Feeling sick and need some advice before Dr. Appt.

Discussion in 'Fibromyalgia Main Forum' started by goofgirl, Mar 31, 2007.

  1. goofgirl

    goofgirl New Member

    Hi everyone,

    I just registered on this website and already the posts I've read so far have been really interesting and informative. Can anyone please give me advice on how I should approach my doctor about CFS? I have been researching CFS because I have felt terribly ill for about six months. I had minor surgery (foot) last July and starting around the end of September, I began getting many colds, infections, etc. I have had at least 3 periods of SEVERE exhaustion, i.e. sleeping for days and not feeling rested. In between these periods, I have maybe a good week, then I go to the gym and start doing more in general and then once again, feel fatigued and come down with what feels like a cold/flu. I seem to frequently have a sore throat, achey neck and painful lymph node on one side of my neck. I went to the doctor in November, December and January; each time I was told to take my vitamins, exercise and eat better, that it was just viral. I have tried to improve my diet, take vitamins and get adequate rest, but I'm afraid to start exercising again. Twice I was prescribed antibiotics for 1) ear infection 2) sinus infection. Here it is the end of March and I just spent a week off of work, three days in bed, and my achy throat and headache are back. I just turned 30 and feel like my life is starting to pass me by since I've been sick.

    I have an appointment Monday and want to discuss testing and treatment options for what I've been going through. Should I tell her I think it might be CFS right off the bat? I just don't know what the general feeling of physicians is about it. I DO have depression and have been on Zoloft for about 10 months and am seeing a psychologist for counselling. I believe my depression is worse than it would be if I didn't feel physically sick all the time. The isolation of being so tired and not going to work or even out of the house for days is starting to take its toll.

    I would really appreciate hearing your personal experiences and any suggestions you have for my doctors appointment. Thank you in advance for any help. I'm very desperate to feel better and really hope my doctor will do something for me instead of blowing me off as before. I look forward to reading your posts.

    Sincerely,
    Jessica
    [This Message was Edited on 03/31/2007]
  2. irishprincess

    irishprincess New Member

    the only thing i can think of is tell him you have been doing alot of investigating sounds like fibro or cfs, if by chance he should try to blow u off maybe ask him if he knows of any fellow drs that might know more about thee ailments.
    irish
  3. jaltair

    jaltair New Member

    What you have experienced just may be CFS. The jury's still out on cause, however, the cause could be viral. I'm giving you a link from Centers for Disease Control on what the most current ideas are on CFS. There is a lot of great information on the site.

    Right now, I'd recommend that you make a written list of symptoms and dates (like a diary) going back from the beginning.

    It wouldn't hurt for you to mention your concern about having CFS because of symptoms. CFS is pretty recognized by the medical community these days as a viable condition.

    http://www.cdc.gov/cfs/
  4. goofgirl

    goofgirl New Member

    Thank you both for your input. The CDC website was one of the first sites I went to for info, it was really helpful and comprehensive. I also got some interesting information from the Mayo Clinic website. I am very anxious to get some answers about my health. This has been a difficult few months. I'm interested to hear about what others went through when they first became ill and how they delt with doctors, tests and the isolation. My boyfriend may have to go to Canada for a month for his job. He is my rock and I am really nervous about being left alone for so long!

    Thanks again for responding to my post!

    Jessica
  5. Lichu3

    Lichu3 New Member

    the number of times you felt like coming down with a flu, cold etc. after exercising as this is definitely NOT something in the definition of depression.

    It's called post-exertional malaise and is a hallmark of CFS. Even if your MDs believe in CFS, it is wise for them to run several tests on you to exclude other treatable conditions.

    Bring the CDC definitions with you and tell the MD which of these symptoms you have.
  6. 545

    545 New Member

    Sounds like a very frustrating situation.

    Without being rude, I would tell the doctor that her treatment is simply not working and ask her whether there's a better way to go about things. Perhaps off-handedly ask whether seeing some sort of expert in chronic fatuge, or, as I call it to the doctors, "otherwise unexplained fatigue". Or suggest to do other medical tests - the conversation on glut depletion might give her a place to start.

    Hopefully she'll react positively to these suggestions - the only thing I know about medicine was a quote I read Osler wrote: "The practice of medicine is an art, not a trade", I think that that means that you don't tell a severly deteriorating patient to do the same thing for three consecutive months in a row when you don't know what's wrong; but the quote might mean something else, I'm not sure.

