Do you guys ever worry it's something more?

[shells17]

Hi,

I am 23 years old and I have never been the same health-wise since I had mono when I has 12. I have had a number of extreme bouts of illness including one period in college when I was unable to do much but sleep all day for about 11 months. I have been checked by almost every type of doctor out there, and I have been diagnosed with fibromyaliga, chronic fatigue, hashimoto's disease, IBS, and inactive ebstein-barr and HHV-6.  Since that 11 month "mono-like virus" - which is what my group of 15+ doctors decided to diagnose it as - I have had severe bouts of illness and lately the symptoms have gotten more random. The most recent has been severe eye/head pain. To rule everything out, I went to an opthmologist and had a CT of my head/sinuses done. Of course, as always, everything looked good. As I am learning more about fibro, I noticed that eye pain can be a part of it.

Anyways, I am so tired of feeling awful and in many ways not knowing what is wrong. However, I think that I am finally beginning to realize how REAL and debilitating fibro/CFS are. I think that because a lot of the docs I saw early on thought Fibro/CFS were bogus that there is still part of me that feels that way, too. I know that it is not true, but it is such a random disease and one that keeps knocking me down. Right now I am feeling discouraged again, and through all of this there has been a constant fear in the back of my mind that there is something more going on. I fear that one day I will go in with the same weird complaints and they will realize it is cancer or something. I know that this is irrational, but it is something that scares me. Do any of you ever feel that way? How do you know when it is fibro or when it is something else? I am beginning to feel like an idiot going to different doctors to check for things when different symptoms come up - however, sometimes it has proven to be a correct choice, such as last month when severe lower abdominal pain turned out to be diverticulitis (colon infection).

I know I am ranting, and maybe I am just writing this to vent, but any support or advice would be greatly appreciated! I am feeling like this stupid disease is beating me!

Thanks,
Michelle

[kiddthekatt]

Hi there;
   You are not alone, I think that all of us go through the worry and stress of letting our minds run amuck and then of course that adds more stress which brings on more pain. You are so young to be going through this. I'm 54 and at times like right now, I feel this disease trying to take me completely out. I've been very fortunate in having two wonderful doctors that believe in fibro/cfs and they take excellent care of me. I've been up and down for the last 4 weeks and can't seem to kick this flare.

   I had a doctors appointment last Friday to have my blood work and when I walked into his office, my internist threatened to send me to the hospital. I was hurting so bad all over. He took my blood and then he gave me a shot for pain. He also upped my pain meds. So far I can't tell any difference, but I'm still in a severe flare. If the weather would just warm up and stay warm, I could get back on my feet.

  I know what you mean by having fears that something else could be wrong. I decided to just go of that worry and let time take care of it. You're doing the right thing about going to the doctor when you have a pain that isn't the norm, never feel bad about going in when you feel that way, we have instincts and it's good to follow them. I wish I could help you more, just take care of yourself ok?

gentle hugs
Angel

[PlateletGal]

I'm glad you are here. I also had numerous health problems after a severe case of mono when I was a teenager.

If you speak with the CFS experts and other CFS patients... you will realize that your story is common. I, too, used to worry about my health and would get frustrated because my physicians couldn't diagnose me.. although I was very ill.

I hope that you will stick around because one thing I've learned about both fibro and CFS is that if you have either one of these conditions, it is VITAL to keep up to date on the latest research and treatments.

I hope that you will check out our health care pages. There are treatments for CFS and fibro that are putting people into remission.