Just got name...CFIDS...basic ???for New Dr.!!!!

Discussion in 'Fibromyalgia Main Forum' started by eeyore57, Sep 12, 2005.

  1. eeyore57

    eeyore57 New Member

    hi to all!!! New to site,....New to computer,.....Newly diagnosed!!--- NOT New to disease...ongoing 5 yrs now--- been crashed now for 2 yrs. Buy finally know a name for what ails me!!!! so have been researching on computer as much as possable last 2 wks in order to be able to understand a little of what New Dr. may discuss, my APPT. is this WED.,14th,a.m.!! Was wondering if you all could give me basic info needed to understand what to expect from Dr. on first visit after diagnosis ( no test done yet),-----AND basic questins I should ask him!!!!! Him being new,don,t know his 'bedside manner' yet and/or how much or what he'll volunteer!! Know what I mean?? And,(of course) after FINALLY finding this out I'm very anxious to learn all I can....important tests,treatments, management skills,etc.,etc.!!!!HAVE already learned what works for one does not for all!!! Have also learned you are likely to learn more from other patients than your Dr.---they tend to not have much time,...which is why I want to get as much as can out of this visit!!!! So any and ALL basic(to start) info you can send would 'Love ya' Lots'!!! PS. If it takes me a little while to respond to replies, is becuz using my energy now reading it all... then for Dr. < then probably be in bed couple of days, but I,ll be back!!! Thanks for help!!! eeyore57
  2. fivesue

    fivesue New Member

    I don't have any information for you as I have FM but I'm sure someone will. I do hope the doctor will be sympathetic and will communicate well...that would be a blessing.

    Hope you rest. Eager to hear what you learn. Take care.

    Sue
  3. Leaknits

    Leaknits New Member

    EEYORE57: Basic question #1 for your newdoc: "Do you know what Chronic Fatigue Immune Dysfunction Syndrome is, AND how do you treat it?
    Actually, that's the question you ask after you tell dr you need to be tested for Epstein-Barr Virus. A "positive" (now there's a contradiction if I ever saw one) result for EBV means you might now have CFIDS. There is no real test for CFIDS, CFS, or, as some drs call it "I don't know what is wrong with you....here, here's a referral to a psych dr."
    What to expect? Expect the entire gamut of responses from newdoc. Everything from you are just fine, there's nothing wrong with you, I don't know what's wrong with you, you need a psychiatrist and antidepressants, you need to sleep more (DUH!), you need to sleep less, you need to stay home, you need a job requiring lots of manual labor.
    I've heard all of those and more. I wish you the very best of luck and, if you don't get along well with newdoc, also wish you luck finding one who understands this illness.
    Hang in there!
    Lea.
  4. Dee50

    Dee50 New Member

    Hi eeyore57 and welcome to the board.
    I've being Dx with CFS- EBV. I've been dealing with it for many years. Bedridden for months at a time. Regular M.D Doctors could not help me and they run different tests and my acute EBV never showed up. I have had the best luck with a D.O. Doctor Pain Management and Orthopedic medicine folks and I now go to a Acupcturists that is a chiropractor. And I use Eating Right for Your Type by Dr. Peter J. D'Adamo. It is helping me lots.
    I wish you the best with your new doctor.
    Keep in touch
    Dee50
  5. orachel

    orachel New Member

    I just got diagnosed too, like a month ago. I was sick for 3 mos, and noone had any idea what was wrong with me. Finally I got an appt with a rheumatologist in the area, but earliest any one of 50 rheumy's within 100 miles could see me was a month out so I sat and hurt and waited. I was so excited for that appt, I can't tell you how much I was counting on starting a great treatment plan and getting a diagnosis.

    Long story a little less long...month later, husb takes off work to come to appt with me. I have pages of questions, ideas, symptom lists, etc. Was really trying to give him the info he needed to do his job well. Nightmare. Doc was an a**. Managed to convince my husband that FM was some sort of a "mental illness" (lemme tell you, that one docs comments made it 10,000x harder for me to explain this to my husband), told me he couldn't treat me bc he only treated patients with real disorders. I was flipping hysterical mess by time we left his office.

    Since then, have met with 2 other docs (note: always make appt with doc, then another backup appt with other doc so if rapport with 1st guy sucks, you don't have to wait forever till 2nd appt!), and have found one who seems to be pretty good. There are a ton of good docs out there.

    I just kinda wanted to let you know what I dealt with with Mr. Nasty Pants Rheumy because It set me back emotionally in a huge way. I was near inconsolable, he made me feel like a hypochondriac and an idiotic hysterical female (smelling salts, anyone?!). You seem to be excited about your appointment and that is awesome. I'm sure it will go amazing. But if for some reason it doesn't go great, or the right rapport isn't there with the doc, don't let it upset you! Just pick up phone book and make another appointment. One thing that people here say time and time again is that dealing with right doc is key.