    As I've learned - both from this board and from my internist - there are *tons* of tests to get done, systems to look at, treatments to try, subclinical things to rule out. It's up to the doctor to decide where to probe, what systems to unfold; maybe it's a quesiton of where not what - and again the glut path seems like a promising place to start (see methlyation protocol thread)- but your, um, human body is your doctor's oyster.

    Unfortunately, some dr.s don't see it that way; my previous internist was nice & genuine; I came with my own suspicions regarding cortisol, wheat, & diabeties, and after we ruled those out, our progress literally came to a standstill; and, like you, I tried to shake it off, exercising and leading a busy life, but then things just collapsed. Off handedly, he referred me to an endocrinologist, who ran more basic (non-endocrinology) tests that the internist didn't even consider, & found some interesting things beyond raised cortisol (vit d deficiency, liver irritation); he referred me to a more investigative dr who'se doing a bunch of other tests (one for a rare disease called wilson's came back indicative, f/u testing for that this week).

    One lady on the board recently recounted her experience of spending 12 days in the hospital doing nothing but medical testing; unfortunately nothing was found, but it's that sort of rigor that we should come to expect from dr.s, given our symptoms.

    The impression that I get is that most of these blood work-ups *do* reveal things & hint at options, they're just expensive and dr.s don't like to do them. I recently read a piece by a Canadian dr. who was able to successfully trt most of his CFS patients, and his only secret was that he did a "full medical / blood-lab workup", and then treated the profile of subclinical issues from there. Again, it's expensive, but as this dr wrote, most of his patients, by the time they got to him, had spent more money getting individual tests done with numerious other drs than his "workup" cost, and yet, when they got to him, they were still lacking certain blood-lab essentials.

    Um, sorry for the rant, sometimes my brain turns on when it's time to go to bed. But, yah: I would tell her that whatever she's doing, she's been doing it for ample time, it's not working, where should we go from here? And if she's really not sure, I'd consider asking her about other people who might be a little more sure.

    Hope it goes well
  7. goofgirl

    goofgirl New Member

    The doctor's appointment was yesterday and went pretty well, I guess. She seems to be pretty confident it's mononucleosis, although mono typically doesn't last for six months. So, she sent me to the lab for a battery of tests (blood workup, urinalysis, etc.) She also mentioned thyroid and when she read thelist of my symptoms I compilled, she said, "Yeah, a lot of these sound like Chronic Fatigue," although she didn't seem very open to the idea of CFS in general.

    Yesterday was my first day back to work after this latest bout of fatigue, with four days off. It was difficult to get through the whole day. I was so tired and it was hard to concentrate. I also kept getting hot and cold, even though I don't have a fever, and I hurt from head to toe. When my honey and I went to bed last night, I just started crying from fatigue and frankly, just being sick of feeling sick and in pain. He's so understanding and I'm lucky to have someone in my life that won't judge, just cares. I have one test left to do and for it I can't take any anti-inflamatories for two days; this should be fun... not...

    Again, much thanks for everyones replies. I appreciate having folks who understand how hard this is.

    Jessica
  8. Engel

    Engel New Member

    I think most DRs do not want to say FMS or CFS ... I don't know why they are so reluctant to DX us? I am in a really bad flare (again) after just coming out of one that began around the holidays and I was going to return to work and now I am flaring really bad again. :-( I am seeing a Rheumatologist soon and hopefully he can help me? I told my boss to start the LTD yesterday. I cannot return to work like this. I am glad that your DR at least listened. Good luck to you.
  9. 545

    545 New Member

    Ouch, sounds like a tough few days. Those days are the worst, where you can *see* yourself being completely out of it, but you can't do anything about it & just want to lie down. Best of luck, try to max your sleep and get through the day without too much brainstrain..

    Regarding diagnosing, I wouldn't be too off-put by not receiving a dx. I think most dr.'s think that there aren't treatment options for these diagnoses, so I could see how they would think that, in order to best treat you, it's best to look in other directions. If you were diagnosed with cancer, treatment options are relatively clear; if your diagnosed with CFS, not much will change treatment-wise (unelss Rich's trt proves a sucess!) - so try not to worry about that too much for now. Your doctor can, however, learn from past research, which might yield tips regarding overexertion (e.g. you can't just bully your way through this one).
  10. NyroFan

    NyroFan New Member

    jessica:

    I am so sorry that you have had this problem. I hope you can feel better real soon.

    Maybe you can make a list of your problems and bring it to whatever doctor you want.

    One of them might be able to work better with you. You could try the doctors who specialize in various disorders.

    Rest, eat well and do not let any stress get to you.

    I hope we hear from you very soon.

    nyrofan