just diagnosed, but still questionable?

Discussion in 'Fibromyalgia Main Forum' started by valliali, Jan 31, 2009.

  1. valliali

    valliali New Member

    hi,
    i have been on this forum before because i have so many symptoms of cfs. i had been diagnosed with POTS, but have been working with a team of docs very familiar with pots who do not believe that i have it, because i did not have a positive test for it. i recently saw a doctor who works with cfs patients, and said that i sound nearly like all of them. he believes that i have something manifesting itself as cfs. however, i am a little confused, because fatigue is not really a symptom that i would complain of. i suppose i feel a little more run-down in certain situations, but i actually think that, given how many other symptoms i have, i have a surprising amount of energy. i work full-time and take a class.
    i also have swollen lymph nodes, that fluctuate in size nearly daily, a very stiff neck, and i had had very swollen finger joints for several months after first getting sick. i became sick immediatley after returning from working in africa.
    the doctor i saw, an infectious disease doc, suspects that i could have a virus or bacterial infection causing cfs.

    i am wondering if anyone else has a similar story? he is testing me for all the herpes viruses, rickettsia, lyme and mycoplasma.
    i'm also wondering if anyone else has cfs without very much fatigue? i do have cognitive difficulties, a "word salad" and brain fog, but i generally feel quite energetic actually.
  2. jasminetee

    jasminetee Member

    To me it sounds like you have CFS except for the swollen finger joints. I don't know what would cause that and whatever it is could also be causing your other symptoms too and not be CFS. However, your fluctuating swollen glands and stiff neck are classic symptoms of the Epstein Barr Virus which many like myself came down with that then turned into CFS.

    I suffered from fatigue but I was usually able to overcome it and I didn't have it all the time. After I was down for the first 8 months with all those flu and mono-like symptoms I bounced back enough to finish college, work full time as a teacher, work out and have a social life.

    Now I'm disabled however as I've gotten worse again. That's actually a typical scenario for CFS.

    I know how frustrating it is to not know for sure what's wrong. I would definitely pursue looking into what could be causing your swollen joints as that seems like something else.

    tee
  3. outofstep

    outofstep Member

    Did your dr. test you for malaria?
  4. valliali

    valliali New Member

    thank you for all your responses. i agree that the joint swelling is a bit odd. what seemed unusual to me, in particular, was that along with very swollen fingers, that were also really curled inward, i also developed these little nodules on two of the fingers. they were little bumps that were quite red and VERY VERY painful. i had no idea two little bumps could cause SO much pain. even wind blowing on my finger would make me cringe!!! the little nodules and finger swelling only lasted for about three months. this was a year ago. i have very little joint swelling now, though sometimes my fingers do look a little bit enlarged and feel a little stiff. nothing like that three month period though. and that occurred about six months after getting sick, suddenly.

    i sent in my blood to igenex and am still awaiting results. i was bit by a tick in africa. i had no way of removing it, and left it in for four days before i could get it out. so if it carried something, i feel like i definitely would have gotten it. but i don't know that lyme's is in africa, so i'm not sure what else to pursue about that. i think my infectious disease doc is testing me for mycoplasma and lyme co-infections. pretty sure. but i did also live in tick infested areas in maryland for a couple months after returning from africa. i got sick about a few weeks after returning in africa, while living in maryland. i am very outdoorsy, so lyme is possible i suppose...

    i have been tested for malaria. i definitely don't have malaria. and i can't really think of other african type of viruses that i could have, seeing as i never have a fever. in fact my body temp is much lower than normal (like 96.5).

    the doctor who told me he thinks i have cfs is doctor montoya, at stanford, who i just learned is very respected in the cfs community. he said my symptoms sound like a virus, but also very much like cfs. i am a bit confused though because i do not really have fatigue. the most fatigue i have experienced over the past two years has been over the last month, having started inderal, which can make me feel a little sleepy after it kicks in. i sleep perfectly, wake up refreshed, don't get too terribly tired after being active, am able to work...
    i have, over the last two years, developed heart arrhythmias, chest tightness, irritable bowel, vision changes, random panic attacks, swollen lymph nodes, cognitive difficulties, facial flushing etc etc. when i rattle off my list of symptoms to doctors, fatigue is not one of the ones that comes to mind. so i am not sure what to make of cfs being a possibility.

    i am also curious if other cfs sufferers have facial flushing? this was my first symptom. it was really bad for about a year and a half where the flushing would become bright red and last for ten hours. over the last six months, it has been dramatically improved and i have not had a flush like that though my face will sometimes start to feel hot and possibly look a little blushed. rosacea has been ruled out by a derm, and i don't think i would see such a dramatic improvement with rosacea. some doctors think this is a sign of an infectious problem, others don't really know what to make of it. so i'm just wondering if anyone else experiences something similar?
  5. sydneysider

    sydneysider Member

    In general your post sounds like you've been infected by something. When I read about the flushing I thought I'd reply. I knew a person who had bright red face flushing and was eventually found to have mastoplacemia (not sure if I got the name exactly right) It effects the mast cells in the body. I don't know if it was related to anything infectious, but he got it after returning from New Guinea. This is a very rare condition.
  6. emmally

    emmally New Member

    or maybe rheumatoid arthitis. The fingers sound very much like it. And it is an autoimmune disease that can be cause by a virus. It happend to my family member from a virus.
  7. PainPainGoAway

    PainPainGoAway New Member

    Hi!
    Where in Africa were you?
  8. valliali

    valliali New Member

    hi -
    thanks guys. i think you may have meant mastocytosis, which i apparently do not have. that is not thought to be infectious. but it was a great suggestion. the flushing definitely suggests something like that to be going on. i never ever flushed at all, my whole life, and then one day, i was experiencing horrible flushing. it really came on in a second. and then it was like my face was red, hot and burning all day, everyday. rosacea does not progress like that, so i know something else was going on. but no one can explain it!!!!
    i have heard that dr montoya is a leader in cfs, but i still feel unsettled about it, given that i really don't have much fatigue. i trust that i sound like a lot of his patients, but i would just hate for something underlying to be overlooked.
    oh, i was in the gambia, in west africa. tiny country.
  9. outofstep

    outofstep Member

    They do have it in Africa-here's an article from the UN
    http://www.irinnews.org/report.aspx?reportid=60445

    You're doing the right thing by ruling things out-good luck!
  10. valliali

    valliali New Member

    thanks for that article. i have read the study before, but it seems that the type of lyme that they found in senegal, where the village was actually not far from the one where i lived, is a type of reoccuring fever. i have never had anything like this. i don't think that "lyme" presents itself like america's lyme.
    but, if they have tick borne diseases that are in the same family, i don't know why they couldn't have something more like "our lyme."
  11. sydneysider

    sydneysider Member

    I'm so glad you don't have mastocytosis. My only other suggestion is getting in touch with a hospital in gambia(or the nearest big hospital), or getting your doctor to do so, to see if the illness is known locally.

    I wish you all the best.
    Please post if you find something else
    Robyn