Discussions By Condition: I cannot get a diagnosis.

Fever of unknown origin-please help!!!

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: snickers2
  • August 11, 2007
  • 05:38 AM

For the past year and a half I have kept a low-grade fever, never over 99.9, usually 99.1 - 99.6. It has been accompanied with swelling in my feet and hands, face and gums. Finally, after several rounds of anti-biotics that didn't work, my doctor ran a series of blood tests. My Thyroid, RA and most other stuff came out normal, but my ANA came out elevated. So, my doc said he thought that with my symptoms I had Lupus. He treated me with Methatrexate for four months. It took the fever and swelling away. But then, I decided I needed the advice of a Rheumatologist. He ran the same tests and said, no, I didn't have Lupus, but Fibromyalgia and Chronic Fatigue Syndrome. I have had Fibro for 15 years and the symptoms were different. But oh well, he's the specialist, so I listened.

I didn't know much about CFS because I had never been diagnosed with it. It started to make sense because of the extreme fatigue I felt and also running a low-grade fever. But in May, I was scheduled for back surgery and the usual pre-op blood tests were run. I had a bacterial infection in my body and microscopic blood in my urine. The Doc gave me Cipro for five days and I felt great....for the first time in a year. I had my surgery and recovered nicely for about 14 days. Then, the fatigue, the swelling, and the low-grade fever started again. My neurosurgeon tested my urine and I had blood in it once again. He gave me another round of Cipro.....this time for 10 days. It did nothing. My symptoms worsened if anything.

I have found a new doctor and he is running all of the same tests, once again. I'm beyond frustrated. I would like my life back, or at least to feel like I'm semi-myself. Has anyone out there experienced these kinds of problems with Fibro or CFS, or even something else? It's bad enough to live with Fibromyalgia, but I have learned how to do that somewhat. But these fevers and swelling are making me an invalid and THAT I cannot live with, or at least hope not to. Please send my any advice or thoughts. Thanks!!!!!!!

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3 Replies:

  • I would suggest seeing a Nephrologist (kidney dr)...could be possible kidney complications...
    knoxmom 15 Replies Flag this Response
  • im sorry to hear that you have CFIDS (chronic immunity dysfunction syndrome.. also called chronic fatigue sydnrome). I have CFS too (along with FM and all the other stuff which goes with CFS). FM and CFS are not the same thing .. but FM can be just one of the many symptoms of CFS and all the dysfunctions it can cause, they are overlapping illnesses. A half of those with CFS.. have FM.. (and a quarter of those with FM go on and develop CFS). With CFIDS .. it makes us like a walking incubator for viruses, bacterias etc .. as there is a low oxygen cell level state, (the oxygen level inside the cells and dysfunction at bringing it into the cells thou on normal oxygen tests they do, it will show up as normal as the oxygen in the blood is measured rather than the oxygen within the actual cell). Bacteria and many viruses thrive in this low oxygen cell state (which is the same state they incubate these things to study in labs). (Dr cheney's studies and other well known CFS specialists.. The world famous CFS expert, Dr Cheney gave an excellent lecture on this in Nov 2006 which one can get on video).25% of CFSers are housebound or bedbound.. so if you aint, you really should be counting yourself as lucky! as you havent currently got this illness severe. I like many of us.. are on disability and cant work at all due to CFS. (With just going to the shops yesterday to get a couple of items.. i ended up on shopping bench, almost passed out). Work on learning to pace better.. balance your activities better.. allowing very frequent rest periods and not doing as much.. to stop the CFS from flaring as much (and risking the condition worsening). (I find that when i go into a fever etc.. Im in a flare). Fevers are also more common in the first stage of this illness (the stages of it have no set time..but are ones most of us pass throu). Over time.. the fevers may go or become less (often within the first few years)..but other symptoms may then be more of an issue eg MCS, POTS etc etc http://wwcoco.com/cfids/bernesx.html
    taniaaust1 2267 Replies Flag this Response
  • Has anyone ever checked for vasculitis?
    GD2005 61 Replies Flag this Response
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