CFSer? Needing validation...

Discussion in 'Fibromyalgia Main Forum' started by ArgyrosfeniX, Apr 6, 2007.

  1. ArgyrosfeniX

    ArgyrosfeniX New Member

    Hello all,

    I am a 34 y/o male that developed "Post Viral Fatigue Syndrome" at the young age of 16. Since then, I have had periods of symptoms that include everything on the CDC & NIH's criteria for diagnosis of CFS plus several more... It seems to come and go for me though so I have always thought that I have a mild to moderate case. I'll have a relapse that'll last from 4 to 10 weeks just after a viral infection (it need not even be enough to cause significant symptoms). This occurs between 4 and 6 times per year.

    I do not personally know anyone else with this and, as with most of you, have problems getting people to understand when I appear normal at times.

    When my condition is in remission, I can do most activities that a normal person can do, but may be tired longer afterward... Because of this, I still question whether I truly have CFS even though it should be obvious by now.

    And just to quantify my fatigue: Have been too tired to go up the stairs to bed. Have needed to break in the middle of a shower. Sometimes feel too tired to breathe...

    I guess I just need validation from other people that have CFS. Thank you for your responses. I appreciate them!
  2. upnorth

    upnorth New Member

    Hi, It does sound Like CFS but I'm not a doctor. I still even question my own diagnosis at times. I got CFS after a serious bout of mononucleosis in 2002.

    My case would be considered moderate - I think. I had to leave my job and have been on disability for a couple years but am able to be a part time (very part time) graduate student this past year.

    I've never had a true remission since my mono infection, but I have had ups and downs where sometimes I'm more severe (can't manage to leave the house and spend all day on the couch - get up in the morning, make my bed and have to lay down from the effort) and sometimes I feel closer to normal and am able 20 minute walks and a few hours of mild activity without a rest.

    overtime (4 1/2)years I'm pretty sure I've improved a little bit, but with the ups and downs it's hard to tell.

    The ups and downs are one of the parts of CFS that make it so hard for me to manage.

    You are not alone
    I hope this helps.
  3. ArgyrosfeniX

    ArgyrosfeniX New Member

    Thank you all for your responses...

    A couple of things I'd like to add / share with you all.

    * A few days ago, I talked with an acquaintence who has gastroparesis (paralysis of the stomach) this causes constant nausea and makes it very difficult to eat. She had, at one time, dropped down to 88 lbs for a 5 foot 3 inch frame. She told me about a few of her stomach surgeries -> gastric pacemaker and J tube placement to name a few. After all of this, I told her about my CFS... After I was done, she told me that she would much rather have what she has vs what I have! I must say, having lived with it for so long, this was shocking news and is actually what has prompted my resurgence in getting medical treatment.

    * I called a local resource / support group leader that I found on this site. She stated that the group had dissolved! I talked with her for some time about the local resources (I have only lived here 3 years and haven't sought out anything until now...) I mentioned the Internist that my MD had referred me to. She said that he had been her Internist for 17 years and that he is good at treating the symptoms.
    Should I look for someone that is more forward thinking than just a symptom treater?

    Thank you all for your support. Have been much more depressed about my relapse this time for some reason...
  4. ArgyrosfeniX

    ArgyrosfeniX New Member

    I am sorry Carla, I didn't mean to offend anyone needing to have their symptoms treated! I have lived for this for 18 years without any real treatment outside of lifestyle changes. Especially when the symptoms are really bad.

    I guess my last question was due to the human trials of some variations of cyclovirs. I had heard that there were some initial test subjects that had reportedly been symptom free for 3 years...

    Has anyone heard about how this test or similar tests have been going? I thought about participating, but sometimes my symptoms are so light that it would be difficult to evaluate the results.

    Thank you all for your responses! (Hugs back Carla)
  5. upnorth

    upnorth New Member

    I'm in the process of trying a low dose of antiviral partly because my flu symptoms have remained prominant throughout my illness (throat, lymphnodes, fever and headache). I see a M.E. specialist who's open to trying different treatments.

