Begging For A Diagnosis

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Sad Little Girl

Sad Little Girl (Photo credit: Wikipedia)

I found myself in the waiting room of my Ear, Nose and Throat Specialist this afternoon actually praying for an inner ear infection. Yes, that’s what I said. I was praying for a diagnosis that would be fixed with a quick supply of an antibiotic, preferably a Z-pack. Done! No such luck. My ears have hurt me on and off for weeks. This was the second time I had been to the doctor in two months. Not only did my ears hurt but my entire face, under my eyes, my head, my forehead, my entire body was aching, as if I had the flu but I knew I didn’t.

Please, I groaned to myself, let me have an ear infection, or a throat infection, even eppiglottis, the dreaded disease that I have received so much mail about when I posted a blog about it. (* Calling Eppiglottitis A Bitch Is A Vast Understatement) Even that I could take if I have a diagnosis but no, my throat was fine, my ears were “perfect” I felt like I was five years old, alone, horrible and to the doctor I looked “good.” I’ve felt worse and worse and I don’t know why. The doctor told me it was probably my Fibromyalgia/TMJ……Nothing I didn’t know already. “Gee, I’m sorry,” he said “wish I could do more.” He patted me on my shoulder as he stared at my breasts and promised to call in a prescription strength type of Advil (which, he never did.)

My only hope is that I have my physical next week with my Internist ( a woman who does not even BELIEVE in Fibromyalgia) but at least she can run some blood tests and send them to my Rheumatologist. This is SO FRUSTRATING. Everyone just wants to throw different drugs at me and I don’t really want to take them. Take this, says the Rheumatologist and this, says the ENT,  but you need energy so take this, and there is nothing for pain so just live with it. I am tired of living with it and I can’t discuss this with my sister (or even have her READ THIS ENTRY) because it is not a safe topic for us. We can talk about many things, this is not one of them. Unless she can give me concrete examples of what exactly she would like me to try and how I can pay for it.

All I know is that I have been diagnosed with Fibromyalgia for six years now and after it got better, it has now gotten worse. Does Fibromyalgia get worse? Is this something new? Can I live like this? Is it the weather? An anxiety attack? I feel so vulnerable and so lousy that I cried in the waiting room from feeling so poorly.  I noticed a father with his teenage daughter; I missed my father who would have known how to kid me like that father did. I missed mine so desperately. Do emotions come to play in all of this? I think it’s probably all of the above and none of it is pretty. Not for me, not today, not until I feel better. I’m complaining, in writing. I should just shut up.

*https://hibernationnow.wordpress.com/2011/02/03/calling-epiglo…understatement

19 thoughts on “Begging For A Diagnosis”

  1. Catching up on my reading today Laurie. I am so behind…..I’m sorry I haven’t been keeping up with you. As far as acupuncture goes, it helped through my “instant menopause” symptoms after my hysterectomy. Couldn’t take any replacement hormones right away, so I tried the needles! It helped. As far as that goes would acupuncture help you? I wish I could say YES, but I guess you would need to try it sometime. I have been told to always use a Chinese trained guy.

    I don’t suffer with daily pain as you know, and it breaks my heart to hear of yours.. The only time I have used pain medication was after surgeries. I never worried about addiction, but I guess I just never thought about it, because I used it for a short time. My son, the Rehab/Sports Medicine guy uses something called “Salon Pas” Ever heard of them? They are OTC, stick on pads that you place where the pain is….but you might need too many at once. Feel better, feel stronger and know that I worry and pray for you often.
    mo

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  3. I’m sorry you’re in pain Laurie. I sure hope you find something that is helpful.

    I used to have regular acupuncture. I was always lucky to find the best acupuncturists, with four to six year degrees in Chinese Medicine (including Chinese Herbal Remedies, but this isn’t necessary), who would see me without a fee. They knew I wasn’t able to earn an income, saw how much the treatments helped me and as a result, were very enthusiastic to offer me treatments. Acupuncture is very powerful Laurie. It is truly amazing to me. If I had the money, even for one or two treatments a month, surely I would do it. Universities are a good place to look also. They often have clinical trials of acupuncture and since you’re not on pain meds, you might be a good candidate.

    Also, the Alchemist/RN who my son and I know would agree with the diet including fermented foods, sugar and gluten free, as well as dairy free. I don’t do so well in the kitchen cooking dept., as a rule. If my son helps, then it is easier. We have a book called “The Body Ecology Diet” There are several videos on Y’tube that go with the book. Teaches you how to cook the fermented foods, etc.,

    You are in my prayers. Sending you Green Healing Virtual hugs!

