all together in a big bag and had to choose one, we would more gladly take back our own. Wisdom from a very young woman, very ill. there are amazing people in this world I have met so many of them.
It’s complicated… Best explained by saying that my disability benefits are dependent upon this jerk doctor. He has been quite unpleasant and threatening recently. I did find someone promising but he made a bunch of threats. I have to be very careful - my job and finances depends upon it.
I am waiting to make the final change until I know my husband’s job is secure in case I loose mine. I was the primary breadwinner for several months when my husband was laid off. Sorry TMI.
Oh my, Petunia… So many people are so much sicker than I am. I appreciate the validation that CFS is nasty stuff.
How is Duncan Joe? Send me a note so I don’t hijack this discussion.
So well said, your whole post.
I just couldn't believe the level of despair at the CFIDS site. I felt terribly for the people, as it seems that CFIDS flattens you even more than fibro. The level of exhaustion was frightening. i mean, I'm tired a lot and sleep a lot but I have periods of activity and normalacy. It sounds like those with CFIDS don't.
PS: Duncan Joe's eyes seem to be responding well to the drops. He'll see the vet in another 3-4 months for a checkup.
Thanks for the update on Duncan Joe. I am so happy to hear he is responding well to the drops.