Receiving the Correct Diagnosis is Just the Beginning

Receiving the Correct Diagnosis is Just the Beginning

For years all I dreamed of was finally knowing exactly what was wrong with me. I naively thought a diagnosis would mean a cure, an end to the suffering, or at least a way to control my many symptoms.

I started having issues when I was 11. I started vomiting and fainting. I was diagnosed as having “nervous stomach” and low blood sugar. I was told to rest. That was the beginning of almost four decades of wrong diagnosis after wrong diagnosis.

I missed a lot of school and work with flu-like symptoms. Every time I went to the doctor I was sent on my way with instructions to rest. I started having so many issues that I would bring a list of my symptoms to my doctor appointments. You get to the point that you eventually start to feel you might be a hypochondriac because everyone says so. You begin to doubt yourself. I got so frustrated because no one believed me.

The correct diagnosis came 39 years later. After seeing almost every specialist known to man, and submitting to almost every diagnostic test available, it was finally discovered I have fibromyalgia.

A fibromyalgia diagnosis isn’t a death sentence. It’s not stage four cancer or some other life-threatening illness. It’s not going to kill me. But I quickly found fibromyalgia is life without the possibility of parole. Instead of a cure, all I got was uncertainty. There isn’t a quick fix, no one pill, no particular diet or exercise plan. I was told I will be like this for the rest of my life and my symptoms will only worsen over time.

I came away with more questions than answers. How do I control this? Modern doctors like to prescribe drugs like Lyrica, Cymbalta and Gabapentin and send you on your way. They treat the symptoms, but not the underlying issue.

My primary care physician offered a natural approach, but I was disappointed to find my health insurance would cover only the cost of the initial consultation. The out-of-pocket costs were too high for me to follow through with the treatment recommendations. I became very discouraged and felt more hopeless than before the diagnosis.

For a few months I suffered with the symptoms and tried to get through each day. Finally, after a painful flare, I decided it was time for me to stand up for myself. I don’t want to live this way! I deserve more than this. I need to be my own advocate. No one else is going to do it. I need to take the initiative to find treatments that work for me. I need to find resources and information to guide me through this difficult journey. I also need to find a support system. Whether they are friends, family, co-workers or online groups, it is imperative to find positive, loving and understanding supporters. Hence, began my journey to find balance between my illness and my life.

To find balance with fibromyalgia is a journey with many setbacks. It is a lot of trial and error. Finding balance means wading through mud before finding clear water. Something that works for your friend may not do anything at all for you. But you need to be open-minded. Changing your diet. Simple stretches before work. Epsom salt baths before bed. All of these can provide some comfort and make a big difference in how you feel. There is no cure for fibromyalgia, but you can find ways to soothe, control or minimize your symptoms.

Note: Fibromyalgia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fibromyalgia News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to fibromyalgia.

11 comments

  1. StevefromMA says:

    Good luck to you, Carrie.

    As an aside, I was diagnosed 30 years ago after only one month of misdiagnosis (Lyme) and wrong treatment. The sad fact is that it did not do me any better and, after dozens of meds, supplements, and non pharmacological approaches, I’m just where you are. I don’t know if that makes you feel better but I hope so.

    • Carrie Anton says:

      Good luck to you Steve and thank you for your comment. No matter how long it takes to get the diagnosis, we still have to live with this illness and the challenges it brings with it.

  2. Grace from Australia says:

    This is why I laugh when they, yet again, find something that causes FM. I don’t care what causes it, find me the cure! I have absolutely no faith in doctors as they have no idea. I am listening to my body carefully and mostly managing things myself. Looking back I can see I also had this ‘thing’ since my teenage years and I am 65 now. We will survive! Although I truly have no wish to get really old. No I am not depressed or suicidal but I am looking forward to heaven where my new home and my new body is waiting.

  3. Marina says:

    For me, getting the correct diagnosis, or rather getting the doctors to believe me and test me to find that, as I have believed ever since the horrible thing started 7 months ago, my fibromyalgia (diagnosed in Aug 2016) was caused by peripheral neuropathy (or small nerve fiber pathology) -the result of taking the EVIL antibiotic – ciprofloxacin for ear infection. This is well known and it is all over the web and some doctors even admit that this drug causes peripheral neuropathy. Yet, I was being sent around and no help was given while this creepy disease was destroying me and got everywhere in my body. I did not sit around and researched everywhere and found 40 pages of links on the Web while the doctors just kept brushing me off. I found my own naturopaths and massage therapists and spent thousands of dollars before I finally got to see a neurologist -today! (7 months later) – but he is still not sure (all my symptoms for PN fit perfectly). At least, he is ordering more tests… Yes, I WANT the DIAGNOSIS badly, I want it now and I want the treatment now. I want my life back and I don’t want to be MANAGING what the doctors have destroyed until I die!

    • Carrie Anton says:

      Marina, Good for you! Keep standing up for yourself and don’t take “No” for an answer! Best of luck to you! I hope you get the relief soon.

    • Alison King says:

      Hi Marina, I was diagnosed with Fibromyalgia in May 2016. I too believe that my symptoms were caused by long term use of the EVIL antibiotic. I was taking Lymecycline every day for the best part of 2 years for Rosacea. It’s all well and good being diagnosed with Fibromyalgia but no-one can really help you with the cause or a cure. It is so frustrating having to deal with the pain and exhaustion. It truly is life changing and difficult to come to terms with.

    • Carrie Anton says:

      Erica, I’m so sorry you are going through this. It is very scary. I’ve found support, ideas and hope from others with Fibro. If you haven’t yet, go on Facebook or search the web to find an online support group. There are plenty out there. It can be very helpful, for a number of reasons, to reach out to people with our illness. We need to stick together. Best of luck to you!!

  4. Em says:

    The natural approach is a challenge on a fixed income and many doctors think it is hogwash-I disagree and did find an NP who does not have a problem w/ this approach altho no insurance will pay for such. A lot of my work I have done on my own through trial and error. Cymbalta and Lyrica did dreadful things and of course the doctor I had at the time accused me of making it up and said if the meds did not help I did not have fibro and started testing pressure points which were not pressure points of any kind. If it looks like a duck-exit quickly!
    Diet, Tai Chi, walking and essential oils have helped.

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