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  4. Wow, are you me? It sounds like I could have written this post myself! I am on my own journey of diagnosis and am tired and frustrated. My thoughts are with you! Chris Dean at pixiecd.com referred me to your post. I have had Thyroid Ultrasound and bloodwork – found nothing), primary doctor (found nothing), dermatologist (diagnosed Contact Dermatitis, which I think is crap – that didn’t explain the extreme fatigue with the rash), then ENT for ear/voice trouble to check everything (found nothing), then brain MRI (totally normal) and now I have a TMJ appt for over a month from now (!) and wonder if I have a crippling disease or just a pinched nerve, a vertebrae out of what, or if like my mother says… it’s probably just hormones. UGH!

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  5. Emotions and stress can definitely make things worse. I have fibro, CFS and chronic migraines and when I get really stressed out the flu symptoms flare really quickly. The weather can also effect symptoms. If you are against taking prescription pain meds (good for you if you can, I take them along with a muscle relaxer, Neurontin and anxiety meds when needed) there are lots of other options to try. There are great alternatives like supplements (look into d ribose), aromatherapy, topical creams (I love tiger balm after a hot shower followed by ice packs), heat/ice therapy, acupuncture, Rescue Remedy, guided imagery (Martin Rossman has a great cd’s), tea, dietary changes (anti-inflammatory diet, gluten free), etc. Tart cherry juice helps the deep bone chilling pain i get so i drink a few ounces every day. I find that coming up with a game plan of a combo of my coping techniques really helps when I get overwhelmed by my symptoms. I really recommend looking for a new doctor that is supportive and understanding of treating fibro. It can be difficult finding a good dr but don’t give up hope – they are out there. There might be fibro/CFS support groups locally you can attend for support and there is tons of great support online (lots of Facebook groups and butyoudontlooksick.com).

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  6. I was finally diagnosed with Hep C from my GP from a summer of chronic sinus infections. Go figure. My specialist told me some are diagnosed by rheumatology because you hurt so much.
    I also am not satisfied with my medical care I received for 48 week treatment for Hep C.
    I switched, let’s pray he has ethics and cares.
    Hoping you will also find someone else and feel better. Selena’s friend, Margee

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  7. Laurie, we are working together now to figure this out, and we will. Step #1, as you know, is getting to different doctors who know what they’re doing. You have been terribly mishandled. Try to get into Dr Endlander if yoj can, as I was very serious when I said he was one of the BEST in thhe entire US – in the top 10. If you can’t get in to see him for insurance or financial reasons, I can come up with a second option, as there are a number of really good doctors in NYC.

    You also need a new Primary Care Doctor (PCP) if your Internist doesn’t even believe in fibro. That’s ridiculous! I can help with that, too.

    It is making me very angry that your doctors have neglected you so badly – there are MANY things that should have been tried as well as tested for by now that have not been. You are not alone in receiving lousy care – many patients see over a dozen before finding someone who knows what the heck they’re doing.

    If you are having this ear pain that is also whole face and head pain, it could in fact be part of the FM or you could be transitioning to ME/CFS. One of the hallmark symptoms is headaches of a new or unusual type, and of course, when you have CFS, you feel as if you have the flu every single day. I have daily migraines that include ear pain & feelings of pressure in my head & ears, as well as ringing in my ears.

    Many of the best doctors and researchers consider FM & CFS to be different sides of the same coin. They are a series of reactions in the body, usually in response to variou infections and immune and neuro dysfunction. Some people start out with FM and stay there, Some start with CFS and stay there. Many, like myself, are labeled with both. The label doesn’t matter. What matters is getting to the underlying infections & treating them, as well as treating the symptoms & imbalances in the body.

    You should give the Lyrica a trial. Start with a low dose and increase it very slowly. It will decrease your pain and increase your energy. Some people take it at night, and others during the day – your body is extra sensitive to medications, and you may react differently than a healthy person. So, what makes one person drowsy might make you more awake.

    Never, EVER, start more than one med at a time, and keep a journal charting how you feel each day – at the least, rate your pain and fatigue on a scale of 1 – 10, along with the location of the pain, and any unusual feeling or events like night sweats, increased dizziness, etc. It does take time for your body to adjust to Lyrica, so give it a chance to work.

