As far as I have been able to ascertain in my time(12 yrs) with the disease and research there is as yet cause unknown, symptoms wide and varied and prognosis after the 5 year mark is " it ain't going away". I have seen and heard of people within the first few years go into remission, I have seen and heard of people functioning in the workforce and at home for decades with it. I myself had to stop work after 2 years of worsening symptoms and it has been up and down ever since but never normal again. I have heard of many some on this chatlist that are truly house or bed bound. My goal with this prognosis in front of me is treat my symptoms to try and give myself the most functional life i can get without doing irreparable damage to my body or mind. Working full or even part time is kinda out of the question cause i don't know how I'll feel each day. By the way i got the 5 year figure out of a book written by a specialist on CfIDS but that was 10 years ago. Maybe something has changed but i am unaware of it. Jim

Hi Jim,

Thank you for your response and your info. You called it a disease when the medical community calls it a "syndrome"as though it is not even worthy of being called a"disorder". They say it is a syndrome because it has many symptoms but absolutely no medical or scientific way to diagnose it. For most docs if you can't prove something with a test of some sort then it is barely acknowledged and the illness and the people who have it are scoffed at behind closed doors. I have been witness to this many times and it never fails to really hurt me. Especially when it is your own family and friends who do the scoffing.

All my medical issues started with a severe case of Epstein Barr Virus in 2006. At this time I was told that I could expect several autoimmune illnesses over the years because the EBV was so severe. Well I do have several autoimmune illnesses now but they don't bother me like CFIDS. Even the fibro I have grown used to, pain after awhile just becomes part of who you are...plus I have been successful with the use of gabapanten...thank God because Lyrica was breaking us. Now I am going through a nightmare with MS. Besides the symptoms that are like fibro and the chronic fatigue I am also having symptoms and signs that are very specific to MS, such as the MS hug. That is an absolutely horrible pain and nothing else to my knowledge can cause the intercostal muscles between your ribs to contract like that.

Of course I did have lesions on my MRI but the report indicated that they were probably due to old small vessel ischemia damage. Interesting to note that they are located in the periventricular area which just happens to be the fave place for MS plaques to show up. Week I am committed this week to getting thyroid tests since they now think I have Graves Disease...my left eye protrudes more than my right eye and my son says my left eye feels hard and my right eye feels squishy. I think our eyes should feel squishy and not hard. I have been diagnosed with blepharospasms, which are linked with MS and not so much Graves.

OK, I am really so sorry to write such a long reply to you. You seem like a nice person who really would not mind so much. Plus I remember seeing you on the MS board...are you concerned about MS yourself? Are you having symptoms of MS? It would be interesting to do research to see if chronic fatigue or fibro could possibly be linked to getting MS. I think I will look into it and send you a, message when I find out anything...if thats okay with you.

Please write back and let me know. Also I would be interested in hearing your own story, it does help one feel less alone when they know others have walked in their shoes. God I could probably write a best selling book about my miserable life and all that EBV has taken from me...not to mention the bipolar disorder that I was diagnosed with 6 years before the EBV. It took them 5 years to finally find drugs to stabilize me and it took me that long to go through the whole grieving process. So I was allowed 6 months of happiness before the EBV hit me and I spent that whole 6 months seeing docs who told me nothing was wrong. I spent it exhausted and sick and getting docket sicker all the time and at the same trying to raise my sons who were 5 and 7 yo by myself since my husband and I had moved and had no family or friends to help out. Miserable.

Thanks again for sharing, the info and the insight, I truly appreciate it........Tamye

Wow Tamye, You really have your plate full. I started my journey in 1998 developing joint and muscle pain and mood swings tremendous fatigue and cognitive difficulties. I was a board certified foot surgeon and this was slowly becoming a problem. I was tested for Lymes among others for 2 years before a younger ID guy recognized Erlichiosis. I was treated for six months and the Erlichia pronounced cured but i felt worse and I was self treating with meds and sent to psychs, neuropsycs and psychologists because no one thought I was for real. They finally woke up as I cut my practice to part time stopped doing anything useful and lost everything I and family owned and dx'ed me with CFS. Upshot no one really knew what I had but because I was a dr and cogent at the time they tried and it took disability a year to kick in. Saw everybody I could rheum, through other ID's,neuro,GI,endo, you name it. Everybody said the same thing you have cfids, no tx and no cure. Just tx symptoms and it might go into remission. Tried all kinds of alternative therapies and meds to no avail. Over the years, and this very individual, a nutraceutical for libido gave me 2 weeks of relief, a cal-mag citrate gave me 4 weeks of relief and recently a course(which I still do) of soy based implantable testosterone pellets gave me 4 months. Autumn came and the disease returned with a vengeance and just now I am able to do some farm work and volunteering. Barely. As for MS I only explored that for my own education but have been cleared of it through testing and symptom lack. I have heard in the past that CFIDS preceded MS but that was more conjecture with no real facts to substantiate it. Gotta go do waters for horses and then drs for testing see ya later Tamye. Jim