    I've been on them (anti virals) for just over three months and have notice a little difference, mostly with my throat, however, no symtoms have completely disappeared due to antiviral usage yet.

    Although having a doctor that really understands how sick people with M.E. are is really nice, I don't know if it's made a huge difference in my illness course. My Doctor's really big on pacing, pacing, pacing this has helped me limit my crashes, but also means I no longer make the most of the good days.

    Wow,18 years is a long time to suffer M.E. And you've managed to work fulltime?
    I really miss working.

    Hope this information helps
    upnorth
  6. ArgyrosfeniX

    ArgyrosfeniX New Member

    upnorth,

    Yeah. So far I've been able to work near full time. I work nights as an RN in an Emergency Department. Most of the time it is relatively slow so I can pace myself. There have been nights when I thought I would pass out from exhaustion, but I have some good coworkers that are able to help me through it. I should add that this wouldn't be possible if I wasn't a mild to moderate case. There are nights when I absolutely can't get out of bed and have to miss work, but those are relatively far and few.

    I guess one of the things that amazes me about this is that I am exposed to so many different bugs (viruses & bacteria) in the course of my job, but after the initial year at this job, I have been relatively healthy (besides the CFS). So far I haven't gotten too close to the "in trouble for # of absences" limit.

    I haven't been able to find the link that initially brought me that testing study. I do remember that it said in the abstract that for most of us, acyclovir doesn't work too well but that this new type of med was showing promise. I don't remember the full name, just remember that it ended in -cyclovir...



  7. mezombie

    mezombie Member

    There are certainly a lot of people who have CFS and experience the same roller coaster you do. It's hard to convince others that you're sick when you're able to function somewhat "normally" at times. You'll certainly get validation on this board and in other support groups. Some people in your life may understand it; others may not. Don't stress yourself out over those who don't get it, if at all possible. It's not worth it.

    You mentioned you came down with "Post-Viral Fatigue Syndrome" at age 16. That was my first diagnosis, as well. However, it's my understanding that this is a vague diagnosis given when someone continues to have flu-like symptoms beyond the usual period of several weeks, max. It's based on symptoms and signs.

    The symptoms of CFS are common to many illnesses. One of my doctors once explained that the body has only so many ways to "show" it's ill.

    I'm sure you're sick. I just wonder whether it wouldn't be worth your while to go to a doctor who doesn't specialize in CFS but is known to be a good diagnostician and simply explain your symptoms. Infectious disease specialists are very good at ferreting out the cause of symptoms like yours, as well as some internists. I would NOT mention CFS! If you do, you may be dismissed as a psych case.

    The CDC symptom criteria for CFS only apply after all other diagnoses that could explain your symptoms are explored. IMHO, it's very worthwhile to explore what else could be causing your illness. It may end up being something very treatable, or even curable. CFS is not.

    If nothing else shows up, then yes, go to a doctor knowledgable about CFS who is willing to treat you.

    As the I.D. doctor who meticulously considered other causes told me, "You do not want to have CFS".
    [This Message was Edited on 04/07/2007]
  8. ArgyrosfeniX

    ArgyrosfeniX New Member

    Good advice. Thank you for it.

    Back when I was diagnosed with PVFS, it took them nearly 2 months of near constant testing and blood labs. Really haven't been back to verify the diagnosis since then. I have found sites that state PVFS is a form of CFS or that CFS now incorporates PVFS. What I do know is that nearly every symptom I've heard attributed to CFS I have had at least at some point. Decided to keep track of my symptoms on a list to give the new internist I'm seeing in 10 days.