    Just remember what I said on facebook – there is HOPE here, Laurie! You have barely been treated at all! Let’s get you some decent care and I bet you will feel MUCH better.
    I’ll get back to my questioning of you on facebook now 😉
    Much Love & Huge HuGS!
    ~Ash

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    • PS:
      So you know just how similar we are…
      In 1999, when I went from very mildly ill to full blown, I thought I was having repeated sinus infections that just wouldn’t go away. I’d take 10 days of antibiotics, nothing, so the doc would switch antibiotics & I would take 10 more days… I’d feel a little better for a couple weeks, then the crippling headache & head pressure would come back, and we’d do it all over again… until finally we had me on antibiotics for 6 weeks and I was just getting worse. That’s when we knew.

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  8. I was told that at any given point in time, 1/3 of persons with fibromyalgia are getting better or getting worse or staying the same. If you are having other health problems, like this mysterious ear pain, it is a good bet that it is making your fibro worse.

    Like you said, there is a possibility that fibro is causing the ear pain. A few years back, I had horrible tooth pain, so bad I headed to the dentist and was sent to a specialist for a root canal, only to find that muscle tension was causing the toothache.

    I don’t take pain medication on a regular basis either. But I think this is where some pain pills, patches or topical gels/creams might really help. I have a stash of stuff I use only for flare-ups, including a prescription NSAID pill and a topical NSAID gel. (Advil is an NSAID.) I get these prescriptions from a pain specialist because my rheumatologist never gave this kind of stuff to me.

    Gentle (((hugs))) my friend.

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    • what does NSAID mean?  I do believe I will go to a pain clinic, though my Rheumatologist gives me pain pills but I hesitate to use them when I feel so bad. I don’t want to get addicted. Today I feel a litte better. When I feel so bad like the last few weeks, I didn’t want use the drugs for fear of utter addiction so I battled through it…..stupid?

        Warm wishes, Laurie https://hibernationnow.wordpress.com

      >________________________________

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      • I understand the fear of getting addicted to pain meds, but most chronic pain patients DO NOT get addicted to pain medications. There are exceptions of course, especially for those who battle drug and alcohol addiction. I leading expert in this field told me last year that most of the concern about pain killer addiction has to do with other people stealing a chronic pain patient’s meds to use recreationally.

        I used to wait until my pain became unbearable to use my pain meds too, but then I realized that treating flare-up pain sooner than later helped calm it down much more quickly. You can take fewer pills in the long run if you treat your pain quickly too.

        An NSAID is a NonSteriodal Anti-Inflammatory Drug. Examples are aspirin, Advil, Aleve, Mobic and Voltaren. They help with pain, inflammation and fever. They can be hard on your stomach and long term use has been linked to heart problems.

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  9. A more typical course of fibro is that it gets more manageable over time. The people that I have seen over many many years where it got worse were:
    1. taking pain meds which messed up their brains even more and/or
    2 Stuck in a stress/anger/fear cycle which is NOT psychological but a neurochemical flood that makes central nervous system problems worse.

    I am so sorry you have not gotten any doctors who can help. That in of itself heightens the stress/pain cycle.

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    • The person I know with Fibro has left the pain meds behind, and is doing a special diet with no Carbs, lots of fruit and vegies, not sure what else, but I can get the name of the book she is using. Seems to be hopeful about it, has lost a few pounds in just the first couple of weeks, so we will see how it progresses.

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      • Thanks, MommaJan. That “person” would be me.

        The book is “Gut and Psychology Syndrome” by Dr. Natasha Campbell-McBride. I heard about this diet about a year ago and bought the book. Read it and decided it was way too much work and far too restrictive for me. However my food intolerances were restricting me anyhow. First it was dairy, then gluten, soy and and the latest thing seems to be eggs. Finding something I could eat was a chore.

        The GAPS diet isn’t “no carb” because of the veggies. But it is a whole lot of homemade soup and fermented foods (homemade. Wasn’t as hard as I thought to make them), especially in the introduction stage. The diet focuses on healing the gut, so food choices make sense to me.

        It’s been two weeks since I started. I didn’t notice much of a change (except sugar withdrawal. That sucked) until one day I noticed that instead of heading for bed during the day because I was drained, now I just moving onto the next project. And then I realized that while I still was hurting, it wasn’t overwhelming me. So I’m hoping this continues!

        I’m getting used to the cooking part. It’s not so bad. And now I have enough energy that I am considering going back to blogging and write about this journey.

        Sorry about the long post 🙂

        Sorry for the long post 🙂

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