Who diagnosed you?

Discussion in 'Fibromyalgia Main Forum' started by mcrenfrow, Mar 27, 2007.

  1. mcrenfrow

    mcrenfrow New Member

    OK, so I haven't officially gotten a CFS diagnosis as of yet, but I am so anxious to get some closure on this. Unfortunately I don't have the time or the money to be roaming from doctor to doctor only to be dismissed, nor the transportation for that matter.

    My current family doctor (bless his heart) really means well, but he just refuses to even consider that it is a possibility. I think a CFS/fibro specialist would be more appropriate.. but I'm wondering how abundant they really are, and if you have to rule out all other possibilities before being able to see them. Also, if insurance doesn't cover it it's going to be out of the question. The only income I actually get to keep from my government check is $100 for the entire month excluding rent!

    I was curious as to whether a regular doctor or a specialist diagnosed everyone, and which one had the best treatment options? Also, since I'm pregnant now I'm afraid most doctors will blame my symptoms on pregnancy, even though they initially started months before my pregnancy. Arghh it's so frustrating not being really listened to.

    Help, advice, anyone? It would be very much appreciated. :)
  2. clerty

    clerty New Member

    It took me a year to be diagnosed with CFS I had to go to loads of consutants then after loads of tests told I had CFS

    your doctor could at least be doing some basic bloodwork just to check there is nothing else going on.

    Just keep pestering him for refferals, another thought was get the guidelines for CFS and show him them and tell him what symptoms you have.
    good luck with your babyxx
  3. clerty

    clerty New Member

    1. Fatigue
    Clinically evaluated, unexplained, persistent or relapsing fatigue persistent for six months or more, that:

    is of new or definite onset
    is not the result of ongoing exertion
    is not substantially alleviated by rest
    results in substantial reduction in previous levels of occupational, educational, social or personal activities

    and
    2. Other symptoms
    Four or more of the following symptoms that are concurrent, persistent for six months or more and which did not predate the fatigue:

    Impaired short term memory or concentration
    Sore throat
    Tender cervical or axillary lymph nodes
    Muscle pain
    Multi-joint pain without arthritis
    Headaches of a new type, pattern, or severity
    Unrefreshing sleep
    Post-exertional malaise lasting more than 24 hours
  4. ravenpaige

    ravenpaige New Member

    Mcrenfrow,
    Unfortunately (or perhaps fortunately), I still have no official diagnosis. And I've had the DD for about 11 years now. I diagnosed myself based on symptoms, the fact that my sister and daughter have both been diagnosed with fibromyalgia, another sister and myself have both been diagnosed with IBS, and we all share the same symptoms that point to CFS (also with FMS in most cases).

    Where I live, it seems to be almost impossible to get a diagnosis of CFS. Fibro seems much more likely, although those I've talked to with this official diagnosis run the range, with almost no flu-like symptoms or sleep disorder, and with an onset due to accident, to very little pain, more fatigue and flu.

    I did have a doctor a few years back suggest that I might have fibromyalgia, but I asked him if there was any treatment for that, and when he said no, I told him I thought that wasn't a very helpful diagnosis then. Maybe I missed my chance, but since I was still working (and continue to be able to work) full time, I wasn't interested in having an uncurable, untreatable diagnosis on my record for the insurance companies to glom onto.

    Now, when I go to a doctor, I tell them...I have these specific symptoms. I'm looking for an explanation that includes a treatment or a cure. Don't hand me a FMS or CFS diagnosis unless it comes along with a treatment. I don't want it.

    I guess I'm odd, but I tend to think some doctors use the FM/CFS diagnosis as a way to abdicate responsibility: "Well, I couldn't help them, but then, they had CFS/FM, and there is no cure or treatment." I'm not willing to give them that slack.

    My 2 cents (sorry). Guess you pushed my button.

    Terri
  5. mcrenfrow

    mcrenfrow New Member

    Hmm, I can certainly understand why you would have that outlook on CFS/fibro diagnosis after 11 years of dealing with it. I was also shocked to find there was no truly effective treatment (at least one that is universally accepted and agreed upon.) It's a very grim reality. I refused to believe it could be true at first.

    I'm quite sure fibro isn't a possibility given I have no muscle problems, and virtually no pain-- it's just the fatigue and especially the concentration problems and short term memory loss that's really getting to me. I almost wish it was more physical and not as much as a mental handicap.

    The reason I'm looking for a diagnosis isn't simply to be cured from all of my symptoms, but just to be able to accept it.. and this may sound overly optimistic to someone who's had the problems for years -which I completely understand- but I'd at least like to try anything I can to make this condition somewhat managable and be able to live a semi-normal life, especially for my son who depends on me. Also, my family members and boyfriend would be a great deal more supportive if they knew something was actually wrong with me, and it wasn't "all in my head."

    I get where you're coming from, but it almost seems like denial to me. I think the easiest way to cope with something like this that can be so overwhelming is to grieve, gain knowledge and perspective, accept and eventually learn to "live" again. That is why a diagnosis is so important for me.
  6. mcrenfrow

    mcrenfrow New Member

    Well actually he did do some basic bloodwork, but that was back when I had mononucleosis symptoms which were practically identical to these, they have just ceased to go away (which I'm assuming is what triggered the chronic fatigue in the first place.) everything including my thyroid was completely normal, except I believe an elavated white blood count which is normal in mono patients. he is extremely confident that the mono is just lingering, and now that i'm pregnant the fatigue is continuing even longer. i've never heard of mono lasting for eight months though and not being classified as chronic fatigue. plus with being pregnant before I am very familiar with what pregnancy fatigue feels like, and it is completely different from what i'm experiencing now.
  7. TerryS

    TerryS Member

    First of all, it is a LOVELY picture. You are a beautiful young lady!

    Well, I had been seeing my primary care doc for about 1-1/2 complaining of exhaustion, weakness, and dizziness. He kept suggesting I had sleep apnea, but we would jointly decide that sleep apnea probably wasn't the answer. He ran labs and just shrugged his shoulders. It has only been since I got copies of my records (a month ago) that I see my labs showed back in 2005 that I had an "old" Epstein Barr virus. He did, however, at least send me to a neurologist to rule out multiple sclerosis. We did CT scans, MRIs, etc.

    Fast forward to last summer...I saw an ENT for the dizziness which wouldn't go away and was getting worse, but also for my exhaustion as I kept thinking it was related to my thyroid (I do have two nodules on my thyroid and my mother has thyroid disease). He looked in my ears and didn't see anything, then he started questioning me about my exhaustion. I told him what was going on. He ordered lab work thinking I might have Lyme disease. The labs came back showing, again, chronic Epstein Barr virus. He told me, "I think you have chronic fatigue syndrome and you need to see a rheumatologist for it". In the meantime, I had a major crash in August and couldn't even manage to get out of bed except to crawl to the bathroom, and I also developed excruciating pain in my extremities.

    So, I went to see the rheumy six weeks later (first appointment I could get). He diagnosed me with fibromyalgia but said the "Epstein Barr virus titers don't mean a thing". He did however, run yet MORE tests as I had multiple other positive tests besides the mono such as ANA and some others. He was able to rule out lupus for the time being, and he ended up finding out that I have a positive AMA (anti-mitochondrial antibody -M2) which is almost diagnostic in and of itself for primary biliary cirrhosis (which is an autoimmune liver disease). So, obviously, I'm seeing a liver specialist now, as well.

    I then took myself to the infectious disease doc that I saw back in 2002 when I had cytomegalovirus (which, by the way, left me bed bound for six weeks...ran a fever for 27 days straight!!!). He confirmed that I have CFS. Because, at this point, everything else had been ruled out via blood work, CT scans, MRIs, etc. And he was able to make that diagnosis based on my symptoms and the length of time they had been going on.

    Interestingly, my 16-year-old came down with a full blown case of mono only six weeks after my crash (which is about what the incubation period is). She was very, very ill. She managed to not miss any school 'cause it happened in the middle of a break from school. However, she had a horrible time...collapsed in school...slept through a lot of her classes...has had to leave school in the middle of the day. She is STILL fighting this thing. She comes home virtually every day and crashes for 2 to 3 hours. She had to give up her dance classes (3 of them) all year.

    She now has an official diagnosis of CFS which was given to her by our NEW primary care doc. (I left the old one because he just wanted to run test after test after test...but then he'd look at the abnormal ones and just shrug his shoulders...so, why bother running tests if you're just going to blow off abnormal values??? And he refused to acknowledge the CFS).

    My new primary care doc is fully supportive of my FM and CFS. He's been incredible. Before I made my first appointment with him, I called his office and told the assistant what I had been diagnosed with and that I wanted to know if this doctor believed in FM and CFS. The doc was in the hallway at the time and overheard her end of our conversation. He stopped and told her that he absolutely believes they are real and that he has a "few other" patients with one and/or the other.

    So, see, I've gone through a bunch of crap myself trying to find supportive doctors (just like everyone else). I've decided the best thing to do is to just ask the office before you make an appointment. That way, you're not wasting your time and money, and they're not wasting their time.

    I am currently on long-term disablity and have had to apply for Social Security Disability. In those two cases, they pretty much require that you have specialists that are following you. For CFS, try infectious disease (and maybe some rheumatologists). For FM, try rheumatology.

    By the way, even though my rheumatologist confirmed my FM, when I asked him (several months later and after half dozen visits to him) to fill out some disability paperwork, his response to me was "I don't do disability"...you've got to be kidding!!! It's his opinion that, if I'll do what he wants me to do, that I'll be 100% better by end of summer. Maybe so...that would be GREAT!!! (And, by the way, he doesn't necessarily believe in CFS). When I reminded him that I can't DO all those dang exercises and such that he wants because I'm exhausted from CFS, he said, "well, you need an infectious disease doc for that...I don't know anything about CFS". In the end, he did grudgingly fill out the paperwork for me, and he confirmed I should be out of work until 9/2/07. Fair enough.

    So, your challenge is to find a doc, preferrably an infectious disease doc, who believes and supports patients with CFS, and who also will support a disability claim if and when it comes down to that. That's a TALL order!!!

    Good luck with you!!! And with your babies!!! I thought I saw in maybe a later post that you are a single mom...I hope you have a nice, safe living situation.

    TerryS
  8. clerty

    clerty New Member

    but I am sure there is something else going on anyway you ae not alone I know a diagnosis would be good to be able to try to deal with it.
    I am still in denial about my fibro?/cfs it has hit me hard.

    All I can say is try differnt things out detox is good for energy I wsh you well.

    Clertyx
  9. TerryS

    TerryS Member

    You're right about the mono thing. I've read that you should absolutely be over it within four months...that if it goes over six months and you are still having the problem, they now label it CFS (but used to call it chronic mononucleosis).

    I know that if it is caused by the mono, the good news is that it could get better and go away with time. Apparently, we just have a dysfunctional immune system.

    My infectious disease doc says that there's nothing he can do about it...that it could go on for weeks, months, or years...there's no way of telling.

    TerryS