    Anyone have any idea of what alternate diagnosises there might be that would so closely mimic CFS?
  9. mezombie

    mezombie Member

    Other possible diagnoses: Wow, there are endless possibilites. The CDC research definition lists some, I think. Of the top of my head I can think of Mutliple Sclerosis, Lupus, other autoimmune diseases, Lyme disease, malaria, tons of other infectious diseases (more of them around these days because people travel and may become carriers).

    MS, Lupus, and autoimmune diseases in general can creep up slowly. I had some markers of autoimmunity and was monitored carefully to see if I was developing Lupus, for example. I also get myself retested periodically, especially if new symptoms come up or old ones seem to be getting worse. For example, when I went through a period where my balance was so awful that I came close to falling, I checked in with a neurologist who had a specia interest in MS.

    There does seem to be some confusion between PVFS and CFS. It would make sense to me to call it CFS if the symptoms persist for six months or longer, as the CDC criteria state. I do know people who have had PVFS but not CFS. Their symptons usually resolved within several months.
  10. ArgyrosfeniX

    ArgyrosfeniX New Member

    mezombie,

    That list put a thought in my head that almost hurts...

    What if it isn't CFS and is instead something curable? The thought that I might have suffered needlessly for 18 years, during the best years of my life, is almost too much. From 16 to my current 34... All the years that might have been spent doing activities and spent socializing with friends.

    Ouch.

    Wish I had started getting reevaluated sooner. All these years suffering and only self diagnosing myself after the PVFS. Ugh.

    Almost makes me hope for a true final diagnosis of CFS (almost). The possibility that it might be anything else never really took hold on me. (sigh)

    All the more reason to get in to see this Internist!

    Thanks soooooo very much!!
  11. mezombie

    mezombie Member

    Ohhhh...I'm so sorry I caused you distress!

    Remember, as Carla-NL wrote, we are here for you no matter what.

    I know it's hard to digest that you may have missed something. Keep in mind that it's equally true that you haven't. And if it does end up being something more manageable or even curable, better late than never, right?

    A lot of people on this board can relate to how you're feeling right now. Many people received a diagnosis of CFS, only to find out years later that they had Neurally Mediated Hypotension (NMH, a type of dysautonomia) and that their symptoms virtually disappeared once the right treatment was found. More recently, people who were told they had CFS are now being diagnosed with chronic Lyme disease. And now, there is preliminary research that some of us with reactivated HHV-6 and EBV might respond very well to Valcyte (valganciclovir--the drug you mentioned in a previous post).

    I think anyone with symptoms that don't easily fit into any known diagnosis has a hard time of it.

    Hang in there!

    (((((Hugs)))))
    The Zombie

    [This Message was Edited on 04/07/2007]
  12. ArgyrosfeniX

    ArgyrosfeniX New Member

    mezombie,

    You found it! -> "And now, there is preliminary research that some of us with reactivated HHV-6 and EBV might respond very well to Valcyte (valganciclovir--the drug you mentioned in a previous post)."

    That is exactly the one I was looking for, to ask/talk about. Thanks much for finding it. Now I can try and keep track of the research on it. It is my firm belief that antivirals will be of significant help once they find the right one(s).

    Thanks everyone for all your help, assistance and caring.
    Hugs to all!
  13. mezombie

    mezombie Member

    Along with googling Valcyte as well as Montoya (the researcher's name), you can use the "search" function at the top left of this site to pull up posts on this subject. Beware,there are many! Several members of this board are on the drug already.

    "It is my firm belief that antivirals will be of significant help once they find the right one(s)." I couldn't agree more![This Message was Edited on 04/07/2007]
  14. ArgyrosfeniX

    ArgyrosfeniX New Member

    I have two more questions that I'd like to ask and don't want to start a new thread for them (one's personal ignorance and the other is minor).

    1) When I go to see this Internist in 9 days, what tests should I make sure are done?

    2) What does "DD" stand for?

    ((Hugs All Around))
  15. mezombie

    mezombie Member

    Well, hello again!

