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Journey to the diagnosis

Nov 14, 2016 2:08 PM

Hello. I am new here :)

I have a question:
How was your journey to get diagnose(s) and treatment?

My journey has been a chaotic:
First doctor: "It will get better soon" ( November 2013)

Meanwhile I have been in 3 gastro surgeries (First time I removed my inflamed gallbladder where all pre-tests was negative) and more than 10 hospitalisations.. Almost every time no results..

Primary doctor sent me to rheumatologist august this year. The rheumatologist sent me out after 20 min and told me that my blod test was negative and my symptoms(that did not vote in reality) was not typical. I was healthy.

Two weeks prior I was rushed to hospital because of a seizure(non-epilepic). They did not find anything wrong and sent me home with note healthy.

The next stop was a psychiatric hospital where they could not help me because of to much problem with my physical health..

In January I am going to a endocrinologist to find out why hypoglycemia..
And the next place my primary doctor have to send me to is a dermatologist..

I have no idea what to do next.. I have health issues on almost every part of my body... Joint pain, muscle pain, headache, rashes, raynauds syndrome, an immune system I don't get how it is, fatigue, seizures, dry eyes and more..

Have anyone any ideas what to do next?

Nov 15, 2016 11:54 PM

Welcome! Sorry to hear of your frustrations. My only recommendation is write everything down.

Nov 16, 2016 1:35 AM

Hi and welcome to the community. I'm sorry to hear your frustrations on your journey. Unfortunately for some people it has taken years to get a diagnosis and most of us have been pushed from pillar to post then made to jump thro hoops before we even come close to a diagnosis.
With all your symptoms I wouldn't be able to even guess what conditions you have....by the sounds of it you probably have more than one.
Keep going back and keep pushing for answers, you will eventually find then.
Sorry I can't be more help sending you { { { BIG GENTLE HEALING LOVING HUGS } } } XX

Nov 16, 2016 4:19 AM

Welcome to the community IceAki. I am sorry to hear about your struggle to get properly diagnosed. I had to go to over 20 different doctors until I finally met a real pain specialist who understood chronic pain and was able to help me (but it still took a long time to get better). I recommend that you go see a pain specialist at a pain clinic who applies the state of the art "multi-modal pain therapy", which means he/she doesn't focus on one single treatment/problem but rather attacks the pain from all different angles which includes meds, physical therapy, relaxation exercise, helping you to learn how to deal with your pain in daily life and how to get back control over your life and not having the pain dictate what you can and can't do. And a lot more. I assume you've made the experience that the doctors you have seen so far have always focused on one single thing...

Nov 16, 2016 5:00 AM

Hello Daniel. Yes I have experienced that a lot of times.
And because they focus on just one single thing they always say: "I don't know why and since I don't know, I can't give any treatment with no diagnosis.."

Since no positive results or diagnosis I end up at a psychiatric hospital where they can't give any effective treatment..

Thanks for the tips Daniel ! I will take it to my primary doctor and get her to send me to a specialist :)
In Norway it has to be your primary doctor who requests for specialists. (If you don't want to pay for it yourself.)

Nov 16, 2016 7:40 PM

Welcome IceAki! I'm sorry to hear what you've gone through. As hard as it is try to be patient and document every symptom. My fibro symptoms started in 2007 but wasn't officially dx until 2012. There have been many other diagnosed issues since then.

You mention Raynaud's. Is that an official dx, or just symptoms you've witnessed? I have the symptoms but have not yet heard it happen in the presence of any doctor. However, I've had extreme thirst with dry eyes, nose & mouth along with pain. It was dx buy oral biopsy in 2015 as Sjogrens. I also have hypothyroidism. These are Autoimmune disorders and along with fibromyalgia, they all share many of the same symptoms. You should consider seeing another rheumatologist, as many of them (& other doctors) don't believe in fibromyalgia. Hugs love and prayers you get answers soon! 🙂💕🙏🌸

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