You asked if anyone had been diagnosed with CFIDS. That's CFS just a different name. The CDC named it and won't change it until a cause is found. That's ridiculous. Other illnesses are of unknown origin and have better names.

I've had CFIDS/CFS for over 14 years. In the early years I had good times and bad times. Now I just have bad days and worse days. I don't remember what it felt like to get up in the morning and feel rested.

I do the best I can. DS helps a lot. Bless you.
Vicki

Hi Vicki!

Thank you for your reply. I kinda figured that they might be the same thing. When I was diagnosed they did tell me that although the Epstein Barr Virus that I had before was not chronic it is kinda in between. Plus I was diagnosed with chronic Cytomegalovirus. According to them when my Cyto would hit it would be possible for the EBV to "come out and play". If I had a more weakened immune system when the Cyto hit. Supposedly EBV is like a "social" virus, when other viruses hit a person it will sometimes come out and cling on to them and therefore cause more damage to the person.

That is why I supposedly have "Chronic Fatigue IMMUNE DEFICIENCY Syndrome". So it makes you wonder if CFS is somehow caused by a virus of some sort. I mean what else could be the cause of It? It has to have some sort of root cause. Its very frustrating that they cant even call it a "disorder" or a "disease" because they don't know a cause. At least they acknowledge it finally. Must be because MEN started getting it also, (sorry Jim :-) )but you know how it is, women are my fragile, more psychologically messed up....whatever. I think we just know how to show our feelings better.

Well, I am going back to the Fibromyalgia and Fatigue Center this Wednesday. It is now called Chronicity also. I live in a small bedroom community outside of Austin and the one I first went to in 2010 was in Fort Worth. 6 hour round trip. Too much even for a Texan used to travelling far distances to get places. I do remember though that they were VERY thorough in their testing. They are the ones who found my chronic Cyto and told me about the viruses and how they work. They also found some strange pecuilarities about my thyroid and were treating them. I quit going because of the distance. I wish I had not because now my Opth. is thinking I have Graves Disease. My left eye protrudes more than my right one. I have also been dx'ed with blepharospasms. I cant help but think if I had stayed with the Fibro Center maybe I would not be getting this Graves Disease and looking forward to radioactive treatment. Ugghhh!!!!!

But if they have one near you they are currently offering a 30 minute free consultation with a doctor. They have you fill out this patient form and then go over it with you. They really do work. I mean I was not sleeping at all and after about 2 months I was sleeping at least 5-6 hours straight. Also I began to have more energy...not a lot mind you,....but enough to at least go to the grocery store for an hour or so. Enough to shop a bit with my mom again. The little things you know. Now I am back in my prison of a bed again. I cant think straight at all so my husband gives me "little" chores every day so I don't feel useless. Tomorrow I have to find a lint roller and clean 2 black shirts with it. Thats it. Enough to wear me out though.

The Fibro place does treatment with vitamin/supplements and RX drugs where necessary. They also do IV treatment with a IV solution called "Meyers Cocktail". The first few times I did it I will admit it made me feel very sick. But that was what it was supposed to do. After that I began to feel stronger. Anyway, I am not a spokesman for them. I just believe in it. I have been so down for so long now and the final blow came when I was told I do not have MS. No, I dont WANT MS I just want a diagnosis so that I can start to work on feeling better. I know you and JIm understand because look at how all of our lives have been completely disturbed by the CFS. All we do now is treat symptoms. I want to treat the CAUSE. Probably not in our lifetimes though. Maybe someday CFS will become as popular as breast cancer and the researchers will get some real money to work with. We can hope.

Well take care and I am sorry that you have to feel so bad. I do understand. Bless you as well! Tamye