    OK: DD stands for Dreadful Disease or Darn Disease.


    As to testing: I'm not a doctor, so I don't know what specific tests should be done, but here's something that may help. This is a list of other diseases that should be checked for.

    I would add diseases caused by parasites (not just Lyme) under "Infectious".


    =======================================================
    Differential Diagnosis for Chronic Fatigue Syndrome

    -----------------------------------------------------------

    INFECTIOUS
    Chronic Epstein-Barr virus
    Influenza
    HIV infection
    Other viral infections (HHV-6, retroviruses, enteroviruses)
    Tuberculosis
    Lyme disease
    Exclusionary tests: history, physical, screening laboratory tests, and serology if clinically indicated

    NEUROENDOCRINE
    Hypothyroidism
    Hyperthyroidism
    Addison's disease
    Adrenal insufficiency
    Cushing's disease
    Diabetes
    Exclusionary tests: history, physical examination, screening laboratory tests; consider hormone and stimulation and/or suppression tests (e.g., TSH, T3 suppression test, ACTH, cortrosyn stimulation, dexamethasone suppression, urinary free cortisol, glucose) if clinically indicated

    PSYCHIATRIC
    Bipolar affective disorder
    Schizophrenia
    Delusional disorders
    Dementia
    Anorexia nervosa
    Bulimia nervosa
    Exclusionary tests: history, physical examination, mental status examination, screening laboratory tests if clinically indicated

    NEUROPSYCHOLOGIC
    Obstructive sleep syndromes (sleep apnea, narcolepsy)
    Multiple sclerosis
    Parkinsonism
    Exclusionary tests: history, physical examination, mental status tests, screening laboratory tests and imaging studies if indicated

    HEMATOLOGIC
    Anemia
    Lymphoma
    Occult malignancy
    Exclusionary tests: history, physical examination, screening laboratory tests, peripheral blood smears

    RHEUMATOLOGIC
    Fibromyalgia
    Sjögren's syndrome
    Polymyalgia rheumatica
    Giant cell arteritis
    Polymyositis
    Dermatomyositis
    Exclusionary tests: history, physical examination, screening laboratory tests if clinically indicated.

    OTHER
    Nasal obstruction from allergies, sinusitis, anatomic obstruction
    Chronic illness (CHF, renal, hepatic, pulmonary disease, autoimmune)
    Pharmacologic side effects (e.g., beta blockers, antihistamines)
    Alcohol or substance abuse
    Heavy metal exposure and toxicity (e.g., lead)
    Body weight fluctuation (severe obesity or marked weight loss)
    Exclusionary tests: history, physical examination, screening laboratory tests, allergy testing and toxicology screens if indicated

    --------------------------------------------------------------------------------

    HIV = human immunodeficiency virus; HHV-6 = human herpesvirus type 6; TSH = thyrotropin-stimulating hormone; T3 = triiodothyonine; ACTH = adrenocorticotropic hormone; CHF = congestive heart failure.

    Adapted with permission from Cho WK, Stollerman GH. Chronic fatigue syndrome. Hosp Pract (Off Ed) 1992; 27:221-4, 227-30, 233-6.

    Source: American Family Physician, Vol.65/No. 6, 3/15/2002



    [This Message was Edited on 04/08/2007]
  16. mezombie

    mezombie Member

    You might want to check these two sources out, as well.

    www.cfids-cab.org/MESA/ccpp.html (Canadian clinical CFS case definition)

    www.cdc.gov/cfs (especially their "Toolkit" for providers)
    [This Message was Edited on 04/08/2007]
  17. ArgyrosfeniX

    ArgyrosfeniX New Member

    Thanks mezombie for all of the wonderful information. I'll see what I can do with that next week...

    This thread has gotten awfully long and accomplished its goals for me. Thank you all for writing who did.

    I will not be checking this thread anymore. Please let it work its way to the end pages... :D

    (((HUGS EVERYONE)))