    And yeah, none of them have enough time except for great places like FCC which take the time to reaaaallly diagnose, but don't bill to insurance, and end up pretty expensive.

    Let us know how it goes!
  6. deliarose

    deliarose New Member

    Well, a couple of words of caution. I don't know how you fixed on this doc, but I was just reading that some pcps/docs are reluctant to treat cfs/fm patients because they are such difficult cases.

    And by that I mean complicated and tough to treat, not "difficult."

    So it obviously pays to do a little research to try and find someone who is knowledgeable about the illness.

    It's also worth bearing this in mind so you don't get too cast down if they are dismissive/uninformed.. or whatever.

    The other comment I read recently on this topic, and it really resonated with me, is that even when you do find a doc with some experience in treating CFS patients, you get the mandatory 15 minutes and then you're out the door...until the next appointment, when u get another nanosecond..

    Given the complexity of what we are dealing with, that format is not very helpful,so you may need to consider consulting a specialist although that could mean forking out a bit of money...

    (judgment call)

    I personally saw 3 primary physicians over 5 years, all of them with some experience of treating CFS patients, and I can honestly say that the only things that helped me were prescribed for me on my first apptment.

    Specifically a sleep medication (Trazodone) and Zoloft (which I'm told increases blood flow to the brain). I had major brain fog.

    I was working, and I was trying a lot of the stimulants (Provigil, Ritalin, Adderall) and they didn't help me, so I just let the whole thing slide and soldiered on as best I could.

    In retrospect, that was pretty stupid. I recently travelled from Chicago to N.Carolina to consult a dedicated CFS specialist. He didn't have a magic back of tricks but he was able to read my symptoms better than the other docs I'd seen...and I've seen improvements in a couple of weeks.

    A lot of folks are trying the Fibro and Fatigue Clinics. You can find plenty of info on the boards about those.. my doc considers their approach a little experimental ... but then I consider him pretty conservative..

    Others are treating themselves and taking a bit from this protocol and a bit from another. If you read the posts, you'll figure it out..

    A very long winded way to share a few thoughts...Sorry! It's a congenital defect...

    Cut a long story short. Do yr homework, Be yr own advocate (get copies of yr medical records) and if you are young rest, rest, rest... you have the best chance for recovery.

    Good luck!
    Delia
  7. deliarose

    deliarose New Member

    Here's a cupla questions we shld all ask our medical professionals:

    How many CFS patients have you treated? What's your "success" rate? How successful have u been in helping yr CFS patients improve/manage their symptoms.

    Delia
  8. eeyore57

    eeyore57 New Member


    Thanks to you ALL for the insight!!!!! TahoeTeddy, my Dr. is in OKC,Okla!!!!!! I got thru the appt.,...He's looking for a neurologist to see me,...told me to drink nutretional supp. like boost or ensure. Right now I am just coversd in skin lesions and that was his primary concern that visit,..so he has me seeing a dermotlogist tomorrow, then I'll see him again!!!! Hope they can help 'cuz I'm super miserable!!! These places itch,burn, and hurt! He gave me a script for Atarex for itching and a topical steriod creme,..also upped my lortab to 10 mg.(also has the extra ingedient in tylenol in it?) for my migraines.All 3 have helped! Said we"d cover more next visit!!! TOO much to cover,..TOO little time with Dr. I like him (so far) though!!!!! Do ANY of you suffer from these miserable skin lesions????????? THANKS< EEYORE57
  9. KelB

    KelB New Member

    Welcome to the "club" Eeyore!

    CFIDS (or CFS as it's called here in the UK) is a diagnosis of elimination. Doctors tend only to diagnose it when all other tests have come up blank, so your docs SHOULD have exhausted all available tests in order to tell you that you have CFIDS.

    Doesn't mean they have, though! It's important that they rule out Lupus and (deep breath) MS as they can both mimic CFIDS and have differing treatments. Don't panic about the MS - it's a very longshot, but does share some symptoms with CFIDS and needs to be positively discounted.

    The Epstein-Barr test can be useful, depending on your age. Exposure to EBV has been identified as a trigger for some CFIDS people. On the other hand, by the time you reach the age of 40, around 90% of people will have been exposed in some form and will be carrying EBV antibodies. Certainly if you have an ongoing EBV infection, then that shares CFIDS symptoms and will need different treatment again.

    My best advice to you at this stage is... rest, rest and more rest.

    It's a great sign that you're getting on well with your new doc. Sorry to hear that you have other problems as well. People with CFIDS tend to be very run down, which makes our immune systems really vulnerable to all sorts of things that we'd previously have been able to shrug off. As it's making your life so miserable, I'd go along with the doc in treating the skin lesions as your priority. That will probably be making the CFIDS fatigue that much worse.