New here, still awaiting definitive diagnosis

Discussion in 'Fibromyalgia Main Forum' started by Kenderyl, Oct 24, 2008.

  1. Kenderyl

    Kenderyl New Member

    Hello Everyone. This is my first post here and I'm not entirely sure what to say. I've been a member of another forum over the past two years for Hyperemesis Gravidarum (a life threatening condition of pregnancy that basically caused my body to violently reject all food and drink for the duration of my pregnancy). After giving birth to my daughter (now 18 mo old), I've progressively gone downhill in my health. Symptoms that were once merely an annoyance have become debilitating. Several members of my HG boards have also recently been diagnosed with Fibromyalgia so I suspect (as do they) that our pregnancy conditions were likely a trigger. My physician keeps putting me off for a legitimate check. So far my Thyroid has been checked ("within normal range"), Lupus came back negative as well as various other tests that I'm unaware of what they mean. One thing that came back was a very low Vitamin D level - not sure what that means.

    I feel really awful, like I am living with a perpetual flu. My body aches so bad sometimes that I just want to cry. My joints get shooting pains, my hair is falling out in large masses (clogging the vacuum cleaner and drains and can be found virtually everywhere), I'm SO tired all the time and with my four children (three of which have disabilities), I'm struggling to keep up. And then there are the other far my list is long but the most recent symptoms are the ones that are causing me to feel as if I'm losing my mind.

    Recent Symptoms (within the last 1-3 years)

    ? Short term memory loss or difficulty in recall from only minutes before. Forgetting parts of conversations or answers to questions I had for someone, etc. Forgetting entire conversations in some cases.
    ? Speech changes – stammering, slurring words or mixing sounds of several words at once (like having verbal dyslexia??? If there is such a thing?) – reading (especially aloud) is nearly impossible.
    ? Periodic confusion or hard time concentrating – lasting several minutes sometimes. I often struggle to grasp & retain information if it is too long to read through/more than a paragraph. Verbal instruction can cause similar problems and often have to be repeated back a few times. Driving has become dangerous: I have found myself in a foggy version of “auto pilot”, forgetting how I got to where I am, etc. I do not feel safe driving anymore. This is a HUGE disruption in my life!!
    ? Inability to think of words (esp. nouns) when speaking. My family has grown used to playing a twisted version of charades when trying to communicate with me. Often I have to point, or give adjectives to describe the thing I’m referring to.
    ? Sunburn easily (within minutes & even through clothing – followed immediately by horrible muscle aches & fatigue as if coming down with the flu)
    ? Hair loss (thinning hair, it used to be thick) – Thyroid tests already done and deemed “normal”
    ? Frequent achy muscles in shoulders/neck/back/arms
    ? Unexplained “pains” in upper arms, calves or thigh muscles that come and go – feels as if I had a fresh work out the day before but I didn’t
    ? Often feel as if I’m “coming down with something” but rarely ever get symptoms of anything significant
    ? Muscle & joint stiffness after resting (mornings are especially bad or after sitting for long periods of time)
    ? Joint discomfort or stiffness - particularly feet, knees, hands, elbows, shoulders (worsened in the last 1-3 yrs)
    ? Light sensitivity (visually)
    ? Extreme Fatigue – no matter the amount of sleep
    ? Anxiety – not always stress induced, sometimes I feel panicky for no apparent reason at all

    Anyway, I'm struggling to get in with my physician - the appt this time is over a month out still. She knows that Fibromyalgia is a concern and even stated so in her last letter - she also has been aware at how miserable I am, but no sense of urgency on her part to get to a root cause and a remedy to some of my symptoms. I'm really hoping that I can find support here and guidance as to what I should be doing as I'm feeling pretty helpless right now. Thank you in advance.

  2. 3gs

    3gs New Member

    im so sorry you are feeling so awful.

    from what you said it does sound like fibro. if you read some of the posts here it will sound like you.

    also good info to take to your doc and blood tests to have done.

    is there any way you could get in sooner? call her and tell her how awful you are doing.

    do you have anyone that can help you out?

  3. lgp

    lgp Well-Known Member

    Hello and welcome to the boards. You have been through alot it seems and you have certainly come to the right place. There are many compassionate and knowledgable people here who thorougly understand what you are experiencing right now.

    Have you considered asking the doctor's office to place you on a cancellation list? When they place you on a cancellation list, that simply means that they will call you right away if someone cancels and offer you the opportunity to take that appointment. It could be worth a shot. Also, is your appointment with a rheumatologist? If you don't need a referral, it should be since they are best at confirming a fibro diagnosis.

    Finally, I would suggest to you that you keep an organized pain journal on your computer (like a timeline) , print it off, and present it to your physician to read. They can add it to your medical file and you won't have to ramble on and on about your symptoms and what's bothering you at your examination. Sometimes you also forget stuff that you meant to mention , so it's really a good thing to do.

    I hope you get the diagnosis you're looking for so you can go forward. As odd as it sounds, I was so happy when I received my firm diagnosis, because I could finally assign a name to my litany of odd symptoms. Good luck and keep us posted.

  4. Janalynn

    Janalynn New Member

    Hi Kenderyl - Welcome! It's nice to have you here - although of course, we all wish it were under different circumstances.

    I agree with everyone else who says - try to create a sense of urgency with your doctor and insist on getting in earlier - you just can't take living like this another day.
    Low Vit. D levels can certainly cause some of your problems. When that was found, did that doctor tell you to take some supplements?

    You definitely deserve a diagnosis. You need to get out of the pain you're in so that you can function. You have a lot on your plate. I would say (not a doctor though) that the symptoms you described certainly fit the Fibro bill - many of which we all have to some degree. Of course there are so many things that mimic Fibro or that Fibro mimics that's why seeing someone who knows how to diagnose is important - also having that bloodwork done is critical in ruling out other things.

    I know it's not easy, especially being a Mom, but you MUST try to rest whenever possible. You will be reluctant to do so, but you must. You have to listen to you body. I've said this before and I really mean it, I liken it to being on an airplane and putting your oxygen mask on first so that you can then help those around you. We are women are so used to putting others before us, it's going to be an adjustment. There are lots of adjustments to be made with Fibro - but in time, you'll learn to make them.

    Please try to call your Dr.'s office Monday morning - let us know if you have any luck. Like someone else asked - are you seeing your regular PCP or a rheumatologist?

    Very nice to have you here- please post more and often!!

    PS - how horribly scary to go through what you did with your last pregnancy! Is your daughter okay now?
  5. Kenderyl

    Kenderyl New Member

    Thank you for the replies. :)

    The HG pregnancies were all pretty awful but my most recent was the one that put me in one life-threatening circumstance after another. Gracie is now 18 mo old now and despite a premature birth (I had to be induced to save our lives), her failure to thrive (because Dr's insisted that formula needed to be fed immediately after birth and that I couldn't wait for my milk to come in which compounded problems for us), and then her acid reflux (which has remedied itself and she's no longer on meds for it) - I think we're finally out of the woods.

    I am on a cancellation list and my DH is going to call the office tomorrow and try to bulldoze a way in to be seen earlier. He recommended that we just walk-in, unannounced and demand to be seen. Our doctor is a PCP - not a Rheum. We have to go through her before I can be seen by a specialist.

    As I mentioned before (I think??) I've already had several tests done that have ruled out a number of possible suspects to my woes. Lupus and Fibromyalgia both run in my family (as I recently was told by my mother) so those were the two primary suspects. If you viewed the rest of my symptom list it looks almost identical to many of the "Fibro Symptoms" listed on most of the main websites for the disease. I also have a great number of "tender points" that my husband has discovered (much by accident and with a startle as I winced out in pain when he discovered them) that I believe may be some of the same points that are shown as common points for Fibro patients. Wish I'd known about them sooner - it'd have saved my husband from a lot of guilt.

    I know about the resting whenever possible. It's difficult for me (as I'm sure it is for many of you). After being on bedrest for nearly 2 1/2 yrs for the HG pregnancy and the mold exposure a year before that - I was really hoping to get my life back only to find that my body seems to be permanently scarred, preventing me from being ME. I used to be so active. Now I'm constantly tired, achy, and miserable. :( I'm starting to track my symptoms using one of the trackers I found here. Hopefully that will help my PCP in making a diagnosis sooner.