Discussions By Condition: I cannot get a diagnosis.

Headaches, body pain, fatigue, confusion!!!!Please help!

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: Lookingforlight
  • July 9, 2010
  • 00:45 PM

I have terrible headaches in my temple (just on one side, usually the left) that are accompanied by a deep pain that travels from the back of my head, through my neck (the front too, near my lymphnode) down behind my shoulder blade, the front of my chest, my arm (inner elbow and, between thumb and index finger), down my back, side of hip, inside of knee and down the center of the sole of my foot. As I mentioned, the pain is usually on the left, but sometimes on the right, but never both sides at once. When I get these headaches, my lymphnode will throb, as well as the vein where my temple is. Often my arm and leg go numb as well. I have seen a neurologist, gotten cat/scans, MRIS. etc. The only conclusive thing that was discovered is that I have Thorrassic Outlet Syndrome, though it could not be explained to me whether or not the headaches are a result of this. In addition, I have been suffering from extreme fatigue, cognitive dysfunction, (terrible memory, difficulty concentrating, speaking etc.) and a swollen lymphnode on the left side in my neck. I have seen so many Doctors, and still no one can really give me an understanding of what is going on.I guess the good news is that all the test results (MRI'S, Lumbar puncture and bloodwork) I have had are clear except for a positive result for Mono, however I was told that I probably would not still be experiencing these symptoms if it was only Mono, as that was over a month ago. The information that I have read about CFS and Fibromyalgia lead me to believe this may be what I am suffering from, but is this pain typical of Fibromyalgia? I have read that usually the pain is on both sides of the body and that it is often ongoing. My pain is, more often than not, accompanied by a headache and is intermittent (though usually occurs a few times a day, to varying degrees of intensity). The muscles in my neck and shoulders will become very tight, and when the headache begins to subside, the muscle pain usually does as well. I also am curious if the cognitive dysfunction could have anything to do with the mono or a chronic infection. Unfortunately these problems are not new, but only are getting worse and the headaches more frequent. Any input would be appreciated. I am at loss as to what to do, where to go next and feeling quite helpless. Thanks.

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  • ) I have had are clear except for a positive result for Mono, however I was told that I probably would not still be experiencing these symptoms if it was only Mono, as that was over a month ago Mono takes some of us a long time to get rid of it, i was sick with mono for about 10weeks.. and much of that time bedridden. My symptoms with mono was extreme sore throat to the point i couldnt eat solids, feeling very unwell, achy and hurting, headaches and a very high fever. 10% of mono cases do lead to CFS and in CFS one can have reactiving mono (EBV) The information that I have read about CFS and Fibromyalgia lead me to believe this may be what I am suffering from, If you have only just had mono, give yourself more time before coming to that conclusion. but is this pain typical of Fibromyalgia?. I have read that usually the pain is on both sides of the body and that it is often ongoing. My pain is, more often than not, accompanied by a headache and is intermittent (though usually occurs a few times a day, to varying degrees of intensity). ? I have CFS and used to get fibromyalgia with it in its first few years. Fibro pain really varies, it may come and go (that is why many use the term "fibro flare"!!), the pain may also move about eg you may be sore somewhere one day and sore somewhere else another day. Some day have severe constant pain... fibro really varies. Ones with fibro may have tight muscles (i really dont think the pain helps things). And ones with fibro can tend to get headaches or migraines. There is also something which the fibro communities call "fibro fog". Its the issue that comes with fibro in which there may be cognitive dysfunction and you may find yourself saying all kinds of dumb stuff as it can be hard to think clearly. I also am curious if the cognitive dysfunction could have anything to do with the mono or a chronic infection. Yes.. mono can affect brain too and cognitive function too. I was left after the very bad mono i had, unable to think as well and with my memory nothing like it was before i had mono. Unfortunately these problems are not new, but only are getting worse and the headaches more frequent. Any input would be appreciated. umm after a month of having mono.. that would really concern me to if its getting worth. That may point to that you could be developing CFS with coexisting fibro. (mono as far as im aware dont trigger fibro, but it triggers CFS in which fibro can often happen with it too). i strongly suggest to take things easy for the next month (that is very important if you are starting to develop CFS from the mono) and then reassess your situation. Note.. CFS isnt diagnosed till one has been sick for 6mths (but some CFS specialists may give an unoffical CFS diagnoses a little bit earlier than that if you are fitting all the CFS pattern of symptoms). (if in a month or so you are still sick.. there is a couple of CFS sites i recommend you check out for advice and more info.. that being the "not crazy forum" and also Cort Johnson's forum at Phoenix Rising. In the meantime, the best you can do is probably rest up and try to make sure you are over the mono.
    taniaaust1 2267 Replies Flag